How Life Happens

I love days when things just come together

2012-01-27T14:04:00.000-05:00

Some days things go really well. From the time you wake up until the time you go to bed everything works out great. The thing is, though, is that those days are so...very...infrequent.

Most days I rush around trying to check off 2 items of my to do list. Yes, you read right - 2 items from a to do list that is at least a couple of pages long. The reason I have it set at 2 is because I think 3 is reaching too high most days. Experience tells me that I just as often as not hit the 2 items so I see no reason to mess with a 50/50 record by upping it to 3!

Today, however, is one of those magical days when great things happen even though I'm not checking anything off my to do list. It almost makes me want to stop the day now because I'm not sure it could get much better as the day goes on, but boy would it be fantastic if it did! And I have a feeling it will....today is just one of those great magical days where a lot of things come together on the same day.

Emma went to school in her pull-up today. Not a diaper, a pull-up. This is a very big deal in our world. She also went to school with a spare change of clothes just in case. And guess what?
She came home in her pull-up! She used the potty at school and did not require a diaper change. Her aide left me a message telling me how proud she is of Emma. I like her new aide, and now I like her even more for her kind message with italics and smiley face. I like smiley faces :-) Emma does not come by smiley faces or stickers for good work all that easily.

When Emma was settled in the house I looked in her notebook and read how great she is doing with a quick response on her listening check each morning and that the team is now introducing her eye gaze device for her to select the LING (listening) sounds. She even picked one correctly with her eye gaze device on the first try. In her notebook I also saw a note that our trial of the eye gaze device was extended until Feb. 22! That gives us almost another month to see what Emma does with it, which is really helpful in our decision making process of what device to purchase. She is just warming up to knowing how to use it - and at the age of 4 it still amazes me how quickly she catches on to all the technology we show her! - so handing it back next week would not really give us an accurate trial of the device.

On Martin Luther King, Jr. day we stopped by Emma's hospital to drop off her non-working loaner power wheelchair. Chris had the day off and was able to help me get it there because it is hard to load/unload it from the car when it has power and even harder when there is no power. It hasn't worked since we moved and I've really been itching to get Emma back to working on learning to drive a power chair to give her a taste of increased independence. I was thinking about the chair today and received a call from her hospital that it is all ready for her! The battery was just too low that it wouldn't charge. It is now charged and ready for Emma to drive it about. I'm planning to pick it up on Monday so we can have it for her PT evaluation scheduled next Tuesday. Emma needs extra PT in addition to what she has at school and one thing I want them to work on is driving a power chair. The timing of the fixed power chair is just perfect.

Today I haven't checked anything off my to do list and yet it's already been a great day. I think I'll save my to do list which includes calls to make appointments, insurance referrals, getting insurance to cover some of Emma's essentials, etc. for Monday. Today is a great day and I want to just enjoy it while it lasts for they don't come around that often and when they do they are meant to be savored.

Potty training update

2012-01-25T20:34:00.000-05:00

There are a few people who asked for more information on the potty training, so I wanted to post an update on how it is going now that we have the new supported toileting seat.

The potty training is in full swing! Emma seems to love her potty seat, loves going in the actual bathroom, loves washing her hands afterwards, loves helping me switch the light on/off, loves the praise she is getting. She really is ready for this stage of her life and I'm happy that we are able to support her in meeting such a huge milestone!

The biggest issue with our potty training is that she still is not able to tell us when she has to go. She does have a sort of fuss, but it could be a general you're not paying me any attention fuss or an I have to go to the bathroom fuss or any number of other reasons why she might want to be a bit fussy. Each time she does fuss, though, I ask her if she has to go potty and give her the Yes/No hand gesture to tell me and each time she does respond. Truth be told I wasn't so sure in the beginning if she was saying Yes/No with intention when it came to the potty questions. But, she has totally made a believer our of me! Emma knows when she has to go - and always picks the correct hand. There were a couple of times when I thought for sure she didn't have to go but since she said Yes I put her on the potty and sure enough she went! I shall doubt my Emma no more - it's completely evident to me that she does not want to go in a diaper anymore and would chose the potty if given the opportunity.

The other issue with the potty is that Emma can't sit or stand independently, so it makes potty training harder than wearing a diaper on her caregiver (i.e., usually me). I had her in diapers but today switched her over to pull-ups. Our bathroom does not have a changing table in it or anywhere to put Emma to put on her diaper that is pretty much always dry. So what winds up happening with the diaper is that after she goes potty I take her to another room or lay her on the kitchen floor to put on her diaper. Then, I take her back to the bathroom to wash and dry her hands and mine and then take her back into another room to continue whatever we are doing. With the pull up I basically pull down her pants and pull up, put her on, take her off and pull up her pull up and pants, wash our hands and then go about our business. This is much better on my back so I decided to implement this method sooner rather than later. I think the switch to pull ups is a good one and hope that it continues to work out for us. For now, though, when she is not at home we will continue with the diapers. We are not trying to potty train in public right now (the only exception is school) since Emma is not very cooperative in public restrooms and we don't have all the logistics of it figured out just yet. One step at a time......

And I'll leave you with a couple photos of Emma working on kneeling while watching Sesame Street. She loves that show and I let her watch a bit after school while I position her to work on certain skills such as sitting, kneeling, pull to stand, etc. It's quite sneaky of me since she has school and therapy in the morning before she comes home for lunch and a bit of tv followed by a nap. This week she was interested in kneeling....that is until she wasn't!

Interested in kneeling and talking to Abby Cadabby

I think she is saying "Mom, give me a break! Can't I just get a little snuggle while I watch the tv????"

Notice that she was doing so well that I felt OK to move away from her to take a photo? Way to go my Emma Bean!

Not so wordless Wednesday

2012-01-25T09:58:00.001-05:00

I mentioned that I'm taking an online photography course. As you may have guessed, this requires me to take lots of photos. Not that I needed a reason to take lots of photos...the main different is that now my photos are looking better!

Here is a photo from the other day. Emma was in her walker, playing ball with me while in her KidWalk and I snapped a few photos of her in full on happiness mode.

**LOVE** my Emma. Love this photo! Love how all her hard work is paying off and she is able to move around a bit more in her equipment.

Little updates

2012-01-23T14:55:00.000-05:00

The other week at school Julia's class was studying the letter L. They had an activity where the children finished this sentence: "Love is ...." and then they illustrated their sentence and it was put on the bulletin board outside their classroom. Julia wrote: "Love is making crafts for my sister!" and her illustration is a picture of her and her sister with a heart and the word love. My heart melts every time I think of this picture and sentence. Julia is such a special little girl. How lucky we are to be blessed with such amazing little girls!

In other news, Emma received her new toilet seat today! I've posted on here before about our goal to potty train Emma this year - or at least get her into pull-ups most of the time. She is doing really well at home and is mostly dry and using the baby potty instead of her diaper. She started doing well at school, too, but she now has a new aide and is giving her a bit of a hard time and is refusing to sit on the potty seat at school. I tried to get her on the seat with her aide at school and Emma refused me, too! She can be quite stubborn when she wants and her legs are really hard to bend if she doesn't want them bent. Once Emma gets more comfortable with her aide she should start to cooperate more with the potty training. In the meantime we are working hard at home to move from diapers to pull-ups.

I'm thrilled that Emma's Rifton potty seat arrived today! It's the same one she uses at school so I'm hoping using it at home should make her more comfortable with using the same model at school with her new aide. Here she is - fully clothed - testing out the seat settings while watching her beloved Sesame Street. She looks like such a big girl in her potty chair, right?!!!

The most exciting part of this chair for me is that it can be rolled over the toilet so I don't have to empty the chamber - score one for me!!!!! Or, it can be used anywhere in the house with the chamber attached. As of now I think we'll mostly use this in the bathroom because Emma is a big girl and needs to get used to going in the bathroom and having a bit of privacy.

I think we'll have to take the baby potty we've been using with us when we are on the road because right now we don't know of any fully supported portable potty chair. Anyway, we'll figure it out as time goes on like we always do.

Valentine's Day Thoughts

2012-01-22T21:04:00.000-05:00

We've started to decorate for Valentine's Day around here and it's making everything a bit more fun.

Last week I decorated the tin mailboxes from the $1 bin at Target for the girls. Each has their own mailbox and I plan to use them to stash daily treats or love notes. I think I'll start this on Feb. 1st and continue until Feb. 14th.
I printed out some little Valentine's cards to give to the girls. Julia has one already (and is sleeping with it!) and is asking to see the rest of them. She was told she will get them over time - not all at once and she immediately started giving me ideas on when I should give them to her. I think this idea is going to become a tradition based on how much she loves it right now!
We have a heart wreath on our door and Valentine's Day gel clings on our front window to put us in the mood.
I've added some pretty pink ribbons to items on our mantle and I'm hoping to add a Valentine's Day banner if we make one during our craft nights.

I know it's not Thanksgiving, but Valentine's Day always makes me think of the things I am thankful for in my life. Right now I'm thankful for:

My parents. They are wonderful all the time! But recently they have made some car troubles a lot less troublesome for us. Thank you!
My children's laughter.
Our nice home.
The opportunity to take an online photography class that is giving me a lot of information to take better photos but is also a ton of fun!
My hot cup of tea that is warming me up a bit. And our electric blanket to keep me toasty and warm at night!

Emma walking and playing ball

2012-01-20T14:03:00.000-05:00

Emma has been working on walking at school in a Rifton Pacer gait trainer. Her PT really thinks that Emma will take off on walking once she gets the hang of it - if she is motivated. The common theme with Emma is that she does what she wants when she wants to - my Emma, she's not really a people pleaser like Julia! She is motivated by silliness, roughhousing, flying through the air, slides and playing ball. I know her PT has figured her out by now because she mentioned at her recent IEP meeting that Emma isn't the delicate flower she originally thought when she met her. No one that knows Emma well would call her a delicate flower!

To help with her walking goal at school I've been giving Emma more time in her KidWalk gait trainer at home. When used "as is" she tends to get herself "stuck" in it with her legs forward and then she doesn't know how or isn't able to pull her legs back to propel herself forward again. To combat this, I've started tying a scarf around her thigh to the back of the KidWalk to prevent her legs from going all the way forward. This is working really well and letting Emma walk around more without me helping move the walker from the back. It's also making it easier to give her more time in the gait trainer for exploration because she can do things like walk around the kitchen and check out things while I'm cooking and I can help her when she gets stuck in a corner of bumps into a cabinet but I don't have to stop everything I'm doing to help her walk.

Today we were playing ball in the kitchen. I had an empty box for her to toss a small ball into and she LOVED this game. We did it different ways - her holding the ball and walking, walking to the ball, kicking the ball to the box, etc. Here is a short video I took of her walking in the KidWalk and having fun. You'll notice that she is able to walk without me holding the back of the walker to assist and that she has the scarf tied around her left leg. Emma really is making a lot of progress in so many areas and I sometimes forget to toot her horn.

So here is me tooting the Emma horn - toot toot! Enjoy!

Mealtime Communication

2012-01-19T23:19:00.000-05:00

I've been trying to have Emma "formally" communicate a bit more during meals. This is a bit hard for both Emma and us, but I'm convinced it will help in the long run. Because we are not always there to feed her and others might not know Emma's subtle communication methods I would really like to give her a voice during meals that is understandable to others outside of me and Chris.

Emma is excellent at non-verbal communication - batting my hand away if she doesn't want food, opening her mouth and even sometimes saying aaahhhh when she wants more, reaching out for what she wants if we give her a choice, leaning over in her chair if she doesn't want that person to feed her (she really has a strong preference to have me feed her), face lighting up if we ask her does she want something that she does want, etc. She is also excellent at crying and whining during meals. Oh, how I love my girl!

In Proloquo2go (on the iPad) the Meals & Snacks option has two items - eat and drink - and we have a cut out cover that goes over the iPad to make it easier for her to select her choice. I took a video of our lunch session yesterday and it went pretty well in that Emma eventually chose the items she wanted on the iPad. You can also see a lot of her non-verbal communication in this video along with hearing her more frequent vocalizations.

I'm happy for this progress. Slow and steady progress wins the race.....slow and steady progress. Learning to eat is a slow process. Learning to communicate is a slow process. Learning to communicate while eating is a s...l...o...w process. I certainly wouldn't mind if it sped up a bit, but I'm happy for the strides Emma is making and that all her hard work and determination to eat table food is working. Seriously, Emma rocks my world!

Cutest little stinker - caught on camera

2012-01-10T21:19:00.001-05:00

Tonight was girls night at our house. Every now and again I've taken to kicking Chris out of the house so we can have a fun girls only evening. The girls love the quality time and Chris gets a much needed break.

Tonight's highlights:

Crafting custom headbands with Julia from a kit she received as a present. This will be a multi-night activity since it requires quite a bit of time for the glue to dry in between decorations.
Emma laughing and laughing while pushing the baby in the stroller. She even took some steps on her own holding onto the stroller handles with very little trunk support from me.
Julia interacting with the Ken doll. When I had him kiss a barbie - and then the barbie gave him a piece of her mind - she thought that was a hoot. She doesn't think girls and boys should kiss and I loved hearing her barbie dialogue after the kiss! Adding Ken to the mix really is quite fun!

But the real highlight was playing with the floral beads I had in water in a shallow glass pie pan. The girls had a ball with them! Here's how it went down:

Julia showing Emma the beads and how she puts her hands in them, Emma decided to put her hands in and they shared the pan for a moment. Emma decides the beads are hers (actually, they are!) and starts to pull the pan over to her side of the table and pulls so hard it almost flies off the table.

Here is how it ended:

Emma with the pan full of water beads, Julia with an empty cereal bowl.

Whenever anyone meets Emma and doesn't know her well they always comment "what an angel" she is and when I tell them that she isn't an angel at all, she is a class clown and even a bit of a troublemaker they look at me like I'm crazy. Because, you know, total strangers seem to think they know my daughter better than me.

But it's true - my non-verbal, non-mobile little girl is ornery, stubborn, ready for any adventure, and loves to laugh at people working. We love her so much that we know this about her and we give her many opportunities to show us this side of her personality instead of only the "angel" side.

And I caught it on film. And I've shared it with you. And so now you know......Emma's the cutest little stinker around!

And we're off to a good start!

2012-01-08T21:22:00.000-05:00

Our life has been filled with hustle and bustle since the New Year began and I just want to take a moment to update on a few things going on so far this year.

Julia's swim birthday party was "THE BEST BIRTHDAY EVER" according to her. That's just what this Mommy needed to hear ;-) Note to self - always bring double the amount of drinks and order double the amount of pizza you think you will need so you don't run out! Whew - those little children were HUNGRY!
Emma's secondary insurance approved for her "toileting" system after it was denied by her primary insurance. That is just a fancy word for an adapted potty. The one we are ordering is the Rifton Blue Wave in size small and is the same one she uses at school. Or, I should say sits on at school but must have performance anxiety there. Hoping to get the toilet training under control and well on our way to pull ups this year. She is already doing great at home, just not so good outside of our house so that is where we have to make the most progress. I'm very hopeful that the Rifton seat will help us get her going in the actual bathroom and avoid using the potty chamber all together because Emma is a big girl and eats like a big girl and using an actual toilet would be something great for my big girl (and her Mom). Estimated time of arrival is 2 weeks, which gives me a bit of time to figure out where we can find room in the house for yet another piece of equipment.
In a move that almost made me faint, Emma's primary insurance approved her new wheelchair! I think it is the first approval letter we have ever seen from them and Chris suggested we frame it - and I don't think he was joking, either. That's how excited we were to get it! Still likely to take a couple/few more months before we receive delivery of the chair because it - like many things Emma - is a custom chair with a custom seating system with a custom headrest with a customer seatbelt, etc. and so that takes a while to get it all together and ready for Emma. Still, I'm super excited that (while it took 3 months to get the approval) it is one less fight ahead with me on insurance. God is good!

Let's hope the rest of this year continues as good as it started!

Birthday Circle

2012-01-04T22:14:00.001-05:00

Today we celebrated Julia's birthday at her school. Birthdays are a big thing in Kindergarten and are celebrated by the whole class with a Birthday Circle. This is a new tradition to us and I just love it!

During the Birthday Circle, the birthday child sits on the special cat chair (Julia couldn't wait to sit on that chair!) that is usually used by the teachers to read books during circle time. The teachers and the students in the class sit on the carpet in a circle and each person is asked to pause and reflect for a minute on why they like the birthday child. Then, each person in the circle says something that is special or fascinating or wonderful about the birthday child. Afterwards we sing Happy Birthday and move the name/age card from the one row to the new, older age row. Family is encouraged to join in the birthday circle and so Chris and I attended it for Julia today.

It was so wonderful to hear what the children and teachers had to say about Julia! There were a lot of comments on how kind Julia is, how she always plays with the other children and never tells them no when they ask to join in, how she shares so readily, how she is always ready to help her friends out. My absolute favorite remark, though, was when one of her classmates burst out that he likes Julia because she has a GREAT heart. I think that totally captures Julia! It actually made my eyes well up a bit. Julia sitting in the middle of the circle looking so proud and at the same time checking on me with her eyes to make sure I was listening to what everyone said and when she could tell I did she gave me this little smile. Both teachers also commented on what they like about Julia and her one teacher mentioned that her classmate who said she has a Great heart really summed up what Julia is all about while the other teacher said that there is nothing that she doesn't like about Julia - she loves everything about her and mentioned some specifics and said she and the class are so wonderfully lucky to have her as a friend. Then the offered to let Chris and me comment and we added what we love about Julia and I mentioned her silly side, her great laugh that always keeps me smiling and how she is the best big sister I have ever seen.

The Birthday Circle was such a positive experience and so unique! I just loved everything about it. After the circle and the song, it was time for lunch so Chris and I stayed and ate with the class. Chris acted very goofy and the children just loved it! I stayed for the treat while Chris went back to work. Julia made the pretzel turtles with M&M candies on top for her classmates and they were a big hit. After distributing them to the class she was able to pick a classmate to join her in going around to others in the school to give out her treat. It was so funny to watch all the children start to lobby to have Julia pick them to take with her, but the teacher quickly dispelled the children to allow Julia to pick without pressure. Her friend and I went along with her and I loved meeting the different teachers she liked so much she had to share her birthday treat with them. They made such a big fuss over her and the treat and Julia was really shining throughout the whole adventure!

Julia's teacher asked me to come back again and visit with the the classroom and to bring Emma along next time. She didn't join us today because it was her first day back to school after the break and her schedule didn't match up with the time of Julia's event. I'm thankful to my father-in-law who came to the house to collect Emma off her bus and hang out with her until I returned home - thanks Michael!

It seems that we are having a bit of a weeklong celebration for Julia's birthday. We went to Build-a-Bear on her actual birthday since it was still holiday break, then today was her Birthday Circle and on Saturday is her party with her friends. It sure is a fun week for Julia and I'm so happy to have a whole week to focus on my special little girl!

One Little Word

2012-01-04T15:44:00.000-05:00

Last year I took the world Faith as my One Little Word for the year. It seemed a great fit with my state of life an it really served me well throughout the year. Although I didn't blog or talk about my word Faith too much, I did focus on it internally and wanted to continue with one little word in 2012. This year's word is Action.

Chris tells me it's a strange word for me to pick because he rarely sees anyone full of more action than me. But I think it captures what I want to do in 2012 perfectly. I want to take certain actions this year - action consistent with me meeting my life goals. It's about taking more intentional actions. The four areas I am planning intentional action around are family, photos, fitness and finances. I have goals for each of these areas and plan to track my progress towards the goals but don't plan on sharing too much about my one little word on my blog this year. So this may or may not be the last you hear about my one little word for this year ;-)

I have a feeling that 2012 will be filled with fabulous adventures! Let the adventure begin!

Happy Birthday, Julia!

2012-01-02T09:53:00.000-05:00

Dear Julia,

Today you are six! Mommy and Daddy can't believe how quickly the time is passing. It is such a blessing to have you in our life and we thank God everyday that He brought you to us!

This year has been filled with lots of fun and adventure! Much of it is captured in this slideshow video. The songs are so YOU (and you requested I use the song Oh Happy Day for this video!) and shows even more what a special soul you have. We look forward to helping make your 6th year just as special!

Happy Birthday, Julia!

Love,
Mommy and Daddy

Top Ten of 2011

2011-12-31T12:31:00.000-05:00

Our Top Ten of 2011 (with a couple of details blocked out for privacy):

Christmas 2011

2011-12-30T21:04:00.000-05:00

This year was another wonderful holiday season for our family. I count it as a blessing that everyone in our families are healthy this year and we were able to celebrate the season together. This is something I used to take for granted but as I get older I consider it a blessing indeed.

The girls are at the age where they are familiar with the Christmas season and look forward to it all - the goodies to eat, the parties with family and friends, singing Christmas carols, picking out gifts for others, thinking of gifts they would like to receive, sitting on Santa's lap, celebrating Jesus' birthday, looking at the Christmas lights at all the houses, etc. There really is so much that makes this season special and they are really tuned into it this year!

Julia had a day project at school to draw and write about their favorite holiday tradition. She wrote her favorite thing is going to MomMom and PopPop's house for Christmas Eve and seeing all her cousins and family and eating dinner there and seeing Santa visit the house. It warms my heart that she is more focused on spending time with family than the presents of Christmas morning.

Each year the Cochlear Implant group at Emma's hospital has a Christmas party with a visit from Santa. Emma fell quick and hard in LOVE with Santa! She was squealing and screaming and kicking her legs to get over to him. We had no idea she would react this way because last year she wasn't so happy with Santa. Each encounter with Santa during the season got the same reaction - lots of love! I could swear that I sometimes see sunbeams shooting out of Emma's head and eyes. She is so expressive and full of happiness and sunshine and it is so hard to feel sadness when you are in her company. It's an amazing gift that she has and she is more than willing to share it with everyone she meets! I can assure you that Emma's reaction to Santa over the season had more than a few people smiling wider than usual.

This year we continued some old traditions and made a few new ones.

The girls and I made another gingerbread house. We use a pre-made kit because I don't really like to bake all that much. This year we finished the kit in record time - our attention span for it was a bit less than last year. Emma's school Christmas party had graham cracker houses for us to decorate and the girls really seemed to enjoy that! They each had a house to decorate and the teacher had a sheet of paper made up with the symbols for each of the candy on it so Emma could choose what she wanted to use to decorate. I loved that idea! I think I'll do that for our family gingerbread house next year if Emma doesn't have another communication system in place by then. This meant that our gingerbread house count for this year was a whopping 3.

We did a lot of family movie nights where we watched the Christmas movies on TV. We turned out the lights, left on the Christmas tree lights and spread some blankets and pillows on the floor, added a bit of snacks and enjoyed the night together. These nights are some of our best times together.
The girls and I attended the sing at the senior center again this year. My Mom's group from when Julia was born still gets together frequently and one of the girls coordinates visits to the senior center that her mother-in-law attends. The seniors love seeing the kids, the kids LOVE to perform for the audience, and there is a bunny there that gets lots of extra attention from all the kids. This is such a great activity for the children and it really is a great way to put the spirit of the season into action.
Julia helped me bake Christmas cookies again this year. She gets better and better every year and is quite creative in her colors and shapes. She is also a master taste-tester of the cookies which could be why we didn't have too many extra to share with friends this year. Did I mention that I don't love to bake? Well, I do like it but only in moderation and when you pair this with a house of taste-testers doesn't give me lots of extra cookies for sharing outside of our get-togehters. The cookies were very good again this year and next year I'm thinking of picking a signature cookie and making extra of that kind only and sending them out to friends. Here's to hoping!

On Christmas Eve we laid out cookies and a note for Santa, sprinkled reindeer food on the lawn and then went to the same mass with my parents and headed back to there house for a light dinner. We sang some Christmas carols and a few of the girls played some carols on the piano. On Christmas day we did karaoke with the new machine that Mary got from Santa. It was great fun even if it wasn't so great on the ears. Also, each of the children performed after dinner. There was some piano playing, flute playing, irish dancing, and standing. It really is nice to see everyone showcase their talents!

Chris' parents came over for Christmas breakfast and it was so nice! The girls loved showing off their presents and playing with MomMom and PopPop. It made for a very nice morning and we hope to have them over again.

PopPop loved his gift so much he actually hugged the box! Horray!

Happy Birthday, Jesus! I hope we manage to keep the spirit of the season alive throughout the year.

Overheard in our house

2011-12-20T21:14:00.000-05:00

If you were a mouse in our house, you might have overheard some of the following:

Julia: "Mom, I made you this Menorah. I made it as a surprise for you and it's very special. I made it for you because I knew you always wanted a Menorah." Me: "Thanks - it's the best Menorah I've ever seen!" What I didn't say was that we are Catholic so I never even thought about getting a Menorah, but if she made one special for me because she knew I always wanted one then it's my most favorite Menorah of all time! And she was so observant to realize that is the one decoration that doesn't show up in our house at Christmas time.
Julia: "When Santa brings my coach..." Me: "How do you know Santa is going to bring the Coach?" Julia: "Because I already put my order in with him. Remember my note? It had the 3 things I wanted on it." Oh, to be so sure of yourself!
Julia: "Emma, that is NOT nice" sob, sob, loud sob. Me: "That's right Emma, Santa is watching you and you don't want to get on his naughty list." Emma: hysterical laughter, more hysterical laughter, falling over from laughing and laughing some more. Heard right after Emma grabbed Julia's hair and pulled it during a game of Crazy Eights. I don't think Emma did it on purpose, but she sure does love to watch others cry and thinks it's the funniest thing ever! It does not endear her to the person crying, however ;-)
Julia, Chris and Emma munching on Christmas cookies. Emma crying where hers is gone and demanding another. Chris yelling at Finnegan to stop licking Emma to get all her crumbs. Julia and Chris just sneak into the kitchen and take more and I wonder why it's taking me so long to build up a stash of Christmas cookies this year.

Lots of fun happening around our house this time of year. Both girls are now done school until next year so we have lots of plans to sleep late, hang out with friends, and take some trips to the local museums.

Christmas from years past. How is time going by so quickly? My babies are growing into lovely little girls.

Time and some random nonsense

2011-12-15T10:55:00.000-05:00

The older I get the quicker the time seems to be going by. I see the girls growing up right before my eyes and want the time to go a bit slower so we can make the most of these years. I truly feel like these past few years with the girls have been the best of my life and I think there is something magical about seeing the girls grow up and come into their own a bit {really, they are still only 5 and 4 so plenty of time to come into their own}. Each day I feel a bit of magic.

And I also feel some of the not so magic. You see, there are the pesky loads of laundry, never ending housework, grocery store runs, cooking, etc. That stuff is not so magical but still necessary. I get it done but my house is never in perfect order. If you stop over - even announced - it's likely that many things will be out of place and there will be dog hair all around. It's just the way we roll around here and I won't apologize for it at all. I vacuum every night but our beloved dog still seems to have more hair to spread around the next day and the next day and the next day and we just don't really notice it around this house anymore. Each night I pick up all our clutter and the next day it is back again. This is sooooo not a Martha Stewart picture-perfect house. I've learned to let go of a lot of things now that I'm a mother. My old house was usually 99% tidy before husband and kids, but it never felt magical. Our life these days feels magical and that magic includes a well lived in house!

The other day I was listening to a tv show - while completing some non-magical tasks such as unloading the dishwasher or peeling potatoes - and they were saying how it's awful that some people don't even sign their own Christmas cards letting the company that makes them sign them instead. There is a lot of that type of messaging out there these days. Trying to make people live up to an ideal. And I just think this type of messaging is utter nonsense! Not to mention that it was stated by people who do not have any little kids at home.

Many days I fall into bed utterly exhausted with a back that feels like it worked more than it was meant to work (for all the silly people who ask my how my back doesn't hurt after moving Emma around all day, it does!) but there is always a smile on my face. Because no matter the season, no matter how busy the day was, I took time to share some special moments with my family. To do that I sometimes take the "easy way out" - including sending out cards with carefully selected photos (taken by me) that was pre-signed by a computer and the envelopes pre-addressed. I didn't include our typical yearly update letter and instead added a sticker to the envelope telling people about this blog so they can get their update here. I'm totally fine with this short-cut and have no problem with it at all!

Let's stop listening to the wild media messages and reclaim the magic of the season. Spend time with our family, let our houses be a bit messy, make crafts, read Christmas books, take a drive around town to look at all the lights, go to church to listen to the carolers, visit with others. This is how I want to spend my time and I want others to do the same. So, this year if you send us a Christmas card and it is not hand signed with a message to us, I'll be happy to read your card and know you thought of us at Christmas amongst all the other things you had to do including experiencing some holiday magic with your family.

*****And I should now write a disclaimer that Chris thinks I shouldn't watch some shows because they just make me mad. I think I'll be taking his advice and staying away from such shows for a while.

Wordless Wednesday

2011-12-14T10:41:00.000-05:00

We've been busy around here. Enjoy!

I Love You {Finnegan}

2011-12-06T20:57:00.000-05:00

Emma has been very quiet lately. She used to make more vocalizations in the past than she does now. I am not particularly excited about the quiet time. I prefer chatter. Lots and lots of chatter. And the pitter patter of little feet. I don't get much of either from Emma, but I'm still keeping the Faith that both will come. I've pretty much wrapped my head around the fact that Emma will likely use an alternative to oral speech to communicate and that she might not walk. Walking to me isn't all that important, but the communication means everything to me.

Emma seems to be the most vocal with her dog. She love Finnegan and Finney is so tolerant of Emma. After all, Emma usually tries to show her love by giving her a big love bite ;-) Today Emma crawled over to Finney and took a rest on her belly. I caught it on camera and asked her if she loves Finney and then told her to say I love you. She smiled and then made an approximation of I Love You. I love it! She's never made the approximation of I love you for me, but she has done it several times for Finney. I'll take it.

Here she is in all her cuteness. Enjoy! And listen close at around the 16 second mark ;-)

Catching Up

2011-12-04T20:07:00.000-05:00

Nothing fancy tonight, just a bit of what has been happening here in bullet list since I'm in kind of a relaxed, lazy mood tonight ;-)

Julia and I were driving to a birthday party she had yesterday and we were talking about how her favorite subjects at school are the monkey bars and P.E. (gym). I decided to ignore the fact that monkey bars are not a subject and I asked her what they did in PE this week. She said they played soccer both days so I asked her if she liked soccer and she said it's not her favorite. I asked her what her favorite sport is and she thought about it for a while and then said very definitively "Bocce Ball!" I couldn't help but let out a few good for your soul laughs. She joined me in laughing and kept telling me that Bocce ball is definitely her favorite. I didn't know she like bocce ball so much, we have a set we used a lot at the old house and we'll have to find a spot around here that has enough of a lawn to play it. Yes, she isn't going to be a great athlete. Dancing is more her gig.
After I wrote the post on Emma's Tobii eye gaze trial mentioning that we might want to test the Eco2 next, I received a note the very next day from her SLP saying they wanted to talk to me about the Eco2 and that they think we should trial that system, too, and see which works best for Emma. I SOOOO love how in sync I am with Emma's speech therapist at this school!
The weather here has been unseasonably warm. We went and purchased our tree today and it was in the 60s. We were even debating if we needed a jacket or not! Last year we had the girls in 2 layers, hats, gloves, and boots to get our tree. The wind was whipping and we were so cold and a highlight of the day was the hot cocoa with lots of marshmallows afterwards. Today we found a truly mom and pop tree farm, had our pick the 3 trees they had that were around 6' tall (seriously! that is not an exaggeration! this farm seemed to really love the 3' tree...), and came home and had some water with ice in it. Of the two, I prefer the warmer weather but I wouldn't mind something in between.
Julia and I decorated Emma's wheelchair for Christmas. It has tinsel and battery operated Christmas lights. Emma was over the moon happy with the chair and couldn't stop laughing and squealing when she saw it. It made my Momma heart feel good to see her reaction! Julia then got a little sad. We eventually got it out of her that she was sad because didn't have any lights. I told her I would get her some and that made her happy. The next day I bought her a strand of the battery operated lights. We decorated her doll's stroller and then we all went to the mall that night. Both strollers sporting lights and Emma's with the additional garland. We had so many people smile and comment on how they loved the lights! It was so refreshing to walk around the mall and only get positive attention from people. Not one person said God Bless You to me! Believe it or not I usually get lots of well meaning??? people coming up randomly to me and Emma and saying that. For the record, I HATE it when they do that!!! So, I consider that a great trip to the mall. Plus, I loved watching the girls enjoying the lights on the strollers.

Lots of photos to share and I'll post some this week. Now, off to work on my Christmas to do list!

Eye Gaze device trial: Tobii C15 with CEye

2011-11-30T14:48:00.000-05:00

We've been working on a method of communication with Emma for a loooooong time now! We have a variety of approaches - picture cards, hand gestures, iPad, looking at things, etc. Most are initiated by someone other than Emma. I've been looking for a way that Emma can initiate conversations, tell us all the good things going on in her head, and let us in on all her jokes because this girl is usually smiling and laughing!

This year at school we have a huge focus on her expressive communication. Emma started using some scanning programs on a Dynavox and took to it pretty quickly. I talked about it in this post. Some drawback to this method are that it takes a long time to do the scanning and there are some challenges because of Emma's double whammy of hearing loss and poor motor control. I have always thought that an eye gaze system would be a good option for Emma. Last year we had a trial with the Dynavox with Eyemax eye gaze communication device and it was a disaster. Make that a DISASTER. I had high hopes going into the trial and came out feeling pretty defeated. While there are many people out that that use and love the Dynavox eye system, it was not a good fit for Emma and so we kept plugging along with our various communication approaches.

I belong to a yahoo group of Moms with children with CP and a few of the children are doing quite well with the eye gaze systems so I didn't give up on the idea of eye gaze for Emma. There were good parent reviews on the Tobii CEye and the PRC Echo2 devices so I talked with her SLP at school about wanting to try the eye gaze devices again. Yesterday, the sales rep for the Tobii came to school for Emma to trial the Tobii CEye device.

I was reserved about the trial. I remembered how excited I was for the Dynavox trial and I didn't want to be disappointed again like I was before. I decided to go in with an open mind and see what Emma wanted to do. No pressure on her or me. Right off the bat the sales rep. impressed me. He spoke right to Emma, gave her his business card first and then handed them out to the rest of us, asked her most of the questions. Emma took to him immediately. I'm sorry to say that it's all too often that people don't include her in the discussions just because she can't speak. This man respected her as a person and knew that she was the most important person in that room for the trial. It was very refreshing!

Emma tested the Tobii C15 and the C12 device. The Tobii C-Series family of devices are "portable communication aids for text and symbol based communication, computer access and environmental control. They are easy to set up and use, have batteries that can be replaced without having to shut down, feature side caps that can be changed and much more." (all items in quotes on this post are from the Tobii product literature) The C15 device has a 15" screen, the C12 device has a 12" screen. That is the main difference between the two. Both were outfitted with the Tobii CEye, an "optional eye control module for the Tobii C12 and C15. Accurate and precise tracking, works with most users, largest trackbox on the market."

What is an eye gaze device? "Eye control is an alternative and complementary input method to using a mouse and a keyboard. By looking at a screen you control the mouse and you click by blinking, dwelling (staring at the screen for a certain length of time) or using a switch." The computer has a touch screen so you could also access it with your hands and we also tested where Emma would use her eyes to pick a box and then we would click the switch to select that box.

I have to say that it was super easy to calibrate the device for Emma's eyes. It took about a minute! I was very impressed with the Tobii for that reason alone. After testing out several options, it seemed that Emma did the best with her eye gaze and a dwell time of 1.2 seconds. We navigated through several screens. There was a screen where she could pick a book she wanted to read and then it opened up and she could select the pages to have them read out loud. She did great with that! Here is a small video of her and the books that I took the second time she chose to look at books. We had been working on the books for a while so she was getting a bit tired when I finally realized I should take some video. The volume is low because she previously was playing music with the machine and her eye gaze and the volume was super high for that program so we had to turn it down.

We also had a screen where it looked like a storybook page and a child in a wheelchair was sitting at a table with his friends. There were bubbles on the table and presents around and Emma could use her eyes to select items. When she selected the bubbles with her eyes, a grouping of options filled the outside perimeter of the screen. She then "played" with her eye and selected a few of the options. One was "blow lots of bubbles", so her SLP blew bubbles for real. Then she chose "let me blow bubbles" so we let her try and blow them. She did a few other things, such as comment "this is fun", on this page and it really seemed to capture her interest. It was a nice way to interact and I could see this as a great tool for actual activities in the classroom where we take photos of the kids and put them in the scene and Emma could call out her friends names, tell them to blow bubbles, etc.

Another thing she did during the trial was look at some flash cards. We would ask her where is the *animal* and she would look at the screen and use her eyes to select it and then the device would speak the name. We only had one card up at a time, but you could put several up there and ask her to select matching items, odd one out, etc. I think she would have a lot of fun with this! Here is a little video of her with the flash cards, again she was a bit tired when I pulled out the video camera but she was still participating! The blue dot is what her eyes are looking at, in case you are wondering how to tell where she is looking.

We also tested out a fun little dice rolling page. It is a random dice rolling generator we could use for things like playing a board game as a family. Emma could use her eyes to roll the dice and then the dice outcome would pop up on her screen and we could then move her piece. We could likely even put a command on that page that says "Can you move my piece?" or "Your turn" or "My turn". I can see some really good options for this page! The nice thing about this, too, is that we could use our fingers to select the dice roller and just use the device to play without needing actual dice. It would let us interact with Emma a bit more and wouldn't put her as the odd one out.

Emma was really on a roll for this trial and so we put up a music page. Emma could pick between different music and turn it on to play. The rep then danced (see, I told you he related well to Emma!) until the music halted and she had to select more music to play for him to dance again. He suggested this was a good page to play freeze dance with her classmates. Emma seemed to really like this page, and it was a bit similar to Simon Says that I programmed onto her iPad that we would play sometimes. It just seemed so much easier for Emma to access the screen with her eyes than accessing it with her hands.

The trial lasted for about 1.5 hours. Emma was distracted for part of that time, but not as much as I would have expected. I was happy to see that she was interested in the activities we were doing on the screen with her and she attended to them for a long period of time! After all, 1.5 hours is a long time for a 4 year old to pay attention to something. It's also a long time for adults, but we were all so into the trial I didn't notice the time going by. Emma did so well that it was wonderful watching it all unfold.

So, where do we go from here? The rep. suggested we rent the device for a month through insurance instead of asking them to pay for the device right away. It is hard to get these devices paid for through insurance and he said there is usually better acceptance if insurance does a month's rental first. The monthly rental is very high, and the device price is even higher. I looked online and found our state's AT lending library has the older version of the device Emma tested available for an 8 week loan period. I think we might want to start with that while we get the ball rolling with insurance. I also think we might want to test the ECO2 device to make sure we are ordering the best one for Emma. Insurance won't pay for another one for a long, long time so we need to make sure we order the best device for Emma.

Once again I'm excited about the possibilities for Emma's expressive communication. I always thought her CIs would mean that she would talk, but maybe her way of talking will be different than I expected. Maybe she will talk with a computer. I am at a place right now where having her talk, in any way possible, is exciting to me. I am excited for her, excited for her future. I still remain positive that Emma will use her voice one day for communication, but until that happens we are pursuing other options and so far the eye gaze device we trialed yesterday seemed like the best option. The future seems very bright, indeed!

Craigslist Find

2011-11-28T14:08:00.000-05:00

We have a loaner power wheelchair for Emma that is not working. It hasn't worked since we moved and I have not been able to successfully troubleshoot the issue. I'm not sure if it stopped working right before or right after we moved, but the fact is that it isn't working. So Emma is not getting any use out of the chair and isn't learning to drive it. This is soooooo frustrating to me. I spoke with the fabulous Denise at our wheelchair clinic and she told me she would take a look at it if I can drop it off. The main hurdle in dropping it off is we don't have a wheelchair van to transport it. And we didn't have a long ramp to use in lieu of the wheelchair van.

About a month ago I put a Wanted ad on Craigslist for a wheelchair ramp that was at least 7' long. I sort of forgot about the ad (and kept trying to figure out a way to get the chair serviced!) until I heard from someone who was willing to sell me an almost-new-exactly-the-same-ramp-I-was-eyeing-up-on-the-internet ramp for $100. This is a great deal since an 8" ramp with an 800lb. capacity cost around $500 new. The ramp was in two pieces - you can take them apart if you need a narrower ramp - so I had to put it together for our use. It cost me $0.66 for the screws at Home Depot to put them together. The only hiccup to the ramp is that the ramp wouldn't go together without the handles in the up position. I suppose this makes the handles a bit quirky but it doesn't pose a problem for our use. We now have a ramp that I can use to put the power chair in the van for service and that we can use as a ramp for the back door to our house. I'm thrilled and hope to drop the chair off at the wheelchair clinic this week.

Here is a photo of the ramp in use at our back door.

I love it when we are able to make something happen for Emma that doesn't break our bank! I'm looking forward to putting this ramp to good use.

Dear Santa

2011-11-27T21:03:00.000-05:00

Julia is very excited about Christmas this year. She has seen some commercials on tv that really caught her attention - this is new because she has not watched tv with commercials until very recently. She heard about Moxie Girlz on tv and hasn't stopped talking about them. It helps that they have a bajillion commercials during her favorite show, Horseland, to market directly to the little ones. I thought I'd share her letter to Santa this year as I just love it!

I love how she remembered that Santa eats the cookies and milk we leave out for him. We haven't talked about that at all this year so she remembers it from the last few years. Also, when she was writing this she asked me is that all? after she talked about the cookies. She didn't want to have any more small talk with Santa and wanted to get right down to the details of what she wants. After she wrote Love Julia she decided she needed to tell him that she has been a good girl so she wrote it in above her name. At this age she isn't concerned about having all her words go in a line so she finished out her sentence by putting Good Girl on top of the I've been a. She added a heart, flower, and some special santa symbols for him. Love this letter! I love how she wrote it herself and only had to ask me for some of the spelling. My girl is growing up. She even used a period after the word cookies. She is very excited to put this in the mail to him and I just had to capture it for me before it's sent off to Santa!

Julia wanted Emma to write her letter to Santa tonight, but we are leaving that for another night. Looking forward to Emma's letter. I have to figure out how to go about writing one for her.

Tis the season! Let the fun begin!

Week of Thanks Day 6

2011-11-27T16:03:00.000-05:00

Today I am thankful for:

Getting together with young "old" friends
Easy hot lunches
Scooter riding children
Wii games
Holiday decorations
Conversations with neighbors
Selling unused stuff on Craigslist
Finding things we need at a good price on Craigslist

Until tomorrow...

Week of Thanks Day 5

2011-11-26T20:49:00.000-05:00

Today I am thankful for:

Warm weather days in late Fall
Twinkling Christmas lights making the evenings merry
Photos so we can go back and remember special, ordinary and everything in between moments
The towel service at my gym. It's such a nice feature of the club!
Waking up without an alarm clock
Homemade Christmas crafts - pulling them out each year and remembering the years all over again

Until tomorrow...

At Longwood Gardens yesterday Emma couldn't contain her laughter and Julia saw no humor in the situation.

Week of Thanks: Thanksgiving

2011-11-25T09:35:00.001-05:00

I didn't get a chance to write my post yesterday. We hosted Thanksgiving dinner this year and I roasted my first turkey. Everyone seemed to enjoy it and for that I am thankful ;-)

I am thankful for:

Our house filled with family on Thanksgiving. It's a great holiday made wonderful when everyone can come together as a family and have fun.
Everyone was in good health this year. We had no hospital visits even for routine things like therapy or CI mapping sessions. I love having a normal, dr/specialist/therapy free week!
The food we had on our table. This year we participated in several food drives for those who are struggling to put food on their table. We will continue to participated in regular food donations outside the holiday season because so many people are struggling and getting good food and nutrition shouldn't be so hard.
At the beginning of our meal we went around the table and talked about what we are most thankful for. I loved listening to everyone's responses and it makes wonder if the people in the store lines on Thanksgiving are missing out on the true spirit of the holiday season.

A little bit about my day (because in the future when I go back through my posts I'll wonder what the heck we did for this Thanksgiving day). The morning was a gorgeous 57 degree day and Chris took the girls and Brianna to the parade in the morning. They went for hot cocoa afterwards. Then they came home after the parade - but I was still watching it on tv! They were at the beginning of the parade line and the dancing/tv cameras were at the end of the line and so there was about an hour difference in the time they were done and the tv cameras were over. Their favorite part of the parade was watching the cheerleaders who were dressed up as reindeer do their cheers. I think the hot cocoa was a top second favorite!

While I had the house to myself, I put the turkey in the oven and set the tables. We had an adult table and a child table and both were set with my china. The children's table was set with the dishes from my grandmother because I didn't have enough of my own china. I loved that we used both sets of plates! It was very easy to prepare dinner because everyone brought a dish or more and my oven was dedicated to the turkey and stuffing. When most people were here there was a pick-up game of football outside. The adults and kids played, Emma cheered them on while in her KidWalk and I think it ended up with a tie score when it was time to come in for dinner. After dinner Chris showed the video from our Ireland vacation and it was fun to watch together.

Then it was time for a talent show. Julia did her Irish dancing - she's had about 5 lessons so far and is doing great! Brianna showed off some of her Karate. Emma really wanted to get in on the action and Julia reminded me that Emma can pull to stand when she holds my hands now - a recent skill - so we had Emma do her standing a couple of times because she just lit up with all the cheering for her. My heart melted at how Julia remembered that so we could include her sister - she is an amazing big sis. How lovely to see the kids show off the talents they are working so hard to achieve! The evening wound down with some games on the Wii that really woke everyone up. I think my neighbors might even have heard all the ruckus from the games and we wouldn't have it any other way. My niece Rebecca decided to stay over and after everyone was gone and the girls were in bed we headed over to the movies to see Breaking Dawn. I was surprised to see the shopping area near the theatre so filled with people before we remembered that the stores were opening at night on Thanksgiving. Ugh! We made it to the movie and it wasn't too crowded. When we came out around midnight there were huge lines outside the stores and we were happy to be headed home to be.

What a great way to spend Thanksgiving! Best wishes for a wonderful Thankgiving to you.

Until tomorrow...

Week of Thanks Day 3

2011-11-23T20:35:00.000-05:00

So, no video post today. I completely forgot to bring it up today since we were busy flitting about and now the girls and their cousin Brianna are all cozy watching a video and don't want to be disturbed.

Today I am thankful for:

Sleepovers. Last night Julia "sleptover" in my room while Chris slept in her room. It was great bonding time and I got to have some wonderful conversations with her. We also love when any of the cousins sleep over. The girls have so much fun with them! And it does my heart good to see Emma hanging with them as just one of the girls. They completely accept her for who she is and usually argue over who gets to move Emma to and fro - so cute!
Family dinners. My pumpkin pie is baking in the oven and making the house smell delicious. I am excited to host our dinner tomorrow and make my first turkey ever. Fingers crossed it comes out good - but I have lots of gravy in reserve just in case! Family dinners also mean everyone brings a dish making it less work for the host and lots of fun for everyone.
My helpful husband. I'm beyond thankful that we found each other. Who would have thought I would meet the love of my life on a dating site so many years ago! We are still so in love with each other and everything we've been through the last 7 years has only brought us closer together. I'm also especially thankful for his help today in getting ready for tomorrow along with him taking the initiative to clean the toilets - he's a keeper and he's all mine!
Home videos. Chris has been working on our summer vacation video and it's so nice to look at the video and remember our amazing family vacation to Ireland. It was incredible to have the entire family together in Ireland. I'm not sure if it will happen like that again, but I sure am thankful we have the memories and videos to remind me of that magical vacation.
Giggling girls. Right now I am listening to three girls giggle in the other room. It's the best sound in the world.

I'm off to see what all the giggle are about and hopefully join in the fun.

Until tomorrow.....

A week of Thanks day 2

2011-11-22T19:54:00.000-05:00

At dinner tonight we talked about what we are thankful for:

Chris is thankful for our health
I am thankful that today was the last day of school/work for Julia and Chris and now we are all off and plan to spend a lot of time together
Julia wanted to know why she is going last but said she is thankful that we are getting to spend Thanksgiving dinner with her "whole" family. I mean whole family. Like, everyone is coming here.
Emma was in an ornery mood and decided to whine through the conversation. I know she is thankful for a lot, but I think she would have been more thankful if we called dinner over and put her down to bed.

I suggested we take a movie of us all talking about what we are thankful for so I could post it on her tonight. I had no takers. Emma even cried at the suggestion. Maybe I'll suggest it again tomorrow only time it much earlier in the day.

I am also thankful for cars that work, hide and go seek giggles to end the night, and girl nights.

Tonight me and Julia are having a girls night. I'm about to bring our tea up into my room so we can snuggle in and watch the Dancing with the Stars finale before we settled into bed. Chris agreed to spend the night in Julia's room so we can have a full on girls night. This is a better set-up than our last girls night when I slept in her twin bed with her. I am thankful for a great husband who is swapping beds with Julia for our girls night so my back won't hurt for another week after our girls' night.

Until tomorrow....

Giving Thanks

2011-11-21T22:01:00.000-05:00

In honor of Thanksgiving, this week I'm going {to try} to post each day on things for which I am thankful.

Today I am Thankful for:

A healthy finish for Chris' marathon yesterday. Two people died in the Philadelphia marathon and I can't stop thinking and praying about that. I'm so thankful that Chris met his goal of completing his second marathon this year and I'm also thankful that he is taking a bit of a break before planning another one ;-) Which leads me to.....
I'm thankful for lazy Saturday mornings with my family. Sleeping in, hot breakfasts, pumpkin coffee, playing in PJs = weekend bliss!
Our family. The love and support they give us is amazing. We are so blessed!
Being a stay at home Mom. Every day is a challenge. Every day is different. I can't remember the last day I "stayed at home." I am so thankful that I'm getting this time to love, nurture, and spend quality time with my children. We are all better for having this time together.
Our new home that fits our life right now. The schools the girls attend. The progress we are seeing with Emma's communication and the self-confidence we are see in Julia.

More tomorrow.....

Holiday Prep

2011-11-14T14:51:00.000-05:00

This year I'm trying to get a jump-start on the holidays. I've been making lists for crafts to do with the girls, lists for Santa and family gifts, parties we want to attend, get-togethers we want to host. Yesterday we dressed up and I took some photos to start working on our Christmas card. I'm also starting to wonder what we are going to do for Julia's birthday party in early January that she asks about every day. She is definitely more excited about her birthday and party than Christmas, but don't let that fool you because her list for Santa this year is getting pretty long! With all this planning I'm hoping I'm not as behind as I usually am for the holidays - fingers crossed.

We are hosting Thanksgiving dinner this year and it will be the first time I'm making a turkey. Since the turkey is generally the start of the show on Thanksgiving I'm hoping it will be a whopping success. If not I'll just add extra gravy to save the day! I'm still working on the menu but I'm planning on keeping it pretty traditional - turkey, stuffing, cranberries, potatoes, veggies and rolls with pie for dessert. Emma has off the week of Thanksgiving and Chris and Julia have off on Wed, Thurs, and Friday so I'm looking forward to the extra time with them. I think it will be nice to have some help on Wed, too, to get the house and food prepped so we don't have to do it on Thursday.

When I was younger my Dad always took me and my sister to the Thanksgiving parade in town and I have so many memories of those days. I vividly remember how there wasn't a store open, not even a convenience store!, that day and no bathrooms to relieve our tiny bladders. As the years went on McDonalds started opening and we were able to get some hot chocolate to warm us up after the cold morning at the parade. These days things are different with so much open on Thanksgiving and I have mixed feelings about that - it's nice to have the convenience, but not so great that so many people aren't home with their families. This year (weather permitting) Chris is planning to take the girls to the parade! I'm so happy for them and hope they love it as much as I did, especially the finale when Santa and his elves make an appearance. Having them at the parade will give me a bit of time to cook a turkey and other fun stuff at home.

I found a few crafts that I'm going to make with the girls. In the past we had projects we tried to finish all in the same sitting. They usually ended up with me finishing most of the projects after the girls were d.o.n.e. Lately I've taken to presenting the project we are going to make and spreading the steps to complete it over a few different craft sessions and Julia was amenable to this change. This change has make crafting with the girls much more enjoyable for me. I'll post photos of the projects as we complete them.

Veteran's Day

2011-11-11T15:55:00.000-05:00

Today is Veteran's Day and I'd like to say how truly thankful I am to all the men and women who served or are currently serving our country. The sacrifices you make are so truly humbling. Thank you for your service. God bless you and God bless America!

I'm also reminded today of the effect Veterans have had on the disability rights movement. I'm not sure if many people are aware of this, but it was the WWII vets that really started the disability rights movement. Some came home disabled and wanted the same rights they had before they left. Others came home and had children, some of those children were disabled. Their generation said they fought for their country and they were not about to put their disabled or mentally challenged children in institutions. It was their strong spirit, their willingness to fight for their children's rights, that started us on the path we are on today where people - old and young - with disabilities now have protections within the law. And for this reason veterans have a very special place in my heart.

Thank you for all you have done and continue to do!

Faith

2011-11-09T14:19:00.000-05:00

I've been thinking of my theme for this year - Faith. Faith that all things are possible. Faith that I am exactly where I am supposed to be on my life journey. With a little over 7 weeks (yikes!) left in the year and with Thanksgiving coming up, my mind is spending some time reflecting on this year and I find myself often coming back to my theme of Faith.

I have to confess that there were parts of this year when I didn't always kept the faith. I wasn't sure that Emma would make as much progress as she has. I wasn't sure she would ever give a consistent Yes/No response. I wasn't sure she would participate in her new school program, that she wold make gains in her communication skills, or that she would figure out a way to walk in her KidWalk again after her growth spurt. I tried to keep the faith that she would make all these goals, I really tried, but sometimes my mind would just not stay on board. And I would worry. Of course I wouldn't let anyone know that I had anything but 100% confidence in Emma, but silently I sometimes felt a little bit of doubt and then I'd feel some guilt at my doubt. And then I'd notice a few new gray hairs and knew any worrying just wasn't a good idea ;-) and that I had to come up with a plan of action, because nothing comforts me better than a well composed plan of action!

It sometimes took the additional gray hair to remind myself that the theme I chose for this year is Faith and my plan of action was usually to practice it more, flex my Faith muscle so to speak. Over this year there were times when my faith was at a high and others when it was at a low. I think this is normal for me and actually think it's probably normal for most people.

I know that I've come a long way on my Faith journey this year. I rarely need to "borrow" faith from others these days. I spend most of my time believing that all things are possible and that I am spiritually and mindfully exactly where I am supposed to be on any given day. At this time of Thanksgiving, I have so very much for which I'm thankful. And I have Faith in what the future holds.

Sesame Place

2011-11-07T22:22:00.000-05:00

There is a wonderful amusement park in our area called Sesame Place. As the name implies, the theme of the park is the tv show Sesame Street. Characters such as Elmo, Zoe, Abby Cadabby, Bert, Ernie, the Count, put on shows, make character appearances and star in the closing parade.

But this is not an ordinary park; this is a park with heart. Every year they team up with Variety - The Children's Charity and close the park to the general public in the spring and the fall and invite families that have children with disabilities to come and have fun. And they do this for free. The only cost is for parking and all that money is donated to the local Variety chapter so they can continue their work dedicated to promoting and protecting the health and well-being of children around the world. Amazing generosity!

We have attended several Sesame Place days with the girls with the most recent even this weekend. It was a beautiful sunny, cool Fall day and the park was the most crowded I've ever seen. Chris' Aunt Mary Lou works there and she told us they sent out 15,000 tickets and I think the turnout must have been close to 100%. Emma's favorite tv show is Sesame Street and I think this year she appreciated meeting the characters more than years past. She kept trying to jump out of her chair to go up and greet them - it was the cutest thing! Julia brought her baby doll this year so she could introduce her to Sesame Place and both girls were treated to some special gifts by Aunt Mary Lou (thanks so much!!!)!

Julia has become unusually attached to her Snufalufagus doll and is using him as a stand-in for Puppy on our outings. Puppy is her most favorite stuffed animal and we don't let her take him places for fear of leaving him behind (a good rule implemented only after numerous late night searches that included car rides to locate Puppy). Emma loves her Zoe doll and wants to hold her in the car. She looks around for her when she is put in her car seat and when we ask her does she want Zoe Yes/No she always answers yes and makes happy sounds and movements when Zoe appears! She picked an Abby Cadabby doll as her vacation memento last year and it seems like Zoe is becoming more of a favorite than Abby.

Sesame Place has a few rides but a lot of climbing and gross motor areas. The park is very accessible and wheelchair friendly, but if you can't walk it's hard to participate in many of the rides. The nice thing is that there are a lot of shows/mini plays that happen throughout the park and a large parade at closing time. We arrived around noon this year and stayed through the parade. We didn't see any shows because we did do a couple of rides, the bounce mat area and met some characters and since the park was so crowded these each took a bit of time. Aunt Mary Lou suggested an area for us to camp out close to parade time and the seats were perfect! The girls really enjoyed watching the parade and having the characters do their musical dances right in front of them.

Thanks so much to Sesame Place, Variety, and all the volunteers that made this weekend possible! We truly are so lucky to have the opportunity to enjoy a great day out with our family.

School News

2011-11-03T22:49:00.000-04:00

Today Chris and I are feeling really good about the school decisions we made for both Julia and Emma. As a parent it is hard to know if we are making the right choices and it's wonderful to have a day when you can sit back, take a deep breath, and know that for now we are exactly where we are meant to be.

The future is so bright, she has to wear shades!

Chris and I had our first parent teacher conferences for Julia, making it our first parent teacher conference ever (because there is no way that I'm counting the endless hours in IEP meetings for Emma as a parent teacher conference)! I'm happy to say that they seem to love her almost as much as we do! They see the same sweet, genuine, caring, brightness that we see in Julia and are thrilled to have her in their class. Julia has been in kindergarten 37 days to date. Her teachers showed us her journal with her writing from day 1 to now and it is striking how mature it is getting after only 37 days. There is punctuation, capitalization, spaces between words now where it didn't exist on day one. She is on track for many of her pre-literacy and math skills, participates readily in all the class activities, and has many friends. They described how Julia plays with others, the activities she enjoys (dramatic play tops the list), and the unique qualities she brings to her class. It was wonderful to hear more about her school life from people who have been brought into Julia's world only recently. As I said to her teachers, Julia was born with a great heart and compassion and we can't take the credit for that but we are truly honored to get to raise her as our daughter.

Since it was parent teacher conferences, Julia had the day off from school and joined me to drop Emma off at school. It was her first time seeing Emma's school and she was so happy about it! Miss Anna (Emma's teacher), Miss Marie (Emma's aide), and many of Emma's therapists put out a warm welcome to Julia. Emma was smiling from ear to ear, too, while Julia toured her classroom, saw the equipment she uses, met her teachers and therapists and friends, and walked the school halls. Julia often wonders about Emma's time away from her and always has a lot of questions about Emma's school. It was so nice to be able to show her what Emma's day is like so she could put faces and places to my descriptions of Emma's daily routine.

As is typical, Emma rode the school bus home and Julia liked seeing Emma's bus and meeting her bus driver and driver's aide. My parents were here, too, since I was at Julia's school for the conference. Emma was delighted to see everyone waiting for her arrival! This child loves people and having her grandparents and sister greet her at the bus likely put the biggest smile on her face.

When I got home I looked in her communication book so I could ask her about her day and saw this note from her speech language therapist:

"Emma did a great job using the DynaVox (AAC device) in the classroom to make song choices. I have hand puppets for some of the songs that she likes to sing. We sang 5 Green & Speckled Frogs on Tuesday with hand puppets (which she loved!). She went right to that choice and used her hand switch to select it. I looked in my bag and realized I forgot the frog hand puppets (oops!). Then I told Emma "I don't have the frogs today, but I do have Twinkle, Twinkle and Old McDonald." Before I could look up to help her make the choice, Emma used the DynaVox to say Twinkle, Twinkle!!! She is doing so well :-)"

Our big girl is going places (with her communication!).

Wow! I have tears in my eyes writing this now. This is only the 2nd time Emma has used the DynaVox ever and the first time in the classroom with all the kids in the room. And Emma wanted to communicate! She wanted to play the games. She wanted to use the DynaVox to tell her SLP what song to sing. And, the 5 Green & Speckled Frogs is the 6th choice out of 6. Emma had to use the head switch 6 times to get to that choice and then use her hand to select it. The DynaVox she uses is with switches, not eye gaze yet. The fact that she has figured out how to use this system after only ever seeing it for 2 times give me so much hope for her expressive communication options. Chris and I are 100% sure we made the right choice in moving - it's amazing how a different approach to communication can open our child's world.

Tonight we will rest a bit easier knowing we are exactly where we are meant to be and that is not something we take for granted.

Halloween Adventures

2011-11-01T11:11:00.000-04:00

What a fun halloween we had! Julia dressed up as a bunny and Emma was Cinderella and then we headed out for some trick or treating fun. This year there was snow on the ground - our first white halloween! - but much of it had melted and the weather was in the high 40s so it turned out to be a nice night for the children.

Our neighborhood is filled with children and all the kids on our block huddled up for a photo before heading out to trick or treat in our large group. They were so excited running door to door for candy and mostly remembered their manners. A handful of houses had haunted porches and the kids just loved it! I thought Julia would be scared but she held her own in the group and had a ball. Emma was thrilled to see all the children running around and not as interested in the candy gathering as last year. I forgot to bring her iPad programmed with Trick or Treat (like we did last year) and I considered going back to get it but decided against it - with so much action, lights, and kids there was no way that Emma would even look at her iPad let alone use it to say Trick or Treat.

Our candy bags overflowed with all kids of goodies. I think it must weigh 5 pounds. Tonight we'll go through it and select some to keep and then donate the rest.

Happy Halloween!

Seven Years

2011-10-30T20:31:00.000-04:00

Seven years ago today was simply wonderful! It was a Saturday morning and the air was crisp - exactly what you expect during Fall. There was a slight drizzle in the air that morning but it was all clear by the afternoon. The trees were full of color and there were lots of colorful leaves on the ground. It was the perfect wedding day.

Me and Dad stop for a last minute comment before he walks me down the aisle.

I woke up excited that I wasn't as sick at the previous night. I was able to get up and walk around and I was so happy! I called Chris that morning to see how he was doing and let him know that I was feeling a bit better. I knew he was worried about me because I was very sick the night before. Luckily the doctor had given me some great medicine to get me back on my feet and it did the trick.

We were saying that we couldn't believe we were actually married and laughed about it!

I remember our wedding day like it was yesterday and I'm stunned that seven years could pass so quickly. My Dad made sure all the leaves that had fallen were swept off the Church steps for all our guests. My Mom made sure our house was ready for guests to spend some time between our wedding and the reception. I went with my family and friends and had my hair done and was surprised that there was so much extra time between my hair and make up and the time I had to leave for the church. I didn't really know what to do with myself - I was anxious to see Chris and 2pm couldn't come fast enough for me.

The bubbles really made the day feel super festive!

That day we didn't know where our life together would take us. What we did know is that it felt so right to be together. That we were committed to meeting life head on together, for better or worse, for the rest of our lives.

And for the last seven years that is pretty much what we have done. I couldn't have asked for a better partner in life. Both of us truly believe that it was God that brought us together (and keeps us together!) and we feel blessed.

Thank you, Chris, for loving me so very much the last seven years. I'm not sure what the future holds for us but I am excited to meet it head on together.

Preschool - One month recap

2011-10-27T14:47:00.000-04:00

The past month has gone by so quickly that it's hard for me to believe that Emma is wrapping up her first month in her preschool. Emma attends school from 8:30am - 11:15am Monday through Friday and this is new for both of us. We are not accustomed to being apart and I'm happy to say that we are both mostly adjusted to the change in our routine. It requires an early rise time and neither of us are morning gals so I'm happy that Chris is around in the morning to make sure that we are up and about at the proper time. Our routine is pretty streamlined at this point with: time spent on the potty, drinking a breakfast smoothie, getting dressed and AFOs on, double checking to make sure her backpack is all set, and packing a snack and drink. School is at the other end of our county so I drive Emma in and have the bus drop her home.

Emma settled into preschool the first week without any issues and that could be because I stayed with her most days. She started to cry at drop-off during the second and part of the third week. It was the screaming sobbing cry that makes me want to run back and take her home with me. She knows when to pull out that cry and that it rips my heart to shreds. And, no, she wasn't laughing and smiling a few minutes later. I even had a couple of calls from her therapists letting me know how unhappy she was and hoping it wasn't them. Sigh. I - umm, I mean we - toughed out the 6 days of sobbing at drop off and they were replaced by smiles on day 7. Oh Happy Day!!!!

Emma has a communication notebook that we send back and forth to school. Each day the teacher adds a sheet of paper with the following sections: play time, circle time, small groups, snack time, therapy, other, notes/comments. In each section there is a set of PECS symbols and she circles the items they worked with in each section. This is really nice because I can look at the symbols and go over Emma's day with her. There is also a sheet that has the equipment along with an entry for the time spent in the equipment. One day I requested information on what equipment she used and how long she was in it so I know how to plan the equipment we use the rest of the day. The very next day this sheet was added to the communication notebook. Fantastic! I also asked about the potty and her snack and they added another sheet that updates me on them daily. Additionally, on the days that Emma has therapy the therapist includes an update in the notebook so I know what they did in therapy that day. I feel very well informed of what is happening at school and this makes it easier to part with my girl every day.

Emma has a lot of goals on her IEP. They are not easy goals and I'm happy that the team set the bar pretty high. I'm even happier to report that after only a month of school Emma is rising to the challenge. My focus for Emma is communication. Yes, we have goals for PT and OT, but I'm not as focused on them at this moment as I am on getting a reliable, usable mode of communication for Emma. The team is spending a lot of time reinforcing communication in every interaction with Emma and this is working great. Central to her communication is having her CIs fully operational so first thing each morning the hearing teacher checks her implants. Emma is starting to say some sounds during the hearing check - this is a huge accomplishment because Emma usually reserves this for special occasions only. There is no doubt in any of our minds that Emma is hearing well and using her hearing quite effectively and that her real challenge is expressive (not receptive) communication.

The speech language therapist (SLP) is working with Emma individually, in the classroom setting, and then with the team to instruct them on how to carry-over communication. Historically, Emma is non-participatory in many of her speech sessions. It's just very hard for her to communicate vocally or physically and there has to be a big payoff for her to participate. This SLP gets it and is having success with Emma participating. She wants to move towards a scanning communication system initially and then test out some eye gaze systems.

Many scanning systems only have a 2 second delay before they move to the next item. We think this might not be long enough for Emma to hear it, process the information through her implants, and then get her motor plan together enough to hit the switch. Two seconds really isn't that long when you take Emma's hearing and physical challenges into account. So, her SLP tested out a head switch with Emma and she was able to use it quickly without much training. Her idea is that Emma could use two switches for a scanning communication method - the head switch to go from item to item and a hand switch to select the item. This would give Emma as much or little time as she needs to say what she wants. I was skeptical at first because it is already hard to keep Emma's CIs on her head without adding a head switch but it seems to be working well and isn't knocking off her CIs.

This week the SLP entered the following information in her communication notebook:

Tuesday (her pull out for speech day): Emma had a good day today! We started working with 2 switches (on the computer) and she did great :-) Each switch has a different function - example: one switch adds one more block to the tower and the second switch knocks down the tower.
Thursday (SLP pushes into the classroom day): We used 2 switches again today in the classroom - much more distracted than when in my therapy room, but she still did well :-) Lots of choice making with 2 pictures also.

This Mommy is over the moon that Emma is not only participating in speech, but doing so in both a one-on-one and classroom setting! The gains she has made in the last month are more than her entire first year of preschool at the old school.

I'm filled with hope for Emma and for us! Our decision to move was good for so many reasons and I'm so happy that Emma is in a program that is not only meeting her needs but also providing academic challenges that Emma is meeting head on. I'm looking forward to see what happens as the year unfolds.

Swim Lessons

2011-10-21T16:44:00.000-04:00

The girls love swimming so when I found out about a gym near our new house that has a therapy pool we had to check it out. Emma has a hard time regulating her body temperature which makes swimming during the non-summer months a challenge. Even in a heated pool she turns purple pretty quickly - usually within 15 minutes and has to get out.

The gym is attached to a hospital and they use the therapy pool for some PT sessions and it's usually around 88 or 89 degrees, perfect swimming water for Emma. It's also fairly shallow and ranges in depth from around 3 feet to 5 feet making it the perfect pool for Julia. After our trial period, me and the girls joined. We've gone several times and decided that Julia would benefit from private swim lessons since she is very close to swimming. The aquatic team has an instructor that is trained and certified to teach swimming to children with disabilities and once we found out Julia was matched with that instructor for lessons we signed Emma up for one.

Julia is doing really well in the pool. She can swim a long distance underwater, kick her legs appropriately and swim with a noodle in deeper water. She is very lean, though, so her body wants to sink instead of float and Miss Tia is doing a great job of teaching her technique and floating. Plus, she is very funny and Julia has a ball during her swim lessons. According to Miss Tia, Julia is well on her way to being a swimmer. Here is the best photo I have of Julia because she did a lot of underwater swimming the day I brought my camera.

Emma was signed up for one lesson, but we liked how it went so signed her up for the full 7 week session like Julia. Miss Tia was completely comfortable with Emma in the water and quickly figured out her amazing ability to pay attention to everything going on around her and not so much to what is happening right in front of her. Then she figured out a way to keep Emma's attention on her and follow a few instructions - no easy task considering Emma can't wear her CIs in the water and she has an even worse attention span when she can't hear!

The main focus of the early lessons will be on breath control. Making sure that Emma knows to hold her breath if her head goes under the water and to try and get her to breath out. Emma doesn't blow bubbles or blow outside of the pool, so I'm not sure about this goal but Miss Tia said Emma is trying and we'll see if she is successful.

She is also working with Emma pushing off her hands so she can learn that her body will move in one direction or the other based on her movements. She even was able to get her arms all stretched out and then Emma would pull them to her body and she would move which I find amazing since I can't get that to happen! Our focus is mostly for back swimming. And Emma is either held the whole time or uses a floatation device - we have the Danmar swimming collar and use this for the last 5 or 10 minutes of the lesson.

This is not aquatic therapy, but rather swim lessons. It's pretty fun, actually, to have Emma in her own swim lesson that isn't therapy but sort of is therapy at the same time if you know what I mean. Miss Tia can't promise that she'll be able to get Emma swimming independently and I think that is more of a long term goal. Right now keeping her head out of the water (neck control, Emma!) and knowing to hold her breath if her head goes under, along with working on trying to stop her from arching her back so much would make me really happy. Emma has so much fun in the pool and really has shown an interest in wanting to move/swim but I need guidance on how to help her make this happen. Miss Tia is doing a great job of showing me new things to try with Emma in the water and it's made swimming even more fun.

I'm so happy we were able to find a truly inclusive swim program that works for us and an instructor that seems to be a great match for both girls. I'm looking forward to seeing how they are doing in the water at the end of the 7 week session.

Ask me a question

2011-10-19T21:55:00.000-04:00

We've been working on communication with Emma for a very long time. And to me, it seems even longer ;-)

Emma had been doing great with a Yes/No response on the iPad, but the iPad just isn't always available for a question. And then we moved and we have lots of kids in the neighborhood that include Emma and they ask her questions and it's awkward for her to have me get in the way with an iPad for her to respond. It totally ruins the moment and then Emma ignores the iPad and me because there are kids around. So I decided to try a method that works well for another family that I know. It's low tech, super easy, and everyone including the kids can use it without any help.

Let me tell you what we are doing. Basically, whoever wants to talk to Emma can ask her a question and then you hold out your right hand with your palm open facing her and your left hand fisted facing her and ask her yes (shaking right hand) or no (shaking left hand). Emma thinks about her response and then reaches out for the appropriate hand. It didn't take much time to get her to be very accurate with this method. And since we've been using this a few weeks now she knows which is Yes and No so we don't have to shake it anymore. I'm hoping that eventually you won't even have to say Yes and No when giving her the hand signal but that could come in time. For now I'm super excited that we have a method that Emma seems to want to use and that anyone can use with Emma. It's amazing how many people talk to Emma and now I don't have to answer for her all the time - good for her and for me!

The key to this method is consistency. Keeping the Yes and No always on the proper side. Emma's speech therapist at school talked with me about maybe replacing the Yes No with a card on her tray because apparently some people working with Emma have a hard time remembering which hand is which. I nixed her tray idea pretty quickly because Emma is very rarely in equipment with a tray at home, we want to use the same method regardless of where she is (school vs. home), and it's not easily implemented with kids. The reality is that Emma should be interacting with everyone and it's especially important that her peers know a way to involve her in a discussion. I also said that her aid should know Emma's Yes and No and be able to remind anyone that needs a reminder. Her SLP agreed with me.

But our discussion had me thinking and so I offered to create a card to hang on her wheelchair and other equipment so everyone would easily know her Yes and No. The card I made is at the top of this blog post. It's a 5" x 4" laminated card, so large enough to see easily but not in your face large. It complements the other card hanging on her wheelchair that introduces Emma to people. It's amazing how many people read her introduction card and then come up to her and talk to her. Thanks to Tara over at Endless Jubilee for the introduction card idea!

Emma's introduction card. Might be time to update this with a more recent photo - my girl is growing up!

Potty Talk

2011-10-18T15:50:00.000-04:00

Right around Emma's third birthday we started using the potty with her. She seemed to get the hang of it pretty quickly and was really proud of herself when she went. We tried to carry over the potty training at school but they weren't really good at putting her on the potty. They didn't seem to want to do it and only after I asked them every....single....day about the potty did they put her on a couple of times. Emma never did go on the potty at the school for them and I think it was mostly because the infrequency of it and the lack of a supportive potty and ample amount of time allotted to potty. Needless to say, that made it pretty hard to potty train our little one. Plus, it was really hard on my back and so we put the potty training on the back seat for a while.

This summer we took a long trip to Ireland and moved, putting potty training to the very bottom of my list of priorities. Truthfully, it's much easier to just change Emma's diaper than figuring out all the intricacies of potty training a non-verbal, non-mobile little girl. Once we settled down in the house we figured it was time to start potty training again and started up again with our little wooden potty. We also talked with her OT about ordering an adaptive one for our house. Potty training was ON!

Emma at fountain in Love park. Fountain is purple in support of ending domestic abuse. She looks so grown up!

We set a schedule to sit Emma on the potty and decided to stick to it for a few weeks so Emma could get the rhythm of going on the potty and could start to anticipate the times she would get on the potty. My idea is that if she knows there are certain times she will get to go, then she will start to hold it in anticipation of her next opportunity. Right now she doesn't tell us when she has to go, but she does make sounds when she is all done and ready to come off the potty so that's at least a start.

Key to all of this potty training is carryover at school. Emma really is becoming a big girl and she really wants to do big girl things and going on the potty really makes Emma proud. I didn't want our second attempt to fail like the first and I was so happy that her school was completely on board. The day Emma started school they set her up in a potty that gives her amazing support. It was fitted and cleaned and available for her exclusive use on her second day at school. The first time she used it, she went on the potty! Horray for going at school!

We've been working on potty training for a couple of weeks now. It's going ok. Some days are better than others, but the last two days have been amazing with lots of dry diapers! The biggest challenge I have is what to do when we are out in public? Public restrooms are so not set up for us. And from what I can tell there aren't any portable potties for kids like Emma. I've asked around and no one has any great solutions. Maybe there just isn't any good solution, but if anyone reading this has any ideas please let me know. In the meantime I'll dig out our traveling fold-up potty seat we used for Julia and hold Emma on the potty. I can already feel my back hurting thinking about it ;-) but Emma is so worth it.

Here is our current schedule of when we place Emma on the potty:

After waking up
When she arrives at school she has her hearing/CIs checked first thing, then off to the potty. That is about 8:45am. On days when she doesn't have school, we do ~30 minutes after her morning drink
Snack is at 10:30am so her next potty time is 11am.
School ends at 11:15 and she arrives home around noon and I put her on the potty again once she gets home.
After lunch but before nap - she doesn't usually go at this time so I might end up taking it out.
After nap - she has been waking up dry and so this is a key time to put her on the potty!
Before dinner
Before Bath
Before Bed

Emma is using the Rifton Blue Wave Small at school and we are ordering the same one for our house. She looks great in it, has show that she has no problem using it successfully, and it's nice to be consistent. Plus, it has a couple of features that are nice like going directly over the toilet or using a pan, a tray to set her arms to keep herself upright (might not need to use all the straps), and wheels to move it around easily. I have no idea how long it will take before we get it approved so we are using our wooden potty seat in the meantime.

My big girl getting on the school bus!

Her school also set-up a checklist that they include in her communication book everyday. It has four columns on top: Sat on Potty, Urinated on Potty, Urinated in Pull-up, Notes. It has two columns on the side: 8:45am, 11am. Her aid puts a check in the appropriate spots. This morning she had a check at 8:45am sat on potty, 8:45am urinated on potty, and 11am sat on potty. I love that I know what is happening with potty training at school. I love that they are so responsive to my requests - I only asked once if they could let me know if she is "successful" on the potty and the very next day they started to include this checklist. They also made a checklist for her equipment and time in each so I know what equipment is used during the day and can make decisions for what to use at home.

All smiles when she arrives home from school!

I'm hopeful that this time Emma will be fully potty trained. I'm even hopeful that she'll have to add princess underwear to her Christmas list. I know pull-ups will continue in our future - especially when an accessible bathroom isn't viable and for bedtime - but I am so very proud of how Emma is doing and will follow her lead to when the timing is right to take the leap forward to underwear!

Hopeful Parents

2011-10-12T14:04:00.002-04:00

My monthly post is up at Hopeful Parents. Click here to view it.

Birthday Party

2011-10-11T15:35:00.001-04:00

Birthdays are important and are meant to be celebrated. In our house it's mostly just us girls that like to celebrate because Chris would like nothing better than to have his birthday pass without anyone noticing. Julia starts planning her next birthday party the day after her party. It's a topic she talks about frequently throughout the year. She also loves to throw parties for her stuffed animal's birthday and we have even made cupcakes, bought balloons and made cards for those parties! Emma loves to be surrounded by people which makes parties a big hit for her. She also loves to look at pictures and watches her yearly birthday videos A LOT!

This weekend we celebrated Emma's 4th birthday Emma style - surrounded by family and friends! I always love parties at home - it's nice to include all the children in a family! - which works better for the October birthday than the winter months so we had the party at our new house. The weather was picture perfect and we were able to hold most of the activities outdoors, giving the children a lot of space to spread out and play and burn off some of the sugar from the party. I've learned that I enjoy the parties much more when we keep it simple. No fuss food, a great cake, face-painting and a few games.

Emma loves musical chairs. I found this out at a local restaurant family night where she squealed and laughed when we joined in the fun. So we had to have a fun game of musical chairs today. Most of the children had a lot of fun with the game, but it was hard for some when they needed to leave the game before they wanted. We also had a pinata filled with candy. This was the first time we had one and it seemed to go over well. Emma has a very silly sense of humor and whacking a cute colorful donkey is her idea of entertainment! (Or, rather, watching the other kids whack the donkey is fun but she wasn't as interested in it when it was her turn.) The kids especially loved it when the candy came out and I'm hoping they didn't eat it all at once or their parents might not come for our next party ;-)

For Emma, the highlight at any birthday party is singing Happy Birthday. She just loves that song and enjoys it even more when she is the center of attention. If you ever want to see huge smiles whip out the Happy Birthday song in Emma's company and you won't be disappointed! This year's party theme was the colors of the rainbow and so I made a rainbow cake and used candles that had colored flames. The cake was a hit with everyone (even though it was a bit trickier to make than I expected) and there was lots of frosting among the six layers to satisfy the birthday girl. As you can see in the photo below, Emma dug into the frosting even before we sang to her and she loved it!

We are truly blessed to have so many family members and friends help us celebrate Emma's birthday. Thank you to everyone for making the event so special! And a super special thank you to my sister for providing the great face painting!

Kindergarten Begins

2011-10-03T13:57:00.000-04:00

Julia started kindergarten in September at the school where Chris works. She's beyond thrilled to be going into work with Daddy. And even more excited that she gets to take the bus and the subway. I had worried about that bit because she was so looking forward to riding the school bus - even though I kept telling her she wouldn't be taking the bus she didn't really understand it until school started. Apparently riding the subway and public bus is amazingly cool, though, and she is completely fine about not riding a school bus.

Her first day at school was a big event for us. She dressed in her new outfit and shoes from her grandparents and I took some photos before we left the house. True to form we were running a bit late and so I didn't have too much time to dwell on the fact that my first baby was starting school. We drove into school together so Chris and I could attend a morning coffee for new parents. I had planned to park near the school - not surprisingly so did all the other parents - but the handicapped spots were taken by non-handicapped people! That Really Gets To Me.! I did manage to find a spot a couple blocks away and was able to get some photos of Julia going into school and in her classroom. It seemed all a bit of a rush to me especially since I wasn't looking forward to afternoons without my girl. All day kindergarten is no joke for the stay at home Mom :-)

I watched Julia meet her new teachers, check herself "in", fill out her lunch order, discover her cubby, and settle into an art project. Julia was happy to get started since she's been waiting for kindergarten for a long time. Chris had to remind me that it's best to just rip a band-aid off instead of taking it slowly and proceeded to lead me into the hallway. We made it halfway to the coffee area before I decided I needed to go back. I hadn't gotten any photos of Julia and me! Chris agreed to let me go back for another photo and Julia was maybe not as excited to see me again as I was to see her. When we were on our way to the coffee again and I mentioned I didn't get any photos of Emma and Julia together and we needed to go back, Chris put the brakes on me. Ok, I get it. I could get the photo of Julia and Emma later.

Signing into class for the first day

Tr. Alec shows Julia where to stow her extra gear

With Tr. Robin

We headed to the coffee and listened to some of the Q&A discussions before I realized my meter was running out and I needed to leave ASAP to avoid a parking ticket. Emma and I rushed back to the car and I got her settled in before it hit me - Julia really was starting school. I was so excited for her and, at the same time, my stomach was a mess. I completely missed her already and it had only been 20 minutes since I saw her last! It seemed like it was going to be a long day ahead.

Julia is bright eyed and I look like I want to go back to bed!

To take our minds off of Julia's first day of school, Emma and I went to the zoo and had a lovely morning. We had the zoo practically to ourself since there was flooding in the area the day before and people were staying away in case the flooding didn't subside. It was a nice way to spend the morning to keep us busy and avoid thinking about not seeing Julia until around dinner time.

Chris texted me the approximate time of the bus arrival so Emma, Finnegan and I headed to the bus stop to wait for them. It was so fun to see Julia coming off the bus brimming with energy and ready to tell us all about her first day at school - or, at least about her first day of riding the subway! I had planned to have some fun with her before dinner but her friends were waiting at the house to play so she had no time to fill us in on her kindergarten happenings. Thankfully, she did remember a bit of her day and told us about it at dinner before she headed back out to her friends.

Big jump off the bus

Treat in hand, adjusting backpack so she can run over and give us a hug.

It's so wonderful to see Julia growing up. In the last three weeks of school it seems she matured a few years. She is getting so independent, her shyness is starting to dissipate, and she is gaining so much self-confidence. Her school has monkey bars and Chris and I were thinking she would master going across them solo by Thanksgiving. We were off on the timing - she had them down by the end of the FIRST WEEK! Wow! When I've attended a couple of functions at her school Julia is proud to show me around the school and point out her artwork in her classroom. She loves school and the culture of the one we chose is a perfect fit for Julia. We are so very happy that Julia is having a positive experience with school so far and look forward to watching as Julia grows this year.

Birthday Fun!

2011-10-01T09:42:00.000-04:00

Sweet, sweet Emma, it's so hard to believe that you could be 4! It's true - today is your birthday and we are going to celebrate it in true Emma style with lots of fun and laughter. You bring so much joy to our lives but it is your ever present smile, your wild and adventurous side, and ready laugh that really brightens our life.

This year was filled with firsts. It included crawling on a crawler, commando crawling on the floor, eating small amounts of table food including your favorite PB&J on crackers, walking in your gait trainer, trips to DisneyWorld and Ireland, a private tour of downtown Philadelphia on the DirectTV blimp, meeting one of the Phillies pitchers, and riding your very own bike. You certainly are leading an extraordinary life and we are so glad you are bringing the rest of the family along for the ride.

We love you so much! Happy Birthday my sweet Emma!

Fall Fun

2011-09-17T22:36:00.000-04:00

I know I'm leaving you in suspense for Julia's first day and week in kindergarten. I could tell you all about how she loves school, thinks her music teacher is so funny, mastered the monkey bars in only a couple of days. But, that will have to wait for another post because I have to show you how much FUN we had today.

We have an annual tradition of going to a local apple orchard every fall with the girls and getting their photos taken atop a barrel of pumpkins. The orchard is a super popular destination in the Fall and the crowds are really hard to navigate come October so we have taken to visiting in September. Beautiful weather, same attractions, smaller crowds.

We arrived and headed to the pumpkins for some photos. Truthfully, this tradition is one of my favorites and I look forward to taking the same photos every year and comparing them to previous years to see how much the girls have grown and matured.

Full disclosure: This morning we were all ready to go when I saw that Julia's black shirt with orange sequined pumpkin had a huge white spot all over it. I found out that the culprit was toothpaste and I know that doesn't come out easily and my heart sunk a bit. I quickly realized I had to relinquish my desire to have her dressed in fall clothes and let her pick out a clean outfit. I think the photos look great anyway so I was a bit upset for no reason at all.

This year we did two things that really made it a fun trip. We brought Emma's wagon instead of using her wheelchair or stroller. It's just more FUN to go around an orchard in a wagon and it's super easy for me and Chris to move her in and out of the wagon. It was a great decision. The second thing we did was Pick Your Own apples. We had not done that at this orchard before for various reasons and felt this was the year to check it out. Oh, how we had fun picking apples!

Emma was all smiles and ready for the apple picking action. Julia was worried about stepping in the mud or rotten apples and getting her hands dirty. We jokingly were calling her a diva and she most certainly DOES NOT like being called a diva..but she pretty much is a bit of one. I love that about her :-) Emma is all about dirt and fun and loved getting right into the center of the action. I love how their personalities are so different and special. The best part of picking apples was tasting their sweet, juicy goodness right there in the field. Yummy!

We had a {relaxing} picnic lunch with the music festival band playing on stage and watching all the children running around in the playground. Julia was finished her lunch in the blink of an eye and ready for the playground and kept asking us to hurry up - she is sometimes not all that thrilled that Emma takes a bit more time to eat. While waiting she burned off some energy by running circles around the wagon. Julia really loves to run around and I think someday she might take up running with Chris. Anyway, once our lunch was finished we hit the playground for some fun.

Julia showed me how she can now do the monkey bars. This is a new skill since starting kindergarten. My jaw might still be hanging open from how she went from not able to inch herself along the bar to swinging through the entire set of monkey bars without so much as a hiccup. Amazingly wonderful. I'm so proud of her!

Emma is a slide-a-holic and so Chris and I tag teamed to let her do the slides by herself for a while. On of us places Emma on the slide at the top while the other waits at the bottom to catch her and listen to her ridiculously cute and emphatic giggles. With all the children running around it is sometimes challenging to do our hand-off and also to keep Emma's rightful spot in line but she managed to go down the straight slide, curvy slide and tunnel slides a few dozen times each. Happy girl! Julia loves going down the slides, too, and especially loves taking Emma down with her. Emma thinks it's a hoot to slide with Julia, and so they went down the non-tunnel slides together a few times.

Each time we were moving between the play sets we placed Emma in her wagon seat and she pitched a fit. She does this all the time when it comes to taking a break at the playground - she just loves playing at them so much! I have a dream that some day there will be adapted slides for children in wheelchairs. I have never seen one but I can tell you that my back would really appreciate one. I also wonder what ever we will do as Emma gets bigger and heavier and needs her slide fix.

But today I choose to live in the moment so I will set that worry aside for another day.

Last day of Summer

2011-09-08T22:18:00.000-04:00

Tomorrow is a pretty big deal in our house. It's such a big deal that Julia is having a hard time getting to sleep tonight. All the excitement is over Julia's first day of kindergarten tomorrow! It's time for her to start her journey into lifelong learning and navigating her way a bit on her own. Not too much on her own - not just yet. She will go to the school where Chris works and right now that is very exciting to her. I imagine that as she gets older it might be less exciting....I'm thinking it might not be such a selling point to her come the teenage years. But for now, now the idea of riding into school with her Daddy is EXCITING!

To celebrate her last days of summer we went on a Mommy Daughter date last night. Julia chose to go to Friendly's for ice cream. Mint chocolate chip ice cream with m&m's please, Mom. After ice cream we walked around the local mall. It was our first time there since we moved and we were happy to see it has some of our favorite stores. In a strange turn of events Julia was happy to walk around the mall and browse a little and was so excited to find a little area rug for her new bedroom. I was excited to find it on clearance along with one for Emma's room. It was a great way to spend some quality time together and it was much needed. It can be hard to be the "typical" sister and it's nice when you get some time alone with your parent where the focus is 100% on you!

Today we celebrated by making it a national Julia day. From the time she woke up until late this afternoon our day's happenings went along with Julia's ideas. There was a half hour of tv in the morning and then we headed upstairs for a while. Julia made Emma's bed - something she enjoys! - while Emma cheered her on and then I helped Julia make her own bed. After that she decided she needed to clean up her closet, line up her shoes on the floor and then select an extra change of clothes and blanket to pack for school. Finally, the real fun began. Barbies, barbies and more barbies were on the play agenda today. I love Julia's imagination and found myself in awe as she paints the different scenarios we should play with her barbies. The way Julia can express herself is not something I take for granted - ever!

Emma loved watching all the silly situations the barbies managed to get into and pretty much laughed all day. In addition to barbies, we had a fun-filled game of hide and seek, a picnic on the floor, some swing time in the wingbo and finished the afternoon off with a show. All in all it was a wonderful way to wrap up Julia's time at home before she embarks on her full day, full week kindergarten adventures. I truly have cherished the time I've had staying home with her and love seeing the confident, caring, curious little girl emerge from my precious baby.

Julia tells me "Don't worry Mommy, you will have me on holidays and weekends and Daddy will have me for school." Sniff, sniff. Emma and I really will miss you but are so excited for your new kindergarten adventure! Enjoy your time in school, my sweet Julia. We know you are going to love it!

Suggestions needed

2011-09-07T21:33:00.000-04:00

Mom, I'm way too cute and can get everything I need with my smile. Trust me!

As part of Emma's aural rehabilitation and really just as part of being teaching my little one, I'm constantly talking to Emma, naming things, "narrating my day", etc. It's clear to me that Emma knows and understands us and I've been trying to take it to the next level of her communicating back to us. Her main form of communication is currently smiles, laughs, whines, cries and vocalizations. She also uses her eye gaze quite effectively.

Previously, we've worked with picture cards with Emma but she had very little interest in using the cards after a few weeks. We've worked with the iPad - mostly the Yes/No and Proloquo2go apps. She definitely is interested in the iPad but has a very short attention span for communicating on it so it's rather hit or miss with her. I'm trying to build her vocabulary and prompt her to communicate more and was looking to use both high tech (iPad) and low tech (picture cards, buttons, switches, etc.) to keep her interested. When I came across a blog post on Adapting Creatively that showed how to turn a swim noodle into a card holder I thought this would be perfect for us! You can see the original post here. I bought a pool noodle on clearance for $0.75 and set about making the card holder in various lengths.

We've been doing same and different matching with Emma. Her SLP gave me the cards for Brown Bear, Brown Bear and we have her match the photos in the book to the matching card. Emma loved this game and was very in tune with the cards and picking the "same" card as the picture in the book. She would pick correctly about 90% of the time and we implemented this game for the Goodnight Moon book. Then, she decided she didn't really like this game after all and found anything she could to distract herself from what we were trying to play with her. Suddenly, the lights, a spot on the floor, her fingers, anything was more exciting than playing the matching game. This is pretty much how Emma operates in her speech and hearing formal and informal sessions - she prefers not to participate. So, we stopped playing that game for more than a month to see if her interest would be sparked again after a long break.

When I saw the noodle card holder I thought it might be a good time to re-introduce the book matching game. Originally we would show her the book and then prop it up and hold the two card choices for her - one in each hand, but using the noodle card holder would make this game easier to play and allow us to increase the level of difficulty by using 3 or more card choices for her to pick from (this would be difficult if I could only hold them in my hand). I was so excited to start playing this game again and try out the noodle but, sadly, Emma wasn't interested in playing with me. After several attempts over a couple of days to play with Emma refusing to play along I decided to try something else.

I took the flash cards we have and placed them in the noodle and made a big fuss and tried to have Emma pick between two flash cards. She was very happy to sit in the play room and have me talk all about the cards and make noises and talk them up and put them in the noodle for her to pick between the two while she completely ignored me. And, it was a lot of work for her to ignore me - I wasn't making it easy on her! Often I find she works so hard to ignore when it would be lots easier to just give in and play and I just don't get it.

I'm looking for any ideas or suggestions on how to get Emma to take an interest in communicating. If you've been there, done that before I'm open to all ideas. Please, please share them with me.

Here are a few photos I took when it was obvious I had an unwilling partner in my game. Enjoy the serious cuteness of Emma!

There is NO WAY I am going to look at these flash cards. No way, no how.

Horray! She is ending this torture session. No, onto more important things like cuddling with Finnegan.

A view from the back.

Ireland: The Hayshed

2011-09-02T22:34:00.000-04:00

The farm in Ireland has a hay shed behind the house, just up a couple of steps into the "back" yard. This is where the hay was kept while my uncles lived there and after they passed away it was full of hay. Over the years the hay has deteriorated (and rotted a bit) and the stack has gotten smaller, but there is still enough left for the kids to climb, sit, relax and play around. In fact, it is very easy for the kids to lose a couple of hours after they go back to check out the hayshed.

One afternoon the kids decided to play in the hay. There was a lot of laughing going on and silly poses happening and I managed to find my Mom's camera and take a lot of photos (I didn't, however, download said photos to my computer yet!). It was one of those days where the sun was shining, most of our "work" around the farm was done and everyone was caught up in fun. My oldest niece and nephew took turns overseeing all things Emma so she could hang out with the kids without a parent in tow - something she LOVES to do and it's much easier when Rebecca and Christopher are around! They had so much fun that they wound up in the hay several more times before the end of the vacation and I was able to snap a few photos with my camera. Here are a couple of my favorites.

I remember playing around the hayshed as a child. There is a giant tree next to the area and my uncles would hang a tire from the tree when they knew we were visiting so we would have a swing. I'll have to dig up a few old photos of me and my sister on the tire swing and do a scrapbook page on it. There was always an adventure waiting for us at the farm - whether it was the tire swing, a donkey ride, a trip to the bog for turf, gathering the eggs from the chickens or milking the cows it was all very exciting to us born and raised city girls! My sister and I loved hanging out at the farm and all the adventures it entailed and it's nice to see our children love the farm, too. While their experience is undoubtedly different from ours it remains full of fun and adventure. And smiles. Lots and lots of smiles!

Settling In

2011-08-21T09:36:00.000-04:00

I plan to do more posts on our Ireland trip that includes lots of photos, but when our cable and internet was finally connected at the new house I clicked "yes" on the update for iPhoto and it wiped out my entire photo library with all my photos from the last 5 years. We do have it backed up - thank goodness! - but for some reason it won't restore and after spending many hours working on it Chris is finally taking the computer into the Apple store to see if they can get it resolved. I'm antsy to get back to editing my photos and want to create a photo book of our vacation so I'm looking forward to having all my photos back and available to me. Once that happens I'll post more photos and for now I'll give a bit of an update on our new house.

Moving is a lot of work. It's not just the packing and moving, but also the changing your mailing address, getting all the utilities scheduled, working with a new school district, learning a new neighborhood, meeting new neighbors, finding a grocery store, etc. It had been a very long time since I moved so I had forgotten how much changes with a move. Add in moving states with a special needs child and it adds an even bigger dimension to our move. But, even with all the work involved I think we made a great choice for our move!

The house we are renting is about the same size as our other house but it is laid out better for us. All the floors are hard wood making it super easy for Emma to navigate around in all her rolled equipment. There is also a play room on the main floor with the living room and kitchen and the girls love playing in there and I love not having to pick up all the toys from our living room at the end of the day. And since the three bedrooms are all on the same floor the girls have their own room and have settled in nicely to their big girls beds! Julia picked out princess bedding (of course!) for her twin bed and Emma is using the purple bedding we had for her full bed while spreading out and enjoying all the extra room she has to roll around at night. We were nervous about giving her a bed but she seems to be making the transition just fine and I have a video monitor that I can use when I feel the need to "check" on her.

Our neighbors are super friendly and mostly around our age - and Phillies and Eagles fans to boot! There are kids galore on our street for the girls to play with and they are playing like old friends already. The girls are even invited to a birthday party in a couple of weeks for some of the kids on the street. I cannot really express how wonderful it is to have children on our street for the girls to play with! It lets me have a small bit of down time from chief entertainer of the girls and they are having a ball learning to navigate relationships with their peers. Emma is also included in all the playing and the kids and parents just roll with the flow with Emma - not making any deal at all about her disabilities and going out of their way to make sure Emma is included in the conversations and play. It is such an inclusive environment and I haven't really found that much when put into a group of strangers. It so warms my heart! Chris or I usually navigate Emma around with the kids, but she is showing more interest in walking in her walker and riding her bike when the kids are around. I think all the activity and Emma's desire to keep up with all the kids - who move about at the speed of light! - will have her working that much harder to gain more independent movement.

Chris' commute was cut by a little less than 2 hours per day. Yes, his commute was 3 hours round trip per day and is now about an hour per day. He has been getting home before 5 pm and taking Finnegan and the girls for a walk so I can make dinner without all the 5pm whining. For some reason, the whining in our house hits full throttle right when I'm making dinner - it's something about the 5 o'clock hour that has the girls cranky since they were only a few months old and has stuck around for all these years. Needless to say, I'm totally thrilled that the girls are actually outside having fun instead of inside bored and whining even when I try to include them in my dinner preparations. Chris also has a lot more energy since his commute was reduced which makes it easier for him to continue training for his next marathon in November. He can get some runs in before work or after work since he has more time on both ends now.

Finnegan has adjusted to life without a large fenced in yard better than we expected. Since she is 9 years old now she doesn't have as much energy as she had in her puppy years. She is enjoying all the walks she gets throughout the day and smelling all the new scents on the various walks. She is even navigating all the hard wood in the house, including the stairs, much better than expected and it seems like she doesn't mind the wood or change in flooring as much as she does in all other houses. There is also an 8 month old black lab next door to us and Finnegan and Buddy like to "talk" to each other through the driveway. I'm glad Finn has a friend at our new house because she had several dogs she played with through the gates at our old house.

All in all we are settling in quite nicely, albeit with still some boxes left to unpack and some window treatments to make. We rented the house for a year with the option to continue our lease if we are interested after the year is up. I have a feeling it is going to be a good year - bring it on!

Travel logistics

2011-08-04T21:00:00.000-04:00

Whenever you travel with children there is always a worry about how they will do with the actual travel time. Our best option for getting to Ireland was to take a direct flight scheduled at 10pm from Newark, NJ to Shannon, Ireland. Since we had some bulky items and special needs for going through airport security coupled with a good chance of hitting some congestion on the roads we decided to play it safe and leave ourselves plenty of time to catch our flight.

Everything went smoothly and we arrived at the airport about 4 hours early. We used the porter to take our luggage from the curb and to check us in. This was well worth his tip because all told it took about 15 minutes from our car to the security check-in and basically no effort on our part. We thought security would be a hassle but were pleasantly surprised to find everyone very upbeat and accommodating and we got through without much hassle at all while they still managed to do a thorough security check. And I was happy that they were so easy-going about the food and drinks that I packed for Emma.

We found a food court and had a bite to eat, explored the terminal a bit and passed the time pretty easily. We were able to pre-board the flight and get settled only to find out that we were delayed on take off due to a passing thunderstorm. We sat on the runway for over an hour and the girls were so good during the delay even though it was quickly approaching midnight and neither of them had a nap. Emma fell asleep for a few minutes but when they put the lights on in the cabin to serve "dinner" sometime after midnight she woke up and wasn't very happy until I laid her on my chest where she slept for the majority of the flight. Julia watched a few shows on the tv screen at her seat and I watched a few movies on mine; neither of us slept much.

My parents were at the airport waiting for us when we arrived. It was so nice to come out and see their smiling faces. Thank goodness we had their help because the car we rented had just about enough room for Emma's jogging stroller with no room for suitcases so we put our stuff in my parents car and headed up to the farm. The kids were happy to reach their destination and set about stretching their legs by climbing on the wall in front of the cottage we rented. I have to say they look amazingly awake for traveling all night!

My parent's cottage has only one bedroom so there was not enough room for all of us. Luckily two of the neighbors agreed to have my sister and I rent the cottages for our vacation so we were able to walk from house to house for easy visiting. The kids loved the freedom of coming and going between the houses and most nights there was a sleepover happening. We really couldn't have asked for a better set-up. Here is a photo of me and Chris outside the cottage we rented - it is really a large house for the area and had 3 bedrooms.

Since this post is on logistics I will add that on our return trip everyone was just as nice as they were on the way out. Security and customs made it as hassle-free as possible for us, our flight left on time and arrived a bit early, neither of the girls slept but they were so well behaved on the flight that we got some nice comments on the way off the plane from others seated near us. Outside of the two bad diaper changes - I'll spare you the details but just say that I have NO idea how we'll handle this at all as Emma gets bigger! - in the ridiculously small airplane bathroom it was an uneventful trip. Just the way I like them :-)

We're Back!

2011-08-03T18:57:00.000-04:00

It's been quiet around this blog for a couple of weeks because we were off having fun in Ireland - two whole weeks in the old country and what a blast we had! For those of you that don't know already, my Dad was born and raised in County Clare, Ireland and came to the USA where he met his love and settled down. My parents go back to the farm each summer and this year both my sister's family and our family joined them for a portion of their trip. I still remember how much fun we had as children on our vacations to Ireland and I was happy to see that my girls enjoy Ireland just as much as I do! What a treasure it is that all the grandchildren could experience Ireland with their PopPop.

I'm totally exhausted right now because we were up way before the crack of dawn and I sure hope that we will fare better tomorrow morning on recovering from the 5 hour time change. I'm not going to post about our trip now but promise an update on our Ireland adventures shortly. In the meantime, here is photo sneak preview of our travels.

Grandkids on the wall outside PopPop's cottage

Near the cliffs at the light house

Enjoying the beach at Lahinch

Road signs in Kildysart - our nearest town

The national beverage of choice is Guinness - for strength!

Oh, and we move in less than a week and still have to pack our entire house up so I'm not sure how frequent my posts will be for another week but I'm keeping my fingers crossed that packing goes quicker than expected and I get a couple of posts in....

4th of July

2011-07-17T15:28:00.000-04:00

I'm a bit behind on my photos and just downloaded the pictures from the 4th of July. On the card was a great family photo and I just had to share because we have so few photos of us together where everyone is looking at the camera. Enjoy!

Moving and a bicycle

2011-07-14T14:19:00.000-04:00

This summer is going by in a flash! We have been having a lot of fun, but have also been quite busy planning for our move. It seems that we are getting closer to having everything settled - our move date into the house we are renting and a renter for our house. I'll be happy when we are moved and settled in and life can go back to it's normal hectic way!

We've been packing up the house bit by bit and trying to get rid of items we won't use. Surprisingly, we use most of the things we have in our house. On the plus side that means that we have been doing a fairly good job of managing our "stuff" over the years, on the minus side it means that we are pretty much average when it comes to amount of "stuff" we have. I always wanted to be one of those minimalist people but I guess that will have to wait - maybe I can achieve that when the girls are off to college, but I doubt I'll ever be able to live like that. The really good thing is that we are no where close to the people I see on the tv series Hoarding: Buried Alive! Watching that show helps me put our possessions in perspective ;-)

I'm probably be offline until we are all settled in the new place next month. I'm sure I'll have a great update on Emma's great bike riding skills :-) She received her Freedom Concepts Discovery bicycle from The Variety Club last week! We are BEYOND thrilled that Emma received this gift and hope to put a lot of mileage on it very soon. Unfortunately, she can't ride it until we receive the spacers for the pedals (her feet are a bit too short to reach both pedals) that should come in about a week. While we wait we are planning all the great places for a bike ride. Can't wait to get it up and running. Thanks so much Variety!!!!!!

Random musing

2011-07-07T11:10:00.000-04:00

It's been two years since I worked in at office and some days I miss it. There is just something about pulling together with a team, launching a new product, tracking sales, creating marketing materials, writing journal articles, traveling the world that made my work fulfilling. But there were other parts of it that I don't miss like the crazy hours, travel away from my family, executive decisions that seemed to change like the wind.

These days I find that I'm a different person than I was when I worked in an office. My life perspective has changed and I am living a more balanced life. I was missing a lot of the "play" part of life when I was working in my Marketing position. And while I do sometimes miss working in an office, it is usually fleeting. I know that my next job will have a different focus ad, while I'm not sure what that focus is just yet, I am confident that I will know it when I find it.

I can't imagine not having the last two years with the girls. We spend our days laughing a lot, playing together and with friends, enjoying trips to museums, parks and local events. We are happy together, know how to have fun, and anyone who is around us can tell that we are enjoying this one life we are given! My two children are very different in abilities but that doesn't stop us from living our normal life. Actually, I often think that we have more fun than a family with children of similar abilities. It is so fulfilling knowing that I am making a difference in the life of my children while realizing they have refocused my life for the better.

Today I am doing some packing for our move. I came across a paper from graduate school that made me think about my office/home life today that led to this post. My marketing professor had us each write down how we perceive our fellow students. We went through 19 months of school as a class together and knew each other well. The professor then compiled all the responses for each individual and presented us with our own sheet of how other perceive us. There are no names attached to the comments and they are all positive. I find it comforting that so many of the comments are similar, which means that I am pretty consistent in my interactions with others. It's a great gift this professor gave us. I'm glad I found it since I do think about it every now and then. I'll have to make sure I put it somewhere it won't be lost in the move.

Wordless Wednesday

2011-07-06T22:22:00.000-04:00

4th of July

2011-07-04T15:12:00.000-04:00

Happy 4th of July!

Oh, how I love this holiday! As I see it, there are two fabulous things about this holiday: 1.) it's our faithful pup Finnegan's birthday and 2.) it's located smack dab in the middle of the summer!

Because of these two things we are so lucky to be able to wrap up lots of fun into one day for the celebration of our nation's independence!

Today we had a lazy morning together making Finnegan all kinds of goodies for breakfast for her birthday. Afterwards Chris and the girls took her to the park for a long walk (while I pulled together the dish we are bringing to the party later tonight). She certainly deserves it :-) I can't imagine finding a dog that is a better fit for our family. And the love between Finnegan and Emma! Well, it's really something to see. I can't imagine our life without her and am so happy we've had an amazing 9 years together and we look forward to many more!

Finnegan caught lounging on our couch - she is NOT allowed on the couch and sneaks up there sometimes in the middle of the night

Tonight we are going to celebrate with some great friends for their annual 4th of July barbeque. There will be a water slide, a kiddie pool, children running all about, great food and drinks, the children messy from eating popsicles and watermelon, and a rest on the lawn to watch the firework display. We have been friends since our first children were born and it's so much fun watching them grow up together! Each year just gets better!

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In other news, this weekend Emma's new jogging stroller was delivered. We're so excited about how this stroller is already making things like walks in the park easier. We do need a liner to help position her better but that is on back-order and we are putting it to good use while we wait for it to arrive. Emma loves it. Julia loves it. Chris and I think we will get lots of use out of this stroller and are really excited to have it.

CMV Legislation

2011-07-03T08:26:00.000-04:00

There is some FANTASTIC news on the CMV awareness front. The grassroots effort to raise awareness of CMV for everyone - and especially women of childbearing age - was in the national spotlight!

On June 23, 2011 the United States Senate unanimously passed Senate Resolution #215. To say that a lot of hard work went into this is an understatement and I'd love to thank the ladies of StopCMV.org and everyone else who made this happen. I'd also like to thank Sen. Barbara Mikulski [D-MD] for sponsoring and Lisa Murkowski [R-AK] for co-sponsoring this resolution all our members of our 112th Congress who took the time to understand the effects of CMV, ask questions, read the citations and pass the resolution.

Senate Resolution #215 calls attention to CMV in a more public way and specifically calls out two actions:

1.) Designates the month of June as National Cytomegalovirus (CMV) Awareness Month in order to raise awareness to the dangers of CMV and reduce the occurrence of congenital CMV infection; and

2.) Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.

The hope of so many families effected by CMV is that we can raise awareness on CMV so that others can prevent CMV from changing their lives. Having S. Res. 215 takes us one step closer to that reality!

Victoria Flick 5K Recap

2011-06-28T12:03:00.000-04:00

This weekend we participated in the Victoria Flick's Friends Foundation 5K Bubble Run. It's an annual event that celebrates the life of Victoria Flick whose passed away at the age of 7 years. The Foundation was created by Victoria's amazing parents who raise money and donate it locally to charities and families with special needs children to help pay for equipment that insurance won't cover.

We never knew Victoria, but we are sure we would have loved her! We've seen many photos of Victoria and Emma reminds me of her a lot and Victoria's friends and family remark on the resemblance between Emma and Victoria. I think it is the sparkle in their eyes and ready smile :-) We met the Flick's through our church and were immediately welcomed with love when we first attended the 5K in 2009. It is an amazing feeling to be with Victoria's friends and family and have our entire family - and most especially Emma - greeted with open arms. After the 5K there is a huge party at the Flick's house and we love to enjoy the BBQ, swings, games and pool after a morning of exercise. I would like to invite all our family and friends to join us for this amazing celebration next year.

Here are some photos of the event. Swoop, the Eagles mascot, was in attendance and joined Julia, Emma and Chris in their race across the Kiddie K finish line. Chris ran the 5K and beat his goal time by more than 2 minutes while finishing 3rd in his age group. I planned to walk the 5K course this year, but Julia was walking it with me and decided it would be more fun to walk a few minutes then head to the finish line to cheer Chris when he finished. She was not nearly as excited about the walk as I was! Needless to say, next year I'll have to ask Julia to ride her bike or something so I can actually finish the course while Chris races.

This year three charities received funding, with Variety getting a $10,000 check! Wow! Is this family amazing or what! I am so happy to say that Emma is one lucky little girl and will receive her very own Freedom Concepts Discover 12 bicycle courtesy of Variety! The bike should arrive sometime this week and we know the Flick's are a huge part of how Emma is getting such an amazing gift! For those that aren't familiar with special needs bicycles, the price tag on one supportive enough for a child like Emma is in the thousands and out of reach for many families - including us. Without the very generous gift of a bicycle from Variety we would not be able to afford one and Emma would miss our on a typical right of childhood - the joy of riding a bike. Thanks to Variety and families like the Flick's, Emma will get the opportunity to enjoy her very own bicycle!

We feel so blessed to know this wonderful family and that we can participate in the annual 5K run/walk. We're already looking forward to next year's event and hope we will have some family and friends join us!

First year of preschool completed!

2011-06-23T15:48:00.000-04:00

Class photo after Special Olympics event

Emma finished her first year of preschool with a bang! The last month or two of school when I would go to pick her up I would hear glowing reports from her teachers and therapists. They loved telling me all the great things she was doing in school! Using a switch to access and play computer games- check. Picking the body parts requested when playing with Mr. Potato Head - check. Choosing items that were the SAME or DIFFERENT when asked to pick a matching item from a field of two - check. Pulling markers out of the holder to participate in crafts - check. Attempting to move her arms with the songs in circle time - check. Using the crawler to scoot all over the place during motor group fun - check. Taking a couple of steps in the walker - check. Participating in group activities with her peers instead of just watching everything - check. Eating her lunch at school with the 20 other children instead of refusing food so she could just watch the kids and wait until we got home to decided to eat - check.

Max reading to Emma. Max told the teachers to leave her on his shoulder when they wanted to move her.

The list of good things Emma was doing by the end of the school year just goes on and on. This is a huge change from most of the rest of the year when Emma would actively not participate with her teachers/therapists because she was too busy looking at all the kids. Watching every movement, getting distracted by anything at all that was NOT what the teachers wanted her to focus on. Oh, Emma loved school - circle time, centers, snack; she just didn't want to participate in anything with the teachers/therapists - she only wanted to be with her peer and watch them and smile at them and have them bring her toys to play with while she ignored the adults.

Emma playing with Theo during "beach" week

It was hard to say goodbye at the end of the year. Everyone really embraced Emma, immersed her in full inclusion with all her typical peers, went out of their way to try and figure out how to adapt things for her skills and needs. They kept me up to date on her happenings and sent me some photos of her playing with her friends. The children really LOVED Emma and always were playing with her. It's great how children are - they seem to flock to Emma and accept her just the way she is and always want to play with her. Emma's school included Julia in many of the activities in the afternoon when we went to pick her up and Julia often asked me why should couldn't go to Emma's classroom instead of her pre-school because she loved Emma's school - mostly because their dramatic play area that changed each week was a favorite of hers and the preschool she attends doesn't switch up dramatic play that frequently!

Julia participated in Special Olympics, too.

Emma received a wonderful gift from her teachers - two photo albums of photos that capture her experiences in school this year. Emma really LOVES to look through the albums while we ask her about the photos. It is such a nice way for Emma to remember her first year of school and for us to get a much richer look into her days there. Unfortunately our scanner isn't working so the photos I'm posting here are photos I took on my phone. Suffice it to say there was a LOT of playing and crafting going on in the 3 year old classroom!

Harrison asked for a photo with Emma. He always looked out for her and wanted to make sure she was happy.

It will be hard to move on to a different team for both Emma and me. It's hard for me to trust new people with my non-verbal, non-mobile little girl. It's hard for Emma to be around people without anyone from her family that knows all her subtle communication cues. This year at preschool was a great experience for both Emma and me. Her team commented on how much they will miss Emma and I had a couple of tears in my eyes when we said our goodbyes. I will miss our first school Team Emma when we move and hope that our future experiences are as good as or better than this first year of preschool.

Hat Free!

2011-06-20T22:43:00.000-04:00

Before I go forward on this post, I just want to give a huge shout out to my Dad and to my husband for being such wonderful Fathers. Happy Father's Day! This year I didn't do a post for Father's Day so I wanted to make sure I got a shout out to them.

Now, onto the hats!

As you know, Emma has a profound hearing loss in both her ears - she is deaf. In addition to being deaf, she also has very delayed motor control for her head and her body. When her first cochlear implant was activated at the age of 14 months it was ridiculously hard to keep the magnet on her head. And, if the magnet is not on her head she cannot hear at all. I made it my mission to keep the magnet on her head for all waking hours and it was a losing battle - all the tape, headbands, etc. would not keep the magnet on her head. We battled this for quite a while and found that the magnet would stay on her head the best when she wore a cap (pilot cap ordered from Hannah Anderson) and even better when I put toupee tape on the magnet and covered it with the cap. When her second cochlear implant was activated at the age of 2, it was pretty much impossible to keep both CIs on her head with just the tape and so we continued to use the cap. When we were at home we tried to keep the cap off as much as possible because: 1.) Emma hated wearing the cap and, 2.) I just loved to see her head and hair all done up without a hat! But, really, to keep the magnets on her head so she could hear we had to use the cap or resign ourselves to putting the magnet back on her head the 1000x/day that it would fall off. Remember, she doesn't have the best head control so her head was mostly always touching a seat or the floor or something else and the magnet would easily rub off from Emma turning her head back and forth.

This summer we finally have a handle on keeping the CIs on Emma's head so she can hear during all (or mostly all, they do occasionally fall off!) waking hours. And while I would gladly keep putting a hat on Emma's head if it was the only way that she would be able to hear, I'm happy to say that we have just recently been able to go Hat Free!

A few things have happened to make it easier to keep the CIs on her head.

Emma has better head control. Although I know her PTs think it's not so great I'm thrilled with how far she's come with head control and know that it will only continue to get better!
Her head is not always rubbing against something. She is commando crawling these days and if I lay her down on her back on the floor, she will have rolled over to her belly within seconds so she can get moving. Emma also loves walking in her gait trainer that does not have a head rest for her and her ChildRite chair (the big Bumbo seater she uses) doesn't hit her head, either.
Emma is using the Nucleus 5 CIs with the compact rechargeable battery and it makes the unit much smaller and easier to keep on her tiny ears
Our awesome audiology team found some new gear that helps keep the CIs on her head and I am so very grateful for them.

I'm completely delighted that we haven't had to use the pilot cap for the last few weeks! Even at school we are able to tape the magnet on her head and use the ear gear to keep the CIs on her head with only a few touch-ups to the tape each day. And I feel like things have gotten so much easier because, really, keeping CIs on a child with cerebral palsy is not for the faint of heart!

It's wonderful to see Emma - her beautiful blue eyes, her beautiful hair all done up in a matching ponytail, her huge smile - without her hat. I can't even put into words how great it makes me feel. It really is the little things in life that can make us appreciate everything a little bit more.

Week 1 of Summer Vacation

2011-06-17T21:36:00.000-04:00

This week was the first week of summer vacation for the girls. No school. No schedules. LOTS of Mommy time, sleeping in, eating snacks, playing with friends. It is a week off that they so very much deserved after their great efforts at school this year. I also like to think that I deserved it, too :-)

Our summer will be jam packed this year. The girls are both going to do a bit of summer camp - Emma will attend as part of the extended school year, Julia will attend camp at her preschool. I tried to convince her to try the Y camp, but she loves the one at her preschool because she just loves the bus rides to field trips, the amazing water play area, and the weekly visitors so we decided to honor her wishes and let her go to that camp. We also have a great family vacation planned and will move before the start of the school year so this summer is going to be b.u.s.y!

With all the craziness planned for the next few months I wanted to start the summer off with us doing fun things together - not spending too much time in the car or hanging out at home play dates where I don't get to see the girls much because they are off playing with the other kids. I wanted to make their first week of summer vacation our own to create lasting memories. The kind of memories that will get me through the initial adjustment when Julia starts full time, full week kindergarten (*sniff, sniff*).

We spent the week together packed with lots of local FUN! Monday we went to Emma's two therapy sessions at the hospital - the only therapy sessions she actually had this week - and decided to pack our picnic lunch and hit the Can Do park afterwards. We met some friends there and enjoyed the great weather, the swings and slides. Tuesday we went bowling, a favorite activity that is so wonderfully inclusive for people in wheelchairs!, with some friends followed with lunch at IHOP and an evening trip to Rita's Water Ice for Emma's school fundraiser.

Wednesday we took advantage of the $1 movies and saw Kitt Kittredge American Girl. Both girls loved it and sat captivated through the entire movie while eating lots of snacks! We had a picnic lunch in their bedroom that included some great music on the iPad and LOTS of laughter. The best part of the week was on Wednesday night when Roy Halladay hosted our {hospital} support group, Chronically Cool Families, in his VIP Box Suite! He donated tickets, Philly Phanatic dolls, food, drinks, time on the field, t-shirts. Wow! We are so very honored that he would think of creating such a great evening for our families! He had planned to meet with our group, but it was a double header that day and he was pitching in the game so we got to meet Mike Stutes who was just so sweet with the kids. Take a look at some of the photos from the evening.

Thursday morning the girls slept in since we were out late at the game. We decided to have a lazy day at our friend's development's pool. It was a bit chilly, but we swam a bit and then the girls played and ate poolside. We had a leisurely afternoon followed by a game of hide-and-seek in the evening. The girls LOVE to play hide and seek and we often make it a family game. Emma is not so great at it, though, always giving away our hiding spot by giggling loudly and uncontrollably. I think this is her favorite game. I think it is Julia's favorite, too, especially when us girls hide together while Chris finds us. She is all giggles, too, but hers are much softer than Emma.

We wrapped up the week with a photo shoot at Kiddie Kandids and I'm happy that the photos of the girls together and Emma alone turned out great (Julia always takes a good photo, so I don't worry about her photo shoots at all). Emma tends to smile and look at the camera much better when I'm not behind the camera so I do like to get some professional shots every now and again to supplement my photos. She sees me too often and finds no reason to pay any attention to me regardless if I am acting like a goof to get a good photo of her! We rounded out the day with a trip to a mobility company to discuss options for transporting a power wheelchair with our Toyota Sienna. Let's just say that we are not really prepared for the huge changes a power chair would make in our life so it's a good thing that we are easing into the power chair for Emma. Actually, she's more easing into it than we are - she has to demonstrate that she can stop and go relatively *on command* to get it approved by insurance and we still have a lot of practice ahead of us to make that happen.

What a great week! I just love spending time and doing fun things with my girls! We try so hard to manage Emma's many appointments so they don't get in the way of us living our life like a typical family. Many weeks we are successful and I still never take those weeks for granted. This is one of those weeks that will carry me through the recently *few and far between* weeks of endless appointments.

Life is good. God is great! We are enormously blessed.

Preschool Graduation thoughts

2011-06-13T16:45:00.000-04:00

Julia the first day of Pre-K and last day of Pre-K. What a difference 8 months makes!

I've been blessed to have a great group of "Mom" friends - we met at the hospital shortly after our first born children came along and so all our kiddos are right around the same age. Over the years we've add many younger siblings to the group and the kids just have so much fun the frequent play groups. Who knew that I'd meet some of my best friends at a hospital new Mom session 5.5 years ago? Who knew I would wind up loving all these little children so much and thoroughly enjoy watching them grow up together, have their own conversations, and declaring who will be his/her future spouse!

Recently the Mom conversations have been centered around preschool graduation and amazement at how our children are ready for kindergarten already when none of us are quite ready yet! It seems that I might be the only Mom in the group that didn't shed some tears at the end of preschool program. In fact, I smiled a whole bunch. I just LOVE watching all the little personalities come out in the end of year show. Seeing which children shout, dance, jump about, which children are waving wildly at their parents, which children are taking the whole event very seriously and barely smiling (Julia falls into this category!) because they are so intent on not making a mistake. I guess on some level I'm a bit sad that I won't be sitting in the preschool audience for Julia again, but I couldn't focus on that when I was so full of joy for getting to watch her in the first place! I know that not every parent gets to enjoy these moments and that makes me treasure them all the more.

The children went back to their classroom after the show while the parents were treated to a slide show set to music of snapshots of the children taken throughout the year. I did find this a bit bittersweet and my eyes teared up a bit, but that didn't last very long because we headed on into the classroom for the presentation of their certificates. It was just lovely! The teacher described each child with a few sentences and then the child proudly walked up to get their certificate and gift from the two classroom teachers. Julia was so proud of herself and we were so proud of her. She really grew a lot in preschool - she is more outgoing, confident in her abilities, able to stand her ground with her peers. I've loved watching her grow in such a supportive, nurturing preschool environment. And I know she is ready for the next phase of her life - kindergarten. I am sure we picked the perfect school environment for her and it's a bonus that it's a nice bonus that it just so happens to be the school where Chris works.

Truly, I am not ready for Julia to start full-day, full week kindergarten. Luckily for me we have the summer together and lots of fun stuff planned that I hope will make it easier for me to pack her up and send her off to her first day of school with her Dad. I'm sure that I'll be shedding more than a few tears that day and probably more tears that week.

And me not shedding any tears at Julia's preschool graduation ceremony? Well, maybe I am getting better at living in and celebrating the moment - something I've been working on for what seems like forever!

Crawling Videos

2011-06-06T15:17:00.000-04:00

I've been talking a bit about how Emma is crawling all over the place. It's more of a commando crawl and it just thrills us that she is able to get herself where she wants to go. She started out able to only move a foot, then a couple of feet, and now she is all over the house. I'm so proud of our Emma! She is so determined and motivated and all her hard work on trying to crawl is finally paying off for her. She even has the bruised legs to prove it!

I'm tickled pink to report that she has mastered the art of turning around and throws a fit when when she crawls to the stairs and we turn her around so she doesn't fall down them. Since she can now turn she cries a bit then just runs herself around. We are keeping a really close eye on her because we aren't going to order another custom-gate for the stairs - by the time we get it we'll be moved and have no use for it!

Are you just as excited as I am by this news? Well then you'll want to see her in action so I'm including some videos - Enjoy :-)

Notice how she is getting so much stronger and able to hold herself up on her forearms with her head in the air. This is a new skill that Emma is getting better and better at the more she moves around.

Here is one of her taken from the front:

Here is one of her showing how she turns. Keep a look out for the first few turns at the 30 second mark and the 40 second mark:

Because you are probably wondering - yes, we are planning on moving before the beginning of the school year. No we didn't sell our house. Yes, I am a bit jealous of all the people who put their house on the market and sell it quickly. We have found a house we want to rent in the approximate area (no houses for rent in the school district we wanted would let us bring our dog!) we want to settle in and think it will be a good fit for us for a year. In the county we want to move into we had 2 houses to look at that would allow dogs. Two! Yikes. Good thing one had a very open first floor that was all hard wood and would allow Emma to navigate the house quite easily. We are going through the application process, etc. now so our fingers remain crossed it will all come together seamlessly. Chris is almost giddy that his daily roundtrip commute to and from work would be cut to 1 hour from 3 hours. - and I'm so happy for this, too.

Goodbye Preschool

2011-06-05T08:26:00.000-04:00

When you have a little one under foot it seems you notice the passage of time much more than without any little ones. Lately I keep looking at my little girls in wonder at how they are growing so quickly and maturing at an astonishing rate. It doesn't seem possible that Julia is finishing pre-school up this year.

Preschool has been a wonderful experience or Julia. She has a tendency to be shy when around new people and preschool helped her break out of her shell. She made lots of friends and loved each of her teachers. The Learning Express school and people were so wonderful to us! I couldn't imagine a better preschool environment or experience for Julia. And so I find it a bit hard to see Julia graduating and moving on to kindergarten. She is so excited about going into kindergarten and regularly "practices" for it by doing the worksheets in the workbooks we have for her. I am amazed at how much she is looking forward to the Fall and her new school when I am, truthfully, feeling bittersweet about the transition. I know Julia will continue to blossom and will love going to school with Chris. The school she will attend will continue to nurture her kind and sweet personality while challenging her academically. She is definitely up for the challenge!

But......I will miss my afternoon buddy. My one-on-one Tuesday mornings with Julia and my field trip Fridays with both my girls. This year has been one of my most favorite years of all! We finally are in a routine where our schedule is not driven by therapy and doctor appointments, it is driven by going places that are interesting to us and we are able to do so much together as a trio. I feel forever blessed that we had this year together! And I look forward to the new adventures that await us, even if I am feeling a bit of premature nostalgia now over Julia's preschool years.

Ability Expo Recap

2011-06-02T22:04:00.000-04:00

We went to an Ability Expo in New Jersey recently. Holy Smokes! When I went to the website to add the link I realized the expo was a month ago. Time is really flying by!

Attending the expo was a great experience for us! Equally great was that we left Julia for a day with the grandparents and so we could "play" with all the cool items without catering to her boredom schedule. Since Emma loves people watching she was game for staying as long as we wanted and was thrilled to try out various equipment. For the first part of the day we had Emma's iPad hooked up to her chair with the articulating mounting arm from RJ Cooper and it generated a lot of interest and we eventually moved it to the car after lunch so we could move at a quicker pace through the Expo. We were pleasantly surprised at how easy it was to chit chat with some great parents of young children and it was fun to compare equipment, notes, experiences from the different areas on the East Coast. Meeting so many other parents is something I don't think we really expected but we really enjoyed.

The highlight for Emma was when she tried out a tricycle at the Freedom Concepts booth. We were so surprised to have her actually start to pedal the bike on her own! She pedaled twice and smiled the entire time. The bike needed a couple options that they didn't have there and the representative took down the measurements and configuration she would need to send us a price quote. We received the quote last week (Yikes! They are expensive!) and we are working on getting some funding to buy it for Emma. How cool would it be for Emma to have a bike to ride? Just SOOOO cool in this Mommy's opinion! We'll keep you posted.

Today I talked to Emma's PT about the tricycle and found out the hospital has the exact trike configuration that Emma would need. When I told him how serious we were about trying to get one for Emma he brought out the bike for her to try out. I was shocked he never mentioned the tricycle to us before and he said that it never occurred to him since we are working on so many things with Emma and he only gets her one day a week. Hmmm. Emma surprised everyone by pedaling around the therapy area for about 25 minutes and fussed excessively when her PT tried to move her to another activity that we decided to let her ride for another 5 minutes. We had to help steer the bike an sometimes line it up a bit so her foot was at the "top" of the cycle so she could pedal but Emma did 85% of the work in cycling around and it blew almost everyone in the therapy area (they all know Emma well!) away. Her PT even said he got goose bumps on how good she did. That's my girl! And because I'm sure you want to see it for yourself, here is a short video from today. Enjoy!

There were loads of cars and vans in all kinds of configurations to accommodate a wide range of equipment. We looked at the converted vans and decided that we aren't really ready to take that leap right now. Our minivan is paid off and we want to get a lot more mileage out of it before we get a new one. Besides, the power chair that Emma has is only a loaner for now and I'm not sure when we'll have to give it up. Emma's progress with the chair isn't going as quickly as I imagined and we are still quite a bit away from meeting the criteria of moving in a set direction and stopping when directed that is required for our insurance to consider buying a power chair. We learned about a lift that would help us transport a power chair and still use part of our third row seating. We are going to take a look at one in the showroom sometime soon. If anyone has any experiences with these lifts let me know the pros and cons!

We looked at a special tomato jogging stroller that was super easy to push. Emma will need the special tomato liners for the jogger and that takes the price up a bit. We are considering this jogger but want to try some other joggers first. I think we might be able to use a Bob Revolution jogger for a couple of years and there is a good resale market on them for when we need to move to the bigger jogger.

We also looked at manual chairs and power chairs. Emma tested out two power chairs - the C300 from Permobil and a sit to stand chair from Mobility 4 Kids. Emma seemed to perk up quite a bit when the sit to stand chair was moved to the stand position and she could motor around. Since there were a LOT of people and booths around the Expo we did not let Emma drive without help. Although she would like laugh and laugh if she ran someone over, I can guarantee you that she would be the only one laughing :-) It was just a quick test in this chair, but it made me wonder why other companies aren't making sit to stand power chairs? Here is a brief video of her testing out the chair and driving in the stand position.

If you have an Ability Expo coming to your area I highly recommend spending a bit of time checking everything out. It's so rare to have all this equipment and experts under the same roof and to compile all the testing and information we had in one day would likely take us ages through our local hospital or durable medical equipment provider.

Dancing Queen

2011-05-22T21:06:00.000-04:00

Julia had her dance recital last weekend. It was a fairly big production with a dress rehearsal on Friday night and performances on Saturday and Sunday afternoon. Chris took Julia to the Saturday show while Emma and I went to my niece Elizabeth's communion party. For Sunday, Julia had a whole fan club in the audience including me and Emma and both sets of grandparents! What a lucky little girl!

The show was great! The children are really talented and Miss Amanda and Miss Morgan did a wonderful job preparing the dancers and choreographing the songs. It was a two part show with a brief intermission. Julia performed her jazz dance in slot #6 and her ballet dance in slot #25. I know I am biased but I will still say that I think Julia's class gave some of the best performances. They were mostly dancing as a group and remembered their moves - better than expected for 5 year olds!

There was a group of darling little 2ish year olds that was just beyond adorable. Those little girls in their tutus were just precious even thought they didn't even come close to following the dance routine. I think everyone was smiling after their performance.

Julia's group performed to The Boys are Back (in town) for their jazz routine.

They performed to You'll Be in Your Heart for ballet.

Group curtain call.

There was a group curtain call followed by a presentation of trophy's to each student. Julia is over the moon with her trophy! It's her first one and she didn't let it out of her hands for the first couple of days. We took some photos after the recital and headed home for a good meal with everyone. Chris even had the table set and ready for us despite having run a full marathon that morning and not really being able to move too quickly.

We will miss the Elkton Parks and Rec dance classes next year. We won't be moving close enough to keep attending and so we are now considering Irish Step Dancing for next year. Julia's not sold on the idea yet but there is plenty of time between now and the Fall to decide. I'm also going to try and look into a dance class for Emma. The lovely Chloe did a dance program (click here to read about it) this year that had the children with disabilities dance with a partner's help. I'm hoping that we can find a similar program around here for Emma because she just loves to dance and loves and audience so a dance routine on stage seems like a great fit for her. If anyone knows of one in the greater Philadelphia area, please let me know!

I'll leave this with some more photos of the dancers. How blessed we are!

Julia and her best dance buddy Katie

The girls and their sisters

Julia with her fan club!

Posing with Daddy at home

My very own Marathon Man

2011-05-18T19:24:00.000-04:00

Chris has been running. A lot. And not even because he is being chased :-)

See. No one chasing him!

It started about two years ago when we entered a 5K for the hearing program at our hospital. Emma uses cochlear implants so it was a perfect event to kick-start Chris' training program. He finished the 5K without a problem while I walked it with the girls. We then did another 5K in memory of a little girl who was a lot like Emma and belonged to our church. Chris ran it while I pushed the girls around the course. It was hot and I was pushing them in the double stroller and Emma didn't really have enough support in the stroller so I had to stop every few minutes to reposition her. I'm happy to say we finished the course without coming in dead last. Chris placed in the top 3 in his age group for his running time and received a medal!!!!!

Chris' running continued past the 5K when he entered the 10 mile Broad Street run last year. The run just so happened to be on a record-setting heat day in May. Many people got carried off the course in ambulances because of the heat, but Chris ran the entire 10 miles and did great! We waited at the finish line and the girls participated in the Kiddie K events and I tried to keep them cool while I was busy melting from just standing. I can only imagine how hard it was to finish that race that day, but Chris did finish and in the time he wanted. On a high from the Broad Street run, Chris entered the ING Direct Half Marathon. It was early and in Philly. Chris headed to the run at the crack of dawn while me and the girls slept. We left the house trying to get there in enough time to see him cross the finish line. Apparently we left too late. It's sometimes hard to get up and out of the house at a decent time on the weekends and that was one of those days. We met up with Chris right after he finished and had a picnic in front of the Philadelphia Art Museum and enjoyed the music and fanfare.

After completing the 5K, 10 miler, and Half- Marathon there was only one stop left for Chris - the marathon. Running a marathon is no easy task. I say this not as a participant but as an observer and I have to say I'm so impressed with the dedication and energy Chris brought to his training regimen.
Running a marathon requires months of training and running. Getting up early on weekends and missing relaxing weekend mornings with his girls so he could train. Coming home from training and wanting to just sit around and relax, preferably with a beer watching sports in the recliner but......not being able to do that at all because it's the weekend and there are lots of things that have to happen. Like cutting the lawn, going to a ball game, cleaning the gutters, visiting family and friends, power-washing outdoor toys, etc. because he is now a family man with responsibilities (I have to think it would be a bit easier to train for your first marathon while still single or newly married without children). You get the idea. Not to mention that a good portion of the training took place over this snowy winter and so there were paths to shovel, hills to climb and sled down, cars to dig out. Yet, he continued training so he would achieve his goal of running 26.2 miles in about 4.5 hours.

Mid-race cheering section

The run was closer to home, the location chosen so I could bring the girls to cheer him on. Just 20 minutes away by car. His parents were excited about the run so they slept over the night before and headed out early to get a good spot to cheer him on. The girls wore their shirts that said "I love my marathon daddy." I loaded lunch, snacks, drinks, folding chairs and umbrellas in the car and drove to the 13 mile marker in enough time to see Chris run past us. The girls loved the action even though Julia didn't know why we were waiting so long before Chris came running down the hill. He had a great smile on his face at mile 13. We headed over to another section of the route to cheer him on again. We saw a lot of the same people pass us. Emma and Julia were a big hit with the marathoners - their cheering really seemed to perk up the people who passed us and most of them thanked us. A few asked if they were future marathoners :-) We were on a portion of the route that didn't have any real cheering section so I think they appreciated the support. Next time I'll have to remember to buy and bring a cow bell for Emma to help cheer for the runners. I think she'd find it funny! We saw Chris pass us. He always looks good to me but seemed to be struggling a bit more than at the 13 mile marker. We cheered our hearts out when we saw him coming and he passed us with a smile. Finally we headed to the finish line. We ate our lunch, the girls enjoyed a bit of the music and then we parked ourselves in the finish line lane. Cheering all the finishers on while waiting for Chris to appear.

When we saw him coming down the girls were squealing with delight and I couldn't have been prouder. What an accomplishment! We are so proud of you, Chris.

Cheering at the finish line.

Emma's face cracks me up. It's like she can't believe Chris is running 4.5 hours straight!!!

The girls and I headed out almost immediately because we had to get home and get Julia dressed for her dance recital. As I said, weekends are busy. We quickly found Chris and gave him kisses, congratulated him and headed home. He was a bit sore the next day, but by Tuesday he was already talking about his next marathon. I might have groaned a bit, but truthfully, we're behind you 100%! As long as we can cheer from the sidelines and not have to run the 26.2 miles along with you!

Back in the Saddle Again

2011-05-16T23:43:00.000-04:00

Emma took a couple of months off from horseback riding this winter. It was just too cold and snowy and she and Julia would give me a hard time about heading out to the farm. Plus, I was more than exhausted from just keeping up with our hectic pace of life and needed a bit of time without running to and from all the extra-curricular activities. So we decided to just take a breather and wait for better weather.

Now that the weather is warmer we've returned to the farm. Emma didn't seem to lose a beat - sitting straight up for long periods with less time hunched over. The girls were happy to see the "critters" again and noticed that a miniature horse was added to the mix of goats, sheep, turkey, and chickens. The mini horse was very friendly with me but didn't want any of the other critters to get any attention so he ran them off when they came over to greet us. He also didn't seem as happy to see Emma as she was to see him and we later found out he doesn't like little kids as much as grown ups. I don't think his permanent home will be with the critters and when we showed up last week with carrots he wasn't in the field with them, making it easy for our beloved goats to munch on the goodies. I know I've mentioned before that Emma has a fondness for the goats and it seems that absence has made her heart grow fonder with her legs kicking and squeals of delight she gave off when we stopped to see her goat buddies.

Here is a video showing how good she did - Miss Kris was able to hold her hands lower on Emma's stomach and Emma was able to use her arms better to "right" herself.

Julia was happy to break in her new rain boots at the farm. We bought them at our trip to the outlets on Mother's Day so she can bring them on our summer vacation. Although the weather was picture perfect the last two weeks, it seems we are in for a soaking this week so we'll be able to tell in short time if they hold up to the muddy fields she'll likely be running around in this summer.

We sure are happy for the nicer weather and that we are once again back at the farm!

Adventures in Roller Skating

2011-05-12T11:25:00.000-04:00

Julia is once again interested in learning to roller skate. She has the adorable skates that fit over your shoe and are adjustable and they came with knee and shoulder pads. Julia's feet are still pretty tiny and I didn't have to adjust the size this spring because she is still wearing the same size shoe as last year. My girls are lucky in that they have small feet - they get that from Chris. Anyway, she's been doing pretty good this year and getting more independent on the skates. She does fall but is now adept at picking herself up and moving on without too much of a fuss. Right now she skates for about 10 minutes at a time and after that she starts falling more and decides to call it a day.

I think it's much harder to skate outside on the pavement than indoors so I'm trying to find a time at our local roller rink that will let me take her to roller skate and bring Emma into the rink so she can skate, too, in her wheelchair. When I called the rink to discuss this with them they told me they only allow wheelchairs at a very early Saturday morning session. This time isn't convenient for us because we work on feeding with Emma on Saturday mornings (with the fabulous Annette!!!!). I'm going to call again and ask for the manager and see what he/she can do about letting us skate as a family at a different time of day because I think this could be a really fun frequent family outing and I don't want to leave Emma home!

Check out my big girl in action!

Wondering

2011-05-11T11:48:00.000-04:00

When you have a child with multiple challenges it's easy to wonder if the decisions you make are the right ones. And as Mom, I put a lot of pressure on myself to keep up with the various therapies, nutrition, equipment, etc. Since we are living in the information age you can pretty much bet that if you name it, there is information about it and Goggle is ready to provide various links to learn more about it.

Because we all want the best for our children, we often try and leave no stone unturned when it comes to knowing what is available to our children. We usually know more options out there than our doctors because we've forged a network with other parents across the nation and the world to learn more about what we can do to help our child achieve their desires. I say their desires because I've found that - overwhelmingly! - us parents are taking the lead from our children on what they want to do. For example, Emma is totally into moving these days and by gosh we are going to do everything possible to help her realize her goal of easier, quicker movement.

What is hard, though, is deciding which path to take to help them achieve their goals and staying the course. Because it's easy to find success stories about most of the therapy and equipment options, it's easy to second guess your treatment decision if your child isn't making as many gains as quickly as you hoped.

Emma is amazing us with how much she is moving and doing other new things recently. She is getting so quick at commando crawling, sitting with minimal assistance on good days, walking at home in her gait trainer, sometimes vocalizing Yeah when she wants something, opening her hands more and attempting to cross midline with her hands more often, sometimes playing independently with her toys, demonstrating her understanding of some new concepts like same and different in addition to just identifying objects by name. This amazing progress happened within the last year, and most of it within the last 6 months. To say that Chris and I are thrilled to see all her hard work paying off would be an understatement. To say that Emma has worked tirelessly (of course she has had an incredible amount of fun and adventure in her short life, too!) to get to this point would also be an understatement.

So, what is the point of this post? I'll get to that, but first I have to tell you about a little guy that Emma has known for the last 2 years. He was born very early and had a lot of challenges. He was further behind on his milestones than Emma when they started out at PT together, but that didn't matter and the become fast friends. He had very similar intervention to Emma. His treatment was at the same hospital with many of the same therapists and the same equipment. But today he is not as delayed in his milestones. We were happy to see him the other day walking with a walker (not a gait trainer, but the kind like the elderly use) and talking to everyone, blowing kisses and generally looking amazing! It was so nice to see how good he is doing - he seems close to catching up with his adjusted age!

Running into this little guy started me thinking. The results of intervention with him and Emma are very different. If we did not know him and that he had the same intervention as Emma, I might have asked what type of therapy he had and consider trying it for Emma. I might have wondered if Emma could have achieved her goals quicker if she had the same intervention as this little guy. And I would not have known that the intervention was essentially the same as Emma but with a varied outcome.

I also think that if we had changed Emma's treatment in the last 6 months and started seeing all the great things she is doing now we might have attributed it to the change in treatment instead of that all her hard work and intervention to date is paying off for her.

While I don't think I will stop wondering if Emma would benefit from other treatments, it's more concrete for me that there is a big benefit in deciding the best course of action and then staying the course. I also believe that we should adjust the course if it isn't right for our child, doesn't fit into our lifestyle, or is otherwise detracting from Emma's ability to experience life as a little girl instead of a patient. Because, truly, life for little girls should be about play dates, fun at the park, day trips to the beach, squealing with delight from amusement park rides, playing with dolls and dressing up as a princess, and lazy days around the house. And not all about therapy or doctor appointments if they can be helped.

I feel like this post is wandering a bit because what is so clear in my mind is so hard for me to put into words. But, what I guess it comes down to is that I'm glad our encounter with the little guy happened because it made me more aware of my wonderings and helped me to put them into better perspective.

***Note: When selecting photos for this post I noticed that I have very few photos of Emma in therapy sessions but I have loads of her out and about enjoying life. I'm taking that as a sign that we actually are giving her a pretty "normal" childhood. And that I need to take a few photos of her in therapy so I can go back to them someday when I'm looking to remember when.....

Sunshine and Lemonade

2011-05-05T01:43:00.010-04:00

We have seen a few beautiful sunny days around here lately and Julia has asked me to add lemonade to our drink mix so when we went to the store one weekend we added it to our cart. She sure does love lemonade! I do too! I haven't tried it with Emma yet, but I have a feeling she will be happy to replace her hot chocolate treat with a bit of refreshing lemonade. Hmmm....I might have to give her a little taste once the sun comes back and see what she thinks!

Julia is interested in starting a lemonade stand this summer. I'm going to work with her to pick a location (and discussions with the owner!) for the stand and pick a date then spread the word to everyone we know to come out and support her stand! It would be great to have a big turnout because she is going to donate a portion of the money she makes to charity to help stop the spread of CMV. Or, as she says it, "So other children don't get a boo-boo in their brain like Emma." We're waiting for consistently warm weather to really work on the details of the lemonade stand so it probably will take place in the summer. I'm really excited that Julia is learning about "giving back" at such a young age and plan to support her efforts 100%.

I'm wondering if people would rather buy fresh-squeezed lemonade or would be OK with the mix. Let me know if you have seen either one do better at the kid's stands. I'm also thinking of having soft pretzels to sell with the lemonade and hand-outs on CMV to spread awareness. If anyone locals has ideas for a location or is interested in helping Julia in the stand please let us know.

This and That

2011-05-01T23:10:00.000-04:00

I love the Spring. For me it means new beginnings, beautiful flowers, long afternoons spent outdoors, lots of bubbles, family walks, time at the park, time in my garden.

Family photo taken Easter Sunday

I have a funny story. Chris and I were talking about how we will celebrate Mother's Day and he said he knows how much I like working in the garden and weeding and perhaps I'd like for him to tend to the girls while I take some time to weed the garden. Seriously! I had a good laugh over this - him suggesting that me weeding the garden would be a highlight to my Mother's Day. I do like to garden but weeding is not on the top of my fun list! I love the garden once it is weeded, but doing the weeding not so much love. Poor Chris felt so bad about suggesting after when he spent a moment to think about the suggestion. Needless to say I won't be weeding the garden on Mother's Day :-)

Julia and Emma with MeMom and PopPop

This year I've been a bit lazy on my garden. We are *still* trying to sell our house and I would rather not put in the work for a vegetable garden when we will be moving soon. We've worked out a back-up plan in case we don't sell our house because we really have to move. Chris is completely exhausted after 7 years of a 3 hour (1.5 hours each way) commute to work and with Julia going to his school in the Fall for kindergarten we need a reasonable commute time. We also want to be closer to family and in a school district for Emma that she will attend for a long time. Because it's hard on her (and us) to transition out teachers, therapists, etc. She will have a couple more years of preschool and we would like them to be in the same school district that she will attend kindergarten. This move is turning out to be more stressful than we anticipated, so send good vibes our way for it all to have a happy ending soon!

Emma is crawling so much and starting to get *stuck* under things. I love seeing her move!

Julia and Emma are changing so much. Emma now has some freckles on her nose/cheek area. They look super cute and I love noticing her cute little freckles. Julia is getting older by the day and asking hard questions. Questions that I don't always have the answers to and that actually make me think before I respond. I like learning how she is processing her world by the questions she asks - it really drives home how mature she is getting.

This weekend was Family Day at the race track. There was a moon bounce, face painting, pony rides, live horse racing, and a bunch of other fun things so we took the girls. They loved it! There are several more this summer and we hope to make it to another one. Today the fun continued when Chris took the girls to the minor league baseball game to help celebrate Rocky Bluewinkle's birthday. They had a ball while I got some time to myself to grocery shop and sew a new dress for Julia. I love little family and we have so much fun together!

Last week Emma tested out the eye gaze communication system. It did not go well. I guess I'm not surprised that it didn't go well, but I am a bit sad that it didn't go better. I truly hoped that Emma would find her voice in the eye gaze system but she seems to prefer a more tactile communication system. We did get some suggestions on what to try so we can move her closer to an eye gaze system and we will pursue them. We are working hard on giving Emma a non-technical Yes/No. She does say Yeah on occasion and we are having her make an attempt to say Yeah or shake her head yes before we give her something she is communicating she wants. I'm happy to say she is doing better at this than previous attempts. She said Yeah for her bottle twice one day this week, which is amazing progress. She is also shaking her head no more often. I wrote a story on her iPad and we were reading it on Saturday with her OT and Julia wanted to turn some pages and Emma kept shaking her head no when we asked if Julia could turn the page. This is so uncharacteristic of Emma because she is usually much more agreeable. It's nice to give her a low tech Yes/No that she seems to be using. We've worked on this for the past few years with not much progress - she definitely prefers high tech solutions! - but this time I feel like she is ready to implement it. I sure hope she continues to use her Yeah/No more frequently because I just love to know what she thinks and hope it will help cut down on her crying a bit.

That's the update for now.

Good News: Hips!

2011-04-27T09:23:00.000-04:00

One of the specialists Emma sees on a regular basis is an orthopedic surgeon. Since Emma isn't standing or walking like a typical 3 year old and she has high tone in her legs there has been some concern about her right hip not sitting in the hip socket correctly. Typically once it starts to get 20% out of the socket the doctors start to get concerned. Emma's has been out as much as 38% out. At her visit 6 months ago she was out 33% and the doctor gave us some initial discussion/indications about possible surgery in her future. He also gave us certain stretches to do that could help her hip go back into place or - at the very least - help prevent it from pulling out further. Chris and I were less than thrilled about that discussion and left with a renewed interest in adding stretches to Emma's daily routine.

Yesterday Emma had her 6 month follow-up and the x-ray showed that she is down to 27% out. Yeah! We are headed in the right direction and not discussing surgery at this time. The doctor even mentioned that at her 6 month folow-up he will not need an x-ray unless his exam on her gives him concern and, if that happens, she'll go down the hall and have one done. It is soooo nice to leave a doctor's appointment with good news for a change!

I have a feeling Emma's love of commando crawling and walking in her gait trainer are helping her make great gains with her hips. Chris is also focused on stretching Emma each night as part of their routine and we will continue to make this a priority so we can keep surgery at bay. We took the last two month off from horse riding because of the cold and snowy weather and hope to start Emma riding again in May. Riding the horse helps give her legs an extended stretch and movement while she is enjoying a ride around the farm. I've noticed that Emma's trunk has gotten weaker lately and mentioned this to the doctor. He said the horse riding should help with her trunk muscles so I'm wondering if the break in riding is the reason for her "floppy" trunk lately. I'm not sure if its the sudden change to warm weather or not, but I'm looking forward to seeing if starting up riding again will help her control her trunk muscles better.

Movies and health care musings

2011-04-26T23:07:00.000-04:00

If there is a {fluffy} romantic comedy or feel good movie you could probably bet that I'm interested in watching it. The last few years I've found guilty pleasure in escaping the everyday realities of life for some good fluff. Besides the brief, but emotional, investment in Band of Brothers we watched over Christmas, I haven't been interested in watching much else besides the fluff.

This wasn't always the case. I took a documentary film class in college - Senior year elective that I thought would be a cake walk but wasn't - and kind of fell hard for good and even mediocre documentaries. The past few years, though, I've been snubbing documentaries and even avoided attending positively reviewed shows at our local film festivals. But this couldn't last forever and our Netflix cue seems chock full of documentaries (that I must have loaded one day when Chris let me loose to update our cue) based on what they've been sending us lately. King Corn, Enron, all things Michael Moore - Chris keeps talking about reviewing the cue to throw in some action and adventure movies because he has been avoiding watching the Michael Moore disks that show up.

Last week I watched Sicko. If you can overlook some of the corny narration it is a very interesting look at our health care system. Is it one sided? Probably. Is it thought provoking? Definitely.

I was at Easter mass and had a flashback to a portion of Sicko and a portion of What Would You Do? (the show where they put actors in situations to see how real bystanders react). I just kept thinking to myself that Jesus died on the cross for us and what his request to us was to love one another. Seems like a fair trade for the promise of eternal life, right? I wondered how good we are doing at the love one another request when in the USA, one of the wealthiest countries in the world, we continuously argue over covering basic medical care for our people and feeding our poor. Really? What the heck is our problem?

I'm not going to fire myself up this late at night, but suffice it to say that I've acquired gray hair and I've learned a LOT over the last 3 years about health coverage, health insurance, and how coverage for our disabled children varies greatly based on both your insurance plan and the state where you live. I can be a bit dramatic, but I mentioned to Chris the other day that I think our country has a "caste" system when it comes to health insurance.

And I began to feel a stronger call to action on keeping the budget intact for the disabled children.

And I think after reading this post Chris will feel a stronger call to action to review our Netflix cue.

Happy Easter

2011-04-23T21:44:00.000-04:00

I love Easter for so many reasons! It signifies new beginnings, a celebration after the Lenten season, and usually means spring weather/flowers/activities.

This year we started our Easter celebration early. We had some friends over for an egg hunt, crafts and marshmallow roast and everyone had so much fun that I am thinking of making this an annual event. It makes me feel so happy when I see how much joy these gatherings give my little ones! They were pretty much over the moon with all the fun and that made me feel pretty much over the moon, too.

Even though it feels like we aren't having much good luck lately (anyone want to buy our house???!!!), it might be turning around a bit. We won tickets from a local radio station to see Sesame Street Live. The show was 1-2-3 Imagine starring all our Sesame Street friends and was a big hit with the girls.

Before we headed over to the show, we had some fun dyeing eggs. I'm happy to report that this year we were more successful than in past attempts! We used basic food coloring along with vinegar and boiled water instead of the contents of the PAAS kit that we purchased. We did use the stickers and egg holders from the kit along with the memory game so it was worth the $1 even though we didn't use the color things (I have no clue what they are called!). The girls had a lot of fun picking the colors for their eggs. Julia loved the red color the best. For Emma, we showed her each color and let her use eye gaze to pick which color she wanted to dye her eggs. The girls alternated turns in dyeing the eggs and it was great that both girls could fully participate this year. I'm not sure if it is the set-up we had or that Emma is now older, but it seemed to work well and I plan to repeat it again next year.

Emma made an adorable bunny ear hat at school that she and Julia wore to dye the Easter eggs - Emma is so good at sharing (and keeping secrets!). I just can't get over how grown up my girls look in the bunny ears!

This morning was a washout so we pulled out the face paints and Julia and Chris got their face painted while Emma got her had painted. In a perplexing turn of events, the afternoon turned super warm and sunny so we headed outside for some fun and power chair work for Emma. Tomorrow we are headed out to Easter dinner with our family and that is sure to be another highlight to our weekend.

We sure are packing a lot of fun into our Easter celebration! Now, if we can find out where Julia's Easter bonnet went we'll be all set for church in the morning where we will all rejoice in the true celebration of Easter. Best wishes to you for a wonderful Easter holiday!

Random Bits

2011-04-21T12:05:00.000-04:00

I just wanted to remember a few things that happened in our house lately, so I'm making a random bit post out of them like I've seen other bloggers do. Makes it easier than having to keep an offline journal to remember all the bits :-)

Julia didn't like the song on the radio the other day, but I love it so I was singing it loudly and having a ball. She kept asking me to stop singing and when I sung louder she yelled - "STOP, Mom. You're Freaking Me Out!" That actually made me stop and laugh so hard that I had a better time laughing than singing.
We were milling about in the kitchen tis weekend discussing what to make for dinner and Julia came walking in, put her hand on her hip and started shaking her hip back and forth like she was dancing a bit. She looked like a teenager and then she said really loud, "Daddy, I'm going to be doing this in my recital so you're just going to have to get over it!" and then she walked away. Chris and I both had our jaws drop at that. When did Julia get so OLD? Oh, my, we are not ready for this, not one little bit.
Emma is going to test out the DynaVox Eyemax system next week at our hospital. I'm so hopeful that she might find it easier to communicate with her eye gaze instead of using her hands to select an item on the ipad or switch. I'm also so nervous that she will not cooperate for the test. We've been working on training her to select items using a plastic sheet with PECS cards in the 4 corners. She had used this communication system before we introduced the iPad so it's not a new concept for her. She did well in the beginning but really has very little interest in this mode of communication. I'm hoping that she will be more interested when the items are on a computer screen because she does like computers. I'm really trying to have Emma break out of her comfort zone of sticking to mostly communicating her pleasure and displeasure through smiles/laughs and cries and get a more advanced communication system that she doesn't have to work so hard with her limited motor skills.

Tutu Fun

2011-04-17T16:27:00.000-04:00

Julia has been taking a fantastic ballet and jazz class at a local rec center. Miss Amanda is the teacher and she has so much patience and makes teaching a group of rambunctious 5, 6 and 7 year old look easy! The recital is coming up in May and everyone is excited about dancing on the stage. Julia constantly makes me laugh and I find it funny that my girl can be so shy at school while always looking to put on a show and strut her stuff on a stage!

This weekend we had dance photos and Miss Amanda picked the ballet costume for the photos because it is much fancier than the jazz outfit. The kids looked adorable! The costumes reminded me a bit of Tinkerbell and since Tink is such a hot fairy for little girls these day the girls just loved to prance around in them and play with the tutus. So cute!

Here are some photos I took of our photo outing. Julia is in class with her great friend Katie so I had to get some photos of the two of them together and of course a silly face is one of their favorite poses. Enjoy all the blue and purple and five year old silliness that abounds in the photos.

Photo Fix

2011-04-15T22:42:00.000-04:00

I'm still playing with my camera these days, but not getting as much time to do some editing. The good news is that I'm starting to learn more about my setting to take better photos that need less editing, the bad news is that I have a load of photos that are less than ideal for sharing with you that helped me learn this - funny how that happened :-)

I had Emma in pig tails the other day. I adore seeing her in pig tails! And without a hat. The hat is necessary to keep her CIs on most days as the magnets just fall off her head, but she's getting better at holding her head up so we use the hat at home less and less. And that means I can put in some cute pig tails even though she hates when I fuss with her hair! I decided I need to share her amazing cuteness in pig tails here for everyone to enjoy.

Emma still likes to swing on her Wingbo and loves to look at all our photos on her door as she swings by it. Julia took all the photos from our Christmas cards and covered them with contact paper and then we posted them on the girl's room door and they both look at the photos a lot and Julia usually comments on one or the other most days. I got this idea from a friend and think we will do it every year because I just love looking at all the Christmas photos and can't bring myself to recycle them at the end of the season.

In other news, Julia has decided that she likes getting her photo taken again after a bout of telling me "that's enough" every time I turned my camera on her. It seems that she likes to pose a bit and I've learned that the area above our steps is a horrible place to get good exposure for photos without a flash regardless of how bright it is outside. I'll have to change her favorite location for me to take pictures because some of them would be really cute if I could get good lighting and better focus and no amount of photo editing makes them look that good. In the meantime I'm enjoying taking photos of her going about her business of play outside (photos to come later) where we are spending more and more of our time. The warmer weather is a welcome friend here!

Hopeful Parents

2011-04-12T18:43:00.000-04:00

My post is up at Hopeful Parents today. Click here to see it on the site, or you can read it below. I had fun writing this post and hope you enjoy reading it!

I'm a Borrower

There are many days when I have it together - strong, empowered, feeling full of sunshine and happiness. You know the days - what we would consider the "highs" in reference to the highs and lows of life. I bet I'm not alone in saying that I love those days! I love to celebrate them and find little moments to do a happy dance because I know they do not last forever.

I am truly grateful that I spend most of my time on the positive side of the highs and lows, but it is inevitable that there will be some low periods. And that is when I go into my borrow mode where I seek out people who are in the high and use their optimism and experiences to get through the lows as quickly as possible.

Wondering why our house is staying on the market for what seems like forever? Why my non-verbal child isn't as excited to use an augmentative communication system as I am for her to use it? Why my child will happily walk in her gait trainer all around our house but not even so much as move a foot forward when I bring it to school or private therapy for her (this takes a bit of effort on my part!) to use? Why there is always a unexpected expense just when you found a little bit of money to get ahead? Dreaming of how easy it would be if we didn't have to jump through ever higher hoops to get services, equipment, etc. covered because we won the lottery and could pay out of pocket? Questioning what the future looks like for our children with all the budgetary cuts getting tossed around by our legislators?

Thinking about all this is enough to put me in a grumpy mood so it's good that - this Hopeful Parents post aside! - I don't usually dwell on these at the same time. But when I do start moving to a grumpy, less positive outlook on life I seek out and borrow faith, hope, joy, and resilience from others. I talk to people who are positive, read blogs about children achieving, revisit Hopeful Parents posts that left me warm and fuzzy.

Doing these things usually works to help me fake it until I feel it. And then something magical happens. I start to swing back to a positive frame of mind and don't have to fake it anymore. Yes, I am a borrower. And my outlook on life is all the better for it.

Kristina contributes to several blogs and hopes that she can sometimes be a lender to those who need some help to fake it until they feel it.

A Tribute to Finney

2011-04-04T11:21:00.001-04:00

Emma and Finnegan are the best of buddies.

Emma loves to walk. Her favorite destinations are the glass patio door and wherever Finnegan is.

Finnegan used to move out of Emma's way, but the newness of Emma's walking has worn off.

Now Finney just digs on in when Emma comes over to her and tries to walk over her.

Finnegan is not a bit worried of Emma stepping all over her.

In fact, she just lays her head down and sighs.

Emma thinks this is very funny.

So do I.

The end.

Breaking News

2011-04-03T15:05:00.000-04:00

Psssstttt.....notice anything different about me?

No?

How about now?

Yes, my tooth finally came out! You can even see the new tooth because it poked through my gums already! I was so excited when it came out and rushed to get my tooth pouch and light that came in my tooth fairy book kit. That way, the tooth fairy would pay me a visit. I put the tooth in the pouch and placed it under my pillow, turned the light on and left it next to my bed and this morning when I woke up I found $5 in the pouch where I put my tooth. Mom and Dad told me the tooth fairy leaves more money for the first tooth than the other teeth, but I was so very excited to see that she came! I'm saving money for a Barbie doll house and I've added my tooth fairy money to my savings. And I love to show off my missing tooth so next time you see me ask about it - that is if I don't run up to you and tell you all about it right away!

A glimpse into our day

2011-04-01T15:50:00.001-04:00

Julia seems to age by the moment. Right now she is anxiously awaiting a rite of passage - the loss of her first tooth. It is a bottom tooth that is holding on by a mere thread. I think it might come out before the weekend is over so I had her give me a great big smile and snapped a photo. I love her smile and needed to capture it one more time in all its baby tooth beauty.

Emma is a flurry of movement these days. This morning we had some one-on-one time together and I was really enjoying playing with her. I was in for a big surprise when she asked to go in her crawler and told me in no uncertain terms to leave her alone. She wanted to crawl all over the place and get into things without Mommy moving things out of her way. After all, it's hard to get into some mischief if everyone keeps moving all the things to get into out of your way! So, I left her in the crawler and put away a couple loads of laundry (it seems there is never a shortage of laundry going on in this house!) checking on her every now and again.

She moved from the living room to my bedroom to explore the Easter baskets filled with grass that were on my floor. She found the butterfly wings and I helped her put them on because every little crawler needs butterfly wings! She continued on into her bedroom to check out the bookshelf and eventually made her way over to Finnegan where she needed a bit of a rest and laid her head down on her faithful pup. Finally, she headed back into the living room and decided she was done crawling. I knew this because she started to yell and scream and when I started to help her off the crawler she started laughing. I loved capturing a bit of Emma's adventures this morning and hope to see this independent side of Emma more and more.

Help! Someone quick, move me a bit so my wheels aren't stuck in this door!

That's better. Now I can move again! I love how you can see in this photo how quickly she is moving.

I love looking at my books at this level!

I'm learning to be careful and not knock my head into all my books.

Finney!

You don't mind if I use you to rest my head a bit, do you Finn?

Slow and Steady....Walking!

2011-03-28T23:17:00.000-04:00

I know I've written a lot about how Emma really wants to move lately. Scoot, crawl, roll, walk. This what she is interested in. Communicating with us, not so much. Moving to get from one place to the other, sign her up! She is not deterred by how hard and how much work it is for her to move, she simply digs in and uses 110% of her energy to achieve her goal - movement. It's amazing to watch her and I get so inspired by it.

We've been using the KidWalk a lot lately. Inside, outside, on the deck, at PT. It's easy to know when Emma wants to walk - she either scoots over to the KidWalk and looks at me or when I start moving it near her she squeals with delight. When she doesn't want to walk, she will resist getting on the seat and we know she isn't interested. But, mostly she wants to walk.

We've had the KidWalk since right before Thanksgiving. We selected it after trying several different gait trainers and this was the only one in which Emma actually moved her feet. I brought it home and we tried to show Emma how to use it to walk. We tested it with braces, without braces, on hard wood floors, on carpet, in quiet rooms, at birthday parties. Emma showed a huge desire for wanting to walk in it but most of the time she wound up in a position where she was sitting a bit back on the seat with her legs out in front of her and no way to get back into a standing position on her own. To help her be successful we would hold the KidWalk in the "sweet spot" with Emma standing upright and when she took steps we would help her move forward by assisting the forward movement of the KidWalk. I was beginning to wonder if she would learn to walk in the gait trainer on her own and if we selected the wrong gait trainer for her.

Then Emma got new DAFO braces. And she didn't really know how to walk in them. The new size braces, the new size shoes. You could see her mind working to figure out how to pick up her foot with the new constraints. It took her a while but she managed to pull it together and start moving her feet. This, along with the increased time in the KidWalk and her huge desire to move really seemed to make things click for her!

I'm beyond thrilled to see my little one taking reciprocal steps independently. She sometimes goes fast, sometimes slow. She gets caught in corners and walks into some walls. It makes me deliriously happy! My little girl is really starting to walk. Her first steps. Her first steps! So much more meaningful to me because of all she had to overcome to achieve this milestone.

I made a movie of her progress towards walking. Emma is just starting to explore her world on foot. We will help her build up stamina, learn to adjust to walking without so much tilt in the KidWalk (it can adjust to more upright positions), and take her out and about in it. I'm sooooo looking forward to see what Emma does at the playground in her walker. Once the weather gets warmer we'll head right on over to our local accessible playground. I'm so proud of my little girl!

My one little word for this year is Faith. Emma continues to remind me to have Faith that all things are possible.

A taste of freedom

2011-03-24T18:24:00.000-04:00

Emma loves people. I mean, she LOVES people. She's the happiest at Church, ballgames, and any public event. She just loves to people watch and be around people. Simple as that.

Her love of people makes it super easy for us to take her out and about everywhere we go. She isn't a bit overwhelmed with noises or people. In fact, she thrives on them. When we are out in public Emma gets a lot of "sneaky" PT work - looking here and there, she's not about to let her neck flop over and miss any action! When we are at home she always wants to be in the center of the action, in the same room as us. The challenge with this, though, is that we are often moving about the house from room to room and we don't love to keep Emma in her rolling equipment all the time so we can easily take her with us. If we have her on the floor and we leave to go to the bathroom or put away some folded laundry she cries because she can't follow us and she can't efficiently move to a different toy or area. This leaves her in quite a predicament and results in a lot of frustrated crying.

Emma's situation is starting to change, though. She is getting really good at using her crawler to move around the house. She is managing to turn corners a bit bitter and move from the living room to the bedrooms to follow us. She is also starting to take more steps in her KidWalk. She can't turn the KidWalk on purpose (she does turn it by mistake and run into things quite a bit!) and follow us around but I feel that will come eventually.

The other day I was cleaning the bathroom and put Emma in her crawler. I kept popping out to check on her every few minutes and found that in a matter of seconds she made her way across the floor to look outside the patio doors. My heart melted. Melted! Then I grabbed the camera to capture the moment of my girl looking out the patio doors waiting for her beloved dog to return and demand re-entry into the house. She was even yelling out the window for Finnegan!

Isn't this the cutest photo! I just love looking at it. One thing that I miss is seeing Emma's little tush during the day (diaper changes don't count). She is often in equipment that covers it or laying on her back and it's so nice to see her cute bottom in this photo! A couple of minutes later she managed to wander under our kitchen table and I helped her spring free. She had been moving at a very quick pace and took a small break under the table, thus her floppy position. Once she was out from under the table she perked back up again.

Emma's new-found bit of independence is quite liberating for her and for me. It gives her control over getting to the toy she wants to play with, wander to another room to find someone, and a way to get into a bit of mischief. And for me, it allows me to put away laundry and some other stuff around the house without feeling guilty that Emma is stuck somewhere without me.

Cerebral Palsy Awareness Day

2011-03-20T21:52:00.000-04:00

Today is officially Cerebral Palsy Awareness Day!

I wanted to do something special for today. I had thought about pulling together some facts and information for you, maybe even posing a video. Then I saw this video on YouTube and thought it is the perfect video for today. It's three minutes long and I love it if you would take the time to watch it - it would me a lot to our family.

And, if you take the next step to raise awareness for CP funding and research (plus continuing health care coverage!) with your representatives please let me know. We'll make a short video of Emma saying thank you and blowing kisses and send it to you via email :-) How could anyone resist that????!!!!

St. Patrick's Day Recap

2011-03-17T23:06:00.000-04:00

Today was a gorgeous day. The sun was shining. Emma had off from school to stay far away from the chicken pox that some of the kids had and with only Julia to go to school we all slept a bit later than usual. We awoke to find that leprechauns had visited our house. The toilet water was green, the milk was green, and there was a bag full of rainbow lollipops for Julia's classmates. Silly leprechauns!

St. Patrick's Day is a day we celebrate to the fullest each year. My Dad came over on the boat from Ireland in his 20s and never looked back. Err...he might have looked back, but each visit home had him coming back here - I think it was meant to be for him to meet the love of his life and start his family here :-) Over the weekend we created and decorated a banner to string across our living room wall. Today there was the leprechaun visit and a trip to McDonald's for a Shamrock Shake.

Actually, Emma was just so engaged in everything today. Since Julia was at school and Emma home with me without any therapy appointments on tap (a once in a blue moon occurrence) we got to have some good old fashioned fun. Let me tell you she is a delight to be with, but everyone probably already knew that! I put her in the KidWalk because she just seems to want to MOVE all the time lately. I've talked a bit here about how she is "walking" in the KidWalk but if I'm really honest she was mostly doing a hop with both feet when no one was holding the top of the walker just so. Anyway, today she walked in the KidWalk All. By. Herself. With her braces on. Yep, really! And it just blew me away! It's so hard for her to walk in her braces since they are new and require a bigger shoe and lots more coordination than stepping in her sneakers without braces. She didn't just walk once, she walked the length of the living room several times and came in the bathroom to find me once. We were playing with the baby dolls and feeding them, putting them to bed in the cradle, covering them with blankets, rocking them when they cried and I kept moving the cradle to the opposite end of the living room floor each time we put them to bed and Emma would walk to the cradle to get to the babies and rock them and take their blankets off and toss them on the floor. Did I mention she blew me away? She also made a lot of sounds today. Especially on our long walk where we saw a sure sign that spring is almost here - the blooming crocus flowers! Bring on the good weather.

Julia didn't eat too much of her lunch today because her wiggly tooth is getting "wigglier" and it hurt to eat her PB&J. No worries, Shamrock shakes to the rescue! We hit the drive thru on the way home. Let me tell you, Emma went bananas for the shake! She screamed and yelled at me everytime I tried to give her some real lunch food until I gave her more of the shake. Needless to say she had a shake for lunch with a side of lollipop and she enjoyed every minute of it. I was thrilled that she showed an interest in using her tongue to lick a lollipop and will consider the lollipop used for therapeutic purposes! We spent the rest of the day outside enjoying the beautiful weather. Julia was on the move with her scooter and car, Emma was on the move on the lawn. She kept moving off the blanket I laid down for her and came up with lots of grass stains on her stockings. I love it! Since she really was intent on moving and I didn't want her to scrape her face with her scooting around I decided to bring the KidWalk outside and she managed to walk a bit more in it.

Emma started out on the far back corner of this blanket, with both shoes on!

We had a dinner of Irish sausages and fingerling potatoes followed by more time outside. It was a lovely St. Patrick's Day and I'm hoping all the activities of the day will result in a good night's sleep for all of us.

I wish everyone a Happy St. Patrick's Day and leave you with an old Irish Saying:

May you live as long as you want, and never want as long as you live.

*******

This post I remembered to include some information on Cerebral Palsy for Awareness! So, here are a few more tidbits I'd like to say:

Emma has CP, but it doesn't have her. I don't recall ever meeting a happier child that is thrilled with life despite it's many challenges.
Having Emma in our life is a joy. I love her exactly the way she is. I hate when people say they are sorry about Emma or they feel bad that Emma has CP. I'm not. Emma beat LOTS of odds and fought to overcome CMV to join our little family. She teaches me things every day. She has a lot to teach us if we are willing to learn.
CP is a lifelong condition. It can be managed effectively with the help of therapy and special equipment. Most of this is not covered by traditional insurance. We have had to rely on Medicaid to supplement Emma's primary insurance. It is important to remember that many children on Medicaid have chronic conditions that their primary insurance does not fully cover. Now, more than ever, we have to be sure our politicians are not cutting the insurance coverage that so many families with special needs children need just stay afloat.