Monday, January 30, 2012

Finnegan....just because

I took lots of photos of Finnegan for my photo class last week.  One came out particularly good so I wanted to share it.  To us, Finney is more than just a dog.  She is an integral part of our family. 

Just like everyone else in our family she has her quirks.  Finnegan is afraid of the kitchen floor in this house and won't come in the kitchen unless she is on her leash with no means of escape back into the living room.  Her paws just can't get traction on the laminate floor and she pretty much belly slides through to the back door.  This has done wonders for her weight and she has dropped 10 lbs. since she no longer cleans the scraps up from the floor.  It has also left me to do the daily kitchen floor clean-up without any pre-clean from Finney...sigh.  She also needs lots of encouragement to climb our stairs, runs from the vacuum cleaner, and requires a ridiculous amount of tries to jump up on our bed (when we are trying to convince her to sleep in a bit later on the weekends we invite her up on our bed).  But, her quirks are really all inside quirks.

Outside, she is all dog.  Brave, protective, excited to greet all the people we meet on our walks and less than excited to see the other dogs we meet.  She has never met a lawn she didn't want to sniff and when she senses a threat to her family (i.e., most little dogs passing by) the hair on her back stands on end.

She's getting a bit gray in her mouth and I think it makes her look distinguished.  She is 9.5 years young.  I hope she sticks around another 9 years because I just can't imagine our life without her.

We love you, brave Finnegan!

Now, please stop sneaking up on the couch and falling asleep on the pillow when you think I'm not looking.  You look cute and comfy and quite frankly it makes me want to join you.  I don't have as much free time to fritter about in naps so don't tempt me.  Thank you.

Friday, January 27, 2012

I love days when things just come together

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.

Wednesday, January 25, 2012

Potty training update

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

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.

Monday, January 23, 2012

Little updates

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.

Sunday, January 22, 2012

Valentine's Day Thoughts

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!  

Friday, January 20, 2012

Emma walking and playing ball

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!

Thursday, January 19, 2012

Mealtime Communication

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!

Tuesday, January 10, 2012

Cutest little stinker - caught on camera

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!

Sunday, January 8, 2012

And we're off to a good start!

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!

Wednesday, January 4, 2012

Birthday Circle

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

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!

Monday, January 2, 2012

Happy Birthday, Julia!

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!

Mommy and Daddy