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Tuesday, December 28, 2010

Christmas 2010

Every year on Christmas Eve we head to my parent's church for mass and then back to their house for some good food and great company and a visit from Santa Claus.  The kids love spending time with each other and opening a few (ahem....a LOT) presents before heading home to bed in hopes that Santa did indeed have them on his GOOD list.  And, of course they all were on the good list :-)

By the time Chris and I get home it is quite late with quite a bit to do that includes getting our breakfast casserole ready for the morning and helping Santa arrange all his presents "just so" under the tree.  Then, we kick back with a drink, some Christmas carols and only the tree lighting up the house.  It's a brief bit of quiet bliss before the morning starts the festivities again and it's a favorite of our Christmas traditions.

This year Santa had the girls on the VERY GOOD list.  Did you know he had a very good list?  I didn't, but he explained to me that I had never made it past the GOOD list so he wasn't surprised to find out that I didn't know about the VERY GOOD one.  Hmm.....I wonder if this has anything to do with how much he liked Julia's cookies?  They were very tasty and decorative! 
This year was a bit of a magical year for Julia.  I think at the age of 5 you are so filled with wonder and excitement that everyone around you can't help but be filled with eager anticipation for Jesus' Birthday and everything that comes along with His birthday!  She loved every one of her gifts and has been playing with each and every one of them every day and I think the joy of playing with the new toys will take a long time to wear off.  Santa brought her the cash register, walking kitty and tea set that she wanted and he also thought to include Cinderella's Wedding Gown and a play school set.  When it was time to get dressed Julia donned the wedding gown and wore it all day!  She told me that when she was on Santa's lap she told him that we are going to Disneyworld next year and that is the reason he brought the Cinderella dresses for her and Emma.  Thank you Santa for being so thoughtful!
Finnegan meets the walking cat while lounging on the blanket and playing with the sock puppet Santa left for her.
  
Emma was sound asleep not a bit worried about Santa's arrival but her slumber was cut a bit short when Julia decided to wake up early.  We managed to coax her to wake up enough for us to venture out into the living room as a family, but she really started to wake up when Julia helped her look at all her new toys.  She received a Barbie and Pony and the Pony walks when you press the button on his back.  The pony caught me off guard with how quickly he walks and Barbie took quite a few spills on her Pony!  I'm glad to say that Emma has not seen any similar falls during her weekly pony rides at The Center - thank goodness!  She also was thrilled with her Penguin Race game that I added a battery interrupt switch to so she can activate it with her switch.  I am hoping this will help us teach her stop and go better since she doesn't seem to want to ever stop on her Cooper Car that we are using to get her ready for a power wheelchair.  So far she is a bigger fan of go than stop with the Penguins, too, but I think it is just a matter of time before she starts to play the Stop/Go game with me and the Penguins.  A remote control puppy was also a big present for her.  It is so cute!  He is a yellow lab and will walk, sit and bark based on the buttons you push on his bone shaped remote control.  I plan to add these commands to her iPad so she can see very quickly that when she pushes a command on the iPad that something happens.  I hope she has fun with this one as I am always looking for more ways to motivate Emma to communicate other than her smile, cry and eye gaze.  She also received Cinderella's Wedding Dress and a big girl tray table that will go over her ChildRite chair when it is set on some wood to elevate her feet a bit.  Julia loves the tray table and has already made a request that Santa puts another one of them in his bag for her next year.  Oh, how I got a laugh out of that one - with Santa scarcely out of our house we are already thinking up things for next year!




Two other presents that were instant hits came from the grandparents.  Julia received a pink microphone and immediately put on a show for us after dinner that would have rivaled Hannah Montana (and yes, she received that movie which she loves and will likely use as inspiration for more of her performances).  She started out a little shy since this was the first time she wasn't using a baby bottle as a microphone, but eventually started dancing around, taking the microphone out of the holder, rocking the stand back and forth and doing turns.  I captured some of the performance on video and will post a bit at another time.  Emma received a pink hippo tent and when she realized what it was when I opened it she squealed out loud and gave such a happy reaction.  She didn't react much to the rest of the presents other than interest, so I was more than thrilled to see her reaction to the tent.  She has been playing in it quite a bit and it usually rocks back and forth from all her laughter in it.  The tent folds flat when not in use which makes me super duper happy, and it is large enough when opened  up that Julia can wheel her tea set right into the tent and have a tea party with Emma while Emma watches Beauty and the Beast on the DVD player which is something they did on Christmas morning.  
Christmas day was spent playing with the new toys and eating some yummy food.  Both sets of parents were able to join us for dinner at our house and I was so pleased to use the plates I inherited from my Nan.  It was a lovely meal filled with laughter and love and we sang Happy Birthday to Jesus and ate a delicious cake made for Him for dessert.  This really was a magical Christmas.  

I know that many people that read this blog are always on the lookout for good presents for children like Emma, so I've included the links to some of the items she received (note:  The item was not necessarily purchased where the link leads you to because I just included a link to the first item that popped up in my google search!) in case you were wondering.



Friday, December 24, 2010

Christmas Kisses

Emma has started giving kisses lately - both unsolicited and solicited.  She gave Chris many, many kisses the other night after Julia's school Christmas party.  She loved when we told her to give Daddy kisses and she would turn and open her mouth and place it on his cheek.  She did this over and over again giggling the whole time.  Chris just loved it!

The other night after a round of heavy duty playing before bedtime (thus her disheveled look!), I held Emma on my lap and she lifted herself up and planted a kiss right on my cheek.  She was so happy with herself!  And, I was thrilled with the gift of her kiss.  Chris thought to grab the camera and take a few photos that I share with you here.  This was truly a magical moment for me.


We hope you experience some magic this Christmas season.  Merry Christmas to you!

Wednesday, December 22, 2010

Dear Santa

Julia wanted to write a letter to Santa the other day and asked me to write it for her.  She dictated it to me because she thought it would take her too long if she wrote it.  Here is the letter:

Dear Santa,
I've been a good girl.  My sister has been, too.  I love you.  I hope you have a great time having my cookies.  I would like a walking cat, a cash register and a tea set.
Love,
Julia

Sooooo cute.  I love how she tells Santa that her sister has been good, too.  She is always looking out for Emma.  I just love how she tells him to have a good time eating her cookies!  We've been baking a lot and she keeps telling us not to eat the cookies because they are for Santa.

I'm looking forward to seeing if Santa leaves Julia and Emma a note like he did last year because I'm sure he won't leave any cookies on the plate :-)

Sunday, December 19, 2010

Mall Santa



On Friday the girls dressed up in some Christmas outfits and we headed to the mall to see Santa.  This is the first time they've ever been to see the mall Santa up close.  We've looked at him from afar the past few years but never ventured up to sit on his lap.  This year we decided it was time to pay him a visit.

I was thrilled that we arrived to see Santa waiting just for us - there was not a child in line!  He seemed to have a steady stream of visitors after us, but I think timing our visit to him with the last day most public schools are in session and are having their holiday parties was a good plan.  Julia walked right up to Santa and had a long chat with him while I took Emma out of her chair and fixed her outfit and handed her over to Santa.  Emma was NOT pleased at all to be with Santa and started screaming crying immediately.  Thankfully, though, the mall Santa has a secret weapon - lots and lots of people walking by his throne.  Emma had to stop crying to get a good look at all the people walking around.  She is just that nosy!  And, while she forgot about being on Santa's lap I started playing peek-a-boo with her while the photographer snapped a few photos and we ended up with a pretty good photo with Santa.  I can't get over how much Julia looks like a little lady in this photo.  I think she doesn't have a smile because there were so many photos taken and I guess the person selecting the photo to print focused on the best one of Emma thinking we didn't want to capture the blood curling screaming moments before she smiled.  I do want it to go on record that Julia did have a smile for a lot of the time she was sitting with Santa, though.

Since our visit with Santa took about 5 minutes total we had time to hit a few stores and finish up all our Christmas shopping.  The crowds were pretty heavy even at 10:30 am and were outrageous when we left around 12:30 pm.  Thankfully, we shouldn't have to visit the mall any more before Christmas because I don't deal so well with the huge crowds.

Here are a few photos I snapped of the girls when we stopped to throw a few pennies in the fountain - our one tradition each time we visit the mall because a girl can never have too many wishes!

Speaking of wishes, I want to take a moment to wish everyone a very Merry Christmas!



Tuesday, December 14, 2010

Recap of my day

Today was just filled with FUN!  It's the kind of day that just fills me with all kinds of happiness!

Emma went to school this morning and Julia and I hung out for a bit - had some breakfast, did some shopping, made some cookies, wrapped some presents, played house.  Then, we went to pick Emma up from school, found out she was having a happy day so we stayed for circle time and the craft before coming home.  Once home, I took out the iPad and asked Emma if she wanted to go for a nap and she said no.  I asked her if she wanted to watch a tv show with Julia and she said yes - 3 times.  We are trying hard to establish a consistent Yes/No response in Emma again and when I asked her about the tv I was certain she was answering what she wanted because I asked her multiple times and she responded the same way each time.  I consider this progress.  After watching a bit of Dinosaur Train, Emma went down for a nap and Julia and I ate a late lunch and then decided to play downstairs.

Emma took a very short nap today, so when she woke up I brought her downstairs to play with us and we managed to play for over 2 hours until Chris came home to no dinner but a happy, giggly bunch of girls.  We had a tea party and did some flash cards.  Emma used her iPad to tell me she had enough of the cards and I consider that progress, too.  Then, Julia built a beach retreat out of blocks and Emma commando crawled with very little assistance into the retreat.  We followed it up with a snack and then Julia put on a show for us.  She is quite the performer which is so funny given that she is quiet and reserved in front of new people but is always ready to show off her singing and her dancing.

For today's performance she donned a costume and used a baby bottle for a microphone, put on her high heels and jumped on the coffee table stage.  Emma had a front row seat and cheered her on the whole time.  When I started singing along Julia told me that only she and Emma could sing because it was their show.  Oops...I think Julia has figured out that I sing terribly off key.  Then, Julia had to go backstage to change costumes and Emma guarded her door from fans and then she was back on stage for another song.  Since I had my camera downstairs I managed to snag a few photos of the big concert to share with you.

First Act, outfit complete with high heels
Changing Outfits, Emma as Bodyguard
Second Act
Emma is her biggest fan!




















Julia adds in some fancy dancing to keep the crowd entertained
We finished off the afternoon with a friendly soccer game where Emma was running around in her KidWalk with me helping to steer it while she consistently kicked the soccer ball and played a game with Julia.  Both girls were in fits of giggles and my heart was filled with joy by the time the game was over.  Chris came home to a happy house, even if it wasn't filled with any semblance of a dinner.

I did manage to heat up some leftovers and then we rounded out the night with a dance party before putting the girls to bed.  I just love these kinds of days.  Even if Emma is screaming her head off that we put her to bed.  I don't think she wanted the fun to end!

Monday, December 13, 2010

Hopeful Parents

My post this month went up at Hopeful Parents yesterday.  I particularly like the message I wrote in this one, so I'm going to repost it on my blog for you to read.  Here is what I wrote:


We are a family that is often on out and about in our community.   We like to participate in local events, visit museums and zoos, grab a bite to eat at restaurants and generally have a good time.  I have always been the out and about type, but I find that our adventures outside our house now include more conversations with random strangers then ever before.
Emma is three years old and attracts quite a bit of attention to herself.  She is all smiles and flirty with people we meet in public.  She has the most amazing eyes and people are just drawn to her and come over and start to strike up a conversation.  Emma is quite hospitable to them for a couple of minutes before she looks around to find another person to lure into her web while she leaves me holding up a conversation with the stranger.  This could be because Emma doesn't talk so her conversations with the strangers are very short, but I think the reason I am left to hold up the conversation is more because people seem to want to know - why is Emma in a wheelchair and not talking, what is it like to be her parent, etc.  And so as often as not they continue to stand around wanting to talk with me long after their "chat" with Emma has ceased.
I have gotten good at managing these conversations, and have a variety of responses ready based on our available time and how much I like the person.  One group that seems to be fond of Emma and wanting to talk to me is the little old lady.  I'm sure you've met her.  She is the one who generally says something to the effect of "God only gives children like this to parents who can handle it."  Oh, boy!  Although I have a few responses at the ready, I often quote Mother Theresa in response - "I know God will not give me anything I cannot handle.  I just wish he didn't trust me so much."  
But, the other day I came out with an entirely different response.  
We were out eating lunch and the owner came over to talk with the girls and give them a little present.  She was a lovely woman who had a nice way about her - she treated Emma great by speaking directly to her and wasn't a bit patronizing at all but she was very curious.  And, in the course of the conversation she had to say it - "You know, God only gives children like this to parents who can handle it."  And immediately a great feeling of love came over me and I heard myself saying that she is right.  My husband and I must have done something right to be so blessed with both our girls.  That only we are able to know how truly wonderful it is to have Emma and Julia with us day in and day out.  And then she looked at me like I must be crazy!  Because she can't even begin to understand my life.  
Other people capture glimpses of our life.  Feeding Emma while my plate grows cold.  Carrying her around and helping her play with other kids.  Lifting her wheelchair in and out of the van, going down the slides at the playground with her, acting as Emma's arms and legs in her daily life.  Checking to make sure her cochlear implants are working correctly.  What they really see is all the work involved with raising Emma and they see me doing all this while managing to ensure our typically developing almost 5 year old is getting all the love and attention that she needs.  
And while raising Emma does require more work than raising typically developing children who can talk, hear, and move on their own, I find that it is often filled with great joy to counter-balance the work.  
What people don't see when they glimpse a brief moment of our day is the true picture of life with Emma.  They don't see how our family is just like any other family in our own house when the door closes.  They don't see how Emma acts like a typical 3 year old - using her crawler to get around and into her toys, watching the cartoons on the couch with her sister, playing hide and seek and giggling all the time giving away where she is hiding, building forts and laughing heartily while she is in them, looking at everything her sister is doing and trying her best to imitate her, moving her feet in her gait trainer trying to walk to her destination, using her iPad to sometimes give silly responses to our questions while she gives us a mischievous grin and laughs before she decides to give us the right response.  You see, the truth is that at home, behind closed doors, is when real magic unfolds.  
So now I think I have my response to the one liner that I hear all too often.  I will say, that I am truly lucky that God thinks I can handle this much happiness.  If only everyone was as lucky.  

Saturday, December 11, 2010

Giveaway to know about - Xbox with Kinect

Emma isn't talking yet and we are working hard on giving her a voice.  We are working with Emma's therapists and using an iPad, some PECS and switches and I am finding it very challenging (and exhausting!).  I know other parents are in similar situations - where we as parents are desperate to give our child a voice - and it is from those parents that I get some great, real-life ways to get the best bang for our efforts with operation give Emma a voice.

One family I've been following on the blogosphere for a while is Nathan's family.  I have to say, this is one amazing little boy!  Like Emma, he is not verbal right now but making great strides in communicating with a communication device (Nathan is using a Dynavox with eye gaze).  Right now his wonderful mom Marcela is soliciting ideas for what to program into Nathan's communication device.

I have to say that I'm so excited about this because the ideas she is getting are giving me some ideas to use with Emma.  The other reason I'm excited is that for each idea submitted you are entered in a drawing to win an Xbox with Kinect.  I know Chris would be over the moon if he was to get an Xbox under the tree this year from Nathan.

So, click here and go over to to find out more about the contest and submit your ideas.  And, if you win the Xbox and are looking for a good home for it feel free to send it our way :-)

Wednesday, December 8, 2010

Holiday Party

Tonight was the fantastic holiday party at Julia's school!  It's the second year we attended and it is just so much fun for the girls.  There are 10 classrooms set up with a different craft in each room.  World holidays are represented and each one has at least one craft, but Christmas has the most crafts dedicated to it.  
This year we decided to use Emma's KidWalk instead of her wheelchair.  The tables are very small for the pre-schoolers and they are too low for the wheelchair but the perfect height for the KidWalk.  It was a great decision to use the KidWalk and Emma did well moving her feet to walk while I assisted her from the back.  The only downside was she kept losing her right shoe.  The girls wore some party clothes and Emma needed her red sparkly shoes to go with her outfit and of course an AFO does not go in the red sparkly shoes.  So, that meant she did quite a bit of walking with some bare feet.  She didn't seem to mind in the least and we didn't mind making an exception on her shoes for the night.
Santa and Mrs. Claus stopped in for a visit and some photos and this year Julia had a long conversation with them that ended with her giving Santa a hug.  My, my how my little girl is growing up.  Last year she wouldn't go near Santa and this year she is hugging him.  Emma is another story.  She didn't mind Santa at all until this year and she was screaming crying when we put her on his lap even with me standing right next to her.  Looks like we'll have to wait another year to get a photo of Santa with both girls.
 When we came home I took some photos of the girls in front of our Christmas tree.  Julia had a lot of questions about the tree.  Most of them had to do with the size of the area under the tree and if there was enough room for Santa to leave ALL THE PRESENTS under.  I told her Santa usually only leaves a few presents and she said he definitely leaves more than a few presents - he leaves lots of them and needs lots of room around the tree.  I'm sure we will discuss this again since Christmas happens to be one of her favorite conversations in the car.  This morning she was talking about how we need to leave cookies and milk out for Santa and can't forget a carrot - no, 2 carrots - for the reindeer.  I think tomorrow morning I will steer the conversation to what type of birthday cake we should make for baby Jesus so we can refocus a bit more onto the true meaning of Christmas.

Monday, December 6, 2010

Simplifing and Other Random Happenings

Our life is constantly in motion.  There are school schedules, extra-curricular activities, therapy sessions, family function, field trips, doctor appointments, more therapy sessions.  Whew!  I know that so many people are juggling just as much and maybe more than us, but the pace is starting to get to me.  So, I've made the decision to cut-back on what we do each week.  To unplug a bit more, recharge our batteries, enjoy down time as a family.


It's a bit strange of a time to make this decision, but we already started paring back a bit on our activity.  On Friday we skipped our typical Field Trip Friday since both Julia and I just wanted to stay at home and Emma decided to sleep until 10 am leading me to believe she wanted the same thing!  I recorded High School Musical earlier in the week and we spent the morning on the couch watching the movie.  Julia rated it very highly saying she likes it as much as Camp Rock 2:  The Final Jam which is her favorite movie these days.  

We've pulled out our holiday books and added a new one to the stash this year - Llama Llama Holiday Drama and it's a hit.  I love reading it and the girls love listening to it.  If you are looking to add a book to your Christmas library, put this one on your list.  Santa also left Julia a copy of How the Grinch Stole Christmas at a party we were at on Friday night for the Cochlear Implant group at our hospital.  I'm planning to read it to the girls tomorrow night.  The books we are reading sometimes a bit longer and it's nice to have less commitments at night so we can devote more time to the night routine that we love.  

This weekend us girls made a Gingerbread house.  Well, really Julia and I made the house from a kit that Aunt Mary Lou gave us (thank you!).  Emma was our chief cheerleader and candy stealer.  She sat in her ChildRite chair and was able to lift her arms up to the table top (Go, Emma, Go!) and then grab the candy over and over and drop it on the floor to Finnegan.  She loved this and was not the least bit interested in putting candy on the house so we gave her the rolling pin to play with as the candy started to get scarce.  Julia was very intent on making the house look like the picture and I was amazed with how much patience she had with the whole process.  She is really good at this!  I think we might have to make this an annual tradition because both girls really enjoyed it.  

We also have a break from ice skating lessons for the rest of the month, leaving us with another night to read books and play and incorporate the iPad with Proloquo2go into our schedule.  We are working so hard to give Emma a voice with expressive language and the truth is it is a bit exhausting, so the more down time we have to just play and use it in our everyday situations the better.  Also, Emma can tell when we are working on language and pretty much refuses to play along, but when we are just playing and incorporating language she tends to do some good things.  Today she burped a few times and we always laugh when she burps and she laughs, too.  It's our thing.  Silly, but it's a way she can join in some fun.  Today I said "Emma, you burped.  Can you say burped?  Burped?  What a silly word, burped!  Do you want to say burped?" and I could swear she said "Bur".  Really.  Clear as day.  She does stuff like this sometimes and mostly when we are playing.  It gives me hope that she is learning everything we are doing with her. 

And so while we are trying to cut back on everything, I am also thinking about Christmas break and how it would be great if Emma could do 20 HBOT dives and an intensive of ABM (Anat Baniel Method) therapy.  I'm not sure if we'll do either of them during the break because it requires travel, money and time, but I'm sure we'll be happy with the decision we make.  

Sunday, December 5, 2010

Emma school update

Something really great happened last week.  After two months of Emma crying at school - sometimes so uncontrollably that I was called back to school - she stopped cold turkey on a day that I was sure would be a tear jerker for her.  Hmm....shows how much my girl likes to keep me on my toes.  

Emma had off for 12 days straight at Thanksgiving and I was so worried about her first day back after the long break.  I was prepared for a lot of crying but my little turkey was all smiles and kicking her feet in excitement as we entered school.  Then, she didn't even give me a glance, a tear, a moan, or any acknowledgement at all as she filed out of the cafeteria and went to her classroom with her classmates.  WOW!  She has come a long way.  

Everyone at the school noticed.  When I go to pick her up people come up to me in the hall telling me how good Emma did in school - no crying and she participated in her therapy sessions. They are finally seeing the happy, laughing side of Emma and I think they are finally beginning to think that I'm not so crazy when I tell them what Emma can do because they are starting to see some of her skills for themselves.  And, I think they are now quite smitten with her.  Actually, I'm noticing that Emma has quite a following at school.  The pre-school is our public elementary school and I'm surprised at how many older kids say "Hi, Emma" or "Bye, Emma!" as I'm taking her through the halls.  I ask Emma who they are and she just smiles at me :-)  It's a bit surreal to me that Emma has a portion of her life that doesn't necessarily include her family.  I had a similar feeling when Julia started school, too, but it's a bit more of a shock to me with Emma since she is literally joined at my hip many waking hours. 

Last week we also implemented some changes we made to her IEP (individual education plan).  Emma qualifies for pre-school services 5 full days a week, but much of that time would not be in an inclusion classroom.  After much discussion, we started Emma in pre-school for the typical inclusion hours only which is 3 days/week from 9-11:30am and one day she would stay for lunch.  Since we want her in the classroom as much as possible and with the many therapies she receives at school, we decided to adjust her schedule a bit.  She is now attending the 3 days/week and staying through lunch.  She now will be in the special ed classroom from 11:30am - 12:15 pm where she will work on some of her IEP goals without getting pulled-out from the inclusion classroom and that is working really for her.  She is also going to stay all 3 days for lunch.  The truth is that Emma will likely need help with feeding for a while and it is good for her to get used to having someone other than me, Chris and my Mom feed her.  With only staying 1 day/week for lunch Emma didn't have enough trust in her teacher to let her feed her and it was a no win situation.  This week I co-fed Emma with her teacher and Emma is much more open to eating when her teacher feeds her.  I gave quite a few tips to Miss Jackie so she can read Emma's non-verbal cues for her feeding and they are starting to get into a feeding rhythm together.  The lunch takes place in the four year old inclusion classroom so Emma is very distracted and not eating about half as much as she would at home, but I think that will change as she adjusts to the new lunch situation.  I'm excited about this change because Emma will be in the classroom more and have some extra one-on-one time to work on her goals in addition to having a more social eating situation (with other kids) 3 days/week.  

I'm hopeful that this week at school will go as smoothly as last week.  Now, if I could just get over the feeling of being a bit lost for the time when both my girls are in school I would say that I'm adjusting as good as Emma!

Thursday, December 2, 2010

Carrying on a Christmas Tradition

When I was little we had a quite a few family traditions around the holidays, but the one I loved the most was our small Christmas tree.  No, the small tree was not our attempt to bond with Charlie Brown.  In fact, we had two trees - the main big Christmas tree in our living room that was our family tree and another table top tree downstairs that was just for me and my sister.  


I loved that little tree.  Me and my sister decorated the little tree however we wanted, but it usually consisted of the wide variety of homemade ornaments that we collected over our lifetime.  One of our other holiday traditions was making a handmade gift (usually and ornament) with our Mom.  But the real excitement came on Christmas morning.  After our upstairs presents were opened and our breakfast was over we would run downstairs to see if Santa left us anything under our tree.  We must have been good because he always did!  And, the present he left for us under the tree was always the gift that we REALLY wanted that year.  I still remember the excitement I felt running down the step to see if Santa remembered our tree downstairs.  

This year we decided to continue this tradition with the girls and tonight we put up our 4' artificial tree.  Chris was OK with bringing in a fake tree - one that GASP! has lights built onto it already - since we will continue our own tradition of visiting a Christmas tree farm to hunt down the perfect tree that Chris will chop down and will promptly take over as the focal point of our upstairs living space (our house is pretty small so that is easy to do!).  My Mom gave the girls a tree earlier this week and Julia was so excited to get the tree up and put on a few decorations.  The special decorations that went on the tree were ornaments the girls made at the paint your own pottery place a couple of weeks ago.  The place called to let us know the ornaments were ready so we picked them up today and it seemed like a great day to put up the tree. 

Emma was all smiles and laughter and didn't want to be contained in any seat at all so we put her in the KidWalk and she kept her spot by the tree.  Julia put on many of the ornaments because Emma was more interested in taking them off than putting them on.  Julia kept showing Emma how to put on the ornaments - especially the sparkly balls that she kept calling light bulbs.  I told her several times they were called balls but she kept calling them light bulbs without missing a beat and telling Emma all about the light bulbs.  It was so funny!  Emma managed to pull the tree over and catch it in the KidWalk and Julia promptly came to her rescue (not so sure Emma wanted such prompt help) and set the tree back on the ground properly.  

I'm so happy we are bringing the girls Christmas tree tradition into our family.  I wonder if Santa will remember to put some great gifts under the tree this year?  I'll be sure to tell him how good the girls were and point him in the direction of the little tree in case he has some special gifts in his bag.  

Sunday, November 28, 2010

So Thankful

In the last couple of weeks the girls were sick, then I was sick, we enjoyed our the Thanksgiving holiday and now we all seem to be feeling well.  I am very thankful for that!  And, that I'm getting a chance to update this blog/journal again with some thoughts that have been swirling around in my mind.  

Thanksgiving time the last few years has been quite a difficult time for me and my family.  Three years ago we found out the day before Thanksgiving that Emma was deaf.  We spent the Wednesday before and the Monday after Thanksgiving at the children's hospital with Emma between doctor appointments and hearing tests.  The appointments, the news, explaining it all to our family, digesting our options.....it drained all the energy I had in me.  Even today when I think of that Thanksgiving weekend I instantly connect with many of the feelings that were swirling around in my head that day.  

Here is a great photo I have from that first Thanksgiving we celebrated as a family of four.  It was the most gorgeous day!  This photo is taken in my in-laws back yard after Chris, Julia and I spent a bit of time at the park without coats enjoying the playground and taking a walk through the trails.  For some reason, I often think of this photo when I think of Thanksgiving - not just that Thanksgiving that year but Thanksgiving in general.  


On New Year's Eve of 2007 we found out the reason Emma was deaf was due to a Congenital CMV exposure and the diagnosis, tests, specialist appointments, etc. that followed didn't rock me as much as the initial shock of knowing our perfect little girl had quite a challenge ahead of her.  

Thanksgiving 2008 we had another long week of appointments at the hospital.  This time it was because Emma received a cochlear implant in her right ear just before Thanksgiving.  We were very thankful Emma came out of the surgery fine and were anticipating her CI activation in December. 

Thanksgiving 2009 we had another long week of appointments at the hospital.  Emma had multiple therapy sessions and also had follow-up appointments because she had received a cochlear implant in her left ear in early November.  Again, we were thankful she came out of the surgery fine, that she was able to get the newest CI technology for the left ear and were anticipating her CI activation that would give her bilateral hearing in December.  

This year we have a lot to be thankful for - and I think one of the things we have the most to be thankful for is evidenced in the fact that we didn't spend any time at the hospital outside of the one day Emma had her standing therapy appointments.  This signals to me that we have settled into our life a lot more, we have moved to a new place in our lives that relies less on the medical community and more on our social community where we can fully enjoy our lives as a family of four.  Gone is much (but not all) of the anxiousness and anxiety of the last few years and I'm honestly so Thankful to put that behind us.  

This week we lost a dear family member and he is sorely missed.  While I don't want to comment much on this sad loss, it did have me going through my photo library and looking for photos of him.  Along the way I journeyed through photos of me and Chris while we were dating, grinning from ear to ear in our wedding photos, enjoying our honeymoon, overjoyed at the birth of Julia and our first 20 months as a family of three where I took LOADS of photos of all her milestones and the everyday way she brought so much joy into our lives, the birth of Emma when Julia was only 20 months old and the joy we felt when we were finally able to hold our little Emma and our family of four felt perfect.  I also looked through the zillions of photos that I've compiled since then and I took a deep breath and said a prayer thanking God for all our blessings, thankful that our lives are filled with more smiles and laughter than tears (and, believe me, there were quite a few tears the last few years!).  

Six years ago Chris and I had no idea what our life would be like today and we still have no idea what life will be like six years in the future.  All we know is that we have today and that we are blessed.  



Happy Thanksgiving!


Sunday, November 14, 2010

Emma walked! and some cute Fall photos

Today was a gorgeous day and we took full advantage of the 60 degree weather.  I've been playing with my camera a lot and have wanted to get some good photos of the girls in the park and we had a chance to stop there after church this morning.  I was thrilled that Chris could join for the pictures because I was able to get photos of Emma without her in any equipment, which is something that I probably would not do if it was just me and the girls at the park.  


After our photo shoot we headed to a birthday party where I got to continue snapping photos, but the highlight of the party was that Emma took quite a few steps in her KidWalk!  We brought it in with us since both me and Chris were there and could it along with her stroller and boy were we glad we did!  Emma's walk made everyone smile and I was so glad my friends could experience the thrill along with us.  I actually have some tears in my eyes right now writing about it - it is so fantastic to see her able to propel herself forward and I'm so hopeful that the KidWalk will give her some freedom to explore on her own.

After the party we came home to bake an apple crisp and run about in the yard.  I couldn't have asked for a more perfect weekend.  

Saturday, November 13, 2010

Want to know what we were up to today?


Today was all about the leaves and enjoying the gorgeous Fall weather.

Friday, November 12, 2010

Hopeful Parents


I'm over at Hopeful Parents today.  I managed to pull this post together regardless of taking care of two sick little girls - Julia has a sinus infection and Emma has a sinus infection, ear infection and pink eye.  Yikes!  Enjoy!

Thursday, November 11, 2010

It's Here!!!!!

We received a call on Tuesday that Emma's KidWalk arrived and so the girls and I headed over to pick it up right after nap time.  I was so excited I couldn't wait for them to drop it off later on in the week.  It was a beautiful day and I set about to adjusting the gait trainer for Emma's size and then putting her in it to see what she would do (note:  I will bring it to Emma's PT on Monday for him to check the sizing and make any necessary adjustments, but we couldn't wait that long to try it out).  

And what she did was mostly a WHOLE LOT of SMILING!  She loves this gait trainer and we have been using it a little bit each day.  Last night we even put Emma in it for our evening dance party.  At first she didn't want to get in it because she thought it would hold her back - and, she does love to dance in Chris' arms!  But, after a couple of seconds she came around and LOVED using it for dancing.  We were able to hold hands and spin around in circles together, I could have her standing in it and help her wave both hands in the air, she could run after Julia when she went down the hall, and then run back up the hall to Daddy's open arms.  It was AMAZING.  I think we all had some huge smiles on our faces last night.  

Ok, I have to disclose that Emma isn't actually moving independently in the KidWalk yet because it might sound like it in this post.  But, she is moving her legs to try and walk and moving them when I help wheel the KidWalk about.  Eventually, she'll get there on her own but it will take time.  In the meantime, it's so nice to be able to have her participate more fully in our activities without having to put her down sooner than either of us want because of my aching back :-) 

Wednesday, November 10, 2010

Fall Attire


I've been looking at tutorials on the internet on all the cool things you can make with your sewing machine.  The first time I used a sewing machine was this Spring and I'm still learning how to use it and the girls love having me make things for them.  They aren't the least bit picky about missed stitches or crooked stuff and I just love how happy they are with what I make them.  

I saw this tutorial on the internet and decided the girls needed to have a turkey shirt for the Fall.  Mom has stopped a lot of her sewing and gave me lots of fabric that she accumulated over the years, many of it seasonal in nature since she was always so great about including homemade gifts each holiday season for the entire family.  Really.  Now I appreciate how much time and effort went into her gifts!

I looked through the fabric pieces and pulled together the perfect selection and set about making the girls turkey shirts.  I definitely am still a beginner in the stitching department, but the shirts look really good if you don't look too closely.  Both girls love wearing their turkey shirts and love to tell everyone that I made them.  Seeing my girls so smiley in their turkey shirts makes this Mommy's heart happy!




Thursday, November 4, 2010

Making a list...

The toy catalog season has begun and making out the Christmas wish list for Santa is currently in full swing at our house.  Julia has been upset lately because she never gets any mail and Emma is always getting mail and packages - I don't think she cares that it's usually medical and products bills that are delivered to Emma because she would love these packages and notes to come to her.  So, when the toy catalogs started showing up I told Julia they were mail for her and now I'm wondering "what the heck was I thinking???!!!!"


Julia has been taking her catalog perusing quite seriously.  She pores over the pages of toys and play items and talks about the children playing with the items and has circled the items that she thinks Santa should consider bringing her.  She has even asked for a couple of items for her Birthday and had me agree to get her a musical ballerina jewelry box as her Birthday present.  

Our after dinner activities tonight consisted of looking through the newest round of toy catalogs and Emma wanted in on the action this time.  She really loves to look at all the children and babies in the catalog and it even seemed to me like she was picking out a few items that really caught her eye.  Hmmmm......guess we need to start a list for Emma, too!

Here are a few photos I snapped of the girls and they way they are looking at the catalogs just makes me laugh because they are so serious!  However, I am just so shocked at how OLD Emma looks in the one where she decided to pose for the camera - I didn't ask her to but she just loves to get her photo taken that she looked away from the toys to let me capture her gorgeous smile.  

Now, I think the next time we look through the catalog I'll ask them each to pick out a toy to buy and donate to the hospital for the holiday.  It's important to us that the girls really embrace the spirit of the season rather than getting all caught up in gifts and this will be one of many things we do to demonstrate the spirit of the season with the girls.  




Wednesday, November 3, 2010

Sitting up

We had three different appointments at our hospital on Monday.  None of them were back-to-back, but they weren't spaced out so far that we would leave the hospital and return again later.  When we have days like that I always get concerned that Emma might get tired - especially of sitting in her wheelchair - and we usually find different places to pass the time.  

One spot that is always high on our list is a visit to the hospital Chapel.  Emma LOVES the chapel.  We usually have it to ourselves and so I let her sit up on the altar since it is her favorite spot - I'm not sure if this is appropriate or not but it sure does make her happy!  The stained glass is so vibrant and she likes to bask in the sunlight coming through it.  Typically, I put down a blanket and let her roll all around on the altar for a while but on Monday I decided to see what she would do in a sitting position.  Emma can't balance too well in unassisted sitting so I don't often move farther than a hand's distance away from her, but I felt good about Emma's ability on Monday so I left her side to get my iPhone and take some photos.  I was thrilled to capture these photos of her sitting on the altar without me holding her up.  As you can see, she was very proud of her accomplishment.  She did topple from side to side a few times before I was able to capture the photo, but this is still quite an accomplishment for Emma.  Way to go!

Wednesday, October 27, 2010

Cooper Car driving

The Cooper Car that we were using with Emma to help get her ready for a power wheelchair is back in action!  Thanks to the fabulous John at our wheelchair clinic who fixed the car for the children to drive!


It has been a couple of months since Emma last drove the car.  She had been pretty consistent at getting the car moving and was starting to slow down/stop on occasion before it broke.  I took some video of her driving the car this week when she got a chance to get back in the driver's seat and I have to say she did really good for not driving a couple of months.  

We used a different switch that doesn't work as well as the one we have at home - you can see in the video that she is attempting to hit the switch and isn't always successful.  We borrowed a switch that works with only the slightest touch from the Assistive Technology department and that seemed to work much better for Emma, but I didn't capture that one on video since we only used it for a very brief time.  

Emma still likes to go and has very little desire to stop - even when she is about to bump into walls or her therapist!  We're working on that ☺ but for now we are glad that the car is back in action and Emma will get more time to practice with the car and move her one step further towards getting a power chair of her own.


Monday, October 25, 2010

Halloween Story Time

Our local library hosts some great events for the children and we try and make all the shows around the holidays because that is when they bring in the really great performers.  Last Friday the library had Pam the Kindersinger put on a Halloween show and so the girls dressed up in their costumes and we headed on over.  Julia is a cat this year and Emma is a sailor girl and they are both completely adorable if I do say so myself!




Anyway, they had so much fun!  Since Chris gave me an iPhone (what did I ever do before I had this phone???!!!) as an early anniversary present, I pulled that out of my purse and took some video.  Julia was all giggles and I just LOVE her like that and wanted to capture the moment.  Emma was so into all the children and the singer and trying to move and I did capture a bit of her on video but she didn't cooperate too much for the camera - she's like that sometimes :-)  

I thought I would share a bit from our night out here.  Enjoy! 






Saturday, October 23, 2010

Quick Update


We've been busier than usual around here lately so I haven't had a chance to post much.  Although the girls and I have been busy doing {mostly} fun activities during the week, Chris has been very busy at work and staying late some evenings.  Thankfully, though, our weekends have been filled with fun activities outdoors since this Fall we are having fantastic weather - and I would rather enjoy the lovely outdoors instead of hanging out at my computer.  

This is a bit of a mish-mosh post about our recent happenings:

Emma has completed 3 weeks of pre-school so far.  I have also completed 3 weeks of pre-school.  I tried leaving Emma at school last week on her own and it didn't go as easily as I hoped.  She is on to the fact that I've been leaving school and all she does is cry and stare at the door and when it opens and someone who is NOT me walks in, she loses it.  Even if I am there and out of sight and the door opens and closes and she screams and cries - this only started happening after I left her there on her own, it didn't happen before since I don't think it even occurred to her that there was a chance I would leave her there alone.  It's quite heartbreaking, really, and I've started staying at school again while trying to fade into the background to give Emma a bit longer to adjust to school without me.  

School looks like fun, right?
All smiles while Mommy is in view!

I am ok with a little crying for her when I leave, but all out crying for hours at a time is not a worthwhile venture to pre-school in my opinion as she is neither learning anything nor participating in any therapy services while screaming at the top of her lungs for hours while waiting for me to return.  Let's hope next week goes better as I am excited to use the two mornings/week when both girls are in school to get in at least an hour workout each day.  I really need to start a consistent exercise schedule for both my mental and physical well being.

We went to Lowes the other day and had the new experience of seeing both girls sitting in a shopping cart.  Since Emma can't sit unassisted she usually goes shopping in her stroller or sits in a toddler feeding chair in the cart, but we saw some carts at Lowes that were designed for children and had a bottom at the perfect foot level to prevent slipping out of the cart and decided to give her a try in it and she did great!  Both girls loved sitting together for the 10 minutes we were in the store, even if Emma did use Julia as a prop for a lot of the ride.  Emma even reached out and attempted to turn the steering wheel, which made Julia (and us) so happy!  Julia is the best big sister ever!
 
It was late at night and Emma was already in her pjs, but she loved sitting in the cart with her big sister!

On a recent Field Trip Friday we purchased an annual pass to the zoo and have used it a couple of times already.  This weekend was Boo at the Zoo and the children dressed in costumes and did some trick-or-treating as they wandered around the animal exhibits.  Even though the traffic and parking were a nightmare, we were so happy that the zoo itself wasn't terribly crowded.  The gorilla there was the highlight of today's adventure - he came right up to the window and sat there for a long time posing for cameras and playing with the crowd.  He seemed so human.  I could have stayed in that area for hours just watching him.  






Sunday, October 17, 2010

Songs of Love

Have you heard of Songs of Love?  Songs of Love is a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.  I LOVE this organization.  How amazing is it to have a song written just-for-you?!  


Around Emma's second birthday I requested a Song of Love for Emma.  I thought it would be something wonderful to share with her since she was hearing pretty good with her cochlear implant.  We received Emma's Song of Love right before the activation of her second cochlear implant and I was super excited to have Emma hear her very own song with two ears!  

I knew that Emma would love her song - she seems to enjoy music - but what I didn't realize is how much the rest of us would love her song, too!  Julia loves Emma's song and I'm so glad she plays a prominent role in the song so that she isn't jealous that Emma has her own song and she doesn't have one.  In fact, she often requests Emma's song whenever we are listening to music.  

I LOVE the song they wrote for Emma - it's the song I used in her 3 year slideshow video that many of you commented on.  The writer captured the sweetness of having Emma in our life perfectly and every time I listen to it I feel like the luckiest Mommy alive to have two unique, amazing daughters in Julia and Emma.  I especially like to listen to the song with the girls on the "tough" days - you know, the days when my back is hurting, we have loads of appointments, people make stupid comments to us, etc.  This song always picks-me-up on those days.

I was lucky enough to talk with the songwriter/singer on the phone several months ago.  The organization was doing a lot of outreach for votes to win a grant in the Chase Community Giving Campaign on Facebook and they were making phone calls and email requests to supporters.  The writer/singer of Emma's song called us and I told her how much Emma and our entire family LOVES her song.  It has really touched our lives and I was so thankful to get a chance to thank the writer personally.  

If you know anyone who would benefit from a Song of Love, please let them know they can find out more information at their website http://www.songsoflove.org/   And, if you are looking for a worthwhile charity to make a donation to, I highly recommend this wonderful organization.  

Thursday, October 14, 2010

First taste of independence

Emma has been trying to get moving for a long time but hasn't been that successful.  She tries to crawl but her arms have a hard time reaching back over her head once she scoots forward once and she gets sort of "stuck" in the commando crawl position.  But, she always keeps on trying since she is extremely motivated to find some way to gain independent movement.  


I had thought that a crawler would be great for Emma, but the version that I was aware of was ~$500 and our insurance wasn't about to buy one (and I was saving the fight in me for the gait trainer battle).  A friend told us about a crawler that her daughter was using at school and we found a similar one on the web for about $60.  That really got our attention!  

Emma received the crawler as a birthday present and when it arrived I found that the crawler is actually too big for Emma.  She would need one that adjusts to a lower height than the 13" lower limit but I hadn't seen any of those until I did some more looking around.  The smaller crawlers are more expensive but I did find one here that seems to be a more affordable smaller crawler in case anyone is in the market to buy one.  


We decided to make some adjustments so our crawler could work for Emma.  We worked with her occupational therapist to find a way to customize it and Emma took off on it - literally!  Emma LOVES scooting around the house in the crawler.  It's really her first time to have some independent mobility and she is really starting to explore the house in a whole new way.

The crawler that she received is the Adjustable Crawl Trainer purchased at Flaghouse.com shown here:


We found that we are able to use the adjustable sling to have Emma work in high kneeling, but it doesn't work at all for crawling.  So, we took a piece of wood and cut it to fit between the crawler bars.  The wood was cut so there are a few inches of no wood at all at the bottom of the crawler so that Emma can move easily.  I covered it with some semi-thick foam - purchased at JoAnn Fabrics - to make it comfy for her belly.  I also made a little cover (from a suede-like material with a princess crown embossed in it!) for the foam covered board to make it soft and look pretty.  Then I took foam, covered it with the same fabric and tucked it around the bars so that Emma would have protection from the crawler bars.  The crawler is still a tad bit too big even with the modifications that doesn't stop Emma from moving all around the house in it!  





To keep her from falling off we're using the same "seatbelt" that we use on the potty - a waist trimmer that has velcro on it that we purchased for $5 at Five Below in the exercise section.  We typically use this inside out where the neoprene material faces out and the nylon fabric faces in so that it doesn't get Emma sweaty.  Also, we make sure there are shoes on Emma's feet when she is using the crawler because when we first tried it out without any shoes or socks Emma got a nasty floor burn on her toe from using it to push off so much.  Using shoes eliminates the risk of getting another sore on her toe and gives her more traction to push off and get moving quicker. 


I don't have any new videos to post, but here is one of Emma on the crawler the first day we used it right after her bath - so her hair is a bit wild, she is not wearing socks or a seatbelt and we are making sure she has both now! - and having a lot of fun.  There is a lot of video here, so just jump to about 1:50 for when she started getting the hang of moving.