Sunday, December 23, 2012

"Bracing" Ourselves for Year Four


It is so hard to believe that the girls turned four!!! In fact, the  "4" candle you see on the cake was originally a "3"! Dave looked at me and asked, "How old are your girls turning?" Immediately I replied, "4," and looked at Dave who was making eyes at the cake. OH!!!! Oops!! When I grabbed the candle at the store, they were still 3 in my eyes!!!! They had their first "kid" party with three friends and their cousin. We decorated aprons and cupcakes and had a great time!

Less than two weeks after Mia turned four, she received her scoliosis brace.  A co-worker suggested we give the brace a name. We thought that was a great idea seeing it will be glued to Mia's body 23hr/day for the next 10-12 years. Here are some pictures of "Sparkle"!



 

As usual, Mia has dealt with her new obstacle with the ultimate grace! She was an angel during the initial 2 hour appointment! The first week, we were to gradually get her used to the brace, just a few hours at a time. She complained quite a bit so we were really concerned that this wouldn't be very successful. She kept telling us the brace was too tight (it is fitted to be very snug and push her spine into alignment) and that her back was all better so she didn't need it anymore. She was also very frustrated with her new inability to maneuver. She could no longer pick up toys she dropped, get up in her chair, sit on the floor without falling back, etc. This was also a huge frustration for us! All her gains in OT and PT were lost. Just when she started becoming independent in some skills, it was taken away from her. It was absolutely heartbreaking to watch!

Here we are, just two weeks later and Mia is doing amazing! Although her ability to perform everyday tasks continues to be a challenge, she is learning new ways and taking it all in stride. Last night was her first night she slept with Sparkle. Not one complaint!!!!!! I can't say enough how much of an inspiration she is to all of us. Her siblings are in awe of her and how she overcomes her constant challenges. And as usual, Dave and I are having a more difficult time adjusting than Mia is.

With that being said, there are many concerns we still have and will be meeting with her orthopaedic surgeon this week. Our main concern is atrophy. The school is going to increase her OT and PT so she will be receiving both at home as well as at school. We will also be looking into outside PT. With Mia's underdeveloped core and low muscle tone, we are concerned that the brace will only weaken the little bit she has. In addition, Mia is not able to bend at the waist and is going to have to relearn how to do everyday tasks. We need to make sure we are doing everything possible to help her.

This Holiday Season, as usual, we are counting our blessings. Each day is a new day and we will try to face them with the same grace Mia does.

Wishing all our friends and family love, joy, hope and wonderful memories. Merry Christmas and Happy New Year!


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