Tuesday, June 19, 2012

Pink Sparkly Shoes!

I'll never forget when we first found out that Grace would need orthotics. What is an AFO and SMO??? Is this something she would need to wear forever? Can she still wear cute shoes? Will they bother her? We had so many questions about a very small brace. The thought of it overwhelmed me and gave me anxiety. Thank goodness that has never been the case for Grace.

She was fitted for her first one before she was even able to walk. I remember the expert at the splint clinic had an especially hard time fitting Grace cause the back of her heel (the part that needs to stay down in order for the brace to do it's job) was narrow while the rest of her foot was wide. We finally were able to find an AFO (Ankle-Foot Orhosis) that seemed to work and in time it became a part of our normal dressing routine. However, I will admit to breaking out into a sweat (mostly psychological) most times that I would have to put it on her. I can gladly say now that after three years, and several different AFO's, I no longer break out into a sweat or am bothered as much.

Grace has never questioned why she has to wear it or complained about it, until recently. She is a little girl and a very "girly-girl." She is very much into Princesses and Barbies and dressing up. She often wants to go to "Pairs" (better known as Payless) to get sparkly, pink shoes.  We oblige and let her wear them to church or special occasions but for the most part we keep her in her AFO to keep her range at a good place.

Just recently she has complained about it hurting. She has quickly outgrown this AFO (usually between 4-6 months she gets fitted for new ones) so we have been out of our AFO for a few weeks now. We can tell a BIG difference too. Just confirms to us that the AFO is the best thing for her. She is now lifting her heel and walking on her toes (right side) and when we do our daily stretches we can tell how tight her muscles have gotten.

Today we were thankfully squeezed into a cancellation at the splint clinic. She was casted and fitted for her new AFO and I let her pick out the colors (purple and hearts). She gets very excited to get new AFO's but that is mostly cause she gets to go shoe shopping!

My sweet girl

She sits completely still and doesn't complain when they cast her and cut it off her leg. She just sits and watches, fascianate by the whole experience. She has really come a long way! 

She got excited because she thought we were getting to bring the cast home with us. We explained that we have to send it off so that they can make her new brace (purple with hearts)! 

Now that she has downgraded from an SMO to a chipmunk (funny name I know) on her left side, she requires two different size shoes. This can get costly but thankfully Nordstrom allows you to purchase one pair of shoes in different sizes. We haven't gone there yet but will for sure after we get this new AFO in a few weeks. Before now, New Balance were our shoe of choice because they are one of the only places you can order xwide.  So if you have a child in AFO's and are having a hard time finding a shoe that fits, go to newbalance.com or try to find an outlet. You can get some great shoes that work great with these types of braces.

Monday we are scheduled for Botox. I'm sure I've blogged on this subject before but it is never a pleasant experience. The versed (amnesiac sedative) doesn't work on her. She knows as soon as we enter the Children's hospital that she is getting shots. I HATE it but it is the only thing keeping her, thus far, from having to have surgery. For that I can endure a few minutes of watching helplessly as my child screams out in agony.  Matt wants to punch the Dr out every time. But it passes quickly and the effects last 4-6 months.  You won't see any happy pictures of Grace on these days.

Overall, we are still learning and walking through this journey of raising a child with CP but we are very thankful to have a child that is strong and preservers. She inspires us and when I want to complain about something small in my life, I just look at her and have to re-evaluate. She is only 4 years old and has had a stroke, thousands of hours of therapies, and sacrificed the pink, sparkly shoes for her bulky, hot, AFO.  She is amazing and I am honored to be her mother!

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