Today I had one my most emotional days since January when Maya was diagnosed. We picked up her TLSO, or scoliosis brace. I knew that Maya slouched when she sat, but I didn't know quite how bad she had gotten. According to the rep at the brace store, she is pretty young to be slouched so much (vs other SMA patients). They naturally slouch, but she has a more defined curvature already. This means that the scoliosis will likely start earlier than others. SUCKS!!!!!!!! Then they put it on her. I started tearing up right then and there. She is so uncomfortable in it. Its not like the cough assist machine where she is scared of it but then it goes away after 5 minutes. This she hates and has to wear it all the time. So far, the only other thing she is impacted by during the day, all day, are her ankle braces. She doesn't even care about them though and actually likes when they are on. I don't even notice them that much on her anymore. The TLSO is different. Right now, she can't even sit independently with it on. She cried so much today that I wondered if it even allowed her enough room for breathing. She doesn't have to wear it while she is sleeping or in the car seat (since it is reclined all ready), but other than that, she needs to be wearing it. This is going to take some challenges. There is an undergarment to be worn under the brace to prevent chaffing. She is going to get so hot. And what do we with her clothes! I put her dress on over it this evening and I cried some more. She just looks SO different with this thing on. It makes me so sad. She can't even put her arms down all the way and she just looks so stiff. It was hard today when she wanted me to hold her at the visit and I didn't even know how to pick her up in that thing! That's was caused the big breakdown today - not being able to feel her when I hold her. I just felt plastic. Where is Maya under all that bracing? Is she still the same little happy baby we once had? How can she be when it seems like we are torturing her everyday! I know we will all get used to this in due time, but I wasn't ready for today for sure. I will just take baby steps on this new one. She did 45 minutes today. Maybe we can do an hour tomorrow.
9 comments:
You guys are doing an AMAZING job with her. Stay strong and know that we are all praying for you guys and praying for a cure.
Awww - Saps - this post made me cry to. I am sorry you guys had a bad day. Totally understandable. I hope that this brace over time becomes easier for you and Maya to deal with. We are praying for you and you are doing an incredible job.
I'm so sorry you guys had such a rough day. I know it must be really hard to watch your little angel be so uncomfortable. You're in my thoughts and prayers daily. Maya is blessed that God chose you and Charlie as her parents!
I'm just repeating everyone else's comments, but it is just so true - you guys are doing an amazing job with everything you have going on. You are the perfect parents for Maya and God is shaping you and your family for such great things. I am in awe of your strength and pray for you every day. You are a GREAT mom and Maya is so lucky to have you.
I feel the same way with Nicholas and his brace. I hate it. He doesn't mind it anymore, not at all, but when I hold him it feels weird. I know it's hleping him with his posture and helping the curvature of his spine, but it's not fun. This disease is not fun in the least bit. I hope Maya does ok with hers. I will be thinking of you both.
I know it's been said a lot on here, but it's absolutely true -- you guys are amazing parents! Maya is a very special little girl and is truly blessed to be born to you two. Keep your heads up and know that your friends and family are praying for you!
I get a little baffled everyday at how hard life is on so many good people and it is the days like you mention here that just put a lump in my throat. Keep your spirits up, your strengh is an inspiration to many! Maya looks at you and Charlie and sees a wonderful example of how to brave every day in a very tough world. She has the best parents and you guys are constantly on our minds and in our prayers.
I sure hope you guys are having a better week...that Maya is getting at least a little bit used to her new brace. I'm sending you the biggest HUG right now.
You are such a good writer. I love how open you are and how much you are letting us into your life with Maya. She is a beautiful and special little girl, and your posts make me realize it even more. Not to mention, it makes me realize just how special you and Charlie are.
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