I really need to work on updating this more. Life got away from me for a bit. Therapies, school schedules, sports schedules and everything else you can think of that happens when you are a family with 3 children.
So much to update. So much more to continue working on. JD is still battling and showing he is my superhero! We are still doing regular physical, occupational and speech therapy. I'm happy with some of his progress, and hope we continue to see it.
I can not believe that JD is in 4th grade already! Hard to believe that he has been being a superhero for 4 years! Here he is with his brother and sister ready for another great school year!
First, I'm happy to report that we finally were able to remove his G-tube in February. Talk about the birthday present for life! He was so excited to finally remove it. Though, we did experience some complications stemming from having it for so long. His surgeon and I were hoping for it to heal on its own, as some will do. However, after having it for 3 1/2 years and the school not following care instructions, it didn't. In May JD had to undergo a small surgery to close opening that his tube once filled. The site healed perfectly following surgery, and all the boy has left is a slight scar to share.
His physical therapist reported that he is in the 1% for physical and core strength for boys his age. This was a bit heartbreaking to hear, and then I went home and watched as he played and chased his siblings in the yard. I no longer let that get to me, just see it as something we need to work a little harder on! Leading to his work in Occupational therapy. His hand strength still is not what we would like, so he is starting to learn computer keyboarding to allow him to take his own notes in class. Excited to see where that will take him! Maybe soon he can help update this blog more regularly for us all.
My final update for now, JD did have a follow up swallow evaluation at the beginning of October. Happy to report it showed a tremendous increase in his swallow, BUT it's showing his physical chewing is now where we need to work on. Honestly, when we started this so long ago, he couldn't swallow so we focused on that. We never looked to see how he was "physically chewing" because we were working on just getting liquids and pureed foods. It has been something I wondered, as JD has had zero recovery to the right side of his face. So, now that is a new focus for us.
Oh, so much more to add...so much more to update. So many changes, so many challenges, and so many developments. But for tonight...spread awareness. And if you ever find yourself in our shoes, know you are not alone!
#AFMAwarenss
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