We decided for treatment we would do surgery. So he has been recovering nicely from surgery. Walking was tough and hard just 10 days after surgery with the cast on, however he did it and has not stopped since then! We are so proud of him!
After the cast came off Superstar was given AFOs to wear. He STILL has to wear the AFOs, however we were told he could go up to 4 hours per day without them. Currently he has been wearing them from the moment he wakes up to the moment he goes to bed. So it's nice to know he can go some time during the day without them.
Today we were given the okay for any sport that Superstar wants to do! For some sports he can't wear his brace so if he did that sport activity that day it would count towards his time without the brace. Today we were told that it looks like there will NOT be a second surgery. So that was good news. Today we were told that he will NOT need physical therapy! We see the doctor again at the end of June so that might change, but the surgeon is confident that he will NOT need physical therapy.
Today we got told that we can get an adjustment done on his AFOs to allow the ankle joint to articulate, move. Currently his AFOs do not allow for that movement, but that will change this Thursday. We will go in and they will adjust his AFOs and put a hinge at the ankle to allow it to move. I'll post pictures of that later this week.
To top of today's post I've added a video of Superstar walking and running up and down our hallway. Looking at the video of him walking in his cast made me realized how far he has come the last few months!
UPDATE: I also wanted to update and show some pictures of him standing WITHOUT his brace. This is SO MUCH different then back in June before surgery. BEFORE surgery he could NOT put his heels down on the ground even if wanted too!
He's outside now in his socks! I don't care! We just realized this is the first time in his life that his heels have touched grass! (when walking). He's going to be 9 in a few short months, and so it's just amazing! I asked him how does it feel to have walked and have the grass touch your heels? His response "GREAT!!!!!!!"
Oh my goodness...can you tell me about your son's condition a little more? Our daughter has been walking on her toes since 2 years old (she is about to turn 4) and every time I mention it I get brushed off by the pediatrician. Would he walk in tiptoes even while wearing shoes? Would he always walk on his tiptoes when he was barefoot or just some of the time? Also would he ever get leg cramps? Sorry! I know 20 questions!
ReplyDeleteIt sounds like the surgery went great and look at him now! :) Good job Superstar!
Oh Praise the Lord :) I Love seeing him run :)
ReplyDelete;) Now he can run from mom instead of doing chores hehehehe
I don't mind the questions Angela!
ReplyDeleteSuperstar walked on his toes 24/7. It did not matter if he had shoes on or not. From the time he started to walk at 12 months of age it was on his toes! Toe walking is "normal in children under the age of 2". So that's why in the early years I got brushed off. Not sure why I got brushed off as Superstar got older.
I would mention to our doctor every year and every year I would get brushed off as "he'll out grow it". I decided last June that I was NOT going to take "he'll out grow it as an answer".
Superstar got to the point that he wanted to play sports, such as soccer, but I couldn't let him. Not with him walking on his toes ALL the time. Barefoot- On his toes; Shoes-On his toes; 24/7 on his toes it did not matter!
Also as he got older it got to the point that he could NO longer put his heels down to the ground. The Achilles tendon had over time from being on his toes 24/7 had shorten and he physically could not put his heels down to the floor even if he he wanted too.
His condition was so bad that by the time we were able to convince our doctor that something needed to be done that surgery was really our only option.
Of course it took a lot of testing to get to the point of where we learned that he needed surgery. Over the summer he had x-rays done, EMG/NCV.
It was after all those testing that the diagnosis of ITW (idiopathic toe walking) was given. Superstar never complained of leg cramps. The only time he was in pain was if I tried to make him or convince him to put his heels down onto the floor. As said though at the end, right before surgery he could not put his heels on the floor. He would try, but would still end up with a 1/2 inch gap between the floor and his heel.
NOW TODAY he can stand totally flat footed even without his braces on! I will update this post to show that in a minute or 2.
sorry about that the last reply didn't take the coding right for the EMG. He also had an MRI done.
ReplyDeleteHOORAAAAAAAY!
ReplyDeleteThat is just SO SO SO SO VERY VERY VERY AWESOME!!!!!!!!!!!
THANK YOU GOD!!!!!!!!!!!