Monday, January 23, 2012

Finally! Bringing back the Blog!

Honestly.....I've missed you! I can't believe it's been over 6 months since I've posted on this blog! I am sure that no one is coming by anymore...and maybe no one even misses it? Things got crazy busy for us the end of last year. Our biggest undertaking was Little J's heel cord and hamstring lengthening surgery. Most of you know that Little J took quite awhile to begin walking. Once he began walking he became a toe walker. This kid could navigate the most trecherous terrain on his toes! The only problem with that is that as he got older, his feet would likely become deformed and eventually it would be so painful that he would not be able to walk at all.

This photo was taken in September after his second set of casts were placed.

This surgery was our only option to give him the best opportunity for successful walking for a long time to come. It was a huge undertaking and still 6 months later it's still a work in progress. I knew it was going to be a lot of work going in, but it was far more than I imagined.

Little J went into the hospital in mid-August for his outpatient surgery. They did a small nick in his achilles tendon and hamstring and casted him up. Poor little J woke up from sleep with these two huge casts that went from his toes to his knees. Initially coming out of anesthesia he was doing well. The more he woke, the more distressed he became. This poor little boy was wailing like I've never heard before. At first, we thought it was the strange environment and the other kids crying in the recovery room, so we opted to take him home. Our poor sweet boy wailed from the time we left the hospital at 10:30 in the morning until 5pm! We were entertaining the thought of taking him back to the hospital, but after discussing it with the nurse and the thought of having to wait in admissions for a bed with this wailing child, we decided to try a few more things at home and if necessary we would have taken him to the emergency room. We just didn't know if he was in pain, if it was a side effect of the anesthesia, or just the confinement in the casts. Typically, this surgery is not known to be painful, but when you're talking about a child with Angelman Syndrome, you just never know. Thankfully, he was finally able to get some much needed rest and he adjusted to the casts.

The things you don't think of as being work are probably the most difficult. Carrying around your 7 year old is no easy wasn't my biggest concern in the surgery until I had to do it. Just the day to day care was physically daunting for us. Little J went to physical therapy twice a week and worked really hard at walking in the casts with assistance, and building the muscles that he had never used before.

After 3 weeks, they took Little J back in to remove his casts, make some adjustments, cast him for his post surgical braces and replace the casts. Thankfully, this time he came home in a much better mood.

After another 3 weeks, Little J finally got his casts off for good! Now the really hard work began! Since he was walking on his toes, there are a lot of muscles including the ones in his ankles that had never built up, since they were not being utilized. His braces were fitted and after numerous adjustments including one to stop it from causing a large painful gash on his leg. He was going to physical therapy twice a week and working really hard at relearning to walk and just building his muscle strength. His school staff met with his physical therapist and worked really hard with him on exercises through out his school day to help him even more.

Four weeks after his casts came off, we saw his orthopedic surgeon who was quite impressed with his progress. He is walking independently and mostly flat footed.

Fast forward to 6 months post surgical. Little J is doing really well. He still a bit weak in some of his muscles. He can walk independently while wearing his braces. When not wearing his braces he requires almost 100% support. We recently saw his rehabillitation doctor, and we're switching his braces now. Hopefully, the new ones will be more comfortable for him and help him with his progress. He's still doing physical therapy once a week plus all of his excercises and strengthening at school. This kid is working so hard! There is a possibility that we may do some botox treatment on one of his hamstrings as it's still a bit tight. We'll be meeting with his orthopedic surgeon and rehabilitation doctor in May to see which direction they want to go. Overall, Little J is doing amazing! He has been such a trooper going through all of this. He gets up everyday with a smile on his face and works like a rockstar at school and at his therapy sessions

This really was the bulk of our end of the year craziness. If you read this far, thanks for being interested in what we've been up to. I have so much more to update you on. There is our diva Princess J, our goofball Peanut J and their adventures along with a lot more on Little J as well as new and exciting news in research for Angelman Syndrome. I have a few rants and shares coming up too if you're interested!