49.7!?!?!?!?

We had our appointment with Dr. Kogan today. This week has been rough, Jack has been complaining about his foot. He has a lot of pain on the bottom of his foot (where his arch is), he describes it as a stretching pain. His toes have been very painful…poor kid can not tolerate them being touched, even putting a sock on hurts them. Just in general, his foot is very sensitive and tender. We called Dr. Kogan on Monday after a very rough day and she said she had a few ideas about what it could be and we’d discuss it on Thursday, emphasizing that we should NOT stop the daily lengthenings. His aquatic PT and his regular PT both thought it was something nerve-related. They also wanted us to ask the doctor if they could start some weight-bearing work with him to help get that foot back where it should be.

So, today Jack is sitting on the exam table and Dr. Kogan was chatting with Jon and I. Not paying much attention, she says, “let’s check out this foot” and reached over and grabbed his foot. Jack screamed, almost kicked her, and starts sobbing. She felt horrible, she kept saying, “I am so sorry Jack, I forgot, if there is any patient I would never hurt it would be you.” I had tears in my eyes because he was in so much pain just from her touching his foot and she really truly felt terrible. We got him settled down (thank God baby sister Meezy was there to make him laugh) and Dr. Kogan says, “oh yeah, that’s nerve pain.” I never really got a clear explanation from the PT’s, Dr. Kogan, or our in-house neurologist as to what exactly is going on with the nerve….stretching, pinching, over-stimulating….whatever. All I know is that it hurts really really bad and we need fix it. Now. We are upping his Neurontin, which is hopefully going to take care of the pain. Dr. Kogan agreed with the PT’s that it is time to get him weight-bearing. I am dreading this and looking forward to this. With the nerve pain, he isn’t exactly thrilled with the idea of putting weight on that foot….not to mention he’ll have to relearn how to walk now that he doesn’t have a 6 cm length discrepancy and a heavy shoe lift to cart around. HOWEVER, once we get over the initial hump and the nerves settle down I think this will be very exciting. Speaking of exciting….we got some very incredible news today…..

Jack’s new bone growth is at 4.97 cm!!!!!!!!!!!!!!!!!!!!!!! With our turnings we calculated him to be at 4.3 cm, but apparently the osteotomy itself (the breaking of the bones) and putting the fixator on stretches the 2 bones apart a small distance. Today, by xray he had 4.97 cm of new bone. Technically we have 10 more days reach our goal of 6 cm, but we don’t see Dr. Kogan until the following Wednesday (13 more days). I’m not willing to stop turning until I see that xray that shows me 6 cm. So, 13 more days!!!! It’s do-able. This past week I had many “I can’t do this anymore” days….a big huge thanks to my parents and my sister for pushing me through and keeping my eyes on the final goal.

So, that's the appointment update for today. We ended with a visit to the OT to get the foot brace padded and softened up. While we were there, we raided the tootsie roll bowl...so I would say that was probably the highlight of the visit.

When Jack had his surgery and we were in the hospital, there was a boy down the hall celebrating his birthday. They decorated his door with a big “Happy Birthday” sign. I remember walking by his room on my way to get coffee and you could tell by the way his room was decorated that he has been there for a while. It made my heart drop and I went back and told Jon about it. Well, Jack must have overheard this conversation because he’s brought it up several times since. Last night he says to me, “I wish I could do something for kids who are in the hosptial on their birthday.” I explained to him that there are charities that buy presents and cakes for those kids and he says to me, “well, I want to be a charity.” I told him it’s not that easy, you have to raise money to buy the presents, etc etc etc. He was completely unfazed and says “I can do that.” So, I asked him what his charity is called and without skipping a beat he says “Little Hands Can Make a Big Difference.” (Yes, my heart melted too…..) Jon and I talked with him and he REALLY wants to do this, so we’re lettin him do it! Our plans include a bake sale, a talent show, a raffle, and an art exhibit. I will keep everyone posted on our progress. I have to tell you one more thing he said, “Mommy, we have to make sure we buy them really nice presents, so when they open them they will feel good that someone bought them something nice and not junk. And we have to wrap it nice, with lots of bows. And we HAVE to bring them Dunkin Donuts because everyone knows America runs on Dunkin.”