Thursday, April 17, 2008

wheels and dreams

G's wheels are in!! I'm so excited to be getting the wheelchair, and I think it's a very timely arrival with the clubfoot surgery and all!

I had a dream last night. G took four steps, and I was just ecstatic. I can still picture his bare little feet taking those four steps. In my dream I shared it with everyone. His feet were straight, his ankles strong, his balance there, and it was such a moment in the dream! I would fret and stew and think I was having issues with him not being able to walk, but I've had some strange dreams this week. LOL There was this one with four guys with no shirts on....

Anyway, daylight breaks and the dream of G's steps is still with me. I was watching him get around yesterday, and he has his stumbling blocks, but it is amazing how he's figured things out. His arms are his legs, and he knows how to use them. I felt a bit melancholy watching him struggle to keep up with his siblings, but I felt triumphant seeing the ground he's gained. He loves his little homemade chair grandpa made for him, and I love the freedom, the glee that crosses his face, when he's in it. I had him outside in it yesterday, and he wasn't able to really get on the grass with it, but he was able to get around so much faster on the sidewalk. I do think that when all the snow melts and the grass isn't mush he'll be able to get onto the grass. As long as we keep it mowed and pinecones picked up!

Wednesday, April 09, 2008

The differences

My daughter was born with a left clubfoot in 1999. She was facing surgery at seven months, and I found out about the Ponseti method and its success rate prior to that. I was on a couple parenting and support boards at the time, and I was urged to call Dr. Ponseti, who was still treating kids at 86 years old. The man himself called me back, and a week later we were in Iowa. R responded wonderfully to the manipulation and casting and needed only a percutaneous heel cord tenotomy, a minor in-office procedure, and three weeks of casting after that. She wore a brace for the next couple of years, and we've had our ups and downs, but overall, it was successful.

My next two kids didn't have talipes equinovarus, but I knew deep down when I became pregnant with number four, he would have clubfeet. I don't know why I knew this, but I just did. When I had the ultrasound that told us he'd have clubfeet associated with spina bifida, I realized I was WAY out of my league. Especially when I saw them. They were so different than R's. It wasn't just the feet, but the entire legs were affected.

While I was pregnant with G, we contacted Dr. P about a referral in our area. We felt that going to Iowa weekly was a bit too much for our family of six, especially with all the other issues. The feet were really the least of our worries. Dr. P found us a doctor, and we met with him at around 30 weeks. He was wonderful and helped us understand spina bifida so much.

G's feet are nothing like R's foot. She's not had a regression, and he's on regression number three or four or something like that. He's had about 30 casts, and he's going into more shortly. We went to see Dr. Ponseti last year, and he had amazing results. G's feet responded fabulously to Dr. P's hands, but several weeks after being out of the casts, his heel was back up and his forefoot started adducting. Dr. Ponseti is 95, by the way, and still seeing kids. His 96th birthday is coming up in June.

G had two sets of tenotomies to bring his heels down. I am worried this surgery isn't going to stick either. That is my biggest fear. We will do this surgery, and it will go right back. Plus, he'll have scar tissue he didn't have before. I feel like I've been avoiding this surgery for NINE years (how old my daughter is), and here we are. Yikes.

It's hard for me to be here. It's tough to say he's having clubfoot surgery in two weeks. I think, though, we're doing the right thing. I want my boy to have the opportunity to walk, or even just to avoid skin breakdown from ill-fitting AFOs. This surgery could be the one to make a difference for him. I know if I sat and thought this long and hard about any of his shunt surgeries, I probably wouldn't have wanted to go through with those either. They HAD to be done. There wasn't a choice. Maybe that's how I need to approach this surgery. I have too much time to think about it! LOL

Saturday, April 05, 2008


This kid just never ceases to amaze me! He's just become incredibly verbal this past month where we have conversations. One of the things that really tickles me is he copies everything that's said. I like to use big words just to hear him try to say it. :)

Tonight, at bedtime, he just gazed at me, gave me a few kisses, and drifted off to sleep. What a sweet, precious boy.