This morning I was emailing another mom about clubfeet and shared some photos with her. I hadn't been in the clubfoot folder for awhile, but my goodness. G was so little. He's approaching three shortly here, and I find myself going back to that last month of pregnancy. It was so marked with doctor visits, with unknowns and worries, and here we are today.

Life, though more difficult in some ways, is so much easier now that he's here. It's just life when you're living it, but when you're waiting for something and worrying, you're not living. You're suspended, and frankly, it really sucks. Limbo Land. I've been fussing about the shunt the last couple weeks. Is he three (two) or is it excessive irritability? For him, he's more cranky than usual. Growth spurt or excessive sleepiness? He's growing but combined with the cranky, I'm not sure. I'm not a fan of this Limbo Land but I have gotten better at dealing with it. Well, I say that now. Definitely subject to change.

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

scheduled

We have G's clubfoot surgery scheduled. April 25. I am feeling anxious about it, and I think the biggest reason for that is I have time to prepare. His shunt surgeries were stressful, no doubt, but I didn't have a lot of time to get ready. I just had to go ahead with it.

G STILL doesn't have a wheelchair, and we STILL haven't heard anything either way- approved or denied. He's getting around in a wheelchair my dad made him, and it is stinkin' adorable. He's also been cruising along the couch!! This is big stuff. Of course, he'll have his surgery and that'll set him back for a bit, but it will also help him in the long run.

It's been so busy, but it's also been nothing major, so all is well. :)

Regression

G is visiting the casting room again. His left foot has regressed, so he is back in a cast in hopes to regain some correction.

This is January. What a month for the last two years. I feel a bit of anxiety, as if something is just around the corner, daily.

January 9, 2006, G had his first shunt revision. Experiencing it for the first time was frightening and reassuring at the same time. Scary sending my child off for brain surgery but comforting knowing we had caught it and seen the signs.

January 11, 2007, we took G to the doctor and had revision number three (second one in May 2006) the next day. This revision wasn't so cut and dry. It presented oddly, the doctors were puzzled as to why, but we went home with G not quite looking right.

Two neurosurgeon visits, several phone calls, and amidst a bunch of other stuff, we returned to the ER at 3 am with a leaking incision on January 29, 2007. Surgery the next day.

We have also been in casts the last two Januarys. So much fun in WI to have to drive 2 hours one way. Weather just isn't consistent here. Nor is health this time of year. G is pretty sick with a head cold, and I think we'll be skipping this weeks casting due to weather AND sickness.

I've been meaning to write more consistently here, but I find myself not accomplishing this goal. I haven't made any resolutions this year, but maybe I should. One can make resolutions any time of the year, right?!

Changes

When G was born, it was hard to imagine what his feet would look like. I knew he'd have clubfeet before the ultrasound. When I found out he did have clubfeet amidst the other issues, it was almost reassuring. It was something I was familiar with. Our oldest had been born with a clubfoot, and we'd been there, done that.

At birth, though, the sight of his feet and legs shocked me. He didn't have "just" clubfeet, and it was very apparent. I remember when my daughter was born, and I couldn't imagine how they could fix her foot to be straight. It happened (quite nicely, I might add), and I naively thought it would be just as "easy" for G. When he was lying in the NICU, and his little legs lay there, I had the same thoughts, the ones I wasn't expecting to have because, hey, I've already done this! How would they possible straighten and appear "normal"??

It did take a lot of casts (21), but his feet really do look good. He's had tenotomies, but he hasn't had to have major surgery on them. Perhaps it's in the future, but for now, they are straight and beautiful. It is such a small victory avoiding that one surgery. There was a time where I gave up and felt "doomed" to have the surgery. I remember thinking, "What's one more surgery?", and I can't believe I ever thought that, but I did.