This week marks 4 months since we found out Caleb has cerebral palsy. I vaguely remember what life was like before the diagnosis, the plethora of doctors visits and the weekly therapy sessions. Caleb is still his sweet, adorable self. His big smile and hipster glasses get lots of looks while we’re out in public. He’s still little enough that there isn’t any real difference between he and Wyatt when they sit side by side in their stroller. But I know as Wyatt learns to walk then run, the major difference between them will become obvious. But for now they’re just two tiny men, content to have momma push them around.
I remember the goals we set during our first therapy session. We hoped Caleb would be rolling, sitting and army crawling by 6 months. I can proudly say that C rolls all the time and sits up completely on his own. He still resists being on his hands and knees, so we’ve been focusing really hard on that. His only form of actual movement, aside from rolling, is pushing himself backwards while on his tummy.
It’s incredible what therapy has done to help Caleb. Shane and I each stretch Caleb once a day, and he also works on a few things at daycare as well. We’re having Caleb assessed tomorrow to see if he’s eligible to receive occupational therapy through the same county program in which we receive physical therapy. As far as his fine motor skills, he isn’t even the same kid as when he was diagnosed! He used to pull his toys in close to his chest and explore them with two hands (and his mouth, let’s be honest).
Now he’s able to isolate each hand so he can reach for things with one hand while playing with something else in the other hand.
He still primarily uses the scooping method to feed himself, but he’s kind of doing a modified pincer grasp now. Caleb can almost clap open-handed too. He’s really overcoming some of the spasticity in his arms and hands and I hope that it doesn’t regress upon his next growth spurt.
He’s able to bear weight on his legs, but that’s more of a function of the muscle tightness I’m afraid. When you stand him up, he’ll lock his knees and he wants to go up on his tip-toes but we try to discourage that. We practice standing by starting in a sitting position and rocking him forward so as to give him the momentum to push off his legs and use his own muscles to support himself, rather than relying on the rigidity of his legs. He’s doing pretty well with that. I’m anxious to meet with his orthopedist in November. We were told to prepare for the possibility of ankle-foot orthotics to help Caleb stand.
We’ve come to a point now where two doctors have told us to consider medical treatment for Caleb’s spasticity. Our developmental pediatrician thinks Baclofen is a good starting point, while our neurologist claims Caleb is a great candidate for Botox injections in his leg muscles. Shane and I aren’t really enthusiastic about either option, truthfully. Baclofen is an all-over muscle relaxant and it takes a lot of tweaking to get the perfect dosage that’ll keep Caleb’s muscles loose but not make him loopy. There are potential side effects and if Caleb were to discontinue use, he’d have to ween himself off of Baclofen slowly. This is because a sudden withdrawal could cause really serious side effects and complications.
Botox on the other hand is a newer treatment (less long term studies) and injections into Caleb’s legs would decrease tightness for 3 months. I like the idea of a more focused treatment, but Caleb would need to be under general anesthesia in order for the injections to be accurately administered. Not to mention the fact that, oh you know, Botox is related to botulism.
I asked the doctor why we can’t just continue with therapy and forgo the medications. He explained that therapy is sufficient for now, but as Caleb grows his muscles will get tighter and tighter and he would need hours of stretching a day to keep limber. We also know that the more relaxed Caleb’s muscles are, the better he’ll be able to work on gaining mobility. We’re not thrilled about the idea of either Baclofen or Botox but we recognize we have to provide Caleb with whatever we can to allow him to live to his fullest potential. I wish this decision was cut and dry. I’ve scoured the internet and some parents swear by Baclofen while other have had great results with Botox.
Besides the difficult treatment decisions for Caleb, I’d say things are going pretty well. We’re seeing incredible progress and our little C-Monster is just such an awesome kid. As is expected, sometimes I have bad days were I feel sorry for myself and for Caleb, but I look around and think about how truly lucky I am and shut down my pity-party.
Becoming a special needs mom has opened my eyes to this whole different community of people who are trying to change the way people with disabilities are viewed in society. I’m always coming across inspiring stories and sometimes address them on this blog or Facebook.
Recently, I wrote about a teenager with cerebral palsy named Matt Walzer. He wrote a letter to the CEO of Nike, pleading for a sneaker that would be easier to put on. The letter went viral and within 48 hours he was contacted by a developer within the Jordan brand of Nike, John Poyner. John happens to have cerebral palsy as well and was eager to work with Matt along with Tobie Hatfield, who designed the infamous “spikes” for Olympian Oscar Pistorius. Matt is going to get his new shoes because he had the courage to reach out and total strangers had the compassion to stand behind him.
It’s stories like these that make me realize that we’re all going to be ok. I trust that the people who surround us, both near and far, will provide more than enough of the support Caleb needs to live to his fullest potential. I’m working on focusing on the here and now and letting go of the future because there’s no sense stressing over what I can’t control. And believe me when I say that I cherish every day I get to spend with Shane, wild man Wyatt and this special little guy…