It's been a full week, I've even had the thrill of going away to Catalyst, an exciting weekend of horseback riding and a great Sunday at Crossings, but my brain and mostly my heart are still aching over a decision that needs to be made. Last Tuesday we visited Nathan's doctor at UNC. After waiting almost two hours we finally got to see him. We like this guy, he's got an incredible way with the kids and always takes time to ask how we're doing as parents. But I'm always anxious for what may come out of his mouth. Prior to this visit, Nathan's physical therapist had been leading us on nicely with Nathan being able to go to a home therapy program within six months. Basically that means that he's meeting all of the goals she can set for him so to save us several thousands of dollars, we may as well do what we do at home. We've been going to her for almost three years so we know from her instruction what we need to do for him. Not to mention that he has hit the age where he realizes not everyone goes to therapy weekly and wears AFOs. He loved and responded well to aquatic therapy, but since he met his goals for that insurance and therapy requirements weren't too keen on him continuing it.
So, we enter Dr. Alexander's office last Tuesday thinking he's going to go along with Nathan's PT's thoughts about a home program and we'll walk out, rush back for Nathan's football game and be happy to not return to the light blue area for 6-9 months. You know that saying, tell God your plans and He'll laugh at you. So glad I could become His personal comedian last week. The doctor looks at Nathan's weight and height (51.2 lbs with clothes and AFOs, 3.9 ft. tall) and gives us the look. Normally that look leads into a lecture about Nathan's eating habits and what I feed him. That leads into Nathan's preference for fruit over fries any day. It's a frustrating, tear-jerking battle for me. Nathan's a solid, tall young fellow. Just ask someone who's tried to pick him up lately, I should have amazing arms-oh well. The look didn't lead into that. It led to a discussion about Nathan's rate of growth being consistently high and at this rate he's going to run into some problems because his hamstrings and calves will not stretch to keep up. I get that, I see that, I ache because of that. I envision what that will do to him physically as Dr. Alexander imitates him walking in a crouched position. When is surgery an option (didn't we just finish up all the surgery business I need forever with Brady this time last year?)? Surgery is not an option until he's about 8-10 years old for him to reach a certain state of growth. Phewy. What are our options?
That's when he drops the "B" bomb we've worked so hard to avoid the past two years. We've read about it, vaguely researched it, heard from other parents about it, but kind of put it in that drawer labeled "not us." Because for two years they've told us he's not a good candidate (they most likely said "at this time" but I'm sure I was so excited to hear not a good candidate that that's all I heard!). Now remember, we walked in thinking we were leaning towards a home based program, just wanted you to stay on track with our hearts. :) Botox. Not the get rid of wrinkles kind (I'm so going to need that after this), but the relax your muscles enough so we can stretch them silly kind. Yep, an ugly toxin injected into his muscles. Several injections at that. Did I mention that we waited an unbearable amount of time? Therefore we were not given ample time to discuss the "B" bomb? He did give us a patient information sheet on Botox. The same kind of information your pharmacist gives you listing all the side effects of your meds. Scary stuff in there with the what ifs. Thus began my ridiculous internet research and you know how that can go. And the pestering of friends and anyone who has had any encounter with Botox at all. For a brief explanation you can check this out. I think it gives the best general information out there. http://www.ucpnyc.org/info/about/botox.cfm That's the cheery, this is good for your child news. Then there's loads of news out there that's not so cheery. Like the one that says it's not FDA approved for children under 12 but it is still used. Complications of breathing difficulties and death are possible. http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2008/02/09/BUIUUV6G3.DTL While HSP and CP present similarly in gait and ability to treat, that's about where the similarities tend to end. Many CP patients have underlying issues which may be the cause of the problems that have come about from using Botox. Nathan has excellent health (PTL). However, we wouldn't want to find out something too late. Then there's the matter of the injections. It is vitally important that the correct muscles be targeted. I'm certain Dr. Alexander and his team know exactly what they are doing, it's still my Nathan who means more to me than anyone could possibly know. Every time I think of this possibility I get teary eyed and sick to my stomach. There is an option of sedation, but that brings another host of concerns. Without that we have to trust that Nathan will be able to handle the multiple injections with just the numbing cream applied before hand. What happens after that? From my research and brief discussions with his PT, we'll have some very intensive PT over the course of the Botox working to stretch those muscles. And we'll pray like crazy all the while that it works for a long while, it works to stretch, stretch, stretch those muscles and it doesn't affect any other parts of his body or his being. There's a small chance it could weaken the muscles he needs to walk well, especially at first. Oh so heartbreaking. There's also been some discussion about serial casting to really stretch those muscles. Here's some friendly information on that: http://www.sjbhealth.org/16196.cfm. The main thing is that if we do the Botox treatment then we need to take full advantage and stretch him as much as possible while it is effective. Chances are he would have to have more than one treatment since they only last a few months at a time. I don't even want to begin to think of how much this will cost. I can't think that way, if it will help him walk taller and stronger for the rest of his life, it has no monetary cost but a lifelong value.
Jim and I are still discussing this and praying about this and I'm doing a lot of crying about this. Every time I think I've put it in God's hands to have Him resolve it, I grab it back to worry over because I don't feel like I've gotten an answer yet. I'm an impatient sort when it comes to my children. I am however, extremely thankful and ever so grateful that while I'm stressing and crying and extremely anxious about this decision, there are others out there with far greater concerns for their children's health and well-being. My incredibly amazing children are sleeping peacefully in their beds tonight knowing an infinite amount of love from their mom, dad, each other and our heavenly Father. Really, what more can I ask for? Oh, I can ask for a cure to this disease or easier treatment. But I know that I am blessed beyond measure to have them in my life exactly as they are-perfect creations of our Father. I will ask for your prayers as we make this decision, that once a decision is made we'll have peace with it and can go forth with few reservations. I will carry my tissues either way!
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