Thursday, October 22, 2009

A sign?

One year ago today we were quietly grateful Brady made it through a somewhat elective surgery to correct a birth defect. I say somewhat because it wasn't life threatening, but it could have affected him in all sorts of ways later on. We went ahead with it, trusting our doctors because we believe they have the knowledge and know what's best for our children when it comes to medical decisions. He had some pretty disturbing complications from it weeks later that lasted for quite some time. For months following the surgery we questioned whether we had made the right decision in going through with this somewhat elective surgery. Now, a year later, everything's fine. If we had to do it again, would we? I don't know. We'd probably weigh our options out again heavily and chances are, we would do it. Knowing that in the end, he turned out okay. In fact, he doesn't remember any of it. Jim and I are the only ones who seem "scarred" by it.

Is this a sign? Does this mean that God is telling us to go ahead and listen to the doctor with botox treatments, trust his wisdom and expertise? It just seems like it comes at the right time. Or is it a sign of us questioning those months after where things were such a struggle for us. It was more of a heartache for our son than an actual physical struggle. If we go through with the botox it will be a physical struggle for all of us.

Needless to say we haven't made a decision yet. We're at a complete standstill of indecision. I have trouble deciding where to eat lunch, what to wear, even picking out shoes for the boys is painful. Geez, Jim decided the color theme for our wedding because I couldn't. His favorite colors are orange and green. My bridesmaids are eternally grateful he went with hunter green! Although you know I'd probably choose orange if it were to happen right now! :) I thought I was getting better for a while. I was becoming a decision making adult, a married woman who had a great job who could make decisions and had a voice. Then I had children and suddenly I became afraid to make decisions. What if I make the wrong decision? What if I fed them the wrong foods, bought the wrong brand of diapers, make the wrong medical decisions? I look back at some of the poor (bad, wrong) decisions I've made in my life and doubt my ability to make any good decisions. And sadly I've passed that indecisive gene onto Nathan. The last time we were picking out shoes for him we had to call Jim to ask his opinion on which ones to get. Seriously? Two children and a mom couldn't pick out a pair of shoes for a four year old? Then there's the fear of making a decision and hurting someone's feelings or choosing something you don't like. What if I choose Mexican and you wanted Italian? I have that fear of letting others down, you know. That leads into not being able to make decisions.

As we were walking tonight the boys wanted to race Jim and Kodi home. Nathan and Brady kept looking back to see how far Jim was pretending to stay behind. I told them both to never look back, to always look forward. That looking back never gets you anywhere and it slows you down. Keep looking forward. Hmm, at the time I thought it was brilliant. Now, I'm thinking not so brilliant. We have to look back; leave the past behind us. But use it to grow and learn and trust in God's plan for our lives. Use it to show His provisions for us. Use it to remind us of His love for us and how He has held us in the palm of His hand and carried us.

We'll make a decision soon, it's important we do before Nathan becomes a real giant. We cherish your prayers as we learn to discern and as I do my best to make decisions. Just beware of asking me out to lunch-know where you're going because I'm not going to decide!

Wednesday, October 14, 2009

The "B" Bomb Hit

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!