Murphy’s Law

It does figure that a good doctor’s appointment will be immediately followed by a bad one. Well, bad is a relative term. I’m facing a lot of yuck after our second appointment of the week, but truthfully I still feel pretty good.
After some shuffling, we finally got into to see the physiatrist.
He was EXTREMELY pleased to hear that Charlie was standing, pushing himself into the seated position, and even taking a few steps. He had a student in there and he began talking about Charlie’s tone and his future “diplegic gait” and I’m not gonna lie–I loved hearing him call Charlie diplegic. Charlie isn’t diplegic, but the truth is that we’ve made a lot of strides with Charlie’s upper body and even though the doctors and therapists don’t want to believe that it’s ABR that’s helping him, I know that it is. (for those that don’t know, kid’s that are diplegic are affected mostly in the legs. Charlie is affected all over with one hand that’s pretty good)

I asked him to roll over and push up so I could take a picture and he did! Pay no attention to the over-flowing garbage in the background:)

With all of Charlie’s gross motor gain, the doctor decided that Baclofen wasn’t really an option for us any more. Now, he’s all about the Botox. We discussed the pros and cons, he gave me a handout, and I promised I’d think about it. I will think about it. It’s a hard decision. Basically, when it comes to Charlie I have a list of priorities. They are as follows:

  1. Avoid painful orthopedic surgeries
  2. Avoid other painful surgeries
  3. Avoid filling his body with chemicals.
  4. Allow Charlie to live as normal a life as possible–now and as an adult.
  5. Keep Charlie comfortable

Please note that the achievement of therapy goals is not one of the reasons I do things. I don’t believe in gross motor gains at all costs. Charlie does not need to walk for me to be happy. I’d much rather him live life in a wheelchair if that means he’s more comfortable. This is not every parent’s wish, but it’s mine and right now I’m in charge. If later in life, Charlie has a different opinion then I will defer to his wishes.

As far as I can tell, the only reason I would want Botox for Charlie would be to prevent his hamstrings from developing scar tissue. Scar tissue sounds painful. There are other reasons that the PT might want it, but that’s the only one that matters to me–comfort. The doctor also said that this might prevent hip dislocation, which means it meets my number one criteria. So that’s one priority against and two for it–I’m considering it.

The news that I really didn’t want to hear was that Charlie’s scoliosis in currently at 18 degrees so he now wants us to visit with the Orthopedist. Bletch. I really don’t think I can take another doctor’s appointment right now, so I think I’ll be scheduling that one in the new year. Also, if you refer to my list, orthopedic surgery is enemy #1. I hope to avoid it at all costs. I did a little research (aka Googling) and 18 degrees isn’t terrible, so they’ll probably just follow us closely at this point. Still, I don’t like adding doctors to my sheet–I like subtracting them. Adding an Orthopedist to my list is a double whammy.

One last thing! I’ve started a new giveaway today on my Facebook page. This week’s winner has a chance to win a free print AND a pack of stationery that I design just for them. I am really having fun with the holiday giveaways so go over there and leave me a comment telling me your favorite Christmas song.

Charlie has yet to find a Christmas song that he likes. Maybe if Lady Gaga wrote one.

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Comments

  1. Have you thought of seeing a chiropractor for Charlies scoliosis? We did this with our daughter and it worked! Charlie is a darling and I love reading your updates!

  2. therextras says:

    I'll cheer for "pretty good"!

    This time I get to say, first, how balanced you are in your decision-making for Charlie. Erm, and thoughtful, willing to research, loving.

    I'll agree with what you saw on googeU – 18 degrees is typically not near a surgical intervention. But he is young.

    Barbara

  3. Josephine says:

    Hooray for all that amazing progress! I'm so glad that you found ABR which is doing so much good for Charlie.
    I love our physiatrist. Good luck with the decision on botox! Not a fun decision at all.
    We saw an orthopedist…I think we only went once, and that was enough. He wouldn't write a prescription for AFOs or because he didn't agree with them. Perhaps he was hoping she'd get bad enough that we'd take her back to him to get surgery? Who knows.

  4. Joyce–we believe that ABR will eventually address Charlie's scoliosis–that's actually what it was developed for. These things don't move quickly, though. I will investigate the chiropractor thing–my MIL LOVES her chiropractor.

  5. Anonymous says:

    Love all the Charlie updates – have been following your blog since you were writing about teaching.

    Lady Gaga does have a Christmas song that I've heard on YouTube but it's a bit risque! Look up Christmas Tree if you want a laugh :)

  6. Wherever HE Leads We'll Go says:

    Charlie is so amazing! I love to hear about his progress (and to see pictures – you can never have to many pictures – he is so adorable!). I also love that you share your "brainstorming" on your blog. It gives me food for thought and also makes me wish I was a bit more rational about making decisions for Emily. I tend to go into panic mode first and then eventually calm down and check things out in a semi-rational way. Maybe not the most effective way to tackle things…

  7. I like Charlie's pose- it's the Cobra Pose in Yoga. :)

  8. PrayforNathan.org says:

    Katy, that's amazing progress if they're now calling him diplegic! Hooray for Charlie! That's really wonderful news.

    I also love your order of priorities for decision making. My nature tends to be a bit more extreme so it's nice to see another point of view :-) If there's one thing Nathan is teaching me, however, it's patience and balance.

    About his scoliosis – have you asked Leonid what he thinks about Charlie's scoliosis? A chiropractor would probably also really help. Also, there's something called "Rolfing" – they've had awesome results with scoliosis.

    I love the pics of Charlie, he's so handsome!

  9. Max goes to the chiropractor too.

    I haven't listened to the lady gaga christmas tree song, but I saw it was a free download on amazon.

    http://www.amazon.com/Christmas-Tree/dp/B001UQSE7O/ref=sr_1_1?ie=UTF8&qid=1260071143&sr=1-1

    😉

  10. White Hot Magik says:

    You know Katy, I was just thinking how so often I just do whatever the doc wants. (Unless I know it is an issue.) I was impressed how much you know and have a plan, I need to consider that more for my kids.

  11. Nathan Charlan says:

    So good to hear he is making so much progress! I just wanted to let you know we have done botox/phenol for Zach for a while now and we LOVE the results we get when it is working, it only lasts about 4 to 7 months. Right now we have been waiting for an appointment with a movement nero Dr. so he has not had his botox and we can tell a HUGE diff. Good luck on making a decision.
    Renee