Friday, December 4, 2009

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.