We saw the hip doctor on Wednesday...I know, I know, it's Saturday and I'm just now getting to telling you about this!! You see, there's this show on TV called Bones, and since we don't have TV, I get sucked into shows with multiple seasons on netflix instant streaming. I've watched 4 seasons of Bones and I can't stop. Usually I am okay with just moving on to another show even though there are more seasons I can't get right now, but this one is different somehow. There's an underlying love story between 2 friends who are partners in fighting crime, there is the beautiful slutty girl who experiments with bisexuality and whom everyone seems to fall in love with despite the fact that she's pretty slutty, and then there's the fact that the show is filled with nerdy scientists who solve murders!! Yeah, pretty great huh? It's like Law and Order meets Big Bang Theory...or something. Anyway, I found pirated episodes online and I am plowing through them with reckless abandonment, I'm addicted. ANd because that's ALL I do when I'm sitting here holding Sadie nurse-napping, I've neglected to write on my blog.
Please accept my apologies.
Okay, now that I've gotten that off my chest...we saw the hip doctor this week. In case you don't remember there were x-rays taken of Sadie's hip while we were staying at the hospital for Sadie's long-term EEG. There was some concern as kids with CP and high muscle tone (tightness in the muscles), tend to have problems with hip development due to straightening and pulling in of the legs. Sadie was also given a new medicine during this hospital visit to help relax her muscle tone and give her more control over herself. This new medicine has actually done wonders for Sadie and we really see a difference. But her left hip is somewhat of a concern.
We revisited the doctor who requested the x-rays and he mentioned that he'd like to inject Sadie's inner hip tendon with a medicine called phenol. (the link I gave you is wikipedia, the ENTIRE thing is about the chemical makeup of phenol, but at the bottom under "niche uses" it mentions the use for paralyzing nerves...scary) This would disrupt communication between that tendon and her nervous system and cause her leg to relax and hopefully allow that hip to move and develop correctly. This could last 4-6 months. (if you want to learn more about phenol, google "phenol used for cerebral palsy" and it'll give you more information)
I looked phenol up on the internet and found out that it's very common to use in people with CP, but it's pretty scary. It can cause side effects that an adult might be able to handle (like tingling and a cold sensation at the point of the injection), but to me sound like a recipe for a screaming baby. There is also the possibility that it could kill the tendon completely and we're not sure we're ready for that, she's still so young, and she might need that tendon for walking! We agreed to think about it and to see an orthopedic surgeon to see what he thinks. That's who we saw on Wednesday. His name is Dr. Karlen and he was very nice.
Dr. Karlen told me that, while Sadie's hip is somewhat of a concern, it's not something to get really worried about yet. We just need to keep an eye on it. Which means no drastic measures...like phenol. Yet. Dr. Karlen let me take pictures of the x-rays with my phone so I could share them with you, so I have attached them below so you can see for yourself. He says her sockets and bones themselves look good, we just want to make sure the ball of the socket digs real well into itself so that she doesn't experience popping out of joints or wearing out of cartilage. He would like to see her every 6 months or so and do more x-rays to keep an eye on it. He seemed fairly positive that we probably wouldn't need treatment for years.
This is great news.
And now I have 4 more episodes of Bones before I am done with season 5. Sick huh, maybe I need to see a "Bones" doctor myself.
You'll notice that the left hip (marked with a big red L) is slightly higher and sits a little less imbedded into the socket. Compare with the right hip, which looks okay.
This x-ray was taken with her legs froggied outward, you can see how the right hip is at a good angle for the ball to form its socket. However, the left is lacking in range of motion and is at a slightly different angle. We're working on that.
PS. I raised $375 in my first day of fundraising!! ...but I haven't raised any since. I'm still looking for donations and no amount is too small. Please consider giving to the Phoenix Children's Hospital, the very place Sadie's life was saved. Click the link below to read more about it.