Stupid is not a nice word. But, protrusio hasn't done me any favors, so therefore, stupid protrusio. We saw Dr. Wenger today at Rady Children's. He wanted a better look at Kate's hips, so off she went for yet another x-ray. You may be able to see the small dot he put on Kate's right side, pictures left, that shows where our issue is. The head of Kate's femurs, both sides, are creating too deep of a pocket and will start pushing into her pelvic bone and causing issues there.
The fix? Well, the Dr. said that there were exercises and "some surgeries" that may help slow down or stop the process. He has ordered a CT Scan of Kate's hips to get a better look. We have to have that done so the results are back before the 20th of December. On the 20th, Dr. Wenger will take all of Kate's x-rays and CT results to a committee of Dr's who will discuss what should be done next. He said that Marfans can make bones softer than they should be. Her femur could actually start pushing in her pelvic bone. Wonderful. He also said that, while protrusio can be caused by Marfans, kids Kate's age having this problem is not as common. The Dr. said that we may be alright for now, but when Kate has a growth spurt as a teen, we may have problems. I guess we wait and see what the committee thinks.
Dr. Wenger said she could go on with her normal activities for now. At the time I didn't even think about this much, I just nodded my head and thought great. But, thinking about it now, it may mean that she may have her activity level changed at some point. Between this and her aorta, she might become a couch potato. As if I could make that happen. Kate is a highly energetic kid, getting her to slow down at all will take serious effort.
He asked if Kate was having any pain. Dr's seem to be genuinely surprised that she is not having any. That is my one saving grace right now. I asked Kate's teacher to let me know if Kate has ANY pain or anything related to pain. Pain will NOT be tolerated. That sounds good, doesn't it? Like I really mean it? I am all about medication for pain control. Bring on the drugs!
Kate. She literally skipped out of there. I know some of this is not computing. She is only 8, and for once, I am glad she isn't getting this whole picture. I left the appointment teary eyed. I also left angry. I found myself saying something I swore I would never say. THIS ISN'T FAIR! I would never think that about myself, but this is my baby. So, today's theme is that it's not fair and I'm ticked. It's a good thing there are hours between appointments and me posting. "Ticked" is a very watered down version of what I have been feeling today. Are you sure we are only given things we can handle? I think someone made that up to force someone else to buck up. Well, I don't like being forced to do anything. (Insert screaming and yelling here)
There's my rant. The best I can do in writing anyway. Just watch out if you see me in the flesh. I was sarcastically thinking earlier that my life is like freaking Disneyland. So, you know what? I'm taking the kids out of school Thursday and going to Disneyland! Ha, take that life!
Cardiologist tomorrow. See what I mean? Freaking Disneyland.
so sorry!!! Maybe this is a way good sign that she doesnt have any pain and that it wont come to that.. disneyland will do your family good.. nice to get away from the dr app and everything else with all this!!! We love you and cant wait to see you in a couple of weeks!
ReplyDeleteThis is a lesson for all of us to say........."freakin' Disneyland" and just GO! Lagoon.......what have you close? Seriously - why do we need to wait for something like this to remind us to do these - random, fun, memory making things with our kids? You can only do so much medically...but as her Mom Marci - you can do the most just by what your doing.....loving her :)
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