The results are in.........

Steve and Brooke went to CT scan early this am. Then at 12:30p Brooke had therapy. The therapist was happy with Brooke's progress. She did say Brooke's calf muscles are under developed and was thinking she might benefit from AFO's. They are braces for her legs to help her with walking and stabilize her more. I said "ok, yep I understand," and shook my head. In the back of my head I was thinking "I am not putting those on my kid." I guess I just see Brooke's progress differently. At the end of the visit she said, "let's just wait another 2 weeks and see how she does." Ok, happy with that decision :)

MD office called in the afternoon. CT showed Brooke has inflammation in the vein that her port is in. It's also narrow, probably from the inflammation. It's not infected and they did not see a clot. The veins we see are Brooke's body making new ways for the blood to get through ( a bypass). She has made her own bypass to make sure she is still getting blood flow. (that's smart :) So her port needs to come out next Tuesday and on Friday they'll do another CT scan to see if that vein restores itself or collapses. They say even if it collapses she has made enough of her own bypasses to be fine. Hopefully then the puffiness in her cheek will go down. So, with all that being said, I was not happy. Actually the only thing they could have said to make me happy was, "she's all set, nothings wrong." So they were in a no win situation. The PA was so kind and patient with a neurotic mother :) I had a bazillion questions running through my mind. When 1 thing goes wrong, I wonder how many more are around the corner. So after my mini mental breakdown, I'm good :) They will not put in a new port just do regular blood draws monthly. After much thought and thinking something is majorly wrong with my kid (like she's normal or something :) I've come to this conclusion. It's in God's plan! We are getting rid of hardware we don't need. We are decreasing IVIG to every 3 weeks, so things are heading in the right direction. They will also draw her T cells next week. Once again BIG NUMBERS!! I will say, if they go down, you might all see a full mental break down, not just a mini one!

Sisters Sand angels

Cousins