Thursday, December 8, 2011

Round 5

It's been a great day! Jaylie had her hearing test this morning and there has been no hearing loss still! And her labs showed her counts and platelets were good enough to start chemo! So we are here in the hospital getting her couple hours of fluids with mannitol which is a bladder protectant to help protect her from the chemo. She gets it every time I just forget to mention it. She was so excited when we got the lab results and they were good because she wanted to stay a couple days in the hospital, she really likes it in here. So far today she has made 3 ornament crafts, done school work, read us some books, colored, and played her DS. She has paints and a scene it game in her room too to do. She stays busy:) Physical therapy came today and I usually just say she is doing fine but thought it would be good for them to evaluate her. Most brain tumor kids do pt through treatment and afterwards and Jaylie hasn't really had to. I haven't really noticed a difference in Jaylie physically but wanted her evaluated because I am with her all time so I probably wouldn't notice slight things. She is still really strong which is no surprise because she was always the strongest little girl we knew. She really favors her left arm and shoulder because that is where her port is and she is always very protective of that area. When it is accessed and there is a tubie hanging out of it she is even more protective. I think its because of the sticky window they put on it so it stays in place, she says it hurts her there when she raises her arm up. I can totally understand that. When we are in the hospital or the cancer clinic and it's accessed she hunches over really bad and will hardly use her left arm. The pt noticed and had her move her arm and shoulder around and did some fun little exercises with her and said that left side is definitely more tight and curved forward a little. Her shoulders are not even with her head, the left one is lower. Im sure it's more exaggerated because she is accessed though. She said she also might have slight scoliosis, but she would send someone from ortho to check it out. Scoliosis is one of the many late effects radiation can cause, so I wasn't too surprised, I just hope it doesn't get too bad. Well be seeing the physical therapist tomorrow too and maybe be doing some outpatient.

Her audiogram this morning went very well. At this point in the chemo regimen it is normal and likely to have some hearing loss at the high frequencies. I was kind of expecting it and preparing myself mentally for that but once again her hearing is perfect. No change is the high pitches or the normal pitches which is really amazing. The tech said she doesn't know why some kids cochleas seem to be more resilient to the chemo but that Jaylies were. She said that she is amazed with her and that most if not all of her chemo patients hearing had been effected at this point. We are very grateful to say the least. It is a happy day! Thank you for all your prayers and faith in Jaylies behalf.

Here are a couple pics of her doing her physical therapy.

Thought I would throw this one in, this is how she was sleeping this morning:) She is under that blanket. She did not want to wake up, we had to get up early today!

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