Jul 27, 2011
I haven't updated this journal in a while because our computer died...I have my work computer at home now and I am sneeking some time for some personal catch up at 6am!
Whitney has had a pretty good summer overall. She's been going to her babysitters house everyday she can so she can play with her friend (babysitters daughter that is just a little younger than Whitney) and they have a pool so she swims - great PT. She's been taking a hip hop & lyrical dance class once a week too. She still has all the pain and some days are worse than others but she's coping really well and generally not letting it stop her.
These past two weeks of intense heat have made life more difficult for her though. Her evening and early morning pain have brought her to tears a few times. I hate that we have NOTHING to give her during these times to relieve the pain. She says she is having an average of 5 blank moments a day as well.
We got the results of the genetic testing - the chromosomal array - and it was normal. BUT really not an indicator of anything. I am not sure why that one was even done. I thought they were doing the specific mutation testing but they opted for the cheaper generic array that really only shows major mutations at the chromosome level not particularly at the gene level or smaller. So now we wait for more authorization for the specific testing.
We also got the results of the sleep study. She has signs of obstructive apnea - meaning she woke up slightly 8 x an hour because of breathing obstruction. So for this we get to make an appointment with and ENT to check her tonsils and adenoids. Her brain also woke up 20x an hour. No reason given...She had periodic limb movement - we've seen her jerking like this for a while. They said it could be due to iron deficiecny which coincidently we had checked the week or two before I got the results and she was anemic (like Chrissy & I are too). So she is on iron. (have you ever taken iron - the results are gross)...and now we get to make another appointment with the epileptologist.
Whitney is excited about returning to school this fall. She is going back to St. Pats instead of the public school. I already worked out a part time schedule to start, just to get her integrated back into the swing of things and to see if her little body can handle it. No PE though. That would just cause the day to go down hill. We've discovered that even though she wants to run and can physically do it - it causes immense pain, burning, and swelling. She puts up with it in dance but during the school day it would just ruin her concentration. Because after dance she will come home and show me her new "moves" but then she crashes for the evening and only wants to do light activities like reading or tv...no more exercise.
Hope everyone is doing well and enjoying the summer!
Oh Chrissy has not had her baby. She is 9 days overdue and they are inducing her tomorrow morning unless she decides to have him today!