Janessa is pretty sick today, I thought she was going to be sick the other day but today is the day. She has high fevers, soar throat and nausea. She is soooo miserable, poor thing.
Isaiah is great however he pooped all over my newly washed carpet which we cannot get out. Uggh.
Avery is pretty miserable today and oh yeah, c-diff has reared it's ugly head today. I know that smell anywhere. Uggh. I hate poop.
Yesterday we saw the mito dr which was a long day for the boys followed by being stuck in traffic for some time (no more late friday afternoon appts for me). It is just getting more and more difficult to take these boys out for appt. that are long. I dread those days.
The dr. was very impressed with how wild and crazy Isaiah is, he was taking her pen out of her hand and grabbing the blood pressure cuff and throwing it. She really thinks that he has improved so much b/c he was put on the experiment drug so early on. Hmmm, could be! Just a small adjustment made to one of his meds. She was sooo thrilled that we finally stopped his cyclic vomitting but warned that he soon could get migranes which follows. I sure hope not.
Avery off course took up the bulk of the appt., his pallative dr. was also there, it was really nice. We talked about his pain management and adding and taking away meds. With him, things have to be done slowly and one thing at a time b/c he is so sensitive. We upped his methadone and we will eventually take away his am clonodine and klonopin, if those don't work then we are going to try neurotin which is specific to neuropathic pain and used alot in kids.
She did confirm that Avery has Leigh's disease which is of course not good but nothing that I did not know, just wanted to hear it from her. You can look it up for yourselves, just not a good thing and definitely terminal.
We also discussed at length all of the tests that have been done on them to find there mutuation. Surprisingly they have done a ton, basically all of the ones that were recommended by the drs. at the conference. Unfortunately all of the results come back inconclusive. UGH. So no idea on the mutation or which parent it came from. We ran a few more. So she is certainly digging which is a really good to know.
Also these boys are such a mystery that my mito dr. presented them at a conference. Wish I had been there so I could have heard the questions asked and what not. She is going to give me the power point disk though so I may post it if I can figure it out. I thought this was kinda neat. I told her about my symptoms and she ran so bloodwork on me yesterday. I am such a baby about getting blood taken and yet my poor boys have had this millions of times. Isaiah was laughing at me b/c I was making a sad face.
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