So things are a good right now. Looks like it was the medication from last month, I'm not sure it was compounded right. This months batch seemed to work a lot better.
Kiddo made it through summer school and has a couple weeks off before regular term. We have an appointment at UCSF in a few weeks with a new GI doc. We are hoping fresh eyes might see something.
And even better news, I am getting a mini vacation. A friend of ours is taking Naomi overnight so I can go on a getaway with the girls. Mommy's version of a doctor's appointment. It will involve shopping and eating so I am way good.
On sort of a side note, I'm thinking of taking my blog in a more family general direction. There is a lot going on that doesn't involve Naomi and her health and I really don't want to maintain two different blogs. I'm just not that motivated.
So for our first family announcement, we have started the adoption process! Soon we start the paperwork process!! So papercuts here I come.
Tuesday, July 29, 2008
Thursday, July 3, 2008
Hanging in there
Its been awhile since I've posted as for a short while everything was quiet and not much was going on. Once being diagnosed with generic "liver disease" they put Naomi on Actigall. And after a few weeks it really did help. She could focus on things besides scratching, she was staying awake in school and participating more and in general was a much more pleasant kiddo. You could change her diaper without hands frantically scratching her legs and back. And she wasn't constantly rubbing her legs and feet together. It was nice.
Sadly for whatever reason the last two plus weeks have shown a marked increase in itching and general crankiness. We thought at first it was because of an ear infection she had, but that has since cleared up and she is as itchy as ever. I sent an e-mail to her GI doc and he starts talking about liver transplants and scares the crud out of me. He orders some tests which we had done today, and Praise God! they have come back normal. So what is causing the issue I don't know. I do know that for the first time in months I've had to physically restrain her from scratching because she couldn't stop and was making herself bloody, and that she wakes up just crying and scratching in the early morning. One decision we have made is to go ahead and get an consult to UCSF, her primary doc put that in today so we shall see how soon they can get us in.
Its not always bad, she has her good moments and we enjoy those when we can. For now we pray and keep her as comfortable as possible. The Actigall was working and we can pray it will work again.
I'll post as things go on. God Bless you all!
Sadly for whatever reason the last two plus weeks have shown a marked increase in itching and general crankiness. We thought at first it was because of an ear infection she had, but that has since cleared up and she is as itchy as ever. I sent an e-mail to her GI doc and he starts talking about liver transplants and scares the crud out of me. He orders some tests which we had done today, and Praise God! they have come back normal. So what is causing the issue I don't know. I do know that for the first time in months I've had to physically restrain her from scratching because she couldn't stop and was making herself bloody, and that she wakes up just crying and scratching in the early morning. One decision we have made is to go ahead and get an consult to UCSF, her primary doc put that in today so we shall see how soon they can get us in.
Its not always bad, she has her good moments and we enjoy those when we can. For now we pray and keep her as comfortable as possible. The Actigall was working and we can pray it will work again.
I'll post as things go on. God Bless you all!
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