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Sorry I haven't updated in a couple days. Been feeling very escapist recently and escaping into WoW.

Little T had horrible bruising and petechiae on his chest. Sometimes Little T gets very angry about his g-tube and start yanking at his g-tube extensions. C tried to stop him and didn't realise Little T was bruising himself. So we knew going into his clinic apt on Tuesday that his numbers were going to be down --87 down from last week. His hematologist caved on giving him aspirin. The UCSF doctors had prescribed baby aspirin to make the platelets less sticky. I think it's a last ditch effort to stave off chemo. He still has to be weaned off steroids regardless of his numbers and if his numbers don't pick up, he'll have to go on something else like chemo. I pray aspirin or his own body does the trick.

Yesterday I also finally called in his blood pressures after forgetting, because I figured his pressures were stable the same level as last week -- above normal, but not high enough to need meds. The nurse I called said the ultrasound showed an abnormality in the blood flow to one kidney. Problem is that could mean nothing, because it turns out when you examine people in great detail, lots of folks have slight abnormalities that mean nothing (we've discovered this previously with his urinary tract) or it could mean something serious. The nurse didn't know. I'm waiting for the doctor to call back. I'm assuming since no one called us that it means nothing. From experience when it's bad news, they usually call us pretty quickly.

We also had a GI apt and decided to do nothing in terms of his feeding, because as the doctor said "Too much else is in the air." Depressing but very true. But I like this doctor sooo much better than the NP. He understand his huge weight gain is due to the steroids. He's still not getting that many calories for his age.

On the plus side, our new nanny seems to be working out well.

Little T is a great lesson in deciding to be happy. He laughs and makes jokes most of the time. I try to learn from him. I try not to think too much about the immediate future, but on the here and now is pretty good...when Little T isn't screaming.

This morning at 5am, Little T woke up screaming. I got up and patted him a few times and he went back to sleep...for about a minute. Then he woke up again and started screaming again. I picked him up and I immediately got soaked. His front was drenched in cold formula, because he had wrenched the cord of the pump from the extension. So we all woke up to change him and dress him. Well, Special K didn't need to wake up, but unfortunately we need to turn on the light to change his arm dressing and his g-tube dressing and that woke up Special K. I can change all his dressings when I'm more awake, but it's hard for me with my movement disorder when I'm awake, let alone half asleep, so poor C does a lot of night duty. I used to feel bad about it. Still do sometimes. But I have tried by myself and it usually works out poorly for everyone. It's just one of those things about looking after a special needs kid.

C asked "Why didn't he wake up earlier?" I replied "He's just a good natured kid." I mean I dunno about you, but if I were in his situation, I wouldn't have been mollified by a pat on the back the first time. Another weird thing is that if Special K wakes up herself after a nap, she often whimpers, but if she's woken up in the middle of the night, she usually just lies there, gazing up sweetly. It's really nice. I feel blessed to have two such sweet kids.


( 4 notes — Leave a note )
Feb. 8th, 2006 08:31 pm (UTC)
Drenched must have been the theme of the evening. We had a similar problem last night, but it was all my fault.

Thida, with all the iffy news you've reported today, you end on such a positive note. I'm glad that you're able to see the positive through all the muck. Your lovely little ones are so lucky to have you as their mom.

Feb. 8th, 2006 10:07 pm (UTC)
"Little T is a great lesson in deciding to be happy. He laughs and makes jokes most of the time. I try to learn from him. I try not to think too much about the immediate future, but on the here and now is pretty good"

My children are my best teachers. They continue to enlighten me every day.

You do have a beautiful attitude, and it's contagious.
Feb. 8th, 2006 11:10 pm (UTC)
"You do have a beautiful attitude, and it's contagious."

I completely and utterly agree with that statement.
Feb. 9th, 2006 05:44 pm (UTC)
Thanks! You're all sweet to say. I'm not always positive, as you'll see in my next post, but I do experience a lot of joy as well as sorrow.
( 4 notes — Leave a note )