| By: Kristen |
| Date/Time: 9/26/2004 1:06:43 AM |
Update:
Havalah continues to be stable and is doing abou the same.
I haven't been doing a lot of updating because there's not a lot to say! Havalah's last labs were pretty good for her,
her labs from sept 9th were as follows : total bili 9.5, direct 4.0 (her total bili was about 6 a year ago right after the kasai, and has been as high as 12, so in the last year it hasn't fluctuated all that much.) for you non medical types normal would be below 1. her ALT is 131, AST 77, these are about double what is normal, but for havalah they're pretty decent. her alkaline phosophatase is normal at 300, and albumin is normal at 3.8, still no signs of portal hypertension or ascites that we are aware of. Her PT is 13.4 which isn't much over normal. her cholesterol is 532 which is crazy, but it will go down after she has her transplant, and there's nothing that can be done about it.
So in general her numbers are still very high, and she still clearly needs a transplant, but a year ago when we first started talking about putting her on the list our transplant doctor expected her numbers to start skyrocketing and for her to start having complications like the ascites and hypertention, he thought those things would happen within a couple months, but here we are a year later with numbers only moderately higher.
It's a good thing but it is suprising to me a little bit. She could start having those types of problems at any time, but she's been so stable, i don't think it will happen soon. People ask me all the time when I think her transplant will happen and i don't know what to tell them, In the back of my head I always thought maybe August and then when her PELD went up i really thought it would happen then. Now her PELD us back down to 11, you can be transplanted at any number, but at 11 it is less likely a liver would become available to her, we would have to get really lucky. So I no loner speculate when she will be transplanted. My guess is within the next year, who knows it could happen tonight. It's better for her to get bigger first anyhow, so we're in no rush.
On spetember 7th her weight was 17 lbs 15.1 ounces, and she has definately gotten bigger since then. We have an appointment with the surgeon who did her kasai this tuesday so i'll et a new weight then, but i am hoping for 19 pounds. I am hoping within the next two months or so she'll gain enough weight to make it onto the growth chart.
In develpmental news, the last couple of days she has been standing by herself. She will let go and balance herself, and then she smiles and looks very proud. Zhe has also been mimicking more and Steve has taught her to pretend to be a monkey by making itching motions under her arms and going ooo ooo aah ahh.
We're having a little bit better luck with the feeding tube, and this past week we got very good news in that PAM from futurehealth, has helped us to get our insurance company to cover the formula and supplement she gets through her tube. it otherwise costs over 500.00 a month, so it's great that we were able to appeal it and get it covered. That's about all that is new, i will update after we see the doctor again and we will hopefully be posting some new pictures very soon!
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