| By: Kristen |
| Date/Time: 5/22/2004 10:51:29 PM |
Update:
Hello!
It's been awhile since I've written an update. There hasn't been a lot of changes with havalah's health. Since i posted last some of her labs went down a bit, and then went back up a bit the next time. Her alt, ast, bili and cholesterol levels are all very high. In good news she still doesn't seem to be experiencing any discomfort aside from some itchiness. She still has a good appetite and doesn't show any signs of lethargy. She has offically begun crawling. She's been doing fairly well getting around on her belly the last two months or so, but what she was doing was pulling herself along with just her arms, today i saw her actually lift her whole body up into a crawl position. She gets tired from it fairly easily though, so i wonder if her strength might be less than it would be if she didn't have liver disease. She also loves to be up on her feet. She is always pulling herself up to a standing position on anything she can get her hands on. On May 27th we'll be getting a kindney ultrasound done and seeing her kidney doctor Dr; Durkee. As you may remember they noticed while she was inutero that her kidneys were echogenic. This is a condition which generally resolves itself. It hasn't shown itself to be a problem for havalah and she has had full normal kidney function, but it hasn't resolved itself as quickly as normal, so they continue to monitor it. At this point it's not something I am concerned about. Ironically before we had her I kept telling people there was something wrong with her liver, when what I meant was her kidneys, I ended up being correct. We see her liver doctor Dr. Tolega on June 1st, and we'll have labs done then as well. We'll also find out if she's growing. We've added a supplement to her bottles, and i've started pumping once a day so she can get more by the bottle. The last time she was weighed was April 20th. She was 15 lbs 2 oz and 28 inches long. I hope that by june 1st she is at least 16 lbs. She eats a lot, but because of her liver she can't absorb fat very well. For the most part it seems like Havalah is doing pretty well considering.
We've had a lot going on with fundraising and as i'msure you've seen, we're up to over half our goal. When I say goal, I mean the goal COTA set for us. I hope we won't need that much at all. Allready we've far surpassed what i thought we might raise. The silent auction/dance in green bay last weekend went very well. It was amzing how much support we received from family, friends and the local community. Channel five news was very good to us, we were on at 5,6, and 10 and two newscasters Erin Davisson and Tom Zalaski came to our event to help.
We also had a great time the next day selling concessions to raise money for Havalah at the cycle city event.
Here in Milwaukee we're really just getting started. We're selling candy bars and we have at least 4 events planned for this summer. the first one is a community rummage/bake sale which is coming up quick. Right now my living room is filled with garbage bags of clothes and boxes of housewares and misc stuff neighbors have donated.
It's a little overwhelming!
Otherwise nothing is new with Steve and I. I've been sick since i got back from green bay, but am starting to feel better. Luckily neither Steve nor Havalah caught whatever I have. I'll try and be more conscienteous about keeping this up to date. we certainly want to get everyone used to reading it, so that when transplant time comes everyone will know where to look for information.
thank you to everyone who has donated their time and money helping us fundraise. And thank you to those who have signed our guestbook, it's fun for us to see who's been here
Kristen |
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