Updates on Havalah

By: Kristennn Date/Time: 8/7/2004 11:36:42 PM Update: Well we have some news for once although nothing HUGE yet. Havalah has been having poor weight gain for the last several months she has been gaining only about an ounce a week, so she keeps slipping farther and farther off of the growth chart. She finally hit the 30% *below* the chart mark which meant two things for her. One, it meant her PELD number went up to 19, which could potentially result in us getting the call in the near future, and it also meant havalah getting an NG feeding tube. For those of you unfamiliar with that it is basically a small tube going down her nose and into her belly. It is taped to the side of ehr face and then we pin the excess behind her to her clothes during the day and at night she gets hooked up to a pump and gets extra formula. we are working up to 24 ounces overnight. That is a lot of progestemil and duocal which we are working hard to get covered by someone, our insurnace so far says no, but we'll appeal that and we also are going to re-apply for Katie Beckett which is a route into medicaid, wyhich would then act as supplemental insurance. Anyhow Havalah hates the feeding tube and has pulled it out allready several times, but i think she is getting used to it, and it will be worth it if we can get her to put ohn some weight. her chances of successfully getting through major surgery (transplant) are increased if she is not so underweight. we're only on our fourth night doing tube feedings so hopefully we will all adjust and it will become just another part of our normal routine. In fundraising news we are just about at 75,000.00 and we are thrilled with that number. that measn we will get a 7500.00 COTA match at the end of the year, so really we'll be well over 80,000.00 We're done with most of our big events but we'll still have some smaller things happening. in general we're all feeling a bit burnt out from fundraising. Steve and I need to get back to our normal home things we've been neglecting, and just in general spend more time enjoying our beautiful daughter. We'll be updating the fundraising page soon so everyone can see exactly what we made on each event. we're also using money havalah got from her birthday to set up a little play area for her in the area between our living room and my office space, we're getting soem shelves and bins for her toys, and a table and chairs set from IKEA. I'll take photos after it is all set up! -Kristen   By: Kristen Date/Time: 8/22/2004 10:41:02 PM Update: August 22 We're still working on adjusting to life with the feeding tube. Havalah has pulled it out several times allready. The nurses at children's showed us how to put it in and check for correct placement so we've been putting it back in ourselves. She hates it! She screams and tried to push it away with her hands and moves her head from side to side, so it's hard but the alternative is driving to children's or having the home nursing company come out each time it needs to be put back in, and then it would be just as miserable for her. Another issue is that the pump is a piece of crap! it only works about 40% of the time and the rest we get weird "errors" the healthcare company has not been of much help trouble shooting, and what they suggested was that we remove it from the pump and let it freeflow, which sometimes results in Havalah getting too much too fast and then she ends of throwing it up. All of these issues are nothing out of the ordinary when dealing with feeding tubes and are pretty much to be expected. The good news is that in the first two weeks of night feedings she gained over a pound! her weight as of august 17th is 17 pounds 5.8 ounces! That still doesn't put her ont he growth chart for her age but it's a lot closer. her recent labs were also a bit improoved her bili is 10.3 total 4.9 conjugated alt is 77 and ast is 144, albumin is 4.2 and her PT is 13.8 Due to slightly better labs and mostly because of her weight gain her PELD number is going to go down to 10 next week when they have to rescore her. This means she is doing better healthwise but it makes it less likely she will get her new liver soon. There is no "magic number" but we are told our chances are higher when her PELD is 15 or greater. But you never know! We thought it might be happening soon, but this just gives her more time to grow bigger before she has surgery, and her recovery is likely to go better if she is not underweight. So hopefully she will continue to gain and maybe soon we will have a normal sized baby! In non healthcare related news we have started setting up a really cute play area for havalah. We got a great table and chair from ikea and some low shelving. Havalah loves to crawl over to the shelves and pull everything down. her new favorite thing is to sort and stack and put smaller objects inside of bigger ones. She has alos started wanting everything out of reach and will point and cry and get very frusterated if we don't give her whatever object she is fixated on. We look forward to her learning to talk since sometimes it is hard to figure out what she so desperately wants.

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