Updates on Havalah

By: Kristen Date/Time: 6/13/2004 4:43:06 PM Update: Since I posted last we have seen Havalah's kidney doctor (dr. Durkee), her liver doctor (dr. Tolega) and had labs done again. When we saw her kidney doctor we also had a renal ultrasound done, and it showed good news. One of her kidneys has progressed to the point of being normal now, and the other one has continued to move in the right direction. So far she has had completely normal kidney functions and no bladder infections so most likely it is nothing to be concerned about it. We saw Dr. Tolega on June 1st. they continue to be concerned about her lack of growth but it is not unexpected, otherwise things seem to be about the same. they checked her oxygen saturation rate to be sure it was not something she was having a problem with and it was 100% which is perfect. Her labs were as follows : bili 12.1 total, 5.6 direct AST is 213, ALT is 97, PT is 14.4, asnd cholesterol is still very high at 401. Everything else including albumin and alkaline phosphatase continue to be normal. I asked the doctor more about her ALT and AST as they had came down a decent amoutn from last time, but they continue to go up and down (but always high) and he explained them a bit further to me. They show how much liver damage is being done currently. So on the day she had her labs this month less damage was currently being done then last month when they numbers were higher. They do not reflect how much damage has been done progressively. Her bilirubin was about the same as it has been the last few months, and her PT was just a bit higher, but it could be because we had just ran out of vitamin K. Her PELD number was reevaluated at that time and it remains at 13. She can keep that number for three months unless her labs would get worse, if they did they would reevaluate again so the number would go up. She also has a bit of a cold which isn't unexpected since Steve has been sick for the last week. I am concerned about how it will be post transplant when she is immune suppressed, with Steve and I getting sick so often, it is likely we will pass everything along to her, and it will be much more difficult for her body to fight it. In good news our nurse coordinator Stacee had her baby, I think on may 31st. they had a little boy and named him keegan. She had him about 3 weeks early, but from what I have heard they are both doing well. Stacee is the one who coordinates all of havalah's healthcare needs and calls us with lab results and to explain numbers to us etc. She has been a great asset. In fundrasisng news we had our rummage sale her in milwaukee last weekend and it went really well. We raised 2818.00! Thank you so much to everyone who helped and to our friends and neighbors who donated items for us to sell. We had a lot of people donate extra money to Havalah as well. Yesterday in green bay they had a fundraising rummage sale, and i hear they raised approx 2300.00 but I haven't gotten an exact total. Our friends and fmaily in green bay have worked so hard on so many different events, we really greatly appreciate everything they have done for us. Steve and i are working today on updating some of the website stuff. So far we have added photos of havalah at 10 months and our photos from the May 14th dance/auction in green bay. We'll also be working on updating fundraising events, letting you know how much we raised on specific events and providing updates on events in progress. Thank you for visiting our website! Kristen   By: Steve Date/Time: 6/28/2004 7:14:07 PM Update:   By: Kristen Date/Time: 6/30/2004 12:48:36 AM Update: Well Havalah is one now! She had a great birthday party in green bay. She got a lot of really nice presents and had a good time smashing her cake. We just added the photos to the website. We saw Havalah's liver doctor Dr. Tolega this week and had labs done. Most of ehr numbers went down a little bit which is good. It wasn't a significant drop but i'm just happy they're not consistantly going up. Her bili is 10.2 total 4.5 direct. AST is 160, ALT is 76 GGT is 259 PT is 14.0 cholesterol is still sky high at 404, and her albumin and alkaline phosophatase continue to be normal. I know these numbers don't mean anything to most of you, but I know there's a few people that read this that know they all mean. Havalah is really moving around like crazy. Crawling all over, pulling herself up on anything she can find and walking around furntiure. She continues to be in good spirits. We've been really busy working on fundraising, we have a lot of events happening in July. A crazy amount actually. I'll be relieved when this month is over with, hopefully we'll manaage to pull it off. We were interviewed by Jesse from WTMJ-4 today and they'll be showing the interview next tuesday the 6th at 4 or so. Also I talked to Dr. Tolega about immunizations and he gave us permission for Havalah to get the chickenpox vaccine. If she should get her transplant in the next month thereis a slight increased risk because of the vaccine, but if she didn't have it, it would be a concern post transplant if she was exposed, it could be potentially very serious. So we got the vaccine today and I'm glad we were able to. That's about it, just busy busy taking care of havalah and working on fundraising. Hope everyone else is doing well. -Kristen

[Add Update]