Monday, May 26, 2008

Avery & The Red Cheeks

Avery has come down with Fifth's Disease, maybe. I took her to immediate care today because her slightly pink cheeks (as it started on Saturday evening) have turned into bright red shiny flaming red cheeks, little red dots all over her body and a hellacious diaper rash. The doctor today was really wishy-washy. I had to ask him to look in her throat and then he started to look at her ears, again. Duh. He didn't make me feel real confident in his diagnosis - oh, that's right we walked out without a diagnosis! He gave her a script for Zyrtec in case she's uncomfortable or in case its some type of allergic reaction and Nystatin for her bum. She's crabby, but has not run a fever at all. These pictures do not show how red her cheeks are; they're really quite bad. Her milk wean did not go well so she's back on Neocate, so we wonder if there are some problems there. We'll see how tonight goes and how she looks in the morning.
After writing such a wonderful post on Shelby her labs came back not so great. Nothing urgent, but concerning. I told the nurse that it was o.k. if they didn't get back to me until this week about the game plan. Let's just pray that they improve soon on their own.

Please hold Annika and her family and the Gesner family in your prayers. They sure need them.

Wednesday, May 21, 2008

The rest of the update

Liver clinic went so incredibly well. They (Drs. Whitington & Superina) are very, very impressed at how slow her liver disease is progressing and how smart, strong and generally just WELL that she is doing. She is growing by leaps and bounds (seriously, like 2 lbs. and 1 1/2 inches over the past 2 months). Yes, she has cirrhosis, a large spleen, obvious portal hypertension and that damn cyst, but she is doing great. They said come back in 1 YEAR!!! If Dr. Whitington had to estimate now when she would need her transplant, he thinks between ages 10 and 12! Wow! We are so thankful!

Mommy got her IKEA (quick) fix in on the way home and the 5 of us were very happy to be reunited last evening. Thanks to Grandmas Linnea & Coralee for splitting the Riley & Avery watching. Eight hours of clinics is no place for 3 little girls to hang out! Taking high-spirited Shelby is a handful enough!

By the way, Riley & Shelby have had head lice now for over a week. Today Grandma Coralee put a prescribed lice treatment on their head while I was at a meeting for work. I've sent them outside to play because their little heads stink so much. I can't wait for 6:30 tonight when it can be washed out. I'm not even reading up on this stuff because I know its bad, bad, but we can't seem to shake them with the regular treatments. I'm about ready to shave their heads! Let's hope this does the trick! I am sick of washing everything in hot water, vacuuming up a storm and picking nits out of their hair! GO AWAY LICE!!!

Please, as always, keep Shelby in your prayers. Let's keep her lifted up to God for continued good, stable health. Thank you so much.

Tuesday, May 20, 2008

Clinic Day

These pictures aren't too bad considering I took them from my web cam with a wiggly 6-year-old it was trying to focus on. Last night we came into Chicago for Cardiology and Hepatology clinic. We started at 8:30 a.m. with an EKG, then a full Echo and are now waiting to see the doctor. It is Noon.........Grrrrrr....Then we have 1:45 liver clinic that, I'm sure, promises to be just as long. We get great (but slow) care here, though. Shelby is being evaluated by Cardiology for Hepatopulmonary Syndrome and Pulmonary Hypertention.......Just saw the Cardiologist at 12:30. All looks perfect w/her ticker! No worries there unless we see a decline in liver function. We are to see her again in 2 years.

We had lunch at the cafeteria. Shelby likes it b/c they have chocolate SoyMilk - she's now on a lactose-free diet to try to help w/her tummy pain. So far, so good. Now we are in liver clinic waiting to be seen. Our appointment time was 1:45; it is now 2:47 and no one has seen her yet. We wait again....

Please pray for our friend Annika. She is currently inpatient here as she had a major bleed yesterday and was transported by ambulance here from Bloomington/Normal. I saw her this morning and she looks pretty good, but will be here for a while as the doctors try to figure out what's going on.

**Shelby is on a lactose-free diet and Avery is back to a milk-free diet. The milk challenge didn't go so well. She is now on Neocate Jr. She likes it, but it stinks up our kitchen!**