Xander is still having a tough time. He still has some diarrhea and overall isn't feeling well. Why should he when his hemoglobin is only 8gm/dl (norm: 11-13gm/dl). As a result, he's sleeping a lot which isn't like my little guy.
His EBV levels skyrocketed again. Michelle, Xander's most awesome transplant coordinator, is sending orders for cytogam infusions. This will help Xander's immune system fight EBV and ultimately make him feel better. I'm hoping Xander will get to feeling so good he'll kick EBV in the ass! haha
Today we went to see a GI here in St. Petersburg, Dr. Wilsey. He was the GI who initially diagnosed Xander with Biliary Atresia when he was just three weeks old. We literally have not seen him since. I took Xander straight to Hopkins once he gave us the diagnosis. He is going to monitor Xander's nutritional health down here. Xander is still struggling to grow and, I think, has some vitamin deficiency issues. Hopefully Dr. Wilsey can identify what exactly is going on and we can get Xander on the right nutritional path.
Linc is doing great through all of this. He is such a trooper. He goes too all the appt's and behaves so good. I can focus on what the doc is saying without have to worry about him. He knows when the doctor comes in it is time to be quiet. He deserves a medal. He really is a great kid.
I try to compensate and do as many fun things on the weekend so both kids can forget about boring old doc visits. We do Busch Gardens a lot, last weekend was a big Easter event at the local rec center, next weekend we're heading to see Thomas the Train...anything and everything. I'm cramming the fun in. I'm also trying to make up a little bit for the past two dreadful years. I want them to have a lot of fun and happy memories.
Keep baby Ezekiel in your prayers. He got the call on Easter Sunday and went in for his life-saving transplant at 1:40am last night, early Monday morning. The surgery went smoothly and now it's time to wait and see how his body will adapt to his new liver. Praying for a quick recovery!
1 comment:
I am keeping Xander is my prayers...ALWAYS! Praying the infusions will definetly kick EBV to kingdom come!
I truly understand what you mean overcompinsating....so my life story!
Hang in there and know we are thinking and praying for you guys.
Hugs,
Jennifer & Brooke
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