Wednesday, January 23, 2008

MMF Added and Trip to Utah

WBC - 15.2
Hemoglobin - 14.0
Platelets - 307
Weight - 30 lbs
Height - 35 inches
Lym, ABS - 1.55
His labs look great.

He had IVIG and Zenopax today without incidence. But it's not a good day. His skin GVHD has been flarring up so Dr. Argawal wants to add MMF (mycophenolate mofetil a.k.a. Cellcept) which is another t-cell immunosuppressant. I'm going to need God through this. MMF was removed in March 2006 because Dr. Dvorak did not think it was working. The idea is for the MMF to suppress the t-cells (which are attacking his skin) so that the GVHD will get under control then they will start to reduce the steroids. We really need him off the steroids. The GVHD support group has been very helpful and supportive.

On the way home from Stanford David took a long nap. He woke up at 8pm, then stayed awake until midnight. I could not keep my eyes open one more minute. I dosed off then woke up to find that he cut open eight bean bags and dumped the rice on the floor. Yawn! Clean it in the morning. Then this morning while in the bath he dumped cups of water on the floor! Of course, just as I'm rushing around to accomplish other things.

Then he made me giggle. The MMF needs to be mixed with milk but still has an aftertaste. He asked for a regular "milk chaser!"

We drove to Utah for a church event and went skiing in Park City. It was our intention to leave David in childcare. We arrived to find the childcare closed! We had to take him with us. It was such a huge blessing. He cried to go skiing. Once we got him on the skis it was fun all around! He loved the "rides" a.k.a. ski lifts. I figured out a way to ski with him near my side while he held onto my poles. It was the first time skiing for the girls and they had a blast! The excitement did not stop there. On our way home we hit a snow storm and did a 360 and recovered nicely. It was a memorable trip and we are happy to be home in California.

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