Tuesday, October 20, 2009

Message from Andrea - October 19, 2009

Ducks, chickens and RBCs
Posted 17 hours ago
So glad we went to CHOC today for Julian's monthly IV infusion of an antibiotic because every time we go to a clinic or infusion appointment his blood is drawn and we immediately find out more about his current condition. Today we learned that his white blood cell count is very low right now, and so is his red blood cell count. So, he'll be receiving a transfusion of hemoglobin tomorrow morning. On Thursday, he'll have labs drawn again during his scheduled clinic appointment. Hopefully they'll show that his WBC and RBC counts are creeping up. He loves to go on outings to Fresh and Easy and to the library, but we'll have to limit our trips right now to the backyard or maybe to the nearby duck farm to feed the chickens (no sign of ducks lately). He's been doing so well lately, except for tiredness which can be explained by his low RBC. His hair is starting to grow back again (it's in the 'fuzz' state) and he is doing more and more of the things he used to do. Even the vroom vroom sound effects he makes when playing with cars and Legos have come back. He has really enjoyed the late afternoons on the driveway, riding his trike while Nolan and our neighbor friends Maya and Lilly ride their scooters. It's amazing how gentle the kids are around him. He has some trouble with his emotions and can't keep up with the kids physically which causes the tears to flow, but the kids will slow down and, at least for now, let him win when they play a quick round of hide n seek or red light/green light. No word yet on when the next MRI is scheduled, it should be done within the next four weeks, and he'll have another audiogram before his next round of chemo to see how his hearing is compared to his last test. I don't really notice it getting any worse, so hopefully that will be good news. One spooky thing: Julian wants to be a skeleton for Halloween. We were really glad when, for the longest time, he said he would be a duckie for Halloween. But now he wants to scare those same sweet girls who play with him so nicely. But he promises that next year he will definitely be a fuzzy yellow duckie.

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