Thursday, April 30, 2009

April 30, 2009 - Maintenance..Day ????

Nicholas is full of energy and gets smarter and trickier by the day. We have trouble keeping up with him. For that we remember to stop and thank God for, but at the end of the day we are exhausted. We remind ourselves that this is way better than the alternative and better than we could have imagined. We took him fishing with the other kids on Sunday and he had a blast. Below are a few of the pictures:


Can you tell what is different about the above picture?

With his little spongebob fishing pole, Nicholas caught the most fish. I guess he moves sporadically enough to make the bait look appetizing. He had a blast. Nicholas wants to be outside 24/7. He is such a boy..climbing everything and getting into evertyhing. There is no lying around inside in front of the TV for us.

April 2009

Once again, I have been neglectful in my posting about Nicholas. But, rest assured, that means things are going well. It means that we are home and not around nurses and doctors who can take care of him while I post. We are in our 2nd cycle of the first round of maintenance (cycle is 4 weeks and a round is 3 cycles or 12 weeks - This will repeat until Nov 2011). He should tolerate this very well - compared to what we have already been through, it is almost as if we are done treatment. Typically we only go to the clinic every two weeks, but last week we were there every other day. Nicholas's ANC number was low (ANC is a measurement of how well your body can fight infection) and his medication needed adjustment to bring this back up. He wasn't sick or anything, but you don't want this ANC number to be too low in case you should get something...such as swine flu. They were going to switch his broviac (tubes that go into his body so he doesn't constantly have to be pricked) to a port (a central ine that that goes under the skin and will allow swimming and tubs) last monday, but that got scrapped when his medications needed adjusting and so much lab work to see where he was with things. So this will probably get rescheduled for June 1 when he is due for his quarterly spinal treatment. At least that is early summer and should be good by real swimming time (although some neighbors already have their pools up and going). This was disappointing as dressing changes are not a pleasant time in this house. He can't stand it and I look forward to not having to flush the tubes on a daily basis either.