Engraftment

15%. The DLI did nothing.

we've been having too much fun to update

So Max had his DLI a few weeks back on a Tuesday and we went on vacation to Rochester and had a great time. Max got ERT at Children's Hospital in Buffalo (it was great and the nurses were awesome) and since we had no orders to take an engraftment level, we kind of enjoyed a vacation away from that too. It was very nice, we LOVE vacation!!! Max's engraftment level went from 16% in the last update, to 17% and then down to 14% the day of the DLI, before any cells were given. Now that we're back in Louisville, Max had ERT here and they took an engraftment level which we can now worry about until Tuesday or Wednesday of next week. I really enjoyed not worrying and just having fun with Max, but life is good so I can worry a little too. Enjoy 2011 and a happy belated new year to all. I'll post some pictures next time, I promise.

After 13%, we got 14% and 16%. We were in Cincinnati today and spoke to Dr. D, we decided to try another DLI. One more big boost to see if maybe it may work. It's scheduled for this coming Tuesday, and I guess it's worth a try. Otherwise, no change. We also saw the hand Dr. C and he was just thrilled with how Max's hands look after the surgery!

13%, what to do, what to do?

Post surgery update

Engraftment back to 15% but we're still praying for a significant raise!
Max's surgery on Tuesday went really well, thank G-d, but everything just took a lot longer than was expected so we got home pretty late on Tuesday night. Max's central line was removed and instead he now has a port, so in a few days he will be able to take a bath and live happily without a stupid line hanging out of him. The port is like a central line, but entirely under the skin, when it is in use, an attachment is hooked into it and it works the same way. I'll post pictures to clarify this later. Here are some pictures from Tuesday. Enjoy!

Bandages Removed!

FINALLY!!!!! today Max's bandages were removed! Another surgery tomorrow, so please pray that it goes smoothly and successfully!

Hand Surgery

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Today was Max's hand surgery and it went pretty smoothly, thank G-d. Because he can't eat 8hrs. before surgery, we woke up at 4am to get a bottle of milk. Then, he had his last drink of apple juice at 8am so you can imagine he was rather hungry and so cranky as we got to the hospital at 11am today. Everything went smoothly and he went into surgery around 12:30 pm, right on time. The surgery took about 1.5 hrs. and the hand doctor came out to say that it went very well. In another 15 minutes I was holding my very cranky baby again and thanking G-d for returning him to me in good order. Max has a bandages on both hands that look like little boxing gloves and give him very little finger use. That so far hasn't stopped him from doing anything, except maybe taking off the hand dressings which is a good thing. Hopefully next week he can have them removed and until then, it's my job to keep them clean. I'm very happy to report that Max was still actively mischievous upon arrival at home and in a great mood. Just in case that changes and he has some hand pain, we have a prescription for Tylenol+Codeine for night time.
In other news, his engraftment is 17% this week.