Day +71

We've had a very crazy week this week. On Monday I asked to draw the labs instead of waiting until Tuesday so that by Friday (tomorrow) we'd have the engraftment results and be able to make some decisions. I mentioned to the nurse that when I flush Max's left side C-line, he cries. So we decided to try it out and as she pushed the heparin in, Max's left side where the line was inserted swelled up immediately. We went to get an ultrasound of Max's left line and found out that it was completely clotted and needed to be taken out. Luckily, Max can get by now with just one line since his cyclosporine is now given orally, hopefully it stays this way. So when we came back Tuesday for our IVIG, we had to be admitted into the hospital so that the surgery could happen sooner rather than later. So we stayed over night and we couldn't let Max eat from midnight just in case he would get surgery Wednesday morning. Max and I ended up not eating for 16 hrs. and we were very disappointed that it took so long to fit us in. Finally, though we got one line out and made it back to RMH by 6 pm, just in time for dinner. Of course though the blood from his removed C-line site leaked onto his dressing for his right C-line, so I had to change his dressing again later.
Today we had a pretty good day and my parents finally came to hang out with us for a couple of days and brought with them a playmat. Hopefully Max will start crawling soon. Our engraftment results came back today and they are still at 97%, and I'm still worried although maybe I shouldn't be. Tomorrow hopefully we'll be finished with our steroids, but we'll see.

Day +68

enjoy!

Day +65

Good and bad news today. The good news is that Max is feeling well and his steroid dose was lowered again. Also, his cyclosporine will no longer be given through IV, but orally and his blood pressure med will only be given at night. Also his white blood cells went back up to 4.1 and the rest of his counts are good too. This is all great. Here's the bad news - Max's engraftment went down to 97% this week. Scary. I've seen such patterns and I'm afraid that Max's engraftment will plummet and we will have a tough time getting it back. This sucks because I was just beginning to hope that we could get through this without any major complications and 100% engraftment.

Day +62

Our white blood cell counts are in a slump ~ only 2.9 today!!! The doctors said not to worry, but of course, I'm worried. Anyways, the rest of our numbers are OK, although I don't remember what they are right now and I don't have today's print out. I just wanted to add some new pictures of Hairy Max. Maybe if he keeps growing hair like this, he'll be all set for Halloween as a werewolf or a monkey.

Day +61

Tomorrow we're going to be two months post transplant! I can't believe it has been that long already. Recently, there hasn't been much news, which is great! Max's counts were a little bit lower on Friday, but we are still 100% engrafted and Paula (our NP) said that wbc counts go up and down so we're hoping they'll go up tomorrow. Friday wbc was 5.3, so we just want to be back in the 6's tomorrow and I can be happy with that. Max's steroids were weaned again so now we only have 2mg once/day!!! I wish I could report that not taking steroids at night has helped Max sleep better, but I can't. Apparently, Max only sleeps through the night when Daddy is around and I guess I don't blame him. Also, Max is spending more and more time on his tummy these days. Ever since he learned to roll from his stomach to his back, he's been just hanging out and playing on his tummy. He even is making sort of crawling movements, and I'm not sure what we're looking for, but I think its time to acquire a nice large playmat. Maybe tomorrow I'll try and put up some new pictures. Hope everyone has a good quiet sleepy night.

Day +58

everything is ok here. Max was up every couple of hrs. for a snack of milk last night and i was exhausted all day. i even overslept and missed our 8am appt. luckily, we were able to just come in later. The down side to coming in at 9am instead of 8am is that you have to wait a long time to be seen, so we only got home at 11:30. On top of that, our hemoglobin count came in really low all of a sudden and so we had to go back to do another blood test. our hemoglobin is fine, but we did have to spend an extra couple of hrs. at the drs. So the whole day today has been off, and hopefully we'll sleep a good night tonight and have a better day tomorrow. Daddy is coming to see us so i might get some rest finally!

Day +50

Here we are at day +50!!! I can't believe we made it so far, and how far we still have to go. As I write this Max is sitting and playing in his crib. He's very cute and smiley this morning. We're still on our weird night schedule but at least we slept in until 11 this morning so I'm not too upset. Normal schedules are for losers anyway, haha. We are still having some poop issues and our gvh hasn't gotten much better or any worse so its ok.
our numbers from tuesday:
white blood cells: 6.4
hgb: 10.5
platelets: 238
anc: 5.2

all of these are in the normal range. we still don't have a normal immune system, but we're doing ok and im quite ok with that.

Day +45

just a quick update. max pooped again. it may be the prunes.

Day +45

We've had a really great last few days thanks to auntie lena's visit to our temporary home in cincy! Max really enjoyed playing with auntie lena and laying in bed with a nice girl on each side. Elena and I ate cupcakes, brownies, cookies, and drank coffee. We also played on facebook, odnoklassniki, and watched project runway. We did some arts & crafts and continued my mommies work on max's photo album. Sadly auntie lena had to leave this morning and go back to rochester. We hope to see her on skype soon.
Our big news for today is that max learned to roll over from his stomach to his back!!! He's so good at it now that i don't think we'll ever get another second of tummy time again! This must be thrilling for max as we all know how much he likes to be on his stomach.
The other thing that happened today is that max pooped! Max has been constipated for the last two days and today roman and i were getting really worried so i rubbed max's tummy until he started straining and straining and crying and finally he pushed out a little green chunk of poop! then another huge hard chunk came out. then, i held his legs up without the diaper and roman and i cheered for max as he pushed out 4 more hard green poops!!!! it was really exciting. later he pooped 2 more times, this time healthy looking green paste!!!!! yay.
max's counts are increasing steadily and he is 100% engrafted as of 9/29!!! Also, he has a little bit of a rash on his back, arms, and legs. The drs think that it may either be a mild case of graft vs. host coming on or just irritation from the little black hairs he's beginning to grow everywhere. either way, we're rubbing him with steroid cream and watching to make sure it doesn't get worse. hopefully it won't. we also didn't wean the steroid this week so we're going to have to deal with an extra week at least of restless nights and naps during the day. i can't really complain though, since its a small price to pay for his health.