Day +40

not eventful. i fasted. then i ate and watched dancing with the stars. tomorrow we get ivig at 8:30 am so we have to be up early and max isn't even a little bit sleepy. ugh. better than him being sick so i'll take not sleeping.

Day +39

Daddy went back home to louisville today. we spent the entire day skyping and playing with max. max is getting pretty good at standing while holding on to the crib rail and he's excited about the new view. nothing else to report here, im going to try to fast for yom kipur this year. i attached pictures.

Day +38

yesterday's engraftment results were 100% again!!! that means that all of the white blood cells coming in are the donor's. yay!!!!! we love good news. daddy is here for the weekend so we're having a good time together. i also have my laptop back so i'll post some pics soon of max's adorable and fat steroid face.

Day +36

Everything is going ok and nothing too exciting is going on. we like it this way and are happily waiting for our cells to keep growing. today we went to the clinic in the morning at 9:30, which was way to early for both max and myself. it messed up our whole day and we had to spend hours and hours sleeping it off and recuperating. we aren't morning people.
here are our numbers for today:
wbc: 4.5
hgb:9.5
platelets: 120
anc:3.67

this is all very good. we ate sweet peas again and max's poop hardened into adult smelly poop so it isn't as much of a pleasure to change his pants anymore. the speech therapist stopped by and gave max some puffy fast dissolving cereal to try but he didn't really go for it. tomorrow we'll have the results for our third engraftment, but so far we've been 100% and i hope it stays that way forever. ok time for grey's anatomy!

Day +32

My computer stopped working. It has been awful, because we moved to Ronald Mcdonald house on tuesday (Which is awesome, but scary) and the internet in our room won't work until maybe tomorrow, and the internet in the lobby is super super super slow. so when i had the good news on tuesday that we were leaving, i couldn't even post it! Not that i would have had the energy to really write a lot, because moving was exhausting! I can't believe how much we have acquired over the last two months, partly because i stocked up on diapers and clorox wipes. It is very clean and nice here, it's hard to believe that the house is a non profit. I'm absolutely amazed at how much people give, both time and money.
Max has had a runny nose and is very congested. He had a cough over last weekend but that went away. The only real problem is that he isn't able to eat as much, because he is so congested and can't breathe well through his nose. So instead of milk, I have been giving more solid foods like rice cereal (mixed with milk), sweet potatoes, sweet peas, squash, and green beans. He LOVES sitting in his bumbo seat, and eating from a spoon.
Otherwise, Max is still doing ok. He is still 100% donor cells and his white blood cell count keeps rising. Also, he is making his own platelets and his own red blood cells so we haven't needed to get any.
Roman came this weekend and we finally got to spend the entire weekend as a family in a very homelike setting. I also got to use the internet freely, yay!!!

Also, did i mention the dinners here? They're delicious and we're about to go have some now!

Day +24

In the last update, I mentioned that I would like for the white blood cell counts to go up faster. The next morning, yesterday, I woke up to the news that our wbc went up from 1.6 to 13.6!!! Our ANC was 11.7, but our monocytes fell to 13. Awesome!

Since the wbc and anc went up so much they stopped the gcsf (the drug that was stimulating max's cells to come in faster), and today the counts look a little more normal.

wbc: 5.9
hgb: 8.9
platelet: 83
monocyte: 10
anc: 5.19

great news!

also, yesterday, max (FINALLY) rolled over onto his tummy for the frst time on his own!!! of course he had no intention of ending up on his stomach, he was only curious to find out where the roll was going. as soon as he realized where he was, he started crying.

Day +22

Today we're 7 months old!!!!!!!! I can't believe how fast time flies!

So the last few days have been pretty good. our white blood cell counts are pretty good, they've been around 1.5 for the last couple of days and our neutrophil (anc) has been at 1.12. I'd like for them to go up faster, but it is what it is, and it isn't bad for sure.

ps. good news:

we're 100% engrafted!!!!!!!!!!!!!!!

our tests came back early (we were expecting them tomorrow evening) and dr. davies came in around 6 pm and delivered the good news. :)

Day +18 and Day +19

Day +18

WBC: 2.0
HGB: 9.1
PLATELET: 28
MONOCYTES: 15
ANC: 1.64

Day +19

WBC: 3.5
HGB: 9.4
PLATELET: 37
MONOCYTES: 23
ANC: 2.66

Good news these last few days for Mr. Max and family, I hope it continues. They'll draw the labs to test for engraftment tomorrow. Hopefully the results are good.

Day +17

Today has only just begun, but I'm too excited not to post these!

WBC: .8
HGB: 9.3
Platelet: 29
MONOCYTE: 39
ABSOLUTE NEUTROPHIL (ANC): .42

The doctors said that when ANC is between .5 and 1.0 they can test for engraftment, but its labor day weekend so they'll probably send the blood on Tuesday if everything continues to go well. Also, we have to wait longer to get the results because our donor is a male. Still, so far today has gone pretty well!

P.S. Max now is back to eating 6-7 ozs. every 4 hours due to my torturing him yesterday and letting him go hungry after he started whining 2-3 hours after eating. as soon as he's eating normally again, im going to start working on sleeping through the night!

Day +16

We got a few cells!!!!

WBC: .2
HGB: 8.6
Platelet: 19
Monocyte: 29
ANC: .06

YAY!!!!

after writing this good news, i feel bad complaining that i barely slept all night. max woke up literally every two hours and ate 2 ounces. i was so mad! i took it out on my poor husband in the morning and im sorry but i had to. rice cereal is going better, i can already begin to imagine the day when i can stop pumping!

Day +15

ok, im sorry for the pathetic lack of updates. i've never been able to keep a diary either, and that's because im way too lazy to consistently write in it. so i'm sorry, and i'll try to do better. the last 10 days have been fairly boring except for yesterday and today. but i'll go in chronological order with the help of my lab printouts.

Day +6

we got red blood cells because our hemoglobin was low. no big deal, max turned pretty red and one of his feet swelled aprox. 3 hrs. after the infusion. three nurses and the doctor looked at it and decided to give benedryl and see if it helps. it did and we went to sleep.

Day +9

our platelets were at 8 so we got an infusion today. again, no biggie. grandma and grandpa drove all the way from rochester today to visit us! i went to louisville for a mini vacation with roman. we went to the kentucky state fair for the first and hopefully the last time on saturday. we had a delicious fried snickers bar and that made the whole thing worth it.

also on saturday (Day +10) our wbc finally went to 0.00, yay!!!!! max started losing hair too.

Day +11 max continued to lose hair.

Day +13 we needed more platelets

Day +14

RICE CEREAL!!!! it was hilarious! max kept pushing it out with his tongue and getting it all over his shirt. i think he didn't like it. pictures are above.

Day +15

WE HAVE MONOCYTES!!!

WBC: .1

HGB: 8.7

PLATELET: 24

MONOCYTES: 50!!!! these are the baby wbc's that we're looking for.

ANC: .05

also, our eating has gone up to almost 30 ozs. per day!

YAY!