Sunday, August 7, 2011

We're Home!

Thursday was Bingo night at RMH. I brought my laptop and a couple cars down for the boys to keep quiet with. We had supper and got all set up. Tyler has so many bruises on his head from the low platelets! It'll take a while for them to go away, he heals pretty slow these days.

Tyler didn't want to play during Bingo, he got fussy, nursed and then fell asleep. I put him in the stroller and he slept through it! We got a Blue's Clues bubble set, 2 games and some golden books. Gabriel slept through Bingo too, it was nice and peaceful!
Dan came down Thursday night so he could stay at RMH with Tyler Friday morning. I went to the Autism Center for Dawson's evaluation. It went really well, took about 90 minutes. He got impatient toward the end though, but was happy to be rewarded with a trip to the gym at the end while I stayed in the room to fill out some paperwork. Got back to RMH and had a couple hours to relax before heading back out to Tyler's appointment at Children's for labs. We spent just over an hour there, then went upstairs to return some toys. I had cleaned out Tyler's room before he was discharged, but some of the toys made their way back in and ended up in his toy bin! Once we got back to RMH, I cleaned and sorted out a bunch of stuff that had been just tossed onto the other bed after discharge and then I packed us all up to go home for the week. Dan made trips out to the van while I packed. It's so nice having help for once! I usually have to juggle the double stroller and a huge cart with our stuff on it.

Gabriel and Tyler were taking a nap, so I told Dawson to lay next to Tyler and he grinned and hopped up on the bed and layed down.
We got home and Tyler was having issues with our food supply. We had no green apples and were lacking some of the things he likes, so we went shopping in the morning. It's pretty rare to need all the diapers at once. The box of overnights last over a month, and Gabriel goes through diapers much faster than Dawson does. I rarely get to go shopping while I'm at the hospital. I go maybe once a month, or whenever I run out of diapers. I usually just get them whenever I'm at home since I never seem to have time to run to Target when I'm there. Those diapers sure add up fast. So does the big phone card we get for Dan's phone! He rarely uses it, but when I'm at the hospital he calls me everyday.
Tyler's appetite has really picked up since we got home! He was eating potato salad in the pic. He ate a whole package of cheese single slices, a whole 1 pound package of sliced ham, half a bag of green apples, 2 slices of pizza, a few pudding cups, some cookies and crackers. All in just 2 days! Normally we'd be happy if he ate that much within a couple weeks! He's really looking thin these days, so I'm really hoping this will help add some meat to his bones before the transplant. He's still not drinking very much, but I have discovered that he will drink if I just give him a small cup. He's doing pretty good drinking out of it himself too!
I've been working on cleaning all the toys. He has a low immune system now, but after transplant it will be much weaker. Some of these toys have been around for 4 years, and many of them were used, so who knows how long they've been played with. It was amazing to clean them and see the bright colors! The stuff with no batteries, stickers or holes went in the dishwasher. That didn't really leave much that could go in there, mostly the balls, legos and a few other toys. It helped though. The rest I did by hand with sanitizer wipes. I washed out a bin and then put all the clean toys in there. I now have 2 full bins, plus 2 bags of balls and a bag of legos that is done. They'll just go in storage until we get home after transplant. They still have plenty of other things to play with. I'm hoping by the end of the week to have most of the toys cleaned up.
We also bought a carpet/floor cleaner.
I finally got all the clothes sorted and put away too. I emptied Gabriel's dresser, which still had some newborn and 0-3 month clothes in it. I had just been bringing home the outgrown clothes in bags, so I had several sitting around waiting to be put away. It's nice to have all those in the closet now. I re-labeled all the plastic bins too. Dawson keeps taking my tape labels off them!

I also did dishes, laundry, cleaned the bathroom, sorted through the mail and some other papers and took out the garbage. I also started Dawson's binder that will have all his information on it. I had bought dividers with tabs. Now if someone needs something, I won't have to request it, I can just fax or make a copy of it and it'll all be easy to find. I have tabs for his IEP, Speech, OT, Psychologist, Neurologist, Autism Center and Development. I'm going to put his development charts in there once they're up to date. I have to work on that still too! It's been months since I've updated their charts. I'm going to make a binder for Tyler too. It's sometimes hard to know where to start when I get home! There's so much I want to do and suddenly the time I have at home doesn't seem like much at all! Most of the time I like doing fun stuff, but today was a casual day. They played, I worked. They went to bed pretty happy and tired too. Didn't put up a fight at all, I was pretty impressed!

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