It's been a crazy week of appointments and no sleep. Tyler got his chemo on Monday and has been really fussy. We go to sleep between 6-8am lately, then Dawson wakes up around 9-10 most days. Sometimes earlier if Tyler wakes him up. Tyler is doing ok with his treatment, he starts weaning from his steroids on Monday, which will make him even fussier, but hopefully things will be a lot better once he's all done with those. Tomorrow is Tyler's 4th day of his home IV chemo, that went fast! He'll get labs on Monday, to avoid being bothered on Christmas. With this harsh chemo, the Dr says he wouldn't be surprised if Tyler's counts to way down pretty soon. The steroids help them stay up, so hopefully we'll have no issues until after that's done.
Dawson started his Early Intervention Evaluations last week.They called and set up 5 appointments within 2 weeks. This could really be streamlined a lot better, I've done a lot of repeating myself and 3 of the appointments were filling out forms and answering the same questions! The first day she just asked me questions about him and had me fill out questionnaires and sign permission forms. The 2nd time she asked me more questions, more forms and played with him a bit. Then a speech guy came and actually worked with him, but I had a similar form to the first one I did to fill out. He looked at books and played with him. Mom stayed with him for the appointment while I took Tyler to get his chemo, so I only saw about 15 minutes of it.
Today we got his hearing checked, it's standard procedure. He was more interested in figuring out how the sounds and lights in the hearing booth worked. When he looked at one of the 3 boxes, he'd get rewarded by lights on that box and there was a character inside that glowed. He wouldn't sit still, he pushed a chair up to the middle one and looked inside it. Then he was turning his head towards the other 2 boxes, so that worked out well. The lady was very nice, she showed him her remote and he pushed the buttons until he was satisfied with figuring out how it all worked. She said she's never seen anyone so interested in how that works before, they usually just watch it!
On January 4th we find out results. Though they say he shouldn't have a problem qualifying. I wanted to get this done at a year, but the Dr said to wait, then again at 15 months. The Dr was determined that Dawson was fine and he'd start talking any day now. But he averages maybe 1 word per month and usually we don't ever hear the word after he says it once. He's also behind with his social development, he won't pretend play or respond to requests like "bring me the ball". He also has some "stims" as they call them. He shakes his head back and forth a lot and won't stop until he's done. He also runs back and forth across the room with a different laugh. He spins things a lot, it stopped for a while but he's back at it. That used to be the only thing he did, but the Dr said it was a baby thing and he'd grow out of it, but he hasn't. The other things are more recent that he's started doing, which is why I went above the Dr and called Early Intervention myself.
He'll get home visits at least once a week from the school, then once he turns 3 he'll go to the school through ECSE (Early Childhood Special Education). He seems to respond really well to other people working with him. Just in the short time that I observed him with the speech guy, he was already pointing to pictures in books and was interested in what was on the page. Before that he'd just flip the pages, I try all the time to get him interested in pictures and he doesn't cooperate. Hopefully he'll do well with the schooling and will start using words.
In January, once Dawson is done with the evaluations, they'll start on Tyler. The teacher said he'll qualify just because of his diagnosis. Kids on chemo often fall behind in their development, though Tyler has stayed ahead of the game in that area so far. They'll keep an eye on him, and work with him too, depending on what I decide. They said I can ask for as little or as much help as I want pretty much. They could just assess him every couple months, or come work with him regularly. He really thrives on that attention, so I'm leaning towards having him worked with. Wouldn't hurt, it'll keep him active and they always have new toys and new ideas for him to think about. The chemo often leaves kids with learning disabilities, it makes things harder to process and they have difficulty learning new things. Just one of the many side effects. Hopefully he'll continue to do well and this won't be a problem.
We had planned on going to my parent's house for Christmas Eve, my Grandma's for Christmas Day and meeting up with Dan's parents on Saturday. Well my brother just got the flu, so Eve is canceled. I also got a letter from Dan's mom saying we shouldn't come since it'll snow and wants to get together later, like maybe March. Seems like a long ways away, past Tyler's birthday even! It's a bummer that the kids don't see them enough to get to know their other Grandparents. I'm thankful to have gotten to know both sets of my Grandparents, I really can't imagine never knowing them. Hopefully nothing will change for Christmas Day and we'll still get to spend time at my Grandma's house. Dawson really likes it there.
I'm excited to open presents with the family tomorrow! We have some gifts from Walgreens OptionCare for the boys that are wrapped so I saved them for Christmas too. They deliver Tyler's chemo and other medical supplies. We also got $200 worth of gift cards from them! I was shocked! They are for Coborns, Holiday and Walgreens. So awesome! I've loved getting cards in the mail this year, some have had gift cards so I'm looking forward to doing some more shopping after Christmas. We had one for Toys R Us so I thought maybe I could get something else to open on Christmas. I went there last night and drove right past it, they were packed! I guess when trying to avoid people and germs, you shouldn't think about going to Toys R Us 2 days before Christmas! Maybe they'll have some sales going on after Christmas. :)