Thursday, November 17, 2011

Thoughts and Places

These last couple days were tough. Yesterday marked 2 weeks since he died and it was harder than the 1 week mark. This time I had more questions. Wondering what, if anything, was he aware of that day. If we could've done anything differently. Thankfully I haven't thought of anything that could've been changed for the better. He was so very sick. I got his death certificate yesterday and there was 4 causes of death listed. Bone Marrow Transplant, Renal (kidney) failure, VOD (liver failure) and VRE bacteria. The VRE was his first problem. He got 105 fevers from it, but got rid of it. He stayed on those meds to prevent it from coming back and it did anyway for a very short time. The cultures had been negative, so I have no clue where they found the VRE during the autopsy, but they must've found it somewhere. I'm nervous to get the Autopsy results back. I've been advised not to read it myself, but to have someone summerize it for me.

My cold is thankfully much better today. I can breathe laying down and my head doesn't feel like exploding when I bend down to get something. I do still have a stress headache and other physical symptoms of stress, but not having the cold is a really good start.

I woke up this morning thinking about my planned meeting with Dawson's teacher. He starts school on Monday, so then I was wondering if the bus would come to our apartment or if we'd have to walk to the road, which is a fairly long walk to make with a child who doesn't like walking in the cold winter air, with a baby too. Then I realized that Tyler will never get to ride a school bus. He loved walking Dawson to the bus and coming with me to wait for the bus to get him after school. He'd get so excited and say "bus!". The first time he was bummed that he didn't get to follow Dawson onto the bus. He did get to ride the shuttle bus between RMH and the hospital though. That made me feel a little better. He grinned and went all the way to the back seat to sit.

The meeting with Dawson's teacher went well, she came to our place which was very nice. She plans to do a home visit once a month to chat about how Dawson is doing and play with him a bit there. There's only 6 kids in his class, so that will be a nice slow start for him. He used to get more anxious with more kids. She said he could go over to the regular preschool too if he gets to liking having more kids around. She also mentioned that in the Spring we'll start talking about Kindergarten. I still can't believe that's next year already! My child can't possibly be old enough yet, where does the time go? I look at him and I have no idea when he got so big. Doesn't help that I barely saw him the last 6 months. He's really gotten the short end of the stick during all this. Even with getting him into services, it's still hard because he's still being bounced around. He did Speech at Children's while we were there, but that was only about a month by the time it was his turn on the wait list. Then the Autism Center for 2 months. Feels like it was just enough time to get into it, meet nice people and leave.

I took him to a Psychologist yesterday. That didn't go well at all. I explained to her that I wanted some advice on how to deal with his aggressive behaviors that he's having. He's confused and hurting along with the rest of us, but he isn't able to express those feelings and often acts out with aggression. I told her I haven't been pushing the subject, but it's always open to talk about and I mention it now and then when I feel he looks like he needs to talk about it. He will sometimes admit he is sad, but wants to go no further with the conversation. I don't want to make anything worse. So she decides to ask him if he knows what happened to Tyler. If he knows where Tyler is. If he misses Tyler. All questions were frowned at and answered with "No", which is his "I'm not talking about it" answer. He went to the other side of the room, she followed. So he went under her desk instead. When he got out of there, she tried again and he went under the couch. Then he was bouncing on the couch and she tried sitting with him and tried pulling him down to her lap. Dawson doesn't like surprise hugs most of the time, he freaks out. He said no, let go and she didn't. So he tried to bite her. She stopped him and then he hit her and ran away again, only out of the room this time. So I had to go get him and thankfully that was pretty much the end of our session. I had been hoping for some advice. I told her that he wasn't going to talk. She just took notes on what I said and didn't have anything to suggest to me other than a referral to a Psychiatrist to put Dawson on meds to calm him down. What the heck?! He's a confused little boy, he needs to have patient people to help him work through his confusion and problems, not be drugged right away and then see if we can work on something.

I later found out that she's not even a Psychologist, but a nurse practicioner who makes referrals and listens to people. She just thought he was hyper and needed to be calmed down. She didn't notice that he was just trying to get away from her. She even grabbed the hood of his shirt once and pulled him backward. Then on our way out she said we could make an appt to see her again in 2 weeks if we want. I think not! Thankfully I have a few friends who recomended other people, so I'll be trying that instead. I think having him back in school will help as well, but I want to make sure all the bases are covered and that we're doing everything possible to make this better for him.

I did get some laundry done today, with Dawson's help. He loved having something to do, he got to put the quarters in and put the clothes in too. I also went through the flowers again. Over half of them are gone now. I'm sending some to a friend who's friend makes flower jewlery and wanted to do that for me. I also decided since Dawson has been feeling cooped up and so have I, that we should go to an ECFE class. I had called and got the info about the one we'd been going to in April that we were already signed up for and it was tonight from 6-8pm. It was high on my list of places I was afraid of going because of all the memories attached. It was one of Tyler's favorite places and we had so much fun there. It was hard being in the same classroom. I could almost hear his giggles as he'd run around the room. He would often come sit on my lap during parent time and I was almost waiting for him to come running over to me. The gym was the worst, remembering him sliding down the slide and jumping into the ball pit. I was starting to think I'm crazy for going but then as I watched Dawson play and interact with the songs they sang and played at the table with the other kids, he was having so much fun. He needed to get out and do something he enjoyed. Even Gabriel loved being there. Dawson finally looked relaxed and had a calmer day. He was even happy to head to bed.

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