It has been a long time since I've posted anything. I have been so busy living the day-to-day, not to mention this winter has been HORRIBLE, that I really haven't had much to post about. Carson has missed a lot of school due to the weather. It always seems to hit early in the week and since school is on Mondays, they cancel.
So a few things that HAVE happened are this:
Carson was denied SSI disability because we had too much money in our bank account. It wasn't really a surprise since we had refinanced the house and had borrowed against the equity but at the same time it sucked because we knew that the only way for him to be eligible was if we spent the money. Since I'm not working anymore we were trying to hold onto it as long as we could in case the furnace broke or something. The major thing that burned me up was that we decided to pay off Baylee's orthodontist bill in full and once the payment posted to the account we turned in the signed paperwork telling SSI they could check our bank records but they didn't. By that point they had already denied him and we didn't know it. So now I have appealed the claim and the woman I have to work with is the most bitter person that I have probably ever dealt with on the phone. I'm trying to cut her some slack since I know that her glamorous job probably has people bitching her out all day but I spoke to her at 9 o'clock in the morning and she was so unpleasant it was sad.
We have also applied for BCMH for Carson. I think I have mentioned this program before. It is something like Medicaid for children with medical handicaps. Hopefully it will cover his hospital bills since they usually cover up to a 5 day stay in the hospital, even if it's the ICU. That bill was $36,000 before insurance! The ambulance ride cost more than the ER visit did!!
This past Wednesday I took Carson to school to have a special 'group therapy' session with Amber's morning pre-school class. I was a little worried since the last one we had gone to was a total nightmare. The therapist had brought in one of those colorful parachutes for the kids to play with/under/etc. and Carson was terrified by it. He sat in the corner most of the time as far away from it as he could possibly get. This time it was so different. He actually sat on the rug when the kids were instructed to do so. The kids were throwing balls back and forth to each other (Amber had Carson in her lap the whole time) and then they worked with hula hoops and bending and contorting with them. He genuinely had a good time. It was nice to see him playing with other kids. It was a first for him. She comes every other week and since we are on spring break this week it won't seem so long until he gets to go again.
Regular school has been interesting. They have been doing testing with him so that they can fill out his exit evaluation and write his IEP for kindergarten. I am anxiously awaiting the results of these tests to see what to do about school next year. I already bought part of the curriculum I am planning on using next year but I still need to know how far 'behind' he his before I figure out anything else. I did find out that I don't petition the school district that he is in for him to be home schooled. I actually have to petition the county. I think as long as I can prove that I have a HS diploma they can't deny me so at least at this point that is working to my advantage. Plus my little sister is almost finished with her first year of college to become a special education teacher. She transferred from Hanover College to Miami (Ohio) University because it's closer to home and they have the courses she needs to take so I will have all her input too as I work through this.
These past few months at home with just me and Carson home together I have focused all my time and energy on him. It was a hard adjustment going from working full-time to staying home and I have to admit that I wasn't watching what I was eating and I have gained a few (or more lol) pounds. I can honestly say that I have been depressed and have engulfed myself with taking care of Carson and his diabetes, which is a full-time job in itself, but also with him having to be watched 24/7 so he's not eating electrical cords or messing with things on the counter tops or the stove. Frankly it's exhausting. I'm still up late nights if he has had insulin later in the evening because I have to check him 3 hours after he gets it to make sure he isn't low and I have found that it's easier to just stay awake rather than go to sleep and then fight to wake up. Then I'm up early to get B on the bus. Some days Carson stays asleep and I can go back to bed and other days I'm not so lucky. Plus the time changed KILLED me. I have no idea why but it seriously took 2 weeks for me to get used to it. Mike looked at me about 3 weeks ago and nicely told me that it's time to do something about the extra weight. He told me he wants me 'healthy' enough so that I can live a long time to take care of Carson. At first I was offended. But he's right. So I decided to start taking time for myself. I am now rotating between running on the treadmill and doing Zumba in the comfort of my living room.
Right now I am running about 10-15 miles a week in the evenings and during the off days for running I do Zumba with one rest day. I don't see a difference with my body yet but mentally I feel so much better. I stream Netflix on my iPad and watch The Walking Dead while I'm running. I can usually do 1 episode per run. It's really motivating and it helps me clear my head, if only for 46 minutes at a time.
I think so far the hardest thing about Carson's diabetes has been knowing that there is only one person who's actions control whether he loses his eyesight, or kidneys, or feet. It's me. I am the only one taking care of his diabetes. Mike doesn't do sugar checks or give insulin. I have done it every time since we have been home from the hospital. I plan my grocery trips, runs etc all based on when I give him his insulin. If I give it to him at noon I know I have to be home by 3 to check him. Sometimes earlier if he was given a larger dose of insulin because sometimes it's too much and he is low by the time I get back. That happened one time here recently and won't happen again. I came in the house to find Carson handing me a tub of yogurt. I told him I needed to check him first before he could have it and Mike told me he had been trying to give it to him for at least a half an hour. When I asked if he had checked him he said no because it wasn't time. When I checked him right then his blood sugar was 29!!! It's not supposed to be below 80!! I was pissed. Being a diabetic himself I figured he would get the fact that Carson was being persistent about the yogurt but he didn't. I hate to say it but now I don't trust Mike. Him having blood sugar issues of his own just makes it that much harder because if he is low how is he supposed to take care of both of them? It's a scary thought.
Anyway. Enough for now. I should probably try to get some sleep.
Hopefully I'll remember to keep this updated more often.
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