Long Days

Sorry for the long delay between posts but I've been pretty tired. I am a bit surprised at how exhausting twenty four hour a day care for Dear Son is now that he is so much taller and larger overall. The Christmas break was two weeks long and was quite a bit to handle. During that time, he got backed up and once I realized it, I was able to increase his Miralax to "assist" him. It took a while but once it kicked in, I was one busy mother. I did nothing but bowel movement diaper changes for several days straight. I thought he was finished however it would take another week before he was back to normal. Luckily, I was able to avoid a hospital visit. It's pretty easy for these kids when they don't move around as much to get backed up. Dear Son is on Miralax all the time due to his motility issues that are related to his gene mutation.

Once he went back to school, there were more issues with seizures. One of his meds was increased however I am not certain that it's eliminated them; it took over a week before I started seeing enough of a difference. Typically, it helps fairly quickly. He still has some nights that he up quite a bit.

He had half days of school on Thursday and Friday. On Friday, he managed to fall out of the rocker but luckily wasn't hurt. I was sitting only a foot from him but I wasn't able to catch him. Once he fell on the carpet, I was unable to get him up so I had to call his Dad at work. His Dad, works only fifteen minutes from our apartment so he was able to come and lift him into the chair.

He continued to have issues on Saturday and Sunday and was up at least once every hour last night. He kept crying out which is unusual for him. I tried turning him over and finally started using his Vagus Nerve Stimulator. I am guessing they were seizures because the VNS seemed to help. In addition to being so tired, it's also getting physically harder because everything requires so much more effort. Turning him at night requires lifting his hips off the bed as well as rolling him over. Positioning him in the sling can be difficult on days when he has no tone because I can't keep his body somewhat straight for lifting. On the days that he is out of school, there is a lot of lifting to get him in the Hoyer Lift, then the rocking chair, the repeated diaper changes which require that I move him yet again and then all of the times I have to straighten him up since he can't sustain the sitting positon. That's nearly five days of care without a break.

This morning, he was fussing so I started his food early and got the seizure meds in him. After that, he finally fell asleep for a few hours and so did I. Once he was up, he was unable to sustain a sitting position in his rocker despite repeated attempts. It was a frustrating day for both of us since I felt bad he couldn't sit up at all. All he wanted was to listen to his music on the dining room table. He has this Christmas House that he loves to listen to. He sits in the rocker at the table and lays his head on the table to watch it. Sometimes, he's able to lean back and just rock but most of the time he falls to his right side. It's a pretty boring day for him to lie in his bed all day. I moved him to the upholstered chair which requires less work for him however after a few minutes he wants to try the rocking chair again which he is unable to do.

He continues to choke on his saliva however I am excited because tomorrow he is scheduled for botox injections. The botox injections should help manage that issue. We have waited fourteen months to get these. Apparently, there have been some issues with finding a radiologist. We are scheduled to be there at 6:30 a.m. so we'll have to get up early. I told Dear Son that we were going to the hospital tomorrow to get something to help his choking. I said they have something that works great for kids and the best part was that he didn't have to stay overnight. He starting smiling so I know he was excited. (You can read more about the botox injections here and here.)

That's all for now. Our lives can be pretty boring at times as this is what we do. Caregiving isn't very glamorous but there is something to be said for being together and being able to help someone. Sometimes, when things are hard, it's just nice to have someone to go through life with; I am lucky that Dear Son and I can do this together. He's a great kid and I wish it were different for him.