Just the facts, ma’am:
- I believe John was up a lot last night
- When A woke up at 4 am, I took over since I thought John hadn’t slept much. She had no capability to go back to sleep so she and I got up for the day
- Sometime after 5 am, John and C got up for the day but I still don’t know why yet.
- While A and I were in the basement, something upset her. She went into a horrible rage where she took every toy in the basement and threw it across the room, at me and at the dog. It was a horrible occurrence and one I haven’t seen before. We tried to get it on video, but I’m not sure we really got the intensity of it.
- From that event, we all tried to recover, which took a full 2 hours. Then we got dressed and went to the ped’s office for yet another blood draw. John and I are trying to get a good draw that will show a high CamKinase number. A has been on steroids for 7 days which will suppress the number, but she is so sick that I am hopeful it will still be present.
- Once she realized what was happening, it was so sad. She was terrified and was whimpering. I know John was just as devastated as I was.
- We did see our ped briefly and I asked her if there was anyone local who could do PEX for us because A is so bad off. She said no. I don’t think the answer is really no, it is more that it is too difficult to make happen and we will accomplish this quicker with Dr. L. The wait is excruciating.
- When they called us back for the actual blood draw, A couldn’t stop crying. She was terrified. I know she was more scared of what was going to happen than of what actually happened. The phlebotomist was really quite good and was very sympathetic to A. Once he actually put the needle in, she stopped crying. All day though, she has been convinced that the “poke” is still in her arm and will not take the band aid off.
- After the blood draw, everyone was exhausted and luckily, somehow, I managed to get both girls to sleep. All 3 of us took a nap which did all of us some good. There were some more bad rages this afternoon. A is in a place where she doesn’t have the ability to pull herself out of the rage and I have to help her. This is so exhausting for all of us. John and I let her go for a while thinking that she will be able to do it, but she is so sick right now that she is unable to. It takes a LOT of effort to pull her back from these situations. After the last meltdown that I pulled her back from, she needed 30 minutes of sensory time to calm down. Since then, she has been a lot better. I’m very hopeful that we all might get some sleep tonight.