We are all done with his IVIG treatments this week. Which, had it's ups and downs, but overall went great. On Wednesday he was all smiles and happiness at the hospital. One of the nurses could sign really well and he appreciates when any strangers can sign to him. He lights up and gets so excited. So, the only thing to put him in a bad mood was getting his IV put in. He cried and held on for dear life to Todd. But, as soon as it was done he was over it. We are consistently amazed at his behavior through all the needles, EEG hats, and medications... he just cries at the appropriate time, and then he calms down and does whatever is asked of him. We had to sit for 3.5 hours for the blood infusion, and he did that so great. He got a little bored at the end of it, but was still so patient. He always tells me that he can't take out his IV yet, "the doctor has to take it out... I have to wait". We are writing books for him that are simple, but are effective in teaching him how to read by sight mostly. He knows almost all of his letter sounds, but sound gets very confusing for him a lot of times. So, we looked through the book we made him at the hospital and he is reading it the first time we show him the word. He even can understand fingerspelling if it's a name we've fingerspelled several times. So, the visual understanding is very strong and is in tact. We've got a long way to go on the auditory though... which scares me.So, we were at the hospital from about 2-8:30 the first night. He slept fine and woke up feeling fine and eating. We didn't think anything about the way he felt until we got into the car to drive up to Primary's again. He almost immediately started telling us that he was going to puke. So, we got out some bags and towels. Bless his heart, he kept trying to stop it from happening. But, out it came. Fun to have that on top of his IV still stuck in his hand from yesterday. Which, was starting to hurt him. So, he looked awful all the way up. I had a new shirt for him, luckily. We got there and he couldn't even walk, or didn't want to. He just laid down in his hospital bed just looking miserable. The doctor came into check him, and she got to have him throw up on the bed while she was checking him out. After that the little guy just klonked out into a very deep sleep. We weren't sure if they were going to go ahead with his treatment because of the nausea, but the doctor checked with the pharmacist and an immunologist (that does IVIG a lot) and they all said it shouldn't be from the IVIG. Yeah right... too much of a coincidence, but that meant they would go ahead with the next dose.
He slept until they got the IVIG set up, and would have kept sleeping, except for that his IV spot was getting so tender. When they flushed the line out he woke up screaming, and kept screaming after the IVIG started going because his hand hurt. Anyway, he finally calmed down. It was a mellow evening for him. He looked miserable and uncomfortable, but we got through it. Today we see no signs of nausea and he seems very happy. I keep asking if he is sick and he says "no," and then opens his mouth wide to give evidence that there is no puke inside. We will have an EEG in 3 weeks and see if this been helpful. If there are any improvements will keep doing it. If not, we'll dump it and move on to just trying several different anti-seizure meds.
Todd and I keep talking about how well he takes everything that he is going through. He seems to calm down fairly easily through it all. I know how painful all of this must be, but he remains so calm and collected through the majority of it. Two cute things: He told me yesterday that his IV is going to help him get better. But, then he also said in his prayers at night, "thank you for the doctor that they took this thing out of my hand." I am continually humbled by Dray that he is going through so much, not fully understanding all of it, and he remains such an obedient, loving, and for a child with his condition, very talkative. It's hard to be grateful that he can communicate this well when there are so many serious deficits in his language and understanding. We just know there will come a day when we can be in the recovery phase, and START to put this behind us. I am his mom, so I cannot imagine him not coming out of this an awesome "in tact"person living a normal life. So, as much as I know the facts, I like to imagine Dray at 100%. I'll take 95% though... I'm not greedy!!
