Day 25 - skipped a couple nights

It has been too hard to keep up with everything, AND my blog. It shows how priorities shift when something needs to go. My days have been spent dropping Daddy off at work, then going to the doctors since Wednesday. We did the first ACTH shot in Albany on Wednesday. Then because of the time, and slowly needing to make the shot earlier in the day, I've had to go to our pediatricians office.

Monday he has his 9 month wellness visit, which is good because Dr. Pugh wanted him seen by the pediatrician next week anyway. In two weeks he has an EEG scheduled. If there are no spasms, we do the EEG, then I receive instructions for weaning. We will stay on the zonisamide for 3 months after the injections before weaning that medication. It's very certain Andy will have some form of seizures for the rest of his life.

I have to organize the deliveries of the medication because I have to be home, to sign for it and make sure it goes straight to the refrigerator. I've had to organize the 4 visits a week for therapy. By tuesday I should have a visiting nurse coming once or twice a week too.

Andy doesn't leave my sight, because it is essential to not miss any spasms. He had none on Wednesday. He had one group of them yesterday. If I had not gone upstairs to check on him, I would have missed knowing they happened. There was none today, and I know that for sure. I stayed by his side through sleep. He's eating a lot. And crying a lot. When he's full and happy, he is so happy. It's all about keeping him comfortable. We will be starting Zantac in the morning to prevent heartburn, I'm hoping it helps with his excess gas. I can hear him awake right now. He wakes every 30 minutes at night. Off to my baby!

Day 18

How many times can a baby wake up crying? A lot. Up all night again, running between his room and ours.
I was so tired I completely forgot about his OT coming by. I heard a knock at the door, grabbed my bathrobe, then was confused by seeing her at the door. She was right on time and I was befuddled. Thankfully Andy was ready, and she was so understanding. He did very well, and she can see improvement since Monday.

We walked to the library, Andy slept the whole way there. The stories were barely over and I could tell something was wrong. He then had a cluster of over 50 spasms in 10 minutes, until they slowly drifted further apart then stopped.

I called the neurologist because if that happened in the hospital he would have had emergency seizure medication. I was told that medicine could be only delivered through an IV. With us going on 3 weeks of spasms, and them not being gone, we must take drastic action. Any more time and we could lose Andy having any hope of a normal IQ. So we must start the ACTH injections. The paperwork is being started with the insurance company, and I will be trained on Wednesday at his doctors appointment. All questions will be answered then as well.

This is the website for the medication if you want more info: http://www.acthar.com/ispatient/home

It's heart breaking in every way possible. Our lives are about to become extremely limited, Andy will have a very compromised immune system. This medication has to stay refrigerated and I will be the only person trained to give it to him because Daddy can't take the time off off of work to learn about the injection. He can help me, I will definitely need his help restraining Andy every time, but that's it.

I'm cringing at our trip to NYC, but that's not optional. Legal obligations and whatnot. But it will now be limited. And then we will be staying in Utica until this is over.

I can't type anymore. I'm too raw and emotionally empty.