Day 29

Chaos over doctors. 

Nurses trying to be parents. Pediatrician's trying to be neurologists. And a miserable baby.

After 3 phone calls this morning a lot is sorted out. I know exactly who I want providing service for Andy and when. I'm not indecisive, and I think it's refusing to "go with the flow" that's causing my stress. The nurse at the neurologist office is printing a copy of all MRI scans and X-rays that have been done so I can bring them to the orthopedic doctor. Our PT thinks it could be good for him to go, the ortho at Bellevue signed off on him, lets see what this doctor says. Hopefully it won't turn into another doctor that I travel to Albany for with my increasing standards. 

1 weeks worth of ACTH is done. 3 weeks to go. This is our 5th day of no spasms. We had the visiting nurse by today who took his vitals and taught me how to test his glucose. With his physical therapy, Andy started looking around more. He's searching for his toys. 

What was really impressive is that he did not cry at all during the shot. I'm so appreciative. Spending the day in bed together because his irritability has subsided. Tomorrow we have no appointments, but I may have a few phone calls to make. I have the last medicine shipment scheduled for in the morning. ;)

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 1

He wakes up. I carry him downstairs for breakfast. Seizure. I sing him a song. Seizure.
The physical therapist arrives, he must be woken from a brief nap. How many seizures can he have in those 30 minutes? At least 8.
All day. It only stops when he's sleeping.
The phenobarbital being slowed down makes him cranky and unable to sleep. Being unable to sleep brings on the seizures.
By 5pm he has one that lasts 2 minutes straight. It was the longest two minutes of my life. For now, he is peaceful. In his crib he is just another baby. Just my little boy.
The dawn is more frightening than the dark this time.