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!
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Friday, May 10, 2013
Tuesday, April 23, 2013
Day 8
Woke up a little before 6am.
I find Andy still asleep, he wakes up in a good mood, and eats without a problem
Dr. Pugh came in by 7:30, excited that Andy only had one spasm in the last 30 minutes.
I ask more about the MRI scan, and the answers are the same, we won't know more until the actual images are obtained from Bellevue. The test results for metabolic disorders and genetic issues will take a long time. Follow up in 2 weeks.
Andy was then discharged.
We went back the McDonald house, Andy did not want to be set down, so I was happy to comply. He's going through a growth spurt, and the amount of food he was eating made my stomach hurt. And well, watching him have seizures now makes me feel sick to my stomach. It happens so often.
He napped most of the time we were waiting, until Ben picked us up. It makes me sad that the Volunteer who checked us out was shocked that we want to make a small donation.
The ride back was a time of reflection for me. The prospect of our now lifetime battle with epilepsy and our social calendar for the rest of the week. I feel anxiety about being taken out of my safety zone. That beautiful, protected bubble of other parents with sick children that I could talk to almost 24/7 if I needed support. Now I will be surrounded with parents of healthy children again. I imagine it being very similar to how Andy may feel one day because no matter his differences or disabilities we live in a world for the "healthy".
When I got home it was chaos, I had to clean up after the mess that was left by daddy then I assembled the grill. I left all the suitcases packed, and decided it could wait. Andy settled back home, he was a little cranky but mostly tired. He's asleep now, and his sleep schedule is almost back to what it was.
Now to wait up for the new episode of Awkward.
I find Andy still asleep, he wakes up in a good mood, and eats without a problem
Dr. Pugh came in by 7:30, excited that Andy only had one spasm in the last 30 minutes.
I ask more about the MRI scan, and the answers are the same, we won't know more until the actual images are obtained from Bellevue. The test results for metabolic disorders and genetic issues will take a long time. Follow up in 2 weeks.
Andy was then discharged.
We went back the McDonald house, Andy did not want to be set down, so I was happy to comply. He's going through a growth spurt, and the amount of food he was eating made my stomach hurt. And well, watching him have seizures now makes me feel sick to my stomach. It happens so often.
He napped most of the time we were waiting, until Ben picked us up. It makes me sad that the Volunteer who checked us out was shocked that we want to make a small donation.
The ride back was a time of reflection for me. The prospect of our now lifetime battle with epilepsy and our social calendar for the rest of the week. I feel anxiety about being taken out of my safety zone. That beautiful, protected bubble of other parents with sick children that I could talk to almost 24/7 if I needed support. Now I will be surrounded with parents of healthy children again. I imagine it being very similar to how Andy may feel one day because no matter his differences or disabilities we live in a world for the "healthy".
When I got home it was chaos, I had to clean up after the mess that was left by daddy then I assembled the grill. I left all the suitcases packed, and decided it could wait. Andy settled back home, he was a little cranky but mostly tired. He's asleep now, and his sleep schedule is almost back to what it was.
Now to wait up for the new episode of Awkward.
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