Day 38 - weaning day 3

Andy laughed today. It wasn't a giggle, but a "heh heh" that he had no control over. It was the most beautiful sound I've ever had the privilege to hear. 

I'll keep the good days coming.

He didn't nap much today. 15 minutes this morning, then a 40 minute nap in the evening. He is full of play. More and more play time is all he wants. I'm more than happy to give it to him. 

Day 38 -2nd day ACTH weaning

Andy is doing more than ever before. He sat on the couch and had a conversation with us saying "mom" and "mama" over and over again.

He's been satisfied several times today with playing with his toys. With me and by himself. He's enjoyed tummy time, and has not been shy about letting me know he wanted to cuddle. 

Being without phenobarbital, no spasms, and very little ACTH is a privilege we have never had before. I'll savor every moment before the next form of seizure comes, with the next line of medications. I will log every moment to memory to carry us through the bad times.

Day 37

First day of weaning. 

The shot itself was interesting. As soon as the needle hit his skin, Andy started kicking and then grabbed at the needle in his leg. His wiggling made the shot take longer because I have to pull back on the shot for blood before injecting. 

His personality has been much improved, even in comparison to before the ACTH began. I swear those spasms caused him so much pain. He gave little smiles especially when holding hands. That's how he was when he started smiling for the first time. If things go as before, next will be smiling during diaper changes and then mimicking smiles. I hope we can get back to that. 

Andy's hands were open more often and it was easy to open them. I stared at his palms all day. I've never had the opportunity to look at them and memorized them. They are the most beautiful that I've ever seen. 

Day 36

EEG at Albany medical center.

The hypsarrhythmia is gone from the EEG. No sign of infantile spasms. 

It does show abnormal activity. Andy will always be prone to have seizures for the rest of his life. 

Tomorrow we start weaning the ACTH. If a spasms happen, we go back to the full dose for two weeks and wean again. 

If/when another type of seizure happens I have emergency medication and I'm to call 911. 

One day at a time we go. Will know his opinion on the Bellevue MRI scans in two weeks. 

Day 35 EEG eve

The night before appointments bring more excitement then anxiety these days. Tomorrow we do an EEG and see if these past two days without spasms have really been without them. I recorded a video of the way Andy's eyes have been looking up in case it's important. 

The shots might not work forever, but they are far better than without. Each injection is easier for both of us. If Andy has to continue on them for more than the next two weeks I'm going to start practicing doing them alone. With daddy there, just to see if I can. 

I've found the story of Dr. WJ West mind blowing and fascinating. I find everything about IS interesting. It can not be recreated in lab tests with rats because no other animal has it. It is unique to the human brain. 

You can find more info here: 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093242/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/

Day 34 - pondering brain images

As some may know, the spasms started yesterday. Being in NYC already brings up bad memories. Good family and friends were the highlights for sure. 

And I have the Bellevue brain scans from August 9th and the 17th. 

I can view them on my windows computer. 

There I am, 10:45pm on a Sunday night. Clicking through images, thinking I'm a neurologist and I will understand everything. Then I sigh. I'm not a neurologist. I'm mommy. And my little boy is sleeping so I will too. 

Here are our gloworms. 

Rome Medical Group

All my ducks are in a row. After receiving the pre registration paperwork for the orthopedic doctor, I'm glad I didn't try going yesterday. You have to bring previous images IN HAND. She had no idea he had been to one before. Perhaps if the doctor would have glanced at his file she would have known. The next time a parent tries to communicate that there's reasons they can't immediately see another doctor more communication is necessary.  I'm calling Rome Medical Group tomorrow and they're getting an earful. 

In addition to dropping the ball with a proper referral, she made more mistakes. (This was not the first referral mistake. That one was referring to a new ophthalmologist without sending along the old findings)

After seeing Andy's weight, she told me he was too low on the curve and feed him more. She wouldn't listen to the amount of formula he was taking, which is the most a baby should consume due to iron levels. Then I told her he had acid reflux from the injections and spitting up every feeding. She repeated to feed him more. Had she asked what type of formula he was eating, she could have made the recommendation my friend made. Sensitive formula. Instant fix today, he hasn't spit up once. 

Rome Medical Group is getting an earful from me tomorrow. I'm spending 4 hours riding in a car, I'll have the time on my hands.