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 14 - no rest for mom

Andy woke up a lot last night. As in more than 6 times. It was so often that I was sleep walking... Or I should say running during some of it. From my bed to his crib and back. Could be teething.

He woke this morning at a normal time, then slept for over 3 hours. He had no phenobarbital in his bottle. He is on 1ml a night for the rest of the week, then we are done. Forever.

I see him waking up in front of my eyes. His frustration is being shown in the expression on his face, he's throwing his arms more in the direction that he wants. And when he can't get to it, he's expressing himself vocally. I didn't push his stomach too much today, and he didn't cry or act like he was missing the extra food he would normally have. He had OT and I could see his progress. He didn't try to hyperextend a lot, and let his neck fall forward more. He's holding onto toys better and looking where she's trying to get his attention.

I went to babiesrus and found Born Free sippy cups. Thankfully, all pieces are interchangeable so I added the handles to his bottles. I'm excited to see what progress can be made!

The spasms have slowed down. He did have a group of them, about 50 or so I lost count, when we were out. There was maybe 6 or so throughout the rest of he day.

I'm hoping he's asleep for the night. He's already been up crying once, but went to bed to begin with at his old bed time. One step at a time.

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.

My perfect baby boy

 This is the hardest story to tell, but I know it like the back of my hand. 
After having two friends ask me today what Andy's medical issues are, I felt it was time to write it out.

Andy was born limp, due to being deprived of oxygen during a prolonged labor. Within 2 hour of birth he had a seizure and was transferred to Bellevue because they could do a cold cap. Andy did not qualify for the cold cap procedure. An MRI scan showed mild to moderate damage to his posterior internal capsule, which is a portion of the brain that runs through the basil ganglia. The EEG scan confirmed the seizure, but with where the activity was located it did not correlate with the brain damage. They do not know the cause of the seizures. The next day he had another seizure, and they began the narcotic Phenobarbital. They then did a 3 day video EEG where he was attached to the EEG for 72 hours. While on the medication there was no activity. A week later when the medicine wore off, they did an EEG and saw seizure activity in the brain that had not had the time to manifest into a physical seizure. He was placed back on the medication but in a lower therapeutic range. The initial dosage had him asleep for the first 10 days of his life. He was in the NICU a total of 16 days. The last 6 days had been due to him being too tired to wake for feedings from the medication and needed a feeding tube.

 He is still perfect, and he has just started mimicking the sounds that I make.