Day 15

Andy woke up at 6:15, screaming into his crib rails. Over and over I removed him and gave him his stuffed animals.

I received an email from his neurologist:

The following testing has all come back NORMAL:
- Cerebrospinal Fluid (CSF) Neurotransmitters
- CSF Pterins, Methyltetrahydrofolate, and Pyridoxyl 5 Phosphate
- CSF Lactate

He did well with physical therapy. Lauren was impressed with him hyper extending less and said she could only encourage more tummy time.

I noticed when encouraging handles on his bottle that his hands automatically pull downwards if something is in their grasp. But then later on he took a clump of my hair, looked at it, and shoved it into his mouth. He then appeared horrified and dropped it! I'm still so very proud.

I checked his mouth since he was being overly fussy and noticed he had a front tooth coming in. And oh was he fussy. Daddy came home shocked how aware Andy was, and that he interacts and is excited when I sing to him. Daddy found 3 teeth cutting in.

So tonight I went and bought some pedialyte pops for tomorrow. Hoping for a little, white tooth tomorrow!

And he only had 5 spasms! That's it!

Day 10

I brought Andy down the street to another Quest Diagnostics, and this time he was able to have his blood drawn. He didn't seem to mind it.

All in all today was a good day, 27 spasms, but lots of love and cuddles. His napping was also more back to normal, and he was aware when awake.

He had PT this afternoon, and Lauren said that he hasn't regressed, which is impressive since he hasn't been receiving services. The muscle on his neck that I was stretching out several times a day has gone back down completely; I haven't stretched it out in a week. He needs a few more weeks before we can expect progress to begin again.

He was throwing up on me after the 3pm feeding, so daddy brought home pedialyte. He loves the stuff! Then there was no more throwing up. We all sat outside and enjoyed cooking in the beautiful weather. The pictures look like Andy didn't like it so much.

I did receive a call from Dr. Pugh today - the spinal fluid sample tested positive for infection. He is very sure Andy's brain does not have an infection and was a contaminated sample from his skin. We discussed that the spasms were increasing as of yesterday, and the increase in medication tonight. The possibility of him needing injections is still there.

Only 10 minutes shy of the normal bedtime shows that life continues on, it the most wonderful ways.

Day 3

I should have known that no good has ever come from silence. Andy was silent, so I went to check on him when the alarm went off. This is what I found.

He was sweating badly. Immediately I undressed him, changed his diaper, and gave him a few minutes to cool down. After 10 minutes he still felt hot. The next step was to take his temperature. 99.5. Not a problem; however, warmer than any temperature I've taken for him. His skin felt sticky, and he looked green. More seizures. Long, horribly clusters lasting 4 minutes this time. I fed him breakfast, he fell asleep. On and on today my baby slept. He woke 2 hours later, still not looking too good. I took him out for a walk, dressed lightly, so he could cool off in the breeze. He was silent, and looking around. No seizures. We came home and he fell asleep as we walked in the door. He slept for another hour. Lunch, his therapist arrived. Andy smells bad. A sickly smell. We discuss all the progress he has made in the last month. She leaves, he falls asleep. This is our day. More throwing up.

Daddy came home, and helped. He understands why the house isn't clean. He tries to play with Andy. Not a lot of response, and Andy goes back to being a newborn, cuddled between his parents on the bed.

We had to wake Andy for his final feeding of the night. It felt reminiscent of his first nights home and being too tired from the phenobarbital. He appeared nauseous. One bite of food to get down the medicine, and a bottle for the rest of the medicine. Seizures began during the feeding; this was the first feeding from Daddy that he seized during. Salt was being rubbed into my wounds, watching Daddy hug him and whisper "Stay with me," the same words I repeat all day long during the seizures when I'm alone.

Our bags are packed now. The same bags that I was going to pack tonight, back when we believed we would be visiting my family. Very different but the same.