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 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 13

Andy didn't have as many spasms today, because he slept most of the day away. When he was awake, he was very playful!

His progress has included: reaching when we are going to pick him up, sitting in his bumbo without hyper extending, and holding toys.

Tonight was exciting. Andy had projectile vomit out his nose and mouth. I'm very sure it's a side effect of the increase of medicine we started on Thursday. He has to keep us on our toes!

Day 12

Andy started the day at 5:30 this morning. I could barely believe I was hearing him crying. He went back to sleep, then woke 2 hours later. He is teething, a lot. I can feel at least 10 teeth under his gums, and part of his gums looked dark red/bloody. Poor kid.

It was nice to spend Saturday doing our usual routine. Andy liked going shopping even more, between going to the mall often and starting to see, he never stops looking around!

A very thoughtful friend came by today and dropped off a swing for him to use. When he got fussy around 6, I put him in it. He laughed! Oh, how he laughed!

He fell asleep after about 45 minutes, or maybe sooner. I had fallen asleep on the couch watching him. I had to wake him for his medicine bottle, then put him to bed. He didn't seem to mind.

The spasms were less, except on the drive home from the store. We heard him crying in the backseat and didn't think too much of it. Once I turned around, I could see that he was having repeated spasms,; each one cause his head to bang against the side of the seat and made him cry. I held his head with my hand and it stopped the banging. He stopped crying while the spasms continued. Then he had almost 50 after I woke him for that final bottle. I had no choice but to wait them out and count until they were over.

He is making more progress with his hands, instead of having them tucked in beside his waist he's had them on his belly!

Day 11

I'm almost too tired to write. Every day my list of things to do grows, but I lack inspiration to do anything more than hold Andy.
He had OT today, and Kathleen told me he is still making progress. And he had no spasms until we were out at the mall. He did have more spasms than yesterday.
We tried a training sippy cup because of the handles. He held onto it for a few seconds. I will continue to off it to him more.
The best moment happened after dinner, when Daddy was finishing feeding Andy.

Andy had been crying and fussy for a couple hours. He couldn't seem to be fed enough. I noticed he had gone silent. Like a scary movie, I looked down and slowly saw a trail of bright yellow runny poop (the world does need that description), down Daddy's jeans. I ask him to not panic, but Andy did poop down him. He kept saying, "Get it off me! Get it off me!"

As I was wiping the poop off of him, he even called Andy a bad baby! I still have tears in my eyes from laughter just thinking about it. What an incredibly typical problem to have.

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 9

I'm sitting down and resting for the first time today.

Waking up meant the beginning of chaos trying to balance getting back to normal and our social calendar.

Andy's spasms do not know that we have other things to do. They are gradually increasing nonetheless.

He interacted wonderfully with his friend Paisley, and seemed to enjoy her company. I had to take him for more blood tests today; after two tries the woman couldn't get enough blood from him. We have to try again tomorrow.

I had some mommy time socializing with other mothers tonight, and as bizarre as it felt, it was refreshing. The world keeps spinning even if yours has been still for days.

To speak out to those asking how Andy or I am doing, we are not okay. We are not going to be okay for a very long time. We are getting by. When we are alone we cuddle and I whisper to him how much I love him. And then he seizes in my arms. We are lost in our own world of trying to keep him comfortable, and I don't want to be anywhere else.