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.

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.

Day 7

I woke up at 5:30, and made it to the hospital by 6. I'm informed that Andy had a seizure, different than the spasm seizures, and he was given medication for it.
The video shows him sticking out his tongue and making feeding cues in his sleep. I'm told that he was also making a bicycle movement with his left leg, and arm motions.
Two hours later a resident comes in and tells me after watching the video that it was not a seizure. And an EEG would not show evidence of the seizure that has already occurred.
At 11am an anesthesiologist comes in with consent forms for the spinal tap. I find out it will be a "senior resident" doing the procedure. I felt fear in my heart, but I'm not the type to punish a person for someone else's actions. Then I find out Andy weighs 17lbs. He's gained 8oz since Friday.

After the tap I find out they had to try 3 times and there was blood in the sample. If another is needed, Dr. Pugh (his neurologist) will do it himself.

Dr. Pugh confirms that the video proves Andy did not have a seizure. He admits and owns up to his mistake. He was described something different than the video. He had brought 3 residents with him, and requested that I play the other videos for him. I proudly showed every video with seizure activity. I believe that if one of those residents can recognize and help even one baby having infantile spasms, it was worth my time.

We won't find out any tests results for a while, and the echocardiogram was norm. On Wednesday I can take Andy for more blood work and genetic testing. Being sleepy from the emergency medication means he needs to stay in the hospital but can go home in the morning as long as he is eating properly. He keeps waking to feed but sleeps the rest of the day away. Now he is napping in my arms, and is dreaming of seeing daddy tomorrow night.

The Ronald McDonald house has been extremely generous and informed me I can stay there with Andy, so we are in no rush waiting for Daddy to get out of work.

He is still having spasms today when awake;however, Dr. Pugh says that as of right now he does not believe Andy will need injections and we should see results with the current medications.

Day 6

We get to the hospital at 9:30am, and Andy is asleep. When he wakes up, he has multiple seizures or "spasms" as they are called. The nurses are confused when we tell her he is having a lot, mislabeled them as a cluster and paged the doctor.

Dr. Pugh comes in and the mistake is explained to him. We discuss how Andy is not improving with the increase in medication, he tells us it can take 5 days to see results and we will begin to see them tomorrow. He also informs the pediatric resident that his blood tests he ordered yesterday are not in the system.

Andy has his blood drawn, and the nurse tells me to put a maxi pad in his diaper. He will never hear the end of this. It was for the urinalysis. The day was filled with spasms, and a sad silence as we knew daddy had to go home.

After daddy left, Andy napped for a whole. Woke up, and I fed him. Laid him down and went back to the house. Dinner was not ready at the usual time and I was gone for almost two hours. I return to Andy's screams. The nurse tells me she tried everything. I hold him, and he goes silent. He gave me feeding cues, so I fed him again.

Not very long after he is acting sleepy, but hungry. It is around 7pm. I know that if I feed him more he will sleep through the night without medicine. They will not give his medicine until 9pm. Andy wakes at 7:40 from not being full, and spasms over and over until 8:15 when I insist he is given his medications.

This is a discussion I will be having with the doctor tomorrow. I'm getting up at 6am to make it there before 7am. I will be there for my boy, every minute.