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. 

Day 30- I fought Bellevue and I won

Some may know the battle I've had with Bellevue. From a lack of communication with clinic neurologists, to record release issues from moving. How difficult it is to reach anyone who speaks English. 

In March, with a new neurologist, I needed his MRI images. Bellevue ignored the request. Then on April 19th, a new MRI was taken showing no signs of brain damage. A more aggressive approach was taken by attending neurologists at Albany medical center for the previous MRI images. Then my neurologist finally received a disc. It had chest x-rays. 

We still have no MRI brain images. I'm going to NYC tomorrow, and thought I could just pick them up. I called Bellevue this morning to ensure it went smoothly. I was told after I signed the form it would take 10 days for the disc to be mailed. My son's rare form of epilepsy depending on those scans was not enough. 

I was ready to storm the castle. I took out my proverbial sword, and searched. I scanned through NYC public hospitals, and found the patients rights form. Andy's rights had clearly been violated. #15 to be exact. There was a number for the department of patient advocacy, for questions or concerns and to submit a formal complaint. And access to the state health department to take it further. 

I called the number and explained with examples why his rights were being violated despite their protocol. How exceptions are valid and a necessity for him to receive critical care. Like magic, she told me she needed to make a phone call for me and would call back. Less than 10 minutes later I'm informed to bring proof he is my son (birth certificate) and my ID and the disc will be ready for pick up on Friday. 

Never accept an answer that does not work for you. Every contract can be broken. 

Day 29

Chaos over doctors. 

Nurses trying to be parents. Pediatrician's trying to be neurologists. And a miserable baby.

After 3 phone calls this morning a lot is sorted out. I know exactly who I want providing service for Andy and when. I'm not indecisive, and I think it's refusing to "go with the flow" that's causing my stress. The nurse at the neurologist office is printing a copy of all MRI scans and X-rays that have been done so I can bring them to the orthopedic doctor. Our PT thinks it could be good for him to go, the ortho at Bellevue signed off on him, lets see what this doctor says. Hopefully it won't turn into another doctor that I travel to Albany for with my increasing standards. 

1 weeks worth of ACTH is done. 3 weeks to go. This is our 5th day of no spasms. We had the visiting nurse by today who took his vitals and taught me how to test his glucose. With his physical therapy, Andy started looking around more. He's searching for his toys. 

What was really impressive is that he did not cry at all during the shot. I'm so appreciative. Spending the day in bed together because his irritability has subsided. Tomorrow we have no appointments, but I may have a few phone calls to make. I have the last medicine shipment scheduled for in the morning. ;)

Day 27

What a wonderful Mother's Day I've had. Daddy has been helpful, so I haven't had to do very much. I had some sweet baby cuddles. 

We met the visiting nurse and she's nice. The only issue is our health insurance wants a $20 copayment and she needs to visit 3 times a week. We are checking if any assistance is available with her company. If not, it's not something I feel is necessary. There's no copayment to go to my pediatrician and it costs a lot less than that in gas. It's the same thing! She wants to be here when I give the injection and see me give one. I'm to the point where I don't understand the big deal. If I've done it 3 times with nurses watching, I'm sure it's being done correctly. The way Andy had been reacting to the medicine makes me want more privacy for my family during this time of healing, not more probing.

 

No spasms today. Lots of spitting up and crying. My poor baby. 

Day 26

Two days now of no spasms. Still irritable. Eating more than ever! 

Completely worth it. Daddy helped give the shot for the first time this morning. We can do this together. It's only slightly awkward taking Andy out with a mask on. 

The cool mist humidifier is helping keep the cough away, which is a relief. 

All I want for Mother's Day is another day free of spasms! 

Day 25 - skipped a couple nights

It has been too hard to keep up with everything, AND my blog. It shows how priorities shift when something needs to go. My days have been spent dropping Daddy off at work, then going to the doctors since Wednesday. We did the first ACTH shot in Albany on Wednesday. Then because of the time, and slowly needing to make the shot earlier in the day, I've had to go to our pediatricians office.

Monday he has his 9 month wellness visit, which is good because Dr. Pugh wanted him seen by the pediatrician next week anyway. In two weeks he has an EEG scheduled. If there are no spasms, we do the EEG, then I receive instructions for weaning. We will stay on the zonisamide for 3 months after the injections before weaning that medication. It's very certain Andy will have some form of seizures for the rest of his life.

I have to organize the deliveries of the medication because I have to be home, to sign for it and make sure it goes straight to the refrigerator. I've had to organize the 4 visits a week for therapy. By tuesday I should have a visiting nurse coming once or twice a week too.

Andy doesn't leave my sight, because it is essential to not miss any spasms. He had none on Wednesday. He had one group of them yesterday. If I had not gone upstairs to check on him, I would have missed knowing they happened. There was none today, and I know that for sure. I stayed by his side through sleep. He's eating a lot. And crying a lot. When he's full and happy, he is so happy. It's all about keeping him comfortable. We will be starting Zantac in the morning to prevent heartburn, I'm hoping it helps with his excess gas. I can hear him awake right now. He wakes every 30 minutes at night. Off to my baby!

My inspiration

So much for being unable to blog. I found inspiration. 

If I had a ranking of top 3 worst nights of my life, this would be one of them. Now this scale is not necessarily based on outward emotions, or how it is being handled; it is based solely on the permanent life altering moments that have happened or are about to happen. 

This comes in ranking #3. 

The very worst night came after finding out Sean had passed. 

The second was when Andy was rushed to the NICU and transferred to another hospital. 

Why is tonight so horrid? Reality is weighing in on Andy's odds. Calls from The National center for Rare Diseases. The amount of formality around beginning the medication due to the morbid risks it brings. 

So I wanted to blog about something different tonight. Beautiful and inspiring. I began speaking to my husband for the   first time a little over 7 years ago. I was smitten from the start, but he didn't like me that way. I thought he was weird, and I didn't like how he wouldn't show me a lot of attention. We talked on the Internet on and off for over two years. 

I never would have thought that person on the other side of the screen would become my life partner. The one who I hold hands with as we hit the bumps in life. My strength, my comfort, my better half. I can never lose all hope as long as I have him. It does not matter what tomorrow, or the next year brings. 

Day 22

We start the injections tomorrow morning at the neurologist office. 

I have nothing to say tonight. 

Day 21

One set of 12 spasms today. We move forward with the injections.

I explained to Andy's OT how he has been dribbling formula from the right side of his mouth every feeding and I realize he needs help with it. She told I could go to our service coordinator and request a speech therapist; or, I could go buy an electric tooth brush and she can help me. So I bought an electric tooth brush. She has been fantastic with Andy and I know she can help me with this. Andy's tooth also fully cut the skin this morning so it was time for a tooth brush anyway.

The nurse called from the neurologist office. I explained to her that there was no spasms yesterday, more today, so I supposed we were going to do the injections. She explained to me that she was pending approval from the insurance company but informed them I needed the medication delivered tomorrow. They should call me before arriving to make sure I'm home. She wants me to bring the medicine to his appointment on Wednesday, so after I'm trained I can give the first shot in front of them. No pressure or anything. She then asked if we had a nurse visiting and I told her "No, but I want one!" She is starting the process of contacting the right organization in my area to get started with a nurse coming by to help with the injections and/or monitor Andy. It is a huge relief and burden lifted.

I realize it will still be me doing the injections. That extra help to make sure it's going right is priceless. I'm not going to be leaving the house anyway. He has to have the injections for a minimum of 4 weeks. If the spasms stop, and an EEG comes back normal, then we can wean the medication off. If it takes longer, he will be on it longer. I think there a regular medicine he's given after them. If they start back up, we repeat the injections. We can do this.

I made skinny strawberry chocolate chip muffins for our last outing tomorrow. I hope all of our friends know they are very welcome to visit, as long as they have not been sick in the last two weeks and wash their hands. :)

Day 20

The day began as wonderful as could be. Daddy got up with Andy during the night, and I slept until 7:30. We took care of him together this morning, then the 3 of us went back to sleep. We set up the ac unit in Andy's bedroom and now his rooms is very cool.

After fixing breakfast and making sure my boys were settled with healthy snacks (sweet potatoes and grapes) in front of the race, I went shopping. Such a wonder drug retail therapy is. I came home in a great mood, and finished the race with Daddy.

Then we made a family trip to the zoo. I forced them both to wear sunblock. Andy slept the whole time. He woke up when we came home and was a bit cranky the rest of the evening.

There's one important thing I haven't mentioned.

No spasms.

Day 19

This weekend is like the silence before the storm. We know that next weekend will not be like this one. We don't know when the next time we will have a weekend where Andy is not in pain again.

The day was filled with lots of playtime with Andy, and then he slept the afternoon away. Daddy played guitar for him until he fell asleep tonight.

I did notice something new because I was waiting for him to sleep this time. I had woken him up for his medicine, and then he seemed wide awake wanting to play. I couldn't resist. Why would I mind? We set him up in his high chair and I helped hand him toys. Then the spasms started. So I brought him to his crib, and laid him with gloworm.

I noticed when he has a spam, gloworm goes flying. Then he struggles to roll and reach gloworm. I saw moment of confusion on his face as it happened over and over again. He couldn't understand where gloworm kept going. I'm sad for him. He started trying to roll on his side and look at me between spasms, since I was offering him gloworm by sticking my arm into the crib but everytime he would see me, the spasm would force him to his back. Now I know why he's woken me up by screaming since Monday. It's a nightmare to try and imagine how it is from his view.

Day 18

How many times can a baby wake up crying? A lot. Up all night again, running between his room and ours.
I was so tired I completely forgot about his OT coming by. I heard a knock at the door, grabbed my bathrobe, then was confused by seeing her at the door. She was right on time and I was befuddled. Thankfully Andy was ready, and she was so understanding. He did very well, and she can see improvement since Monday.

We walked to the library, Andy slept the whole way there. The stories were barely over and I could tell something was wrong. He then had a cluster of over 50 spasms in 10 minutes, until they slowly drifted further apart then stopped.

I called the neurologist because if that happened in the hospital he would have had emergency seizure medication. I was told that medicine could be only delivered through an IV. With us going on 3 weeks of spasms, and them not being gone, we must take drastic action. Any more time and we could lose Andy having any hope of a normal IQ. So we must start the ACTH injections. The paperwork is being started with the insurance company, and I will be trained on Wednesday at his doctors appointment. All questions will be answered then as well.

This is the website for the medication if you want more info: http://www.acthar.com/ispatient/home

It's heart breaking in every way possible. Our lives are about to become extremely limited, Andy will have a very compromised immune system. This medication has to stay refrigerated and I will be the only person trained to give it to him because Daddy can't take the time off off of work to learn about the injection. He can help me, I will definitely need his help restraining Andy every time, but that's it.

I'm cringing at our trip to NYC, but that's not optional. Legal obligations and whatnot. But it will now be limited. And then we will be staying in Utica until this is over.

I can't type anymore. I'm too raw and emotionally empty.

Day 17

It's been a couple rough mornings here. Andy isn't hungry when he wakes up, and doesn't really want to eat until after his first nap.

He had a total of 25 spasms today. They were broken up into two distinct groups. He did well otherwise.

He did great with physical therapy. For the first time, he sucked on his toes. And looked around for me when I left the room. He has no trouble leaning forward and his torticollis is much better.

We made the decision to end his phenobarbital. He had none tonight. It was only a couple days early, and he has been down to the final 1ml daily.

I'm not sure if I believe he could become even more aware than he already is. He's figured out how to hold onto the buckle on his booster seat.

We had a very fun play date with other babies at the playground. Andy got his first baby kiss, and reached out for other babies. He was so sleepy, I'm excited for him to become less sleepy with more time so he can get the most from his play dates.

Day 16 - autism

7

That's how many spasms Andy had today. Compared to the 78 he had on Saturday it is mind blowing. He slept most of the day away. If I tried to get him to play he was too tired. I'm hoping he's more awake for the playground tomorrow.

I was able to briefly prop him against pillows, without him launching backwards. It was such a beautiful thing. We went for a walk to the store, and he was such a ham soaking up the sun in his hat and glasses.

I made him creamed corn and he loves it. His swing has been a miracle for when he gets too grouchy. His teeth are slowly making their way in.

A story I read today really hit me. In the story, it was to spread autism awareness, something I wish there was more information about. Here's a link to the story:
http://www.facebook.com/photo.php?fbid=10151904685083957&set=a.10150437256498957.453227.182605663956&type=1

Here's what bothers me...
Why is taking Jon out on a date called "working to make lives better"?

I want real integration for those with disabilities. Not this half-ass attempt that is highlighted as charity (the way what the woman did was spun, I'm NOT insulting what she did.) I have big dreams. Dreams where we all live along side each other with understanding and acceptance, not pity and charity.

When I was 16, my first real boyfriend had cerebral palsy. It phased me so little that I was completely ignorant that there was anything "wrong" with him. Granted I was a teenager and wrapped up in myself. Maybe blame the homeschooling. There was never focus from either of our parents that there was any difference between choosing him and choosing someone without CP. I was friends with him for years, together for at least 6 months, and I never even asked what CP was. It did not matter. Why does having autism matter? Those with autism are human like me and my son.

No more separation!

http://www.autismspeaks.org/what-autism/world-autism-awareness-day