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.
Saturday, May 4, 2013
Friday, May 3, 2013
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.
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.
Thursday, May 2, 2013
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.
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.
Wednesday, May 1, 2013
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
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
Tuesday, April 30, 2013
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!
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!
Monday, April 29, 2013
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.
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.
Sunday, April 28, 2013
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!
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!
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