Too early. 3:05 AM and Alex is up. Took all those naps yesterday. So I grab my pillow and push him over to his side of the bed and tell him, ‘Time to sleep.’ Then for then next 45 minutes this little hand keeps rubbing my back and signing ‘airplanes’. 4 AM, I give up. Alex and I are out to the livingroom.
We can not find his dot box, his favorite puzzle. Mom picked it up yesterday so the new puppy would not chew on the pieces. Anyway, we go back and forth from the LR to his bedroom. The whistles are jangling around his neck. I am afraid the puppy will hear us and want to get up as well.
Friday, August 15, 2008
Tuesday, August 12, 2008
On our own
Very good day. Alex slept through the night and got up on his own around 7:20. He immediately signed airplanes but I told him first was breakfast, then shower, then medicine and finally airplanes. He held up 5 fingers and said, “Five.”
So I could not get him to eat a normal breakfast but he did have Mac and Cheese again. Then we went off to the showers. He still needs help with every aspect. I guess he sort of can wash his own hair. But otherwise we have to wash him down. He also does not dry himself.
Before going to The ARC, we stop over by the runway and watch a few planes land. Even after all these years he use the word, ‘orange’ for any airplane. I guess it was because of all the orange Southwest planes we use to see.
So I could not get him to eat a normal breakfast but he did have Mac and Cheese again. Then we went off to the showers. He still needs help with every aspect. I guess he sort of can wash his own hair. But otherwise we have to wash him down. He also does not dry himself.
Before going to The ARC, we stop over by the runway and watch a few planes land. Even after all these years he use the word, ‘orange’ for any airplane. I guess it was because of all the orange Southwest planes we use to see.
Monday, August 11, 2008
Early Night for Alex
Well it is 7:40 PM and Alex has already had meds is asleep.
He had a seizure this AM, 5:33, but then got up on his own around 6 AM. He has stayed up the entire day. We had to have MAC and cheese for breakfast but he had no problem going to The ARC.
I picked him up early, stopped by the house to say hi to Grandpa, and then out to Fiesta Texas again. He was very excited about riding the train, and the horses on the carousel, and then sat and watched the airplanes. After about 20 minutes he finally said he wanted to go on the plane. But alas he was too tall.
But, while waiting, we were near the White Water log rise. He expressed an interest in going. So off we went. And again. And again. Wow he was wet but said he still wanted more. I expected to bring him home and let him get to sleep. Here we are coming down the big drop.
Then we got home and there was a water rise right in our own street! Water main brake.
Sunday, August 10, 2008
Sunday Seizures
Starting out with seizures this AM. 7:50 Am and again 8:22 AM. Shortly after that I was able to get him to take his medicine. And he slept till 12:20 with no more episodes.
Now we have decided to go look for trains, stop by Mac Donald and maybe bring along some Mac & Cheese.
We indeed got Mickey D’s and then stayed along the tracks by Whetmore, at the end of the airport run way, but had to wait nearly an hour for a train. During that time he finished on 32oz Diet Coke and we got a refill at the Broadway Mac.
Back to the tracks. Here is the train? There it is! But wait, it is going backwards. There is no engine. Alex thinks that is just too funny. Lots of laughing. Then they crash couple with a loud – bang!
Now we have decided to go look for trains, stop by Mac Donald and maybe bring along some Mac & Cheese.
We indeed got Mickey D’s and then stayed along the tracks by Whetmore, at the end of the airport run way, but had to wait nearly an hour for a train. During that time he finished on 32oz Diet Coke and we got a refill at the Broadway Mac.
Back to the tracks. Here is the train? There it is! But wait, it is going backwards. There is no engine. Alex thinks that is just too funny. Lots of laughing. Then they crash couple with a loud – bang!
It is hot, 100 degrees. So we come back home and have a quiet afternoon doing Legos. We go to LIFE group, for bible study and dinner, at the Laxson's where Alex played very nicely with a couple younger kids. Then we went swimming in neighbor Charlotte’s pool. Alex loves to dive under water for the rings.
Mickey D's
Starting out with seizures this AM. 7:50 Am and again 8:22 AM. Shortly after that I was able to get him to take his medicine. And he slept till 12:20 with no more episodes.
Now we have decided to go look for trains, stop by Mac Donald and maybe bring along some Mac & Cheese.
We indeed got Mickey D’s and then stayed along the tracks by Whetmore, at the end of the airport run way, but had to wait nearly an hour for a train. During that time he finished on 32oz Diet Coke and we got a refill at the Broadway Mac.
Back to the tracks. Here is the train? There it is! But wait, it is going backwards. There is no engine. Alex thinks that is just too funny. Lots of laughing. Then they crash couple with a loud – bang!
Now we have decided to go look for trains, stop by Mac Donald and maybe bring along some Mac & Cheese.
We indeed got Mickey D’s and then stayed along the tracks by Whetmore, at the end of the airport run way, but had to wait nearly an hour for a train. During that time he finished on 32oz Diet Coke and we got a refill at the Broadway Mac.
Back to the tracks. Here is the train? There it is! But wait, it is going backwards. There is no engine. Alex thinks that is just too funny. Lots of laughing. Then they crash couple with a loud – bang!
Saturday, August 09, 2008
Saturday with Dad
We it has been a long time but Alex and I finally spent the whole day together. He got up nice and early, 6:30 AM, and decided we should go look for airplanes. So off we went.
Of course, had to stop by Mac Donalds for a biggie breakfast. We could just eat pankcakes while watching the planes.
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Of course, had to stop by Mac Donalds for a biggie breakfast. We could just eat pankcakes while watching the planes.
Then we decided to finally go get our passes for Fiesta Texas. Alex enjoys riding the train and the carousel. We stopped often and sat on a bench to watch the train come by. He also showed great interest in the roller coasters and the airplane ride. After 3 hours he was ready to come home for a rest.
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But wait, he is not done yet. After a couple hours of quiet time he agrees to go swimming. He collects his diving rings, gets on his swimsuit and off we go. He loves to jump off the board, do some dead man floating, and of course dive for those rings.
New Puppy
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Marycke and Megan have gotten us a new puppy - Sophie. They are up in Michigan now but are due back in San Antonio Tuesday. I keep telling Alex sheis coming and he smiles. But still says - "No."
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Friday, August 08, 2008
Long Night
Hmm, 1:30 AM and Alex is out of bed. All that sleeping during the day yesterday, as a result of seizures and Diastat, and now he is wide awake. But Marycke is leaving with Megan for Michigan today and I really need some sleep. So I put Alex in bed with Marycke. Wake her up and let he know.
3:10 AM, I am in the office working on a website, and in walks Alex. Okay, back to Marycke. She apologizes for not hearing him get up. I work till 4 AM and go to bed myself. 7:00 AM, Neal, Megan and Marycke are up, time to go to the airport, and of course, Alex is snoring away.
Fortunately Dad is still in town and comes over to stay with Alex till I take the girls to the airport. Everything goes well. Marycke is seeing her parents in Ann Arbor, and rumor has it a new gold retriever puppy will be coming back. Her name is Sophia.
I am home by 8 AM and Dad says.. Alex is up. Huh? I though for sure he would be sleeping. Nope, ready for breakfast and then off to the ARC. Well breakfast was prepared but very little was eaten. Oh well guess he will have a good lunch. The video below shows a typical morning trying to get him to eat after having had seizures the day before.
At The ARC I cannot find his class. With some assistance I find it. Several folks come greet us but the aid is new... he first day. Oh boy. How will she know about Alex. He has not even gone potty yet. Lots of action in the classroom. But after finding some Legos for him to work on Alex seems okay with me leaving. I am not too sure. Seems like I never meet people at the ARC that make me feel secure that Alex will be able to communicate his wants and needs. Anyway, I am of to Alamo PC to volunteer for 4 hours. Fixing computers. Afterwards I stop by Wendy's and get a drink for Alex and some nuggets. I decide to pick him up early.
They are in the sensory room at the ARC. This is an area of the gym that has been divided off and music is booming, the folks all have things to squeeze or hold or touch that affect the senses. Alex is squeezing some theraputty he seems happy to see me. We agree to go back to the office to see Grandpa.
By 3 PM he had crawled into his bed and is fast asleep. Oh well, enough of the blogging. Need to wake him up and get him some food. Otherwise he will be up all night!
Diastat Day
Well we should have known ... It seems when Alex has a great appeptite, wants to clean his plate or keeps 'saying' yes to whatever we offer, we know later he will have seizures. Tonight is one of those nights. He has finished two helpings of Mac and Cheese, 2 Beef Sausage and wants more.
Then he wants me to take him to watch planes. Of course on the way we pass Mac Donald's and he has to have a coke. He never drinks it but I know he enjoys handing them the money so I pull through.
That night he had multiple seizures and Amarycke gives him Diastat. Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.
Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.
Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.
Then he wants me to take him to watch planes. Of course on the way we pass Mac Donald's and he has to have a coke. He never drinks it but I know he enjoys handing them the money so I pull through.
That night he had multiple seizures and Amarycke gives him Diastat. Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.
Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.
Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.
Day at a time
Today was an early one. 3:15 AM and I heard whistles through the intercom. I know Alex is getting restless or about to have a seizure. I lay awake for the next 40 minutes, waiting. Then I hear shuffling footsteps. Alex is up, 4:10 AM. Hmm, seems very early.
But I have some work to do so Alex and I are out to the living room. He quickly becomes engrossed in his Lego puzzle. But after 30 minutes he is by my side pointing to the kitchen.
I try and get him to eat cereal but he refuses and points to the macaroni and cheese. Really? Mac and cheese this early? Yep, He eats a plate of Mac. And a little water.
Now 7:30 Am and Alex is loosing steam. He pulls everything off the bed and makes a ‘nest‘ for himself on the floor. But meds are at 8 AM. So a quick consult with Mom and we keep him up long enough to have meds
But I have some work to do so Alex and I are out to the living room. He quickly becomes engrossed in his Lego puzzle. But after 30 minutes he is by my side pointing to the kitchen.
I try and get him to eat cereal but he refuses and points to the macaroni and cheese. Really? Mac and cheese this early? Yep, He eats a plate of Mac. And a little water.
Now 7:30 Am and Alex is loosing steam. He pulls everything off the bed and makes a ‘nest‘ for himself on the floor. But meds are at 8 AM. So a quick consult with Mom and we keep him up long enough to have meds
Monday, August 04, 2008
Much better
Today Alex is almost back to normal.
He slept all through the night and seemed to have a wonderful day at The ARC.
At The ARC he is part of The Young Adult Community Integration (TYACI) program provides opportunities for young adults ages 16-26 to develop life skills, receive vocational training, and participate in community activities. Classroom activities are designed to help participants maintain and build upon the vocational, social, and life skills they learned in school.
Sunday, August 03, 2008
Long day
Today was an early one. 3:15 AM and I heard whistles through the intercom. I know Alex is getting restless or about to have a seizure. I lay awake for the next 40 minutes, waiting. Then I hear shuffling footsteps. Alex is up, 4:10 AM. Hmm, seems very early.
But I have some work to do so Alex and I are out to the living room. He quickly becomes engrossed in his Lego puzzle. But after 30 minutes he is by my side pointing to the kitchen.
I try and get him to eat cereal but he refuses and points to the macaroni and cheese. Really? Mac and cheese this early? Yep, He eats a plate of Mac. And a little water.
Now 7:30 Am and Alex is loosing steam. He pulls everything off the bed and makes a ‘nest‘ for himself on the floor. But meds are at 8 AM. So a quick consult with Mom and we keep him up long enough to have meds.
Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.
Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.
Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.
After lunch we tried to go watch the planes and trains but his drooling was just too much. He only lasted 45 minutes. When we got home he took a nap. But 4 PM he is back signing for me to take him to the planes. Off we go.
Not too many planes but one train. He signs ‘M’ for Mac Donald’s but I ask if he would rather get sausage from Blue Cactus Café. He shakes his head yes but then refuses to eat any. Oh well, into the frig for lunch tomorrow.
Now he is helping Mom vacuum and is bringing things to me at the desk. Hope he stays up for a while so he will sleep in.
But I have some work to do so Alex and I are out to the living room. He quickly becomes engrossed in his Lego puzzle. But after 30 minutes he is by my side pointing to the kitchen.
I try and get him to eat cereal but he refuses and points to the macaroni and cheese. Really? Mac and cheese this early? Yep, He eats a plate of Mac. And a little water.
Now 7:30 Am and Alex is loosing steam. He pulls everything off the bed and makes a ‘nest‘ for himself on the floor. But meds are at 8 AM. So a quick consult with Mom and we keep him up long enough to have meds.
Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.
Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.
Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.
After lunch we tried to go watch the planes and trains but his drooling was just too much. He only lasted 45 minutes. When we got home he took a nap. But 4 PM he is back signing for me to take him to the planes. Off we go.
Not too many planes but one train. He signs ‘M’ for Mac Donald’s but I ask if he would rather get sausage from Blue Cactus Café. He shakes his head yes but then refuses to eat any. Oh well, into the frig for lunch tomorrow.
Now he is helping Mom vacuum and is bringing things to me at the desk. Hope he stays up for a while so he will sleep in.
More seizures
Too early, 6 Am, but he is having seizures. Couple more since yesterday at dinner. He had gotten up around 1:10 AM. Marycke sensed it. Sure enough, he was out in the living room doing puzzles. Marycke took and hid all the keys. I got up with him for 2-4. Then into our bed. I slept in his.
Next morning I am off to fix a computer. Marycke reports he has had two more seizures and may not make it to Rosa’s for his haircut. Sur enough that is what happened.
When I got home around 1 PM, I was tired and took a nap. Two hours later I wake up o find his older sister home. Megan is coming to stay with us a for a month or so. Alex seems happy to see her.
Next morning I am off to fix a computer. Marycke reports he has had two more seizures and may not make it to Rosa’s for his haircut. Sur enough that is what happened.
When I got home around 1 PM, I was tired and took a nap. Two hours later I wake up o find his older sister home. Megan is coming to stay with us a for a month or so. Alex seems happy to see her.
Saturday, August 02, 2008
Seizure Day
Too early, 6 Am, but he is having seizures. Couple more since yesterday at dinner. He had gotten up around 1:10 AM. Marycke sensed it. Sure enough, he was out in the living room doing puzzles. Marycke took and hid all the keys. I got up with him for 2-4. Then into our bed. I slept in his.
Next morning I am off to fix a computer. Marycke reports he has had two more seizures and may not make it to Rosa’s for his haircut. Sure enough that is what happened. Before I left I checked in his room, and there he was, alseep in mid day. Note, he still brings the hedge trimmer to bed. He also has found my computer vacuum and takes that to bed too.
When I got home around 1 PM, I was tired and took a nap. Two hours later I wake up o find his older sister home. Megan is coming to stay with us a for a month or so. Alex seems happy to see her.
Next morning I am off to fix a computer. Marycke reports he has had two more seizures and may not make it to Rosa’s for his haircut. Sure enough that is what happened. Before I left I checked in his room, and there he was, alseep in mid day. Note, he still brings the hedge trimmer to bed. He also has found my computer vacuum and takes that to bed too.
When I got home around 1 PM, I was tired and took a nap. Two hours later I wake up o find his older sister home. Megan is coming to stay with us a for a month or so. Alex seems happy to see her.
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