Friday, August 15, 2008
Up early
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.
Tuesday, August 12, 2008
On our own
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
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!
Mickey D's
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
Of course, had to stop by Mac Donalds for a biggie breakfast. We could just eat pankcakes while watching the planes.

New Puppy
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
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
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
Sunday, August 03, 2008
Long day
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
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

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.
Thursday, July 31, 2008
Horseback

Sunday, June 29, 2008
Saturday, June 28, 2008
Port A

Off we go to the Coast! Okay they have sand dunes but not like these they showed in the brochure. A friend has lent us their house for the weekend. It is Marycke's birthday on the 29th. We get down in the evening but have time to take Alex down to see the beach. He is very excited. But we explain he has to go to sleep first.
Next morning Alex got up very early, 6:30 and started right away with - beach, beach, beach. Marycke got breakfast down him, meds, lots of SPF50 and then we were 'off to the beach.' I took him down and Marycke joinded us around 9:30.

We stayed till Noon. Drove around Port A. They have a Ferry connecting to Rockport. It is really fun, free and sometimes we see dolphins by the sea wall.


After the ferry we had lunch and a everyone took a nap. Alex fell right asleep. After he got up we went back to the beach for more swimming. He has a great time standing in the waves, point to the 3 rd sandbar and saying, 'beach!' . What he really wants is bigger waves.
We had seen lots of photos from Port A's annual Beach Fest but this weekend no one was building them like these.

Next morning Alex was ready for the beach!!

Saturday, June 14, 2008
Frio Wedding
.jpg)
Karessa Laxson, a neighbor’s daughter is getting married in Concan, along the Frio river. We have book 3 nights and the girls are coming down from Austin to join us. I got a Wii for father’s day and plan to bring it down. Maybe the boys of the girls can teach us how to play.
Alex had a good time. He did not really think the river was the same as the beach. We only got him down to the river 2 times. He did okay but kept saying, ‘beach’.
We did not last the 3 nights as night 2 Alex had seizures. We kind of expected it. So we packed up and headed back into San Antonio.
Tuesday, March 04, 2008
Botox
Botox Injections to Reduce Spasticity - from Boston Children's Hospital
A child with spastic muscles (tightness) finds it hard to move. As the child gets older, contracture (permanent tightness) of the joints, and deformities of the spine and limbs may develop. Usually spasticity is treated with physiotherapy, bracing, and surgery. Botox injections are another way to deal with muscle spasticity.
How does Botox Work? The "tone" of a muscle -- how floppy or tight it is -- depends on the nerve impulses (messages) which reach the muscle from the brain. These messages are carried by chemicals in the nerves to that muscle. Botox is a substance which blocks the chemical message before it can enter the muscle. In this way it prevents the muscle tightening which results in spasticity. Botox does not cure spasticity. The "block" is most effective 1-2 weeks after the injections. Three to six months later the spasticity usually returns. We do not usually recommend more than 2 Botox injections into the same muscle.
What are the Main Benefits of Botox? a) Botox injections offer a chance to see whether reducing spasticity in a muscle makes a big difference for your child. If it does, you may want to consider the more permanent solutions which surgery offers. b) Botox is also useful before a new treatment like a brace or splint. Bracing a relaxed muscle helps prevent contractures. This is easier than trying to "undo a contracture, therefore, younger children benefit more than older children.
How is Botox Given?Botox injections are given in a room in the Orthopaedic Clinic. The place where the Botox will be injected into the muscle is marked, by your doctor, with a pen. This area is covered with a cream called "Emla" which numbs the skin. The orthopaedic surgeon injects Botox through the skin into the spastic muscle fibres using a very fine needle. Most children do not feel pain or even remember the injections. A nurse will stay with you and your child until the procedure is finished. The procedure takes about 2 hours to complete.
What happens after Botox Injections? Your child can go back to his/her normal activities. Avoid bicycle riding or climbing --may be a little unsteady for a few days. Some children require a cast to help stretchout tendons and muscles. This is usually put on 1-2 weeks after the injections. Your child will return to his/her therapy program. The therapist will work on the particular muscle injected, as well as, encourage new skills.
Thursday, February 14, 2008
Ice Cream







.jpg)
.jpg)
.jpg)
.jpg)
