New Puppy

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."

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.

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

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.

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.

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.

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.

Horseback

Marycke and Alex are back from horse back. To Alex had a great time. After three years they got to do some trotting. Alex was laughing so hard it was hard to keep him upright. He keeps sign ‘more’ and making ‘horse’ sounds. But with the heat and time for the instructors to ‘recharge’. No horseback for August.

Port A pictures

More from the beach at Port Aransas

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!!

Frio Wedding

School is over. MAC has asked if Alex wants to participate. We tell them no. We do not think Alex recognizes graduation. And crossing the stage wit all those folks.. Oh well we know.

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.

Botox

Alex had his botox shots today. His physical therapist recommended 8 shots on the inner thighs to relax the tight muscles. This should help him stand more erect.

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.

Ice Cream

Ice cream! Yes Alex is back to liking ice cream. This week he came home from school with a note saying Alex had had an ice cream Sunday and really enjoyed it.

So that night we asked if he wanted ice cream. A strong quick shake of the head let us know he wanted ice cream!

Next morning as I was asking him if he wanted bacon - no; sausage - No!; he grabs my wrist and pulls me over to open the freezer. Once open he points down to the Blue Bell ice cream.

No way! Sorry my friend, no ice cream for breakfast.

He continued to ask for ice cream the whole week. He even once agreed to pull in to DQ for a Heath bar blizzard. It has been 3-4 years since he showed interest in ice cream.

To funny. Change the meds, change the appeal of various foods.

Whew!

Made it through a night without seizures. Alex looks good and ready for school.

We had a triple play weekend. A seizure Friday AM of course but then he made it to school. Then 11:30 and 5 AM Saturday so he got DIASTAT and slept till 2 PM

Then Sunday AM another one in the early morning, but he got up by 11 AM. Thankfully none last night so perhaps you will have a good day.

We did get to go looking for trains yesterday. But we only saw a couple stopped ones. But Alex did enjoy the cows and has decided to once again ‘talk to them’. Alex hangs his head out the window, says, ‘Uhhhhhhhhhh!” and then follows with a big ‘COW!’

Marycke and I have noticed with the change of meds Alex seems to want to communicate more. Then yesterday he mad coffee on his own (a little strong) and then spend most of the evening in front of the oven getting whomever would walk by, to help him set the timer. He would watch it count down and then 2-3 minutes later get the beep! Then reset it to go again. For sure he did that for more than 2 hours last night.

Double Seizure Morning

Well, no DIASTAT on Friday AM, but this morning he had seizures 1:30 AM and again at 6 AM, so Marycke has given him DIASTAT. Guess we will have a quiet day at the Sahver house.

Yesterday he had a seizure 6:34 AM but was up later and able to go to school. Once he got home, we got a visit from Jennie. She is his case worker for Hill Country Service. They provide him with his medicaid.

Of couse with those fingers forming an 'M' and pinting down I knew he was mor einterested in going to Mac Donald's then getting his picture taken.

Sunday training

Although very cold overnight, this afternoon the sun has come out and Alex and I enjoy watching the trains. They move rail cars of lumber every Sunday. So we get Mac Donald's and then hang for a couple of hours.

Doctor's visit

Today Mom and Marycke are off to see Dr. Szabo. They are going to review the weird blood levels. And as it turns out they decide to take Alex off Trileptal and put him back on Felbatol.

This will take nearly 3 months. We did have good control in years past. But then there were safety concerns.

So after 2 hours they finally got to see the Doctor for 20 minutes or so.

Seizure Day

Well just could not wait for his visit to the Doctors. Alex had a seizure over night (11:30)but just one. Marycke gave him DIASTAT.

Tomorrow we see the Doctor.

Helping out

Alex enjoys suing the blower or running the lawn mower. Here he is helping Mom with the leaves.