Training Day

Dad takes me to watch trains. Here we are on the South side where 2 trains come together. It is HOT today. Over 90 and still in March. Wow!


Hot day watching trains



Train! Bell!



Training with Dad

Then by the end of the day, we have to fill up for more gas. Dad lets me help.

Time to re-fuel 

Airplanes

Grandpa stayed and had dinner with Dad and I. Dad made corn beef and I had quesadillas. Mmmmm, I like cheese.

After dinner Dad took me over to the airport by the train tracks. We saw many planes and 2 trains.


Then Dad and I had to get gas. I like watching the numbers fly by.


I had a good night with no seizures. Dad said I snored a lot. He also says I talk in my sleep. This seems funny because during the day I really do not say much.

Bye Mom

Mom left for Michigan today. She is going to visit her brother Marc. Uncle Marc is sick with cancer. I hope he is okay.

So Dad and I are hangin out. We went to Luby's for dinner. I had three helpings of Mac and Cheese. Dad had chicken. I like that they give you free refills on cokes!

Also we sat where I could see the airplanes landing. So after dinner Dad took me to the airport to watch the planes land. We had a good time.

Seizures

I had a couple seizures tonight. They were tonic clonic but not very long. They were back to back around 9:35. About 7 minutes apart.

But all in all that is pretty good best the only seizure prior to these was on Feb 26th. 10 days! Yeah!

But the rest of the night went okay. I slept well and got up for school just fine.

Doctor visit

Today I got to visit the Doctor. I have been seeing Dr. Akos Szabo for the past few years. He helps adjust my medicine and VNS device.
Then his nurse Mary adjusted my VNS. It makes me cough a little.

Dad let me take pictures.
Here is one I tool of Dr. S.

Today Dad took me. We looked for helicopters but did not see any.

TTM

Zoo Train

Finally, Dad has finished his website work and we gt to go ride the train at the Zoo. I relly like it and would go 3 or 4 times if Dad would let me.





After we finsihed, we waited for the next group of people to rise the trains. I waved and most of them waved back.



Dad can take me any time he wants. I love this little train. I even like just watching!.


Train at the Zoo 

School Update

Alex did great on Tuesday. He put together a new 100 piece puzzle that I was having a very hard time helping with. Mostly he wanted to do it himself anyway. Alex made a splattered paint birthday card for Miss Connie's birthday which is coming up soon. The machine goes round and round, the student dumps in different colors and amounts of paint and then we sprinkled glitter on it. He liked it once he got going.
Dianne Reser

Morning all,
Alex seems a little tired, but maybe because we had a busy weekend. He did have single seizures Friday and Saturday nights, but none last night. Friday night we went along FM78 chasing trains.

Then Saturday, after the expected rain did not appear we went to the Zoo for a train ride. Then Sunday we went to the TMM. Right there on Whetmore at Wurzbach Parkway. I am Life member 599 and Alex is number 600. We joined about 12 years ago.

Another neat thing was Alex used a couplet on Saturday. He was asking for Coke but not using his words. So I ask him to "Use your words. Do you what a drink?" He shakes his head. "No use your words." "Say, I want" But this time he repeats "I want" then a pause, "Coke"

We have not had him say a couplet for a long time. Hope you all continue to work on that. Especially encouraging him to use his words.

Seizures

Well Dad finally got his bed back. They have been letting me sleep in their bed as long as I was not having seizures. It has been 15 days and I have not had a seizure.
But now finally, this morning, 8:05 AM and then latter that night, 12:20 AM, I had seizures.

So Dad kicked me back to my own bed. Bummer!

Dad thinks maybe I am 'growing up' and that is why I am having fewer seizures. I'm not sure because I do not remember them when they happen. Do I look older? My hair stylist Rosa thinks so. Dad has to shave me almost everyday.

Skating

We went skating with a bunch of other kids from school. His teacher said:

He loved the lights and music at the Skating Center. We pulled him
around on a skateboard (square) . He also had a good time eating at
Cici's Pizza. He may ;not eat tonight until late. Six pieces of pizza
and two helpings of salad plus two diet drinks and a great big
smile. Happy days for everyone.
Lane

Cold Weekend

Morning all,
Alex had a good weekend. No seizures.
We kinda of had a ‘guys’ weekend as Mom was in Abilene listening to daughter #2 sing in a Song Festival. So Alex and I spend most of Saturday and Sunday inside, by the fire, doing puzzles and watching tapes of our train adventures.
Saturday night we did venture out to Burger King and a little train chasing near Brackenridge. But it was too cold to have the windows down.

We finished off at HEB where Alex enjoyed pushing the cart, picking up pieces of paper and getting the receipt from the cashier. Where ever we go he enjoys ‘paying’ and really likes it when he gets change back. He has learned to give me the receipts and change while the bills get put in his pocket. (This works fine for Mom as she lays claims to all money that ends up going through the wash.)
Any way, have a warm and fuzzy day.

Here is Alex, his puzzles, his coffee and his dog, Abby enjoying our weekend fire.

Seizure

Antoher tonic clonic 7:20 AM

Night Seizure

So here I am getting ready for bed. I have showered, brushed my teeth and am now going potty.

Boom! I have a seizure. It is strong and hard. Maybe even carrying over to the 2nd one I had. Who knows. Fortunately Mom and Dad were there to take care of me.

10:17 PM Tonic CLonic
10:30 PM a sencone one. Did I never come out of the first one?

Seizure at School

School call Mom and had her come get me at school. They say I had a seizure areound 3:30. Just before I was suppose to get on the bus.

The seizures do not last long so I was okay we Mom got here. I even convinced her to take me to MacDonalds on the way home.

Diastat Day

What a terrible day. I had 6 seizures. After 4 Dad gave me Diastat. Then I had 2 more. I slept most of the day. I also drool a lot after the seizures.

Seizure

Last night, after a long day at school, and after Mom had given me a shower, I had a tonic clonic seizure coming out of the shower.

I only had the one around 8:30 PM.

Off to court

Today I got out of school early. Mom and Dad took me down to the Courthouse. They are asking a judge to make Dad my guardian. It has something to do with me being over 18.

Off we go to the courthouse.








Hey where is the judge? Mom could be my guardian too but then that would restrict the monies I might get through Health and Human Services or the CLASS program. So for now it is just Dad as my guardian.

Mom left Dad and I while she checked if Dad had taken her to the correct Court.
Ooops, wrong again Dad. We are suppose to be in Court #2, 1st Floor not 2nd.


So here I am before Judge Tom Rickoff. He seems nice. Has lots of questions for Mom and Dad. Thier friend Dewey did all the legal stuff.

I guess the deal is, now that I am 18, people could get me to buy things, sign up for stuff and then there is a medical thing called HIPPA. Without a guardian Mom and Dad could not tell people how to help me.

Along with Dewey working for my parents, I get my own attorney. His name is Mike. He is very nice. Just like Dewey.


Me and my attorney, Mike


Dewey talks things over with Judge Rickoff

Finally Dad let me take some pictures.
Here is the one I took of Judge RIckoff. Not bad, eh!

Happy Monday

Alex had a good trip to Abilene to see sister Malinda.. He did have one seizure at the hotel. But it was at night and did not seem to bother him during the day.

Back home we had a good Sunday and he slept well last night.

This morning he was up early! 6 AM. We dropped off Mom and went to Mac Donald’s for pancakes and sausage. Then to Ancira Pak to watch the planes take off. And hopefully catch a train.

No trains! Rats.

Grandpa showed up around 8 AM. They played for a while.

So needless to see he did not expect this to be a school day. He was not ready to get on the bus.

We finally have a court date for Alex’s guardianship. Our friend Dewey is helping us get it. It is this afternoon at 3 PM. So I am going to pick Alex up around 2 PM. Let me know where he will be or I will just come to the Special Ed office.

Midnight seizures

Another night. Another seizure.

But only the one. I guess we will still get to have breakfast with sister Malinda.
Yeah!


Then it is the long road trip home to San Antonio. Takes about 4 hours. I look at all the cows and sheep.

No trains!

sister Malinda with her Professor

cutting at ACU

School time

Morning all,

Alex had a good night, dinner-puzzles-bath-sleep

No seizures – Yeah!

This morning VERY hard to pull out of bed. He did finally eat his waffles and sausage. And I got him to drink half a glass of coke. Maybe the ride in will wake him up more.

We are going out of town tomorrow so Alex will sat y home with us.

Hope you have a grand day.

CLASS

Alex had a great night. He ate a good dinner and then did puzzles by the fire till time for the showers.

No seizures. A little hard to wake up but he ate well and drank a little coffee.

Hope all goes well today.

Alex has qualified for the CLASS program. This will allow him physical therapy, occupational and perhaps in home assistance with self-help items. We even hope to get approved for horse back riding therapy again.

If you:

know about CLASS
Have recommendations for therapists working with CLASS
have suggestions for areas Alex should work on

Please send us your input.

MLK Day

A day off from school, but I have a couple seizures and send a quiet day at home.

12:15 AM TC
6:25 AM TC

The TTM

This the the main engine at the Texas Transportation Museum (TTM). Dad and I are life members. Every Sunday they offer train rides on a short 1/2 mile track. It is great fun. Especially when the engineer blows the whistle.


Train rides at TTM


at the TTM

Inside they have a large scale HO track layout. It is really cool. A young man also named Alex was the station master. He was controlling 5 trains!


HO trains at the TTM

Loving those puzzles

Everyone knows I love doing puzzles. When younger I always did themon the floor. Now I do them at the table or maybe a desk in Dad's office. This one I got for Christmas from the folks at my school.


Almost done. Thanks Ms Perkins!


Hmmm, looks like Scooby Doo

Seizure night

Had a great day at school.
Enjoyed the bus ride home and seeing grandpa.

Here he and I are at Christmas time.


Dinner went well. Dad and I did puzzles.

10:40 PM just ater falling alseep had a seizure.

Training near the airport

Watch trains near the airport

Blowing leaves

School

Last night Alex decided it was cool enough for use to have fire. So out came the Duralogs. He really seemed to enjoy that.

Alex had a good night and got up on his own this morning. Pretty early, before 7 AM.
He has eaten his waffle and sausage and is watching the CAT machines tape.
He still likes to steal my coffee and use the opener to open and close the garage door.

A nice advantage of having Alex up early it allows him to dress himself. He took everything off himself and was able to get his shirt one and both socks. The jeans were still a little harder. Still can not tie his shoes nor really get them on. But it is a start.

Still plenty of time before school so Alex is emptying the washing machine. Loading the dryer. We agree to wait till Mom gets home before we start the dryer. Now we are off to the sink to load the dishwasher. Alex sure does like to help around the house.

Alright Here comes Grandpa to walk my dog, Abby. Every Friday he comes to our house around 8 and takes Abby for a walk. My Dad walks everyday but says the dog is too slow a walker to come with him. I guess it is time to go wait for the bus.

Motorcycles

Alex had a great night. No seizures.

He woke up early again. This time 5 AM. So I put him back in bed but that only lasted till about 6.
So I let him sleep with me till 7:40.

Then he was up again. All smiles. Ate sausage and waffles. Had a little jo and was ready for the bus.

Maybe it is the big game tonight that has him all smiles. I doubt it but hopefully things will continue well.

Regards,

Neal

Mr. Shaver,
Sounds like you had a good Christmas. Especially the motorcycle part. I have a bike and Alex has enjoyed sitting on it a couple of times during P.E. One of my peer tutors took a picture of him on it. I will try to send it to you.
Donny Horadam

School resumes

Happy New Year. I guess Alex is starting off the 2nd half of the school year on an up note. He got up on his own, about 7 AM, has eaten well, had some coffee and is working on his puzzle. Yeah no seizures last night.

I say that because he has had some unpredictable seizure activity. On Friday the 30th, we were at Willie’s having dinner, and Alex had a seizure there at the table. He seemed okay afterwards. But then that morning, about 1 AM, he had another. Yet during New Year’s Eve day he seemed okay. His grandfather was watching him that night, and sure enough, he had a seizure around 8:30 PM. This time they were by the airport watching the planes land. And Alex landed on the concrete. You can see the bruise on his forehead and knuckles.

So we were prepared for more on the 1st and 2nd. But he has not had anymore. Yeah!

We did have a nice Christmas holiday. The cool weather prior to Christmas allowed us to make several fires. Alex has discovered Duralogs! He thinks they are great. And he encouraged us to burn one nearly every night over the holiday. He also got to have both of his older sisters home for Christmas. They seem to have great fun. Alex would get upset when the girls went upstairs to bed or out for a little clubbing. But he really seemed to enough them.

For Christmas Alex got more puzzles, (thank you all for the ones from school) clothes and Tonka toys. He really enjoys playing with the Caterpillar products. He also has enjoyed motorcycles. And this Christmas I got lessons to get a motorcycle license. If all goes well maybe Alex and I will be able to do some biking.

Have a great week.

Watching planes and trains

GO! Move that train!