Rough Night

Rough night. Lots of seizures.


Sleeping hard after seizure 

Planes

Sometimes after dinner Dad will take me down to watch the planes landing. But I have be be back by 8 PM for medicine and a bath.


Checking out the airport 

Me and Abby

Sometimes Abby lets me walk her up and down the driveway/ I'm not sure how much she likes it because she always tries to go back inside.


Walking Abby 

Cutting Thread

Many nights I go upstairs after dinner adn cut all of Mom's thread. I even get to do it at school sometimes.


Cutting Thread 

We had a good morning cutting yarn! He was cheerful and worked all class
time. Dianne Reser

Alex cut yellow yarn today for a long time. Thanks for sharing that he
might like that activity! Dianne Reser

Yes we have a three wheel bicycle plus a new adaptive three wheeler low
to the ground. I will check and see if he is riding it.
Lane


Cutting thread 

I am glad to have the suggestion of cutting thread. We can measure and
then cut in my class Thanks, Dianne Reser

We do the trike with Alex during APE. He likes to go as fast as possible, so someone has to hold on to the back of it and keep him under control.
Donny Horadam
P.S. Looks like you had a good time at the motorcycle show. I went on Friday

Seizure Day

Morning folks,

Alex will be a challenge today. Probably not a good day if any one his doing pre ARD testing.

We had a nice weekend. Lots of yard work. He liked scooping the dirt; cutting branches; using the hammer; all those guys things.

At night he pretty much is back in the sewing room cutting Marycke’s threads.


But last night he had 3 back to back seizures. It had been 8 days so we were expecting something bigger. However, he did not have any more.

This morning he was extremely hard to get up, fed and dressed. He will probably need lots of encouragement to get a task done.

Sunday at the TTM

On Sunday's Dad and I go the the Texas Trransportation Museum (TTM). They have a big train we can ride, over and over and over. Dad and I are Life Memebers.


Riding along at the TTM 

Inside they have classic cars and multiple HO train layouts. I like wathcing the small trains too. The Yardmaster's name is Alex also.

Even small trains are fun 

Saturday training

Another sunny Saturday watching the trains. Dad found us a new place to watch. Very nice.


Here comes the hot!

Nice Morning

Morning all,

Surprise surprise, Alex is up and fed and it is not even 8 AM.

He did not go to sleep till after midnight so I figured I would be dragging him out of bed. But nope. There we was ready for breakfast.

So now he gets to do a puzzle while we wait for the buss.

Thanks for all the feed back on Alex and bikes. We are just trying to get him some exercise without any injuries.

Have a great day.

Neal

Another Day at School

Morning gang,

Alex is up (just barely) having had a good night’s sleep. No seizures and he fell asleep before 10.

He seems tired this AM but has perked up with the arrival of his Grandfather.

Marycke will be getting Alex this afternoon as he has a Doctor’s appointment.

Hope all goes well.

Regards,

Neal

Alex did fine today. Ms. Ory

Motorcyle Show

The Southwest Motorcyle Show is here. Dad took me down to look at the cool bikes. And the show was right next to the train tracks.


The bike we want for me! 

Orange is my favorite color. This would be nice!

Orange motorcycle 

There are just too many to choose from.

Motorcyle Show

Every day andnight I take all these things with me. I have 3 openers now. And when Grandpa comes I get his open form the car. The vacuum hose is cool. Dad uses the lighters but I take himout of his desk. The popcorn bag is just in cae Dad wants me to pop some for him.


My personal stash

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.