Airplanes

Ah, a bright Sunny Saturday. Airplanes flying overhead and Dad promised to take me later to see some more at the Airport.



Airplane!

No seizures today. And that is a good think.

Dr. Zabo

I had a seizure this morning, 8:22AM. So Dad kept me home from school.
But I was going to see Dr. Zabo this afternoon anyway, so I guess it does not matter.


Jo Ann puts the padle on my VNS 

He plans to increase my VNS deceive. They just place this 'paddle' over my VNS and then the Dr. makes the adjusts via his PDA.


Dr. Zabo adjusts my VNS 

Hopefully this will decrease the number of seizures. Here at the end of the month it appears I had seizures 20 out of 30 days. Bummer!

Rockin' and Rollin'

Today I had lots of seizures.
1:10 AM Tonic clonic
3:24 AM Tonic clonic
4:30 AM Tonic clonic

Than again over night:
10:30 PM Tonic clonic
10:55 PM Tonic clonic
11:28 PM Tonic clonic, gave 15mg Diastat

Seizure

Had a seizure 7:15 AM - Tonic clonic
But no more this day.

Special Olympics

Just came back from watching Alex in the city wide Special Olympics. He ran the 25 yard dash. Right to me. And then immediately signed - MacDonalds!

Linda,

He seems better today. No seizures last night.
He again was hard to wake up. Sleep walking to the table.

But he sat right down, picked up his fork and began eating strawberries.
Then he moved on to bacon, water and took meds without any resistance.
Hmmm

Hope you have a good track meet.
Regards,

Neal

Day 2

Another night without seizures. Always a pleasure.

Marycke did visit with some folks that have a son a little younger than Alex. He has been having daily seizures since September. And now there 19 year old daughter is having seizures and is in the hospital. So maybe 2-3 days a week is not too bad.

Linda,
Another night without seizures. That is a good thing!
Alex has just spent 20 minutes staring at his plate. Now he is eating some sausage.
He won’t get much before the bus.
Hope you have a good time at the Mall.
Look for Alex to display 3 fingers sideways as you go by Burger King in front of the Mall.
Given the choice he picks BK over Mac or Wendy’s
Regards,

Neal

Another Sunday

It's another Sunday morning of seizures.
They seem to come often on the weekends.
He had them at 8:15 TC and another at 9:00 AM.

But then he was awake and ready to go 'chase trains'.


Train watching is fun!! 

So who knows.

Ah rats!

We always hope for a 'good weekend' but alas he has had 2 seizures this AM.
6:40 AM, tonic clonic and the same again at 8:15 AM.

But by noon he is up and anxious to get out to Sonic or Mac Donalds.

Neal takes him over to FM 78, the Union Pacific RR refilling stations, and they chase trains for 3-4 hours.


Love those 'Hots!!' 

Day 2

Wonderful! Alex came home off the bus in a great mood.

He slept through the night without siezures.

That's 2 days in a row now.

Yeah!

He still is very tired in the AM. And there is no school tomorrow. So maybe he can sleep in.

A night of Rest

Thankfully Alex slept through most of the night. He only had one seizure, a little after midnight, but no problems the rest of the day.

We spent most of the morning staring at breakfast. He never did eat or drink anything.

But when the bus arrived, Alex jumped up, and trotted off to get on the bus.

I did post up video of his night time seizures. If you really want to see them just send me a note and I'll email the link.

Uggh

I'm tired. Alex is tired. Marycke is worn out.

I have been sleeping with Alex the last 2 nights. Yesterday he had 6 seizures and did not go to school.

To day, he has had 8. 4 from 11 to 1:30 AM at which time I gave him Diastat. Then after he started with the seizures, 6:50 Am to 9:30 - 4 more and Diastat again.

I figure one more round of seizures and we are off to the ER.

But Alex stopped. Spent the day drooling and basically lying around

I hope we have a good night tonight!!!

Day of seizures

No school today - for sure!!

Mom said I had 5 seizures over night.
12:08 AM tonic clonic
12:42 AM tonic clonic
6:06 AM tonic clonic
6:49 AM tonic clonic
7:25 AM tonic clonic

Happy Birthday

Hey, I finally made it to 18. I had a great birthday.

No seizures, always a good start, then breakfast with Mom & Dad. My big sister Megan was there too.


The Dad took me down to the Zoo to ride the train. We got to go two times.






Oh, then we went through a tunnel. It was very dark!



Hold on tight Dad! Here we go again!!


The I came home and worked on my dots again.


Then Mom gave me pie with candles. What no cake?


Lastly we got to have cake with all my friends at my church LIFE group.

Ah, candles and singing are the best.




Time for bed. School again tomorrow.

Happy Fiesta

Alex slept through the night (3 in a row) but did have a seizure this AM at 8:40. So I suppose we will stay home and then if he is feeling better we will go watch some trains and the planes this afternoon.

Various pollens seem rather high. I hope this is not the start of six more days of seizures.

San Antonio kicks off it annual Fiesta Week today. Alex's sister Megan plans to come down for the 'Oyster Bake'

Hey, who was the first person that said, 'Let's crack open this rock and see if there is something inside we can eat."

I think Megan comes done for the music and the crowds!!


and Alex's Mom is off to the Southwestcraft Center.

For our out of town guests, here are some pictures from last year's Fiesta.


One night we have a River Parade!


On another we have Old Night in San Antonio. The ladies have very colorful outfits.


Then we have the Battle of Flowers parade. Schools, Banks and many other places close for that Friday.


There are about a dozen Princesses in colorful gowns. All along the parade route people shout, "Show us your shoes!" Because under those gowns, most have on tennis sneakers.


Then on the last night we have the biggest Nighttime Parade in the US. The Flambeau Parade. Viva San Antonio!



I got to play bridge last night over at Dad's. Since Mom's passing I have been Dad's bridge partner. 12 of us play once a month. Dad was a good host!

Diamonds

No seizures yet this morning. Marycke and I both got a good night's sleep. Alex too!

Here is Alex working on his Dot Board. Why I took this picture was, for the first time I saw Alex arrange the colors in a complex pattern. Prior to this he only put them in a straight row. Then ever since school began last Fall, he started making squares and rectangles rather than lines.

Clearly to me this was a Diamond. Marycke thought it might be a square and he was just sitting 'off center'. At any rate, you can see the collection of electrical cords he drags around the house. He even takes them into his bed. Then on his shirt you see the results of his excessive drooling. This is very common after numerous seizures.



Alex with his Dot Board

Day 6

Well after 10 days of no seizures we are now on day 6 of daily seizures. I don't think he will be able to go to school today. He had a single tonic clonic at 6:45. Bummer!

4-12-05

Neal & Marycke,

I am sorry I just read your e-mail for today. Alex was very sleepy and tired yesterday after you brought him in. He did not eat much lunch, but he did perk up for the last period of the day. He seemed real thirsty though. Linda (Alex's teacher)

Okay another 4

Day 2 of seizures. This time Alex had four.

12:35 AM (2 back to back, 2 minutes each)
1:52 AM - gave Klonopin patch
2:50 AM
3:39 AM - gave 15 mg Diastat

Ah man, today was picnic day at school. Chips and hot dogs. 2 things he really likes.

Email to Linda, Alex's teacher,
Sorry to say, last night was much worse than yesterday.
So far he has had 5 seizures. Four last night and another one now at 7:40.
I thought I might bring him to the park (what time is that?) but I think he will be in bed most of today.

Oh well, hope to see you all Monday.

Regards,

Neal

Spoke too soon

Alex had four seizures today. Thus ends the streak of 10 seizure free days. Mybe the Oak mold jsut affects him a day later.

11 PM
12:25 AM
8:00 AM
8:41 AM

We tried a new 0.5 mg Klonopin patch you can put on Alex's tongue after the 1st seizure. Dr. Salinas said he had some success in this stopping seizures.

No this time.

Mold

Wow, a strong wind has blown in and the Oak Mold count is over 12,000! (For those without allergies, 400-700 is considered high). I'm having a terrible time but Alex does not seem effected. Hmm, there goes the idea that allergies and frontal changes trigger his seizures.

Alex seems to be doing fine.

Hey - 10 days - no seizures!!

Good Week

My 2 Aunts, Cindi and Sue have been down visiting their Dad, my Grandpa. Sue brought my cousin Rachael.

We had a fun time yesterday at Grandpa's garage sale. Then we went to Chester's for dinner. I had two BIG hot dogs.

This has been a good week. I have gone the whole week without any seizures.
Yeah!

Acutally after a rough 40 days, the last 2 weeks have not been bad. I had no seizures for 4 days, then 1 each day March 27-29. Since then (7) days, I have not had any seizures.

Most mornings I have gotten up on my own. About and hour earlier than usual. So maybe I am sleeping better during the night. Some Doctors say there is a relationship between sleep patterns and epilepsy.

Dad took me by the Saddlelight Riding Center to 'talk to the horses'. There are two train tracks close by so we always keep an ear open for the 'choooos'.


Neeeeeeeeeeha! I tell Dad how the horses talk with each other.

I am try to find Native or Shadow. They are two of the horses I get to ride.


Dad takes me by the Saddlelight Riding center. I get to ride every Wednesday.

Mom and I helped out at Grandpa's Garage sale. He still had lots of things to sell. My cousin Rachael was there also. She sold lots of the 'jewelry'.


Grandpa's garage sale.

Here's Alex

Linda,

Five days again. Wow!

You sure we can’t hire you to guide him through the weekends? Hah!

Anyway, Alex had a good night. We got to have dinner with my Dad and 2 sisters. They are here visiting my Dad.

Alex enjoyed Alamo café eating chips, cheese and numerous warm tortillas.

No seizures again. He got up on his own a little after 7. So we had lots of time to eat, do some puzzles and watch some trains on video. He ate all his bacon, sausage and a BIG pancake.

Hope you have a great day and that we make it through the weekend,

Regards,

Neal

Here is my bus. VJ always is there to meet me.

My dog Abby is not sure what I'm going to vacum.

Using the vacum is a favorite job of mine.