Sunday Seizures

Another weekend and more seizures. We have been trying to get over to COmmunity Bible Church to evaluate their Special Needs Bible Classes but Alex keeps having seizures. Alex's Summer school teacher, David, is also one of the teachers at CBC.

7:00 AM tonic clonic
12:00 Non tonic clonic, after having fallen asleep

Camp CAMP

Just got back from a great week at Camp CAMP. No seizures!!! And Mom and Dad got to have their first time together in nearly a year.

Children's Association for Maximum Potential (CAMP) is a non-profit corporation established in 1979 to provide a wide range of recreational, rehabilitative, educational, and respite services for children with developmental disabilities and their families. Central to each of CAMP's programs is the provision of medical support. This ensures that every child, regardless of the degree of his or her medical needs, will be able to participate in all programs. CAMP was founded with the express purpose of filling major gaps in services for children with developmental disabilities.

Back in the spring of 1979, Chris Johnson, a pediatric resident at the United States Air Force Medical Center in San Antonio, could have had no idea that performing a routine summer physical would change her life. Her young patient, Matt, had had a kidney transplant several years earlier. He also wore leg braces and a back brace. As Dr. Johnson conducted the physical exam, Matt chattered eagerly about the special camp for children with disabilities he was to attend that summer.

Chris Johnson dreamed of a camp that accepted all children, regardless of the severity of their disabilities. Her vision became a reality in 1980 when, with a grant from the Air Force Aid Society and the help of private donations, she founded Camp CAMP (Children's Association for Maximum Potential).

Camp CAMP

We increased Trileptal to 300 m 2x per day
Decreased Zonegram to 900mg AM and 600 mg PM
Neal did not want to make any changes since Alex had did so well at Camp.

You can see Alex getting taller all the time. Russ and Alex did so well, Russ won an award for Best new counselor of the week.


Here is Alex and Russ with other counselors. Russ is a ninth grader from a HS here in San Antonio.



He enjoyed the canoeing, archery and horseback.

Med change

Increase Trileptol 150 mg 2x per Day

Seizure

4:42 AM Tonic Clonic

Seizure Day

7 AM tonic clonic

One day at a time

Well Summer school did not last too long. Alex only made it for day 1.

Today he had 3 seizures and slept most of the day.

Oh well there is always Monday.

1:00 AM Tonic Clonic
5:55 AM Tonic Clonic
7:20 AM Tonic Clonic

Oh man, 7 AM is just too early for the bus. But seeing that I had seizures at 2:54 AM tonic clonic and another at 5:53 AM I'm surprised to be standing at all.

Mom is going to take me to Summer school for the first couple of days.


Ready for Summer School

Summer School

Got my UT whistle and ready for school! 

But school does not start till tomorrow.

Holiday Time

Even on Memorial Day, Dad will take me down to ride the train. It is located in a large Park. Next to the Zoo. I think it is the BEST!

After 3 days of 5-8 seizures, today I only had 1. Yeah!

12:15 AM Tonic Clonic

The most funnest train ever!!

My dog

This is my dog Abby. I pull on her. Sleep on her. And generally give her a hard time. But she still comes by and takes care of me.

Here is a picture from about 5 years ago.

(Third day in a row of multiple seizures.)


My dog Abby

12:45 AM Tonic Clonic
1:50 AM Tonic Clonic
2:44 AM Tonic Clonic
7:03 AM Tonic Clonic
8:37 AM Tonic Clonic
Took a break and then started agin that night
5:34 PM Tonic Clonic
5:39 PM Tonic Clonic
7:30 PM Tonic Clonic
11:20 PM Tonic Clonic

The Weekend

A great weekend with Dad. We went to watch trains, planes and found some guys 'moving dirt.'! What fun.

Of course I started the morning with 4 seizures. That made for little sleep for Dad. But he seems okay now.

Moving dirt. Cool!

12:35 AM Tonic CLonic
5:39 AM Tonic CLonic
5:47 AM Tonic CLonic
6:22 AM Tonic CLonic (gave him 15 MG Diastat)

Good friends

It's hot now. Summer is here. But our neighbor Charlotte is real nice and lets us go across the street and swim at her house. Sometimes she comes over to 'watch me' when Mom or Dad have to do out. The picture is from 6 years ago. But she still is just as nice.


Neighbor Charlotte

But now that school is out for the Summer, I start off with a day of seizures. :-(
3:05 AM Tonic Clonic
6:30 AM Tonic Clonic
6:46 AM Tonic Clonic
8:01 AM Tonic Clonic

School is out

Yeah, school is over today. I made it all four days.
The last weeks I have missed the last 3 Friday school days because of seizures.

Last day of School 

Thanks to my teacher Ms. Linda

Ms Linda 

And my wonderful aide Lyda that followed me all over school!!

Ms. Lyda 

I will have Summer School and camp CAMP this Summer. But for know I get to sleep in and do lots of swimming.

Yeah!!

Sea World

Today my HS class got to go visit Sea World. We saw Shamu and the Dolphins. I think I liked all the coke stands best.

I had a good night. No seizures. But this morning I had no appetite. I know it made my Dad sad I got on the bus without eating or drinking anything.

And now for dinner, whatever Mom makes I just want to eat cheese. Chunks of Cheddar cheese. Mmmmmmm!!!

A lazy Sunday afternoon

After staying up so late Saturday night, I just did not want to get up too early. I did have one seizure at 6 AM. But only one.

Dad was busy all day working on a slide show for church so we did not get to go looking for trains, plane or cows. Instead I curled up in his easy chair and took a long Sunday afternoon nap.

Mom and Dad thought for sure I would have a seizure. But I didn't.

Now it's time for bed and I am not tired. It's Dad's turn to share his bed with me. Mom had the last two nights with all my seizures. Hopefully she will get lots of rest.

Graduation

Today is graduation day for my oldest sister Megan. She has finished 5 years at the University of Texas in Austin, at the School of architecture. Mom, Dad and grandpa went to go see her.


Dad, Megan, Mom and Grandpa May 2005 

It would have been a long 12 hour day for me, so I stayed home. Dad's employee Haley came over and took care of me. She is great fun. I love doing floor puzzles with her. (Mom and Dad don't seem to get down on the floor to help me quite as often as they use to.)

And she has a neat car, with really loud speakers. She knows where ALL the McDonald's are and when the cool places are to watch the airplanes land.

Early, Dad too me to McDonald's for breakfast, then the bank and then to the car wash. I like the car wash!

I had a terrible night and morning. I had 4 seizures from 10-2, then Mom gave me Diastat. Again I starting with the Tonic clonic around 4 AM and had 4 more. Mom gave me a second dose of Diastat. Dad gave me my medicine at 8 AM (I've learned to open my mouth in my sleep!) then I was up by 8:15.

Cool. No more seizures for the day.

Another shaking Saturday

More seizures today;
12:20 AM tonic clonic
12:59 AM tonic clonic/ Diastat
3:30 AM tonic clonic
4:11 AM tonic clonic
4:37 AM tonic clonic
5:41 AM tonic clonic/ Diastat
7:12 AM tonic clonic


Sleeping after seizures 

Haley is coming over while Mom and Dad go up to Austin. So maybe it is good to get these out of the way now.

Late night

Just fell asleep but had a tonic clonic
10:40 PM

More to come tomorrow.

My Mom and Dad