TTM

Dad and I are Lifetime Members of the Texas Transportation Museum. They have cars, trucks and trains! Their website is: http://www.txtransportationmuseum.org/

Here I am watching the HO scale trains


Then it is out to ride the train. I like the open flat car. They also have an enclosed cabbose.


Too much fun!!


Mom is coming back in a couple of days. Yeah!

Ms Carmen

Now that I am 'an adult' the State of Texas provides Mom and Dad with several hours of respite care. Today I met Carmen. She will care for me for the next few afternoons since my Mom is in Michigan and Dad has to work.



She has a great dog named Pirate.



Also she has a very nice daughter, Naomi. We do puzzles together.

Schools Done

School is done and Dad has just picked me up from Carmens. We are going out on a Tueday night to MacDonalds and to see some trains. Two of my favorite things. Here is a new thing I like - a MacDonald's Bug Car. I guess traffic is bad enough downtown San Antonio that the area MacDonalds delivers to some of the office buildings. Cool car!!


Once inside I ate a cheesburger, fries and drank some coke. You can see my bruise is getting a little darker.

School is out

Boom! Yes I got a big bruise on my cheek. I guess on the last of school, we were having a BBQ and I fell asleep on the park bench. From there I rolled off hitting the pavement. Ow! It really is not as bad as it looks but it scared Dad a little. And of course this is the first day Mom is on vacation and I get a little hurt. Dave, my teacher, felt real bad but I am alright. They say I was having a great day. Guess I just up too early and then got sleepy. It may also have been the result of the increases in my medications. Anyway, I am okay.

Trains

School is coming to an end. We made it to the Beach once and now Dad and I get to go look for more trains. We even got to ride the minature train at the Zoo!

Med Change

Today we changed medicines, increasing the Trileptol. Alex seems much more sleepy.

Seizures

Two early morning seizures, even with a day off from school....

5:55 AM tonic clonic
7:25 AM " "

Change

Decrease Trileptol to 450 mg bid

Sleepy

One tonic clonic this AM 7:40 AM
Alex seems very sleepy. Meds?

Bummer

It has been a while, but we have once again had to give Alex Diastat to stop his seizures. He had tonic clonic seiures at:
4:30 AM
7:50 AM
11:00 AM

And we also changed his meds with
Trileptol going up to 600 mg 2x a day
Zonegram decreasing to 2600 mg 2x a day
Klonipin and Depakote remain the same

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!!