Sunday, July 22, 2007


Alex is off to Camp. For 15 years he has gone to Summer camp for one week in July. The camp is located Northwest of San Antonio in a little town called Center Point. CAMP, or Children's Association for Maximum Potential, enables children with disabilities to thrive in a recreational environment where safety and nurturing are primary.
CAMP continues to provide summer camp experience for children with no verbal communication or self-help skills or with need for multiple medications around the clock.
In order to allow regular care providers a complete respite experience, we accept the siblings of our campers CAMP was organized in 1979 and is accredited by the American Camp Association. more
Alex seems excited to meet his new counsolers Chrisey and Tyler. She is from San Antonio and he from Houston.
Camp CAMP has a bed capacity of over 300 overnight guests. CAMP's 55 acres include an archery range, dining hall with kitchen, outdoor sports court, medical library, swimming pool, several covered classrooms, and an activity pavilion. Campers sleep in large air-conditioned and wheelchair-accessible cabins.

Campers are assigned to tribes based on age and gender. Each tribe has an experienced supervising Chief Cabin Counselor (CCC), an Assistant Cabin Counselor (or A1), and 8-10 additional counselors. This year Alex is a pawnee (17-21 year old) and can attend for two more years. They have now started an adult camp, so Alex may still be able to attend as he gets older.
Here Marycke checks off with his counselors what Alex has packed for camp. Later we will meet with the medical staff and review his meds. Everyone of course is hoping he will have a GREAT week with no seizures!

Friday, July 20, 2007

Much improved

After no appetite last night, Alex has been eating everything in site. Just for breakfast he has hand 6 sausage, coffee and two crepes. He slept well. No seizures. And did not get up till 11 AM. He still gets his medicine at 8 AM and I am always surprised we can get him to 'open', swallow two teaspoons of apple sauce (which contain his meds), and then roll back over and go to sleep.

Now we are having a down pour again. So Alex is out in the garage, sitting in his cahir, sipping coffee and watching the rain come down.

Thursday, July 19, 2007

Night Seizures

It's early Thursday morning (1:06 AM) and Alex just had a seizure. It was not very long nor very hard. So I figure we 'missed a bullet'.

But then comes the second one (1:16) and a very hard seizures. So I pull back the sheets and wait for it to end. I lasted about 4 minutes and then came the tell tale sign of Alex emptying his bladder. This is not unusual but sometimes we are able to get him up and to the bathroom before he wets the bed.

But not this time. So once the seizures stop I have to try and strip him down, give him a sponge bath, strip the bed, redress him and put on new sheets. Whew! Sure miss Marycke. She has gotten very good at doing this.

Now the bad part is usually he is in his bed which is only a double but I had him sleeping with me in a King. So the bed mat cannot be cleaned in our washer dryer. Oh well, off to the laundry mat tomorrow.

I did have to give him a 20 mg dose of Diastat. But then after that he went into his 'antsy' 'walk about' routine. This is where Alex is disorientated and will not lay down. He gets up and starts walking the halls. All the way out to the livingroom, then back, then to his room, then to Grandpas office. After 30 minutes of this I get him to lay down and he falls asleep (thank you Diastat).

I too get to sleep and how he does not have a second seizure.

Yeah he made it through the night without a second seizure.


Wednesday, July 18, 2007

Looking good!

Much better night. We got to go to Joe's Crab Shack where we could have a a little dinner and hope to see a train come by. Alex did very well eating salad, mac & cheese and of course enjoying a coke.

I tried to get him to eat some coconut shrimp but ne begged off. Alex loves to give the waitress his empty cup for a refill. We did see a train come by! And when all done Alex got to pay. He gets fired up when the wait staff gives him money back.

Tuesday, July 17, 2007

Photo Blog

Alex and I shared Mac Donalds at the office.

Driving with Dad looking for trains.

Hope she comes soon so I can pay.

Alllllllright! She gave me money back!


More thunderstorms. Wow this has really been a wet Summer. Usually by now we are under water restriction. But so far I have not had the automatic sprinklers on, nor have I lowered my lawn mower from the tallest setting.

I mention this because Alex has really been enjoying the rain. He still sleeps through the night thunderstorms but those that fire off during the daytime bring a big smile to his face. He even likes to go open the garage door, pull up a chair and just watch it rain. Sometimes for nearly an hour.

Today is a special day. Marycke and Malinda have left for Ann Arbor to visit family and friends as well as attend th annual Art Fair. So it is just the 'boys' for six days!

Today Alex was very sleepy so he did not make it to school. He does not seem to be having the petite mal seizures we have seen over the past 2-3 days. His balance is good and he has a great appetite. Now he is helping Grandpa with the typing.

We just got back from watching trains during our lunch hour. He got nuggets, fries and a Diet Coke and off we went to Whetmore along the train tracks. There we also can watch the planes take off and land.

Now it is late afternoon. Alex is enjoying a cup of Joe and seems to have made himself right at home at Grandpa's desk.

Monday, July 16, 2007

I'm back

Got my camera fixed today. Time for Alex to resume taking self portraits. We must have nearly 500 so far.

Friday, July 13, 2007


Alex seems really tired. I'm not sure he will make it to school next week. He has been going to Calidad during the day but I think will stay home this Friday.

Calidad is a Summer program that watches 30-40 young adults during th e day. Marycke has been bring him down around 9 AM and then picks him up about 3 PM. Today he went right to bed.

Thursday, July 05, 2007

Seizure Night

Well the 4th has come to an end. We had more rain here in SA but the dry days will come.
We took Grandpa out for burgers since it was too wet to grill. Alex had a good time and hot dogs and fries.
Then last night he had seizures (2:10 and 3:20 AM). Marycke gave him 20 mg Diastat. That of course led to deep sleep. We really had to 'shake him awake' to give him medicine at 8 AM. Then around 8:30 he had another seizure. Marycke gave him 10 mg more Diastat. No more seizures.
Around 2 PM, Alex staggered into the office, found his Grandpa's lap, and climbed in. They rocked for awhile. Then Alex was ready for some coffee.
Along with coffee Grandpa made him sausage and pancakes. Alex ate it all!

He continued lethargic the rest of the day. By dinner time he was ready to help me fire up the grilled. We asked Grandpa to stay again for the July 4th meal we missed because of the rain. Everyone enjoyed Bratwurst, corn, potato salad and watermelon. Alex ate well.

(Corn eating from the earlier years!)