Halloween

Alex had a fun time last night opening the door and handing out candy.
Hope you all had a frightful night as well.

He had a good night and ate well. He was ready for the bus. Forgot his wrist band but there is one in his backpack.

Seizure Sunday

Well no Alex at school this morning.

We had a pretty good weekend but this AM he had seizures and we had to give him DIASTAT.

Friday and Saturday were fine. We did lots of train and plane watching, even got to go by the Harley store again. Then Sunday 8 AM he had a single seizure. He got up okay around 10 AM and seemed okay,. We spend the day doing yard work and then some late afternoon train watching.


Come time for bed we ask he to go potty. And there, straining on the pot, he goes into a seizure. We expected more but nothing till 6 AM.
Hmmm.

Seizure Day

No Alex at school again today. Yesterday he had seizures at 5 and 8 AM. Then later more between 3 and 4 PM. We were able to keep him home and give him DIASTAT but that means he will not be in any shape to day to enjoy bowling. Maybe tomorrow.

Yeah for Linda and the kids for a Silver Medal!!! The NEISD Special Olympians in Team USA Basketball have won silver medals at the 2007 Special Olympics World Summer Games. The students will return from Shanghai on October 13, 2007 with their medals in hand. The students are Jennie Cardenas, Arturo Esquivel, Naser Harhara, Wayne Hoffman, Stephen Koehn, Ashley Muth, Jim Scarl, Joe Spade, Zack Thompson and Katy Walding. Coaches Donny Horadam and Robert and Linda Higgins (Alex's teacher) also accompanied the students to the games.
The 2007 Special Olympics World Summer Games were in Shanghai, People's Republic of China, and was from October 2 through October 11, 2007. The event marked the first time the World Summer Games was in Asia and the second time outside the United States.

Bowling

Alex had a good afternoon and a good night. He never got to sleep and around 11:00 PM pushed me out of bed and we switched places. But then he was fine the rest of the night.

This morning he seems a little crabby. More protests than we would have preferred.
But he had a good breakfast, French Toast and bacon, and was ready for the bus.

He did have a number of BIG sneezes this morning.
Have fun bowling!

Camp CAMP

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!

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.

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.

Neal

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.

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!

BOOM!

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.

I'm back

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

Seizures?

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.

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!)

Much Better

Alex had a much better night and day. No more seizures or after effects. He has spent the day with Mom and Grandpa. Neal has been out servicing computers.

Mom, that is Marycke, has her birthday today. Neal and her got to go out for breakfast and Alex signed a card for her. He used his standard Big A, Giant L, and X that goes of the page and then finally a tiny e, somewhere near the middle. I am just glad he can sign the card.

Didn't make it

Bummer, school called and Alex is down with the nurse. He has been lethargic all morning and just could no do any work. Marycke went over and brought him home.

Once home he continued to be act loopy and is very unstable. He takes a couple steps, leans left or right, bumps a wall and then laughs about it.

We finally got him to get back in bed and sleep for a while. He got up around dinner time and seems much improved. Hope everything goes well tonight!

Seizure Night

Well, Alex had break through seizures. We had expected something. After all it had been nearly 10 days.

11:53 PM he had his first Tonic Clonic (TC), starting on the right side.

Then 1:15 Am and he had his second. Marycke administered 20 mg of Diastat to stop the seizures.

This worked okay but he was too sleepy then next morning to go to school so he will spend most of the day in bed. With a few of his favorite things - hedge trimmer and extension cord.

Not our first choice but better than seizing.

Rain, rain, rain

No beach again. This has been a really wet Summer for South Texas. So Marycke and I spent the day cleaning out the garage. Alex helped where he could.

Around 2 PM, a sudden storm came in, and caught Alex out with his trucks and shovels. Drop drop drop came the rain and Alex started laughing. He was really enjoy the down pour. This is unsual as just 2 years ago he would have been streaming about his clothes getting wet. Now the rain come and he has no problem. In fact he goes in and gets the umbrella. Stands in the garage searching for more ran.

Too funny!

Later the sun came out and we got to go look for airplanes. There's one!

Root Canal

Alex had to visit the dentist today. He had to have a root canal and crown put on. Back in the end of February he stumbled while walking across the blacktop at school. Not knowing to put out his hands to break his fall he landed face first seriously damaging one or more of his teeth. Marycke went and got him and rushed him over to our dentist, Mike Majors. Mike put on a temporary crown. It has been very difficult to find a dentist that has an anesthesiologist on staff. But finally we are here!

The Doc was able to do the root canal and place a half crown on the tooth. He thinks the one to the left may also be cracked. On the plus side, they checked the rest of Alex's teeth and did not find any cavities. Perhaps it is all the saliva or that Alex does not eat sweets but we are thankful his teeth are okay. Sinc ehe was sedated, they went ahead and put sealants on the back teeth.

Seizure morning

Surprise, 7:30 AM and Alex just had a seizure. Not too often we get one early in the morning like this. But then again he had a strange night.

Alex got to have dinner with his Grandpa. Marycke and I went to the open house at Mac Arthur High School. There we met with Ms Higgins (pictured left) and visited with one of his classmates, Mason. There are 10 boys in Summer school this year. No girls.

Alex works on five different areas but doe not leave campus. He attends 8Am to 12 PM. Marycke takes him but he comes home on the bus. That rise alone is almost 1 hour.

With a 3 to 1 ration of student to teacher we are hoping he can advance more than during the year. They are working on writing and math this week.

Late Night

Man, 3 AM and Alex is still awake. I went to his room to sleep and have allowed him to crawl into my bed.

Marycke said she had already put him back to bed several times last night. I finally switched with him around 12 midnight.

Alex spend the evening with his Grandpa. They went to the Blue Catus Cafe for some BBQ as it is close to the train tracks and has good smoked sausage. Alex ate over 1/2 pound and wanted more.

But Grandpa had to get him hope for medicine. They never did see trains but Alex had fun anyway.