Horseback

Finally, after nearly a month we got to take Alex for hippo therapy. He really enjoys the horses. It is cold but other than beign distracted by the trains he is doing well.

Seizure Saturday

Well for a change Alex had seizures on Saturday. He had a mild one around 2 AM and then a stronger tonic clonic at 7:20 AM. We held off giving him DIASTAT and he slept till noon.

Now he has been up enjoyimg a toasty fire while doing a puzzle. Neal and Alex have watched a little football, made and drank coffee and just picked up Sonic for Alex. He loves those foot long cheese dogs and tator tots.

Happy Thanksgiving

Alex enjoyed a great turkey day. He got to have both his sisters come home and then dinner with Grandpa.

Training

Yeah it is the weekend again. Love hopping in the van and chasing trains with Neal.
Sometime by the harley store as well.

Another Seizure Weekend

Another weekend. More seizures. This time not as bad as last.
He had 1 Sat PM, 1 Sun AM and another Sunday afternoon.
Fortunately no need for DIASTAT this weekend.

Strange this time was the Saturday seizure which was AT 9 o’clock while he was awake and doing a puzzle. These non sleeping sudden onset seizures always throw us off.

Anyway we expected to have him to school by 10:30 but he crawled back into bed and slept till 1:30. No school today.

Bowling

Alex seems well. He certainly had fun at bowling. Cool, silver medal! He came home off the bus and just talked and talked all afternoon and night. He is totally into wanting to be with his loved ones.

Doctor Visit

Alex had a good visit at the doctor. We still have some work to do on his hamstrings, but he enjoyed dinner with his Grandpa and then we watched airplanes for awhile.

ALex really enjoys doind puzzles in Neal's new 'techno DOCTOR' office. He can open and close the garage door while looking for the bus to come.

He seems ready for school and we hope all goes well.

Airshow and another Seizure Sunday

Sad to say it was another Seizure Sunday. Alex will not make it to school today.

We had a fun Friday night watching the Night Air Show out at Randolph. Alex really liked the old airplanes.

Then we spent Saturday working on computers and watching a few trains. Come Saturday night (11 PM) he started with his seizures. Back to back, very hard ones. So Marycke gave him Diastat. That lasted till 8:55 AM when he had them again. So more Diastat. Bigger dose. Fortunately he had no more and slept all of Sunday.

Once again it seems after adjusting the VNS he has increased seizures. July and August were great with only 2 per month., But now after the adjustment he is back to weekly. And they seem more violent.

He is still sleeping this AM and we hope he can get to school tomorrow.

Feeling good!

Alex had a great day. He got a haircut and then we went to Grandy’s for a little sausage and ‘plane watching’.

He slept well and is ready for school.

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.