Morning Moanings

It's early on a Saturday morning. Nearly 4:30 AM. I am working in the offie and as always I have the intercom on. I here Alex russling in his bed. It is getting louder and louder. Now he is snorting. Bummer! First day of the CHrsitmas holiday and he is having a seizure. I am up out of my chair, through on the hallway light, trying to decide whether to wake Marycke or allow her to sleep. Into Alex's room I barge, throw on the lights, and whoa! He is sitting up in bed, no seizing but laughing. I guess he had passed some gas and was laughing - not seizing. So off go the lights. He gets a little back rub from Dad. And I am back in the office. Thankful that there was no seizure and we all may have an enjoyable Christmas. We hope you all have a great time as well.

Seizure Monday

Well we made it through the weekend but now 5 AM Monday morning and Alex is seizing. He had crawled into bed around 3:30 AM. I tried to get him to go potty forst but he refused.

So of course now he is seizing and wetting the bed. Looks like another weekly trip to the Wash Cycle to wash the kingsize mattress pad.

Marycke gave him 20 mg DIASTAT. No more seizure till, 3:00 PM. Hmm, that is unusal. So he gets another 10 mg.

We got him dress and hopedd he would be ready for school. He had slept through the night and remainded home all day Tuesday.

Another Monday Moaning

Well we made it through the weekend - no seizures. BUt 4 AM this morning he had another seziure. Marycke gave him 20 mg DIASTAT. No school.

We did have a fun weekend watching trains and planes. It was a nice December, South Texas Day, you know, mid 70s. So we went to the TTM and rode the train. Alex also likes the scale model trains inside.

But I guess weekly seizures remain the 'name of the game.'

Making Coffee

Not only does Alex like to drink coffee, he enjoys making it as well. Here is the video.

Nice week

Alex is doing well. He has been sleeping in his own bed. Eating well and generally been in a good mood. He did have nose bleeds Wednesday and Thursday but they were easily stopped.

Nose Bleed

The weather must be getting cooler and dryer. Alex has had several nose bleeds. Here is his note from school.

Neal & Marycke,
Hi, Alex has been working great at McDonalds and MacArthur Park Lutheran Church. Today he had a nosebleed and got some blood on his clothes. I wanted to tell you so you would not worry. Alex has been asking for a coke at the MacArthur Park work site every time he is there so we are working on using vending machines for our break.

Enjoy this great day,
Linda Higgins

Eye Fluttering

Alex continues with weekly seizures. Usually Saturday night or Sunday AM. Quite often while watching trains or doing a puzzle, he will stop, flutter his eyes, and then resume what he is doing. We are checking with the Doctor to see if these are peti mal seizures. You may be able to see it here on this video.

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.

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.

Diastat Day

Well after nearly 10 days without a seizure, Alex did break through last night. Marycke reports he had a seizure around 4:30 AM. As seizures go it was fairly mild. But then at 6:30 AM he had a very strong tonic clonic. So she administered 20 Mg DIASTAT.

Lately (last 4 times) this new routine of administering DIASTAT after the 1st seizure seems to have helped Alex in his recovery. In the past we had always waited 4-5 seizures and then given DIASTAT. The of course he was tired or wasted the rest of the day. We had always assumed that was the after effect of the drug. Now we think it was the strain on his body that caused Alex to sleep for the next 20-30 hours.

Hopefully this will clear his system for another 7-10 days. If all goes well we plan on a trip to the Texas coast. Alex loves the beach!

Grandpa

Alex is still enjoying the Summer break from school. He is sleeping in till 11-12 o'clock and then gets to go with Mom to look at 'cat machines', eat at Wendy's or today, go with Grandpa to the Zoo train.

Alex still loves trains. And today Grandpa took him for a couple of train rides. Then they went to Whataburger for chicken strips and cream gravy. Funny how Alex will eat different foods when he is with different people. We notice too, at school, the aides will mention Alex ate this or tried this, but at home - nope! No tacos, no Jello... who knows.

Anyway, we are glad Grandpa can be here. Alex really enjoys his time with him. Today is day 10 without a seizure. So as usual he will sleep with either Marycke or myself. It seems he has most of his seizures at night. We are hoping the weather holds and Alex gets past this next seizure so we can take him to the beach Saturday.

Tonight he watched his train tapes, did some puzzles and had lots of decaf coffee. He enjoys makin and drinking coffee. We did ask the neurologist if caffenine had an effect on seizures. But he was not sure. Oh well, love that complex brain!

School Day

Alex had a good night. I think he saw a train on the way home from school yesterday as he kept telling me, 'Bop!' 'Bop!' which for him means 'Stopped,' So I figured he saw a stopped train.

Anyway, no seizures again. He got up on this own this AM, about 1/2 hour earlier than normal. So he has had a good breakfast of Crepes, sausage and coffee. He has already gone potty. In fact again he got up, went potty and then came looking for me. He normally waits 2-3 hours after getting up. Hmmm...

Anyway, I hope you all have a good day. On a sad note, last Thursday we had to put our twelve year old Golden retriever, Abby, to sleep. She had an inoperable uterine infection. Alex has not seemed to notice she is no longer here. But of course we can really know what he knows.

Have a great day. Hope all goes well.

Regards,

Neal

Bum on the Head

Morning all,

Alex had a good sleep. But just after dinner he did bump his head. So he will be wearing a band aid over the right eye.

So just after dinner he walks up to the table saying, 'Neal' and holding out his hand with blood on it. The Marycke sees the blood pouring down from the eyebrow. Being non verbal we can not know from Alex what happened. I did see a few blood spots on the garage floor so I figure it occurred out there. Just like Steve Nash the other afternoon against the SPURS a minor gash produced lot of blood.

But as usual no crying from Alex. Just a big. 'Boom'. Sound familiar Linda?

Anyway, he seems fine this AM. Still no seizures. He ate well and smiled when the bus rolled up.

Oh yeah, I took this last night right after it happened (you can see the blood still on his hand) because this is how Alex tells us he needs a band aid. He points to the back of his had. Notice he is not pointing to the gash over the eyebrow. So when he does this at school something must be hurting somewhere.

Have a great day.

Regards,

Happy Monday

Morning all,

Alex had a great weekend. No problems.

He was restless last night and difficult to get up this AM. But he is enjoying breakfast and seems ready for school.

I'm off on another early morning computer call so Grandpa will get him on the bus.

Hope all goes well.

Regards,

Picnic at school

Morning all,

Alex had another good night. No problems.

He enjoyed doing puzzles and sipping a little decafe. Of course he first had 3 bowls of salad and 2 kielbasa links for dinner. Wow! Is he eating lunch okay?

How many days left of school and what does he spend daily on lunch? I figure we need to send in some lunch money.

The buns are in the backpack. What time do you all expect to get to Madison?

Hopefully, I will see you all tomorrow.

Regards,

The day after

Morning all,

Much better. Alex is on the way.

Surprisingly, Alex got up on hi own, about 1 PM yesterday. I thought for sure the Diastat would knock him out for the day. But now we are hoping the early Diastat reduced the number of seizures which allowed Alex to recover quicker.

He slept well and we hard to wake up. But he has had a good breakfast and is on his way.

Hope all goes well.

Regards,

Seizure Day

Morning all,

Alex had a good weekend but then had seizures last night and this AM.

So no Alex today.

We are trying new procedures and hope not to repeat the last two experiences of multiple seizures.

We shall see.

Hope you all had a good weekend.

Regards,

Nice Day

Alex had a good night. No problems. He liked all the 'Booms' but then slept through the worst part of last night's storms.

He got up on his own again this AM. We worked on him dressing himself and then he had a good breakfast.

Grandpa got him on the bus and I guess by now he is with you all.

For tomorrow, Marycke will bring lunch for Alex. Thanks Lane.

Today she will pick him up for horseback.

Regards,

Much better

Morning all,

Alex had a great night. He really seems back to normal.

We went and watched planes last night. And all day he has been asking about trains. When he says ‘Bot’ that means the trains are ‘Stopped’

He got up on his own this morning. 20 minutes earlier than normal. So we had a nice relaxing breakfast, coffee and even time for puzzles.

Hope this makes it to everyone I am trying out Marycke’s new laptop.

A slow this AM

Yeah, Alex made it on the bus.

He seemed to improve late Friday and by Sunday AM was pretty much himself. However his sleep pattern was way off. Alex was staying up to 1-2 AM. Friday he did not go to sleep to 5:30 AM! He continued with weird sleep patterns, even through last night.

So this morning he was hard to wake up. And even harder to dress. Each time I would put on one sock or get one leg through his pants, he would slide off my shoulder and be back flat on the bed, eyes closed.

He slept ate through 2 waffles and some sausage. But after two cups of coffee and some squawking at the dog, he was ready to get on the bus.

Hope all goes well today.

We did get a phone call from NEISD about papers being sent home with our child. Did we miss something?

Have a great day

Still recovering

Morning gang,

No Alex again. He never went to sleep last night. Still up doing a puzzle right now.

I took him to the table to eat but he refused. Also, every 2 -3 steps he takes, Alex loses his balance and has to grab the counter or wall.

So I figure no way he should go to school. Marycke is checking with the Doctor for ideas.

Sure is a high price to pay for 15 days without seizures. Hope he sees you all Monday.

Regards,

Seizure Day

No Alex again,

Last night he had a rough time getting to sleep. So I am letting him sleep in.

Yesterday he spent most of the day sleeping and drooling. We did get 3-5 minute periods of lucidity but then he would try and stand up and then stumble around, then back to the floor.

I figure with you all of campus, you did not have to deal with all that. So he will stay home another day.

Hope you are having a good time.

Regards,

Still recoverying

Close, but no cigar!

No Alex again today. We got him up and to the table but now after 30 minutes he has only eaten 1/2 of one French toast, one bite of sausage and dropped 2 spoons of medicine on the floor.

So, it's not fair to send him in for your field trip. Maybe tomorrow will be better.

Have a great day.

Regards,

Happy Birthday

Well Alex turned 20 today and spent the day having seizures.
I suppose we will just have to plan on another day to celebrate.

Major Seizures

Morning folks,

Sorry to report, no Alex. We did go nearly 2 weeks without a seizure but all day Sunday he more than made up for the missed ones.

Saturday night while Marycke was out, Alex came to me in the office and said 'Yuck.' I responded, 'Ut oh, did you go pooh? Let me check you pants.'

This is because usually if he does not wipe himself and gets some on his short he tells me, 'Yuck.' But not the shorts look clean.

Again Alex gets closer and says, 'Yuck.'/ Okay lets go check. We walk back to the bathroom and - he has thrown up. Now Alex does not do this too often so I guess he really does not know what to do when he feels sick. But he did help me clean everything up and seemed okay.

An hour later Mom comes home. We tell her this story and all seems okay. Another hour later and he hear an 'unusual noise' in the hallway. Sure enough Alex has tossed his cookies again. 'Yuck.'

Anyway, probably more than Marycke want me to share, but later that night, around midnight, he started having seizures. Fast forward to morning and I learn from Marycke that he has had six seizures since midnight and wet the bed two times. So we transfer him back to his bed and start the wash. An hour later he has another, an another, every hour for four more hours and another wet bed.

We had already given him 2 Diastats so the ER was the next choice. Finally, 5 PM Sunday was the last seizure but he is still sleeping this AM.

Tomorrow he turns 20. And you all have a field trip. We expect to make it. Marycke wanted to make cupcakes. Is that okay? If so, how many? Can we include candles since it will be off campus?

We thought everyone was going to be asked to bring something. We do not remember getting a note. Anything else we can bring?

Enjoy your day we will see you tomorrow.

Regards,

Tuesday

Alex had a good night.

He did not like doing physical therapy yesterday afternoon. With the ice storm it had been 3 weeks. I suppose maybe he was thought it was over.

He has had a good breakfast. Really seems to enjoy that Raisin French Toast. Uhmm...

We have been talking about the Stock Show and Rodeo. He seems interested in the all the cows coming to town.

Enjoy your day.

Seizure Night

Cowboy Breakfast

Morning gang,

Have you had your tacos yet at the Cowboy breakfast? Brrrrrrrrrrrrr.

Well we made it through day 2 of Alex's recovery. We had a good night. He slept well and this AM he is up eating waffles and sausage.

Thanks Lane and Nancy for the notes. It is wonderful to know what he is eating at lunch and what he does during the day.

Mom is in Michigan so Alex got to choose dinner. And surprise, surprise, it was Mac Donald's for some Nuggets and then a little hangin' at the airport.

We hope you have a wonderful weekend.

Regards,

Neal

Thursday

Feedback

Still recovering

Happy Monday

TGIF

Ice Storm

Ice from the roof and covering the hood. This just does not happen here in San Antonio. We do not even have an ice scraper.

Night of Seizures

Great Night

No School

Alex will stay home this morning. Over the weekend he continued to show the sleepiness and drooling like you all have been dealing with.

Both Saturday and Sunday Alex slept till nearly noon but continued his pattern of a couple hours of alertness then a period of sleepiness. So I can see while aides may think he is seizing. He seems to go through periods of alertness then down time. Over the weekend he said everything was yuck did not want to eat anything. Then I tried to engage him in puzzles but again got No, No, No.

He did perk up when the washing machine started. He was very much into loading the dryer and helping with wash. Then back to the office with me, at the desk, not wanting to do anything other than open and close the garage door. Soon he was listing to one side and drooling. As the day progresses to mid-afternoon I encourage him to, Go look at planes? No. Watch some trains? – No. Mac Donalds? – Yes.

So off we go traveling across the city. Knowing that when he says No maybe he really means No to something else (driving?). We get food and pull up by the airport – No, no, no. Off we go over to Whetmore and pull along the train tracks, No No No. I need to drop a package on the far east side so off we go and from there to the East Side switching yard. This time we see trains in action, so you think this is good? No, no, no. Fine. Let’s go home. No. No. No.

We do eventually go home. Make a fire and spend several hours just sitting and watching the flames. No activities. Nothing.

Sunday AM, around 2:15, he has a single seizure. He sleeps till noon and wants nothing for breakfast. Marycke makes it anyway and we get at the table, Yuck. No. No. No. Hmm, another fine day we have begun. Again I am in the office and I invite him to do a puzzle and watch some football (love those whistles) but I get No, no no. I sit him with me anyway and let him open and close the garage. Soon he is listing and drooling. Marycke gets him in the kitchen. Gets him to eat. Help with the wash. Back to Neal. Does not want to do anything.

Mid afternoon he hears the vacuum and goes out to help. He continues to vacuum for 30 minutes and then back to me. Just sitting there doing nothing he quickly reverts to his early drooling.

Now what? I have copied Ms Pape as I ask, what can we do now? Marycke suggested there maybe an area he can just lay down and sleep for 20 minutes when he gets lethargic. For example last night we had about 10 folks over for Bible study and Alex was hanging on me or wanting to sit in my lap the whole time. Eventfully he just went over to the floor, lay down and put his head on his arm and when to sleep. But then 20 minutes later e was up and engaging for and hour or two.

1. Do we have a place for him to sleep?
2. He enjoys coffee during the day while at home, can we provide you all with a thermos for him to get some in the afternoons?
3. Should he sleep in more and maybe get a bus later like 10 or 11?
4. When I ask him about school, I say ready for Ms Meehan?- No; Lane? –No Linda? Yes. Linda, run the vacuum, yes!
5. So can he do more work out of school if being busy helps he stay awake.
6. Do I need to make a badge for Alex to attach to his belt stating his likes, dislikes and verbal commands?

I did run into an aide over the weekend and she said Ms Meehan has not been at school. Not knowing Alex and how we works seems like a difficult job for a substitute. Also this aide, seeing Alex drool, kept saying ‘Wipe your mouth.’ And of course Alex did not react till I said, ‘Swallow’ We new people supervising Alex I think maybe I should make a tag for him to wear around his neck stating unique things about Alex. Like No does not always mean No. Or three means airplane. So to get me to wipe my mouth say, Swallow.

Sorry for the long post, just lots of issues going on. Just wanting to let you know we are dealing with them at home as well as you all dealing with them at school.

Seizure Sunday

Ah, another weekend and Alex has weekend seizures. This time it was 2:15 AM Sunday morning. We have been letting him sleep in our bed (Dad moved to his room) because he has been trying to walking during the night and he has those knee braces on. Todd, the PT, thinks it is dangerous for him to try and walk.

And also we know that the seizures seem to come weekly and it was time for more. Hopefully not to many more.

We had a nice Saturday, mostly working on computers, cleaning up from the holidays and then a little time train watching. We did not see too many. Not did we see planes because of all the clouds.
It is January so we kinda of expected the cooler weather. It allowed us to spend the night by the fire.

Too bad the Cowboys lost. But Dad and I will watch more football. I really like it when the whistle blows.

My dog Abby likes the fire too. When I am feeling okay I like to do a puzzle that lets me match the shapes and colors.

Happy New Year

Wow, New Year's is here. Grandpa took me to Whatburger for dinner
while Mom and Dad wentto their friend's house for a party.

Grandpa and I hung out together on Christmas Day.

We went to the airport as well as visiting the track tracks. Not too much happening on New Year's Eve so Grandpa and I went home. There we watched some footbal and the Big Ball drop.