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,