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.