Christmas

Well Christmas is finally here. Everyone has already been up for several hours while I just sleep away the morning. I have not been feeling too well. Last night I even got sick and threw up.

It has been years since my tummy was sick. So Mom and Dad are letting me sleep in.











My sister Megan came down from Austin and brought her dog. Romey.

Happy Holidays

It is getting cold again and we got to have a fire. I love it! And now the whole house has pretty decorations. It has been over one week since my last seziure so I hope to make it through Christmas without one.

Christmas is coming

Alex had a good weekend. Always good for us when he only has a single seizure.

This morning he was hard to wake up and seemed to be 'sleep eating'. But now he is with his Grandpa and playing with his sister's dog Romy. He still showed some left had jerking and seemed to 'faze out' from time to time while eating. But even after 19 years I can't tell if it is seizure activity or just waking up.

I put a t-shirt in his backpack in case it gets warmer later. But Betty (Bus aide) just told me he has early dismissal and will be back around 1:30. So I guess no need to change shirts. Does he still eat lunch on short days?

Nancy asked about other words Alex knows. He knows Neal, Rosa, Megan, Abby and Grandpa.

Friday afternoon his Music Therapist, Maria, gave him a Santa he seemed to enjoy

NIght Planes

Alex came home happy. Then worked with Todd on his PT. He is now having to do his work out with the knee braces on. Sure hope it helps him improve.

Mom had a school party last night so Dad and Alex got to have BBQ out near the airport (Grandy's). We saw lots of planes and had some good sausage.

He had a good night. Slept right through and was a little hard to get up this AM. But he has finished breakfast and took off down the hall to have coffee with grandpa.

Good Night

Alex had a good night. No seizures.

He did well with horseback therapy yesterday. Then he joined his mother on a road trip to Austin to pick up older sister, Megan's dog, Romy. we are dog sitting for awhile.

Then last night, for the first time, Alex was able to get out of bed, knee braces and all, and 'frankenstein walk' into our bedroom. Kinda of shakes you up at 11:40 PM to have him standing next to your bed. Anyway, I let him into to bed and he slept well.

This morning he had a good appetite and then was ready at the curb eagerly awaiting the bus.
We hope you have a good day.

Back to School

Alex had a good night. Still no seizures. Drooling seems less.

We got his knee braces adjusted yesterday. Turns out they were too short and leaving a 'bum' on the back of his calves. Today, for he first time in week, he got out of bed without favoring that left foot too much. Still so but much better than before.

We hope you have a good day and Alex stays engaged.

School Work

Alex had a good night without seizures.

Todd was over to work with Alex on his PT. He still thought there should be adjustments made to his boots and knee braces. Marycke will pick up Alex after school and take him to the Doctor.

Today Alex slept in till 8:10 so maybe he will not be as sleepy in class. I think we need to remember Alex is Non Verbal not Non Thinking. I find sometimes because he does not say anything that I think he does not want to do anything. That leads to boredom, sleepiness and more drooling.

Here at home I try to keep him stimulated with videos of trains and planes, puzzles, typing, cutting and nerf toys. He use to do the computer but has not done much over the past 5 years. I do not think he does well with a mouse. But Region 20 still has lots of programs that could run from a keyboard. Even in Windows XP you can right click and set a program to run in Win95 or Win98 emulation. Maybe they have some simple programs that still can use a keyboard for input. (Millie's math house, sentence maker, Robbie the Robot)

As for puzzles, I have several 24-48 piece floor puzzles that I use when I know he is bored but not up to the challenge of 100-200 piece puzzles. Usually after he has had seizures or Diastat. Floor puzzles take up a lot of space. So at a desk in my office, Alex works on 80-100 piece puzzles that measure less than 12 x 10. If you need some I can put some together. In even more confined spaces he will complete 6x6 inch puzzle. He can work with very small pieces.

I know I have mentioned he will type if someone tells him to spell out the words like Neal, Mom, Abby, grandpa, etc. It needs to be things he knows. Everyday after school Grandpa lets him turn on the typewriter, advance the paper and then remove the paper after Dad is done. Then Alex runs down the hall to the kitchen looking back to see if Grandpa will chase him.

Ever since middle school, Alex has enjoyed shredding paper. Once a week or so his teachers would set him by a tub of paper to be shredded. I'm thinking of getting one for home. Just be aware he will shred everything so keep important papers away from him.

Another quiet activity he will do (like at church) is silly putty that we put several small glass beads in. Then Alex extracts the beads. He seems to enjoy it. There is also cutting. In the car, on the way to the beach, we can give Alex several individual pages from magazines with small pictures on them. Then he will cut them out. I also made five or so pages on the computer that have various shapes and colors. He will also cut those out. Usually, he like to have a tub or trash can nearby for the scraps to go in. Then there needs to be recognition for those that he cut out. Like pinning them on a board or lining them up. Like all of us he needs that reward.

Anyway, I hope you all have a better day and Alex can again have that sparkle in his eye when I tell him, 'Time for school.'

Have a great day.

A little drowsy

Sorry about the call after lunch, but Alex just seemed a lot drowsier and drooled significantly more than I have ever seen before. I believe it was Mrs. Perkins who had told me that if his drooling becomes significant he may be having a seizure, so I just wanted to double check with you.



As you suggested I worked on finding something to get his interest and he seemed to come around as time went on. Later on in Health class the students and I were discussing and actually demonstrating exercises wheelchair bound individuals, the bedridden and those with other handicaps could perform. We would talk about an exercise and then each of the students would try the exercise. Alex did not seem too interested for the most part except for lifting hand weights (for our demonstration the "weights" were gallon milk jugs filled with water) and especially the leg lifts.

I had failed to ask Alex if he wanted to try the leg lifts, so as I walked by his desk he reached out and grabbed me and indicated his desire to try the lifts. He almost popped out of his chair and up onto the table to demonstrate his leg lifts. I obviously helped him a bit, but he slowly raised and lowered his legs just as had been demonstrated. When was done he raised his head up with the most satisfied smile. That smile was a keeper and literally made my week!

Thanks for allowing me to be Alex' teacher. He is a special young man!

Nancy Sims Meehan, Alex's teacher

Monday, Monday

The party is over, so turn out the lights.

No really my sister Megan has just left to return to Austin. She and my other sister Malinda came down for a friends bridal shower.

After that we took Megan out for her birthday and then came home for cake and presents.

I like to vacuum so Dad set me up to clean up after the party. My knees are a little straighter thanks to the work Todd has been doing and the knee braces I wear at night.










Monday morning and Dad has fixed me pancakes, suasage and coffee. I got up early so there was time for me to do a puzzle and relax before school.

It is still cold so I needed to cover up.

Brrrrrrr

Cold weather moved in and Alex enjoys sitting by the fire and have a cup of 'Joe' in his Michigan mug.

We then spent most of Saturday enjoying the Saturday football games.

Alex likes it when the whistle blows.

Ouch

Day one with the new ankle braces just did not go well. I picked Alex up form school as he just did not want to step on his foot anymore.

Then Mom joined us to at the Ortho office. There Steve found some adjustments that needed to be made.


Alex never has been real verbal about pain issues. So here the plastic was cutting into his ankle enough to go trhough the sock and leave a red welt on each ankle.








Steve is marking in red where the boot needs to be trimmed. Hopefully Alex will find this much more comfortable.