Mom and I helped out at Grandpa's Garage sale. He still had lots of things to sell. My cousin Rachael was there also. She sold lots of the 'jewelry'.


Grandpa's garage sale.

Here's Alex

Linda,

Five days again. Wow!

You sure we can’t hire you to guide him through the weekends? Hah!

Anyway, Alex had a good night. We got to have dinner with my Dad and 2 sisters. They are here visiting my Dad.

Alex enjoyed Alamo café eating chips, cheese and numerous warm tortillas.

No seizures again. He got up on his own a little after 7. So we had lots of time to eat, do some puzzles and watch some trains on video. He ate all his bacon, sausage and a BIG pancake.

Hope you have a great day and that we make it through the weekend,

Regards,

Neal

Here is my bus. VJ always is there to meet me.

My dog Abby is not sure what I'm going to vacum.

Using the vacum is a favorite job of mine.

Yeah! All done. I am ready for CAMP this Summer.

Dr. Jose Salinas and his PA, Ms. Wilkinson

Resting heart rate - 55, not bad!

Where's that thing going?

No needles please.

Off to see my new Doctor

Good Thursday

Marycke & Neal,

They fixed my e-mail. They actually hurried for a change. So I thought I would try it out by asking, Was Alex supposed to have the two weiners in his backpack today? Thanks, Linda

Morning Linda,

We are off to see the doctor.

Alex had a good night’s sleep. No seizures.

He got up on his own a little before 8. He has eaten bacon and had a little to drink.

I will bring him to the office as soon as we are done at the Doc’s.

Regards,

Neal

Wednesday Morning

Morning Linda,

Alex did pretty good this AM.Little hard to get up. But he ate bacon and sausage.No interest in waffle.

Oh well.

Tomorrow AM we go to the Doctor so I will bring him in late.

Thanks

Neal

Good Day

Neal & Marycke,

Alex had the best week last week. He was his old self and he worked hard on everything he tried. We had a little Easter party Thursday afternoon. We are working on Special Olympics track every A-day morning and B-day afternoons. He is still doing well in Edmark Reading and as long as Margaret sits with him at lunch he eats real well. If she is not available, he eats some of his lunch tray but not as much. I am so sorry for the delay in information but my wonderful computer was broken again and Central Office took a week and a half to fix it. I turned in paperwork for Alex to have summer school and it will be here at MacArthur this year. As for 7 days a week school, I need them to get everything done but I don't know if I could handle it. Send in the money for Alex's McDonald's lunch whenever it is convenient. There was a belt in Alex's backpack, Is it Alex's or did he borrow it from the nurse? Thanks, Linda

Jo Ann at Dr. Zsabo's Office:

I think I'd like to hold off awhile for Alex's next VNS appt. It seems that every time we adjust his VNS he goes through a rough spot and then kind of levels off. I want to get a better idea of how he is before we come in again. He did have a few seizures over the weekend but no need for Diastat this time which is already much better than last week. So let's just wait and see. Thanks Marycke

Good morning,

Alex is VERY tired and VERY slow to do anything.

He ate just a little. Never did drink anything. Lots of protesting.

Oh well, you know.

Meanwhile, we had seizures Fri, Sat & Sun so now he is ready for another 5 days at schools with no seizures.

If that happens, I say lets get an ARD for 7 days a week school, or at least until he has a seizure. -;)

Neal

Sister Malinda at Easter

More cows that like to 'eat'!

Alex signs, the cows like to eat!

Ultralite lands at Field of Dreams

Another kind of Ultralite at Field of Dreams

Ultralite at Field of Dreams

Road Trip

Every weekend we go looking for planes, trains and cows. This time we take off North of town and visit the wild people flying the Ultra Lights. Their airport is called Field of Dreams.

We wait and watch and then have the added benefit of one of the major train tracks going right behind us.

It makes for a fun afternoon.


The Ultra Lites - Field of Dreams

Front door

About siz months ago, then Alex was on a medicine that gave him a more aggressive personality, he broke the stain glass Marycke had put in the front door.

New door this Spring break. Marycke made another stain glass window for the front door.
Alex better be more careful this time.



Mom finishes replacing Stained glass I broke

Puzzles

Alex still really enjoys puzzles. We are off the floor now and doing more at the desk. He still does best with 80-120 pieces ouzzles.

Garfield he likes a lot.



A favorite puzzle

Seizures

Thursday March 17, 2005

8:05 AM TC

10:10 AM TC

11:30 AM TC

3 days of seizures - Again

Saturday March12-13^th

11:43 PM TC long & hard

12:23 AM short TC

12:45-47 TC

1:04 AM got up and went potty

1:50-52 AM TC

2:06 AM TC, gave Diastat

7:47 AM TC

8:00 AM gave meds

8:54 AM TC

9:00 gave 15 mg Diastat

10:42 TC

11:30 AM got up. Loopy rest of the day. Lots of drooling

Friday March 11-12^th

12:30 AM back to back tonic clonic

5:40 AM TC

6.30 AM TC

7:14 AM TC

Off to school

Another good night for Alex. No seizures.

This morning he was a little easier to get up.

He ate well… until the bus arrived and then he tied to eat 3 pieces of bacon at time. Lots of gagging, some bacon back into the paper towel, but nothing more. Whew, I was not up for getting him dressed again.

Anyway, have a great day.

I heard the train whistle as I was taking out the trash. The boy may arrive a little fired up!

Regards,

Neal

Poor Linda (Alex's teacher at Mac Arthur High School),
This is oging to be a long day. Alex has just been impossible to get up this moring. He is still asleep even as I get him dressed.

Oh well. Ate least we did not have siezures.


Hard to wake up for school.

From: Linda Higgins

Sent: Monday, March 07, 2005 10:42 AM

To: Neal Shaver

Subject: (no subject)

3-7-05

I assume that Mrs. Perkins will be at the ARD meeting Friday but I don't know for sure. I have heard the country around Branson is beautiful but I have never been that far north so I will be enjoying it for the first time. Alex's seizures have to get better because I know it is so hard for both of you. Alex has been real groggy and sleepy so far this morning. Hopefully, he will be more alert after lunch. Have a great day, Linda

3 Days of seizures

Sunday March 6, 2005

1:30 AM TC

3:00 AM TC

6:20 AM TC

7:20 AM short, swallowing, clucking

10:00 AM TC

Saturday March 5, 2005

5:40 AM TC

7:40 AM TC

Friday March 4, 2005

7:41 AM TC

Saw Dr. Szabo. Increased the stimulator to .75, 7 sec every 12 sec

The magnet program is .25 higher

3:00 AM TC

Off to see the Doctor

We have decided to increase the power of the impulse being sent by Alex's VNS device. Back in October 2004, when the battery died, we were at 2.5. This time, after 4 months of the device being off, Dr. Szabo started Alex only at 0.25.

Normally he likes to wait 6-8 weeks before making an increase but we convinved him to see Alex earlier. We initially boosted it 0.25 again to 0.50. Afer a while, we saw Alex was doing oky so we increased it another 0.25 to 0.75.

This time I got to hold the paddle over Alex's device. I think Alex had had enough of the Doctor's office.

Anyway, almost immediately Alex began to cough about every 12 seconds (which is good it shows the device is working) . So Dr. S waited until Alex drank a cup of water.

With a promis to visit Mac Donald's or Wendy's on the way home I got Alex to finish drinking. Now we are on the way home.




At the Docotor's office



At the Docotor's office



At the Docotor's office



At the office with Dr. Szabo resetting my VNS device.

His nice nurse Jo Anne gave me a bright yellow ball to take home to Abby.

Yeah

Yeah! He made it again.

Little hard to get up this morning. We ran about 15 minutes late.

So he never got to finish his breakfast.

But by bus time he seemed fine. He just may want more lunch than normal.

Tomorrow I need to pick him up about 12;30. Where would you recommended I go to get him? How do I check him out?

Regards,

Neal

School

March 2, 2005

Yeah!

Finally, Alex is on the way.

No seizures.

He slept well. Ate well. And waited on the bus, well.

Alex had bacon, sausage, strawberries and water.

Seems in a great mood.

Have a good day.

Regards,

Neal

3-2-05

Yeah! is right. We have missed Alex and are glad he did not have a seizure this a.m. We are serving lunch to teachers today so Alex is helping. He made the crumble for the Apple Crisp. I am the one feeling lousy today. Best Regards, Linda

Seizure

3/01/2005

7:39 AM TC

Another morning seizure. This time, full blown at 7:39 AM

I will again try and get him up and bring him in.

Yesterday I could not get him awake till after 1PM!

Oh well.

Regards,

Neal

Seizure

Monday February 28, 2005

7:27 AM TC

But slept till 1:23

2/28/2005

Morning Linda,

We will be late. Alex had a seizure 7:27 AM. Still sleeping.

I will try and get him up and going to be at Mac by 11.

Otherwise we had a nice weekend. Lots of rain Saturday but a great day for ‘chasing trains’ yesterday.

Regards,

Neal

2-28-05

Neal & Marycke,

We have missed Alex at school. I am sorry he is having so many morning seizures. We will be cooking tomorrow in preparation for the Wednesday staff meal. Wednesday we will cook and serve the special education staff. I am glad you had a good weekend, we had special olympics basketball on Saturday and we got a 2nd place silver medal. Have a sunny day, Linda

Seizure

Monday February 28, 2005

7:27 AM TC

But slept till 1:23

2/28/2005

Morning Linda,

We will be late. Alex had a seizure 7:27 AM. Still sleeping.

I will try and get him up and going to be at Mac by 11.

Otherwise we had a nice weekend. Lots of rain Saturday but a great day for ‘chasing trains’ yesterday.

Regards,

Neal

2-28-05

Neal & Marycke,

We have missed Alex at school. I am sorry he is having so many morning seizures. We will be cooking tomorrow in preparation for the Wednesday staff meal. Wednesday we will cook and serve the special education staff. I am glad you had a good weekend, we had special olympics basketball on Saturday and we got a 2nd place silver medal. Have a sunny day, Linda

Dr. Szabo

Jo Ann at Dr. Szabo’s 2/25/2005

We really would like to see the Doc within the next couple weeks.

Alex use to have a much higher setting than it is set now.

Since installation we have had:

6 days of seizures

3 days no seizures

2 days of seizures

3 days none

1 day yes

2 days none

now 2 days back to back 7:50 AM

See if we can avoid waiting 2 months.

For nearly a year we were having 1 seizure a week usually Saturday PM or Sunday AM so Alex was not missing school.

Neal

-----Original Message-----
From: Jo Ann Brown [mailto:JoAnn.Brown@uhs-sa.com]
Sent: Tuesday, February 22, 2005 8:42 AM
To: Marycke Shaver
Subject: RE: Alex VNS appt

The doctor's note says to follow up in 2 months which would be in April. How about 4/15?

-----Original Message-----
From: Marycke Shaver [mailto:mshaver@satx.rr.com]
Sent: Monday, February 21, 2005 4:56 PM
To: Jo Ann Brown
Subject: Alex VNS appt

Jo Ann…I’d like to go ahead and make Alex’s next VNS appt. I have the week of March 14 to 18^th off and also the following fri March 25^th. Anything available those days?

Alex seems to be tolerating the stimulus fine…he’s still having seizures but have not had to use Diastat since turning the device on so I that’s good.

Let me know

Seizure & School

Friday February 25, 2005

7:50 AM

2/25/2005

Another seizure this AM. 7:49 this time.

I guess another front has moved in to SA.

When he wakes up I will try and bring him in.

Regards,

Neal

2-25-05

Neal,

We are going to HEB to purchase groceries 2nd period at 10:30am so if you bring him in before lunch take him to Mr. Warden's room and we will pick him up when we come back. Thanks and have a good weekend, Linda

Seizure & School

7:49 AM Tonic Clonic (TC)

2/24/2005

Hope you don’t think he is trying to ignore you, I assume today was your day to be with Alex, but he had a seizure at 7:50.

I was trying to get him dressed and boom! Off he went. Wet the cloths, sheets and me.

That’s why I kept him home Tuesday. There is just something about rousting him out of such a deep deep sleep that I always am afraid I will force him to school and he will have a seizure there or on the way.

Anyway, Marycke said he had a good night. I know a front came in. But I really did not expect seizures this AM.

Oh well maybe tomorrow.

Regards,

Neal

2-24-05

Neal & Marycke,

I am so sorry to be out of touch but you know what it is like with TAKs and the LDAA as well as the SDAA tests. Today is finally the last day. We missed Alex Tuesday because we went to the Witte Museum and Brackenridge Park. Alex worked well yesterday and he ate all his lunch again which was good because he did not eat well on Monday at lunch. Alex finished his second section of Edmark Reading and he is doing a good job on the words. He is reading airplane (no surprise) and boy, green, yellow, and I. He starts his new section on Friday. I hope to keep in better touch next week, Linda

School

Morning Linda,

We never did make it over yesterday, but today Alex seems much better.

He slept well. Was hard to wake up. But did eat bacon, sausage and waffles. Meds still were a struggle, but all in all, much better than yesterday.

Have a great day.

Neal

Off to school

Morning, hope you had a good weekend. We did. As did Alex.

No seizures.

Very hard to get up this AM. Lots of protests over eggs and cheese with sausage. Also he worked very hard at not taking his medicine. But eventually he did.

He got a blister on his big toe this weekend. He seems to be walking better today but he still may favor that foot.

Regards,

Neal

Seizure

Earlier in the day Alex came limping in. I thought his shoes were bothering him. But later we discovered he had this bid blister on his toe.

Alex has a high pain threshold. Quite often we find him cut, bruised or batter without him ever letting us kow he was hurt. This toe is another example.

9:20 PM Tonic clonic


Blister on my toe

Off to school

Here he comes.

Well he is coming but has had a hard time waking up.

We did have meds, but spent nearly 30 minutes looking at and never eating blueberry pancakes. He did eat 3 pieces of bacon but just stared at the other 3. And never did get his drink of water. All of it sat there until the bus showed up 5 minutes early.

So we rush to get his shirt and coat on. His belt is in his backpack. There are also 2 wrist bands in there.

The we get the squawking because he can not now stop to drink his water and eat his bacon. I told him Ms Linda would get him water at school.

Oh well, at least no seizures last night!

Regards,

Neal

Seizures

Wednesday February 16, 2005

12:06 AM TC

1:32 AM TC

6:40 AM TC

8:35 AM short TC

Seizures

Tuesday February 15, 2005

2:45 AM TC

4:00 AM TC

5:45 PM TC

Teacher Linda & Seizure

Morning Linda,

Here comes Alex.

He had a pretty good weekend. Most of Friday and Saturday was spent laying around the house.

But by yesterday he seemed back to about 75% of normal.

He slept well and ate waffle with bacon this AM. Like many of us with cotton, he to was thirsty. Three cups of water this AM.

We have surgery for the VNS tomorrow 6 AM and more than likely will keep him home Wednesday.

But then there is Thursday. Before he has Friday off.

Regards,

Neal

I forgot. His incision may look raw, but it is covered with ‘durobond’ which is waterproof.

Just in case you see it.

Neal

11:15 PM TC

Seizure

2:06 AM TC

VNS

Friday February 11, 2005

Dr. Szabo activated the VNS

Setting .25, 7 sec every 12 sec

Seizures

Wednesday February 9, 2005

6:50 AM TC

8:10 AM TC