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