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

Success!

We are home from the hospital and Alex's did a great job. We got him up at 5:00 AM; into the car; to the hopsital by 6:00 AM...
waited...
and waited...
and waited...
okay it is finally 7:15 AM and we get to start discussing surgery.


Getting ready. Time to take blood pressure.


Alex is so good. No screaming. Just wants to get it done. Unfortuantely it is going to take a few tries with the needle.


Dr. Butler gets Alex ready for the IV

Alright. The fun is over. Find the vein and knock me out. Of course Alex is pretty much non verbal and has a high tolerance for pain, so he really does not complain. Till the 4th or 5th try!!


Dr. Butler looking for a vein for the IV



Still looking. Let's try the other arm.


Marycke feels the pain more than Alex

Off to surgery and it is only 8:15. We expect the surgery will take 45 minutes to an hour but are surprised to have it completed in 30 minutes.

Thankfully no surgery pictures, eh?


In recovery after VNS surgery

Finally, almost time to go home.


Recovery almost over. Let's go to MacDonalds


He finally got up and was ready for lunch. We got home by 1:00 PM. Alex seems okay. We go back to Dr. Szabo Friday to have the VNS turned on.

Neal and Marycke



Okay, one more picture, if you want to see it. It is the incision and a highlight on the neck showing where it connects into the vagal nerve.


Just keep


Paging down.


More


More


almost there


Really sure?


Okay


Here it is:


VNS implant and where it attaches to the neck. They were able to reuse the leads from the old implant. So just the one incision.

VNS surgery tomorrow

Vagus nerve stimulation (VNS) was approved by the FDA in 1997 to prevent or interrupt electrical disturbances in the brain for persons with hard to control epileptic seizures. Used in conjunction with anti-seizure medications, VNS uses electrical pulses that are delivered to the vagus nerve in the neck and travel up into the brain. The vagus nerve has very few pain fibers, and therefore acts as an excellent pathway to deliver signals to the brain without the need for direct brain stimulation.

How does VNS work? Although it is not known exactly how VNS reduces seizure activity, it is believed that persistent VNS causes changes in brain chemistry that may reduce excitatory amino acids, and/or increase inhibitory levels, thus reducing seizure activity.


VNS implantation



Close up of the VNS

VNS doesn't cure epilepsy but, like anti-seizure medicines, in most people it helps reduce symptoms. Usually, a person using VNS would still take medication, although probably in smaller doses.

Now we just have to get him up at 5:00 AM tomorrow morning!

About 80%

The last couple of days Alex has been getting back to normal. No seizures but still a lot of lay around, druel running down the shirt, that kinda of things.

Tomorrow is the Super Bowl so maybe things will pick up.

Part 2

Even after the sheets have been taken away Alex gets up and wants to sleep in our bed. Still clutching that garage door opener!

Recovering from a day of seizures

Alex gets up a little after 7 PM. He decides he is hungry and has bacon, crackers & cheese. A cup of root beer and now he wants sausage. I guess if you don’t eat or drink all day you get hungry.

After doing some puzzles, visiting with neighbor Charloette and watching some videos it was time for bed. I was chosen to spend the night with Alex. Good call for Marycke.

Seizures began at 12:23 AM he had a tonic clonic (grand mal). Then again at 12:52 AM- too soon. I chickened out and woke Marycke up. We agreed to give him 15 mg Diastat (a valium derivative administered rectally). It should ‘knock him out’.

1:43 AM another tonic clonic but shorter duration, 1-2 minutes

2:42 AM tonic clonic - shorter one “ “ “ “ “

3:35 AM – yeah, no seizure. Lot’s of tossing and turning. I try to keep my hand on him to feel for a seizure. 3:45 he rolls on his back, arm up over his head, is this it? Nope! He just snores and seems to have sleep apnea. I'’ll have to check into sleep apnea and seizures.

4:05 AM Man he snores loud. I roll him over. 10 minutes later he is on his back again - snoring. This is what Marycke means when I keep her awake. Oh well, time to sleep.

4:58 AM – Strong tonic clonic, 2-3 minutes

5:16 AM – tonic clonic, I give him 10 mg Diastat

Do Over

Not the best day to remember. Kinda of like Billy Crystal said in City Slicker, “Everyone should have one do over.” Today would be a good day.

It’s time for dinner but Marycke and I have set that aside as we strip beds sheets and head off to the laundry mat. Alex has just finished his 3rd seizure in 3 hours and during that period urinated on our bed. So off comes the sheets, covers, mats, etc and off Marycke goes to the big machines. I guess there will be no yoga for her tonight.

The morning started as normal as could be expected. Alex stumbled out of his room and tried to climb in our bed at 4:15 AM. I made him go to the bathroom first and all seemed well. I moved into his room but then at 5:21 he had his first grand mal (tonic clonic) of the day. Marycke had breakfast and while getting ready for work, he had his second seizure at 6:43. So I move out of my office to lay with Alex as the baby monitor we had has quit working and no one seems to sell the replacement battery.

Never really being able to get back to sleep I wait for Joe (my Dad) to come over to work. Then I get to shower and do all the day to day stuff we all do on trash day. Meanwhile Alex is doing great. No more seizures. I put the Diastat back in the draw for another day.

It’s 9:30, 10:30, noon and we just can’t get the boy to wake up. I let him sleep and go off to do some computer work for a client. While at their office I get paged that Alex has just had his 3rd seizure of the day. It’s 2:43 PM, I right in the middle of re-networking and office and have to pick up Marycke at 3:30. My able bodied assistant, Haley, says she can watch Alex and still answer phones.

Whew, 4 PM and no more seizures. Thank God for small favors. Alex climbs in Grandpa's lap for a little rocking and nap time.


Sleeping with Grandpa Joe



4:42 and it’s seizurer number 4. I’m working in the office typing up orders for the 5 PM mail. Joe goes in to check on Alex. This time everything gets wet. Marycke will not be pleased. Bummer, the doorbell rings and another customer is dropping of 3 PC’s that need fixing.

Marycke’s back. It’s 5:10 PM. 5:58 seizure number 5. I pull out the Diastat. It’s time for the valium. Marycke wants to wait till they are .30 minute apart or till after we give him his 8 PM medicines.

Forget dinner. Forget yoga. We have to go get the wash done. We need to get Alex showered off. But at 125 lbs with ‘rubber for legs’ this is going to be tricking. Off come my clothes and I hold Alex in the shower as Marycke sprays him down. Now starts the shivering. We hope it does not lead into another seizure. After much effort he is now dressed in new clean jammies and put back in his bed.

We return to stripping the sheets.
Skipping dinner.
Hoping for a do over.

Neal and Marycke

2 Scoops

2-02-04

It’s Wednesday AM. Marycke has left for work and I have been busy preparing Alex’s breakfast. To day we go to meet the neurosurgeon, Dr. Jimenez, who will replace Alex’s VNS.


Daily meds


2 scoops


As I enter Alex’s room at 7:42 AM I see the tell tale sign as the right leg is shivering ever so slightly. I grab his shoulder and roll him on his back hoping to roust him from this deep sleep which is going to lead into a tonic clonic seizure. Alex! Alex! Wake up!

But to no available. The shivers increase, the left arm raise over his head. Up comes the left leg our goes the right. The scrunching up of his face. And the noises; the gagging; gasping for breath; moaning and tremendous tension throughout his body.

I roll him back to see the water marks progressing down his leg and covering the sheets. This is not going to be a great day. At least we had 10 good ones.

Alex gets a sponge bath, new clothes and a promise to stop at Mac Donalds for breakfast if he would just take his medicine and get in the car. He did and off we go.

We get to the medical center 15 minutes early. After a quick dash to Mac Donalds we arrive at the doctor’s office at 8:59 AM. One minute early. Bummer the doctor is not end. 30 minutes later and still no doctor. Alex is getting antsy. Finally we meet Dr. J at 9:45. He explains Alex surgery is minor and should last more than 45 minutes.

Alex is all done and ready to go. But wait, we have to go get blood work done. Alex hangs in there while the kid before cries bloody murder. Four vials of blood later and he still did not cry. Good boy.

More fries on the trip home. Then lunch with Grandpa in the office. Haley gets me more fries and Dad gets me more to drink. This is not too bad.


Alex take his meds


Alex take his meds 2

I take my meds and get to sleep at a normal time.

Time for meds. Twice every day.

Thanks

Thank you all so much! The kind thoughts. Prayers and words of encouragement really help.
We have made it to day 10 and have to wonder.....

When?

Tomorrow?

What if he does not have any for the next week and we are suppose to replace his VNS? Will we do it?

Nice worry to have.

Linda,
Another good night.
Hard to get the boy up again this AM, but he is on the bus.
He had pancakes and bacon. Two cups of water.
Then a little typing with his Grandpa.
And he is all yours.
Have a great day.

Neal
PS. No Alex tomorrow in the AM.

Linda,
The surgery next week is just to replace the battery of his VNS (vagal nerve stimulator) which is just underneath the skin under his collarbone on his left side. You can actually see and feel the outline of it now. The replacement battery will be smaller than what he has now so less noticeable. If his preop appt tomorrow goes well and doesn't last too long Neal will probably drop him off at school afterwards. The surgery itself is done on an outpatient basis, so he'll be home the same day (Feb.8th)...not sure if he'll make it to school the next day or not.
Good luck on your eval.
Marycke

From: Linda Higgins
Sent: Tuesday, February 01, 2005 11:16 AM
To: Marycke Shaver
Subject: Re: Alex

Neal & Marycke,
This is my two-week window to be observed so I have been kept really busy and the bake sale on Monday as well as the CBI to Miss Nelson Is Missing on Thursday so I apologize for not answering all your e-mails but thank you for keeping me current on Alex. He has been having wonderful days here at school also and no seizures but a great appetite. A little feisty sometime but we can work with that. What is the surgery going to correct and we will miss him tomorrow. Thanks for being great parents, Linda