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Welcome to Dillon's Journey. On May
24th, 2004 while at daycare Dillon had a seizure. The
daycare center call me at about 3 PM and told me that they
couldn't wake him up. He was still can crying with his eyes
closed. His auntie Janis and I rushed to pick him up to take
him to the ER. We picked him up and drove him to the
hospital in Waconia, MN. On the way to the hospital he started
to have a seizure in my arms, I was horrified. I didn't know
what was going on. When we arrived at the hospital the doctor's
gave him Vallium and the seizure stopped. They put a catheter in
him to get a urine sample, the took blood and gave him a spinal tap.
The doctor also ordered a CT Scan of Dillon's brain.
The CT Scan came back clear and the initial spinal tap came
back negative. The doctor's at Waconia felt that he should be
observed for a day or two. They didn't have the correct
resources if Dillon were to have another seizure so they transferred
us to Children's Hospital in Minneapolis. We arrived there at
about 8 PM. They did tests and talked to us. They admitted Dillon
and we were finally moved to a room around 12 AM.

That morning Dillon woke up to a bunch of different doctor's and
nurses and seemed to be in a pretty good mood. The Neurologist,
Dr. Chadwick felt that Dillon had a febrile seizure and that he would
never have another one. He ordered an MRI for the afternoon of the
26th and warned us that Dillon would be out of it from the sedation
the rest of that day and probably the next day as well. So, the
morning of the 26th came and Dillon woke up at 7:50 AM. He was
supposed to have nothing by mouth after 8 AM. His auntie Janis
and I had to shovel a piece of toast and a banana in his mouth.
I think we finished at 8:06 AM. Shhhhh don't tell. Then
Dillon went for his MRI. He was very out of it afterwards and could
hardly sit up but we were told this was normal so we didn't let it bother
us. At about 5:30 PM Dr. Chadwick came in a told us that his scan was
NORMAL that and we were being discharged. He sent us home with
Diastat as a PRN just in case he were to have another seizure. So,
we packed up and left. On the way home Dillon just looked out the
window and didn't really make much noise, just cried a little. We
thought it was because he was tired it was 6:30 PM and he usually
gets tired around then. We thought nothing of it.

The next morning my dad stopped by to say "Good-bye" because he was
going out of town. Dillon woke up crying shortly after so I went to get
him and bring him downstairs. Usually Dillon would want to get down
right away and play with his toys but this was not the case. He still
was still so weak that he could barely sit up and he would also fall when
he would walk. Phil had to work that morning so my Mom was coming
over at about 11 AM to spend the day with us. Dillon and I just sat
on the couch and watched a movie. I thought that by the time my
Mom got there he would feel better and want to play. At about 8:30
AM I gave Dillon so fruit snacks. He ate them so I thought that
he was starting to feel better, boy was I wrong. At about 9:00 AM
Dillon threw up his fruit snacks and started to have another seizure.
I was terrified. Dr. Chadwick had explained what to do but when
it is really happening it is so much different. At that time we
didn't have a phone and my husband had our cell. I had taken Janis'
cell phone to use in case something happened. So, I called 911
from her cell but the battery was dying. As soon as the operator
answered we got cut off. I tried a second time and the same thing
happened. So, here I was alone and without a phone to call for help.
I didn't want to leave Dillon so I grabbed him and ran to my 2 neighbors
to use the phone. No one was home. I turned around and there was
my Mom pulling up. Talk about a miracle. She took Dillon inside and
gave him the diastat while I ran down to the landlords office to
call 911. The ambulance came and wanted to take us to a different
hospital. I said, "No! Children's, we left there last night they
already have his records." They finally agreed.

So began Dillon's journey. A 3 hour seizure, a 2 month hospital stay
and an unknown cause.

August 25th, Mommy and Daddy's Anniversary ( 4 years )

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This is Dillon being cool!

Dillon July 2006

Robby watching Elmo

Robert July 2006

William my little linebacker pushing Robby in the clothes basket.

Will being a ham

Will drinking his bottle before bed time. He NEVER lets that bear go

Will July 2006 still with his bear

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Dillon's banner was made with love by THE BIG BRAVE BANNER SITE

Dillon also has a virtual quilt now from Quilts of Love. The link to his quilt is on the bottom under links.

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Journal

Sunday, September 24, 2006 1:04 PM CDT
Hello all~

We heard about Dillon's Muscle Biopsy and his neurologist said "It DOESN'T APPEAR that Dillon has a Mito Disease." YEA!!!!!

It's been a long time. The boys are know in daycare 4-5 days a week. I am in the process of completing the training for my new job. Things have been going really well and we are REALLY busy.

Dillon goes to daycare 4-5 days a week, pretty much all day. Monday I drop off Will and Robby then Dillon and I venture to Children's Hospital for his PT appointment. After PT I take him to his speech therapy group at Local Elementary school. It starts at 10:30A. He loves going to school, he feels like such a big boy. Dillon is done with speech at 11:45A, my dad then picks him up and brings him back to daycare. On Wednesday he also has his Speech Therapy group but in the morning has OT at the Chaska Health Center. After Dillon is done with OT he again goes to the Elementary School. My dad then picks him up on Wednesdays and then off to daycare he goes.

Tuesday and Thursdays Dillon goes to daycare in the morning with his brothers and then a bus picks him up at 9A and brings him to preschool. He comes back to daycare at 12P.

Dillon loves being busy, he is almost four so there isn't any of this sitting still business. His brothers are both walking now so they also are keeping us on our toes. Will is walking better than Robby. Robby started actual "walking" about 1-2 weeks ago. He still crawls sometimes but is definetly getting better.

Dillon is finally starting to get taken down off of his Keppra. His neurologist started with his afternoon dose and lowered it from 2.5 cc's to 1 cc. This is fabulous as we have been waiting for this for a few month now. Dillon just started this on Friday. The last few months have been really well for him. He is talking a lot more and eating better. Still NO seizure activity of any kind. We are still have difficulty in the potty training and the listening (will this ever end??????). We are having him sit on the potty and he just doesn't care. I also bought Dillon a twin bed and he will hopefully start transitioning to that very soon, we just need to get the parts to hold the mattress in place.

I think that is all for now. Talk to you later. Here are some kids and families that could use some prayers right now...

Christi and her Family
Christi passed away on the 19th and the age of 9. She fought very hard for 4 years.

Asher
Asher and Jacob are twins born at 23 weeks. Asher is in the hospital and has been since birth. He is doing pretty good. Sadly Jacob passed away on June 29th. (7 weeks old).
Please say a prayer for them.

Please say a prayer for Catie. She is beautiful little girl, the doctors think that she relapsed. She has medulloblastoma.
Catie

Please also say a prayer for Sadie. She has Wilm's Tumor (Kidney) and she had scans today. She relapsed in her lungs.
Sadie

Also say a prayer for Olivia and her family. She has her scan recently due to pain in her leg. The doctors did a biopsy and they are 95 percent sure that it is Neurobalstoma relapse.
Olivia

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Hospital Information:
HOME
PO Box 361
Victoria, MN 55386

Links:

http://www.umdf.org    United Mitochondrial Disease Foundation
http://quiltsoflove.com/quilt_2006/dillon-st-s/dillon-s.html   Dillon's Virtual Quilt. Made by Angel Goog.

E-mail Author: stsauver3mn@aol.com

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