History

Monday, December 31, 2007 11:59 PM CST

Hard to believe another year is ending....
another hard year....
I am glad this year is over....but....
I am very fearful of the year ahead....

2007 had some very unusual twists and turns for us.

My Mom was diagnosed with and treated for LUNG CANCER...
What horrible words...Thanks to all who prayed for her and
the Doctors who treated her...She will have her repeat
scans in the weeks ahead. Please keep her close to your
hearts and prayers.
We accomplished nothing in the house..No projects finished
this year..no new ones started...
Hillaree and Harrison did not break any bones. I can't
remember a year recently when that happened...Good News!
Hollister and I survived our first year at home, watching
TV, living as shut ins. You find out who your family and
friends are when you are live in confinement.
Hollister started therapy at Blank in January..and he
continues to make progress there. He is comfortable there
with his Team!
Hillaree finished her first freshman year at DCHS...
and Harrison finished his first year of Middle school...
This past summer, no vacation...AHHHHH
Hillaree worked as a life guard..and Harrison took his last
summer, just to be a kid...Life is good.
Hollister made it 10 months without a Hospital admission.
He had a 2 week stay in June/July..for a picc line
infection...(2 weeks is like an overnight stay for him..ha)
He also had a short stay over labor day...
Fall...
School started...and Hillaree got her Drivers license.
Hollister needed heart surgery....The good news he was
healthy enough to have the surgery. The Divinci robot was
used to minimize his surgery time and incisions....It went
perfectly....
He recovered...The pericardial drain wouldn't quit
draining...went home with it...Home 14 days...
Sepsis...antibiotics.. home 5 days...
Seizures, lung problems, blood transfusions, kidney faliure,
heart problems, ileus and bowel obstruction, Intubated on
a ventilator for 14 days....78 days in the Hospital.....
AHHHHHHHH

Home for Christmas PRICELESS....

Hollister continues to have some ups and downs... He is
very tired and not tolerating all of his feedings...
His feet continue to swell. Good thing it is popular to
wear sandals in the winter with socks..haha

Tonight we took Hollister to an Iowa Stars game..His friend
Toby(19) had a great game. It was our first game this year.
Hollister slept through most of it. But, it was good for
us to be there.
Hillaree is out with her friends...and Harrison is at his
home away from home with the McCarthy's both will be
ringing in the New Year without us...

Hollister is stuck at home with the parents watching Dick
Clark and the "Rockin New Year's Eve"...How lame for him!
The Ball will be dropping soon....

Good bye 2007...What a year you have been.
Thank God we are all here tonight!!!!
We continue to look forward with hope and optimism.

Youth is when you're allowed to stay up
late on New Year's Eve.
Middle age is when you're forced to.
Bill Vaughan

Friday, December 28, 2007 8:03 PM CST

One Week at home....

A Merry Christmas at home...
Christmas Eve, Dick and I went out early and finished our
shopping. Wasn't too bad. Hollister slept in...to the
afternoon..He looked good.
My Mom and Dad came down in the evening...and some friends
came over and we Fondued.....
Dick and the kids made it to the Midnight Mass....
Was hard not to go as a family....Some moments are tougher
than others...Makes my heart so achey

There's nothing sadder in this world than to awake
Christmas morning and not be a child. ~Erma Bombeck

Christmas morning...Hollister is up and sitting in his
new chair right by the tree. How great is that.....
Harrison helped him open his gifts and explained to him what each one was...
Was a moment to behold...
It was a nice Christmas morning...

Dick and I went back to Mercy to take some goodies to
their potluck... for the Nurses working in the pediatric center.
Was nice to see everyone and visit... Nice also to know that Hollister was at home...

We spent the rest of the day...watching movies and enjoying
our time as a family...God is good and we are thankful for
one more Christmas...the five of us....

Thanks to all our Friends who helped make our Christmas
so Merry...Santa is alive and well...Thank you Thank you!!!
Merry Christmas to all...

The kids have been busy doing what kids do...Malls, movies,
friends, hockey games, sleeping late, playing games, lunch,
fighting...and enjoying their time away from school...

Hollister has been fighting a cold all week. I am not
surprised...but so far it is just a cold and he looks good.
We have been standing him and stretching him..trying to keep
him ready for therapy....

Hard to imagine 1 week at home has passed...We are going
for a record...
and continued improvements in his health...and recovery...

We are still enjoying our Christmas tree and all of the
yummy cookies...so let the Christmas spirit continue to
fill your hearts...

Team Tough needs lots of prayers as our journey continues...

May the spirit of Christmas bring you peace,
The gladness of Christmas give you hope,
The warmth of Christmas grant you love.
~Author Unknown

Sunday, December 23, 2007 3:23 PM CST

We are home!!!
(sorry it has taken so long to update..I have so much to
say...but we are having some computer problems at home...
no fun....)
We got home Friday between 3-4...How great is that...
I had forgotten it is winter...We were inside the hospital
way to long....we had a couple of very nice surprises
waiting for us when we got home....
We have a beautiful Christmas tree, that was brought by
Santa's helpers...it was lighted and glowing when Hollister
and I came in...Thank you...
and...
We had Christmas carolers....just like on TV...They were
a group of kids from Dowling with roots to good ole
St. Theresa.. Hollister enjoyed them as much as we all
did. He sat in his new rocking chair...smiling...It was so
nice. They music was very entertaining and joyful...
What an awesome homecoming...made it so special for us...
Thank you to Connie and Gloria( the Mom's)..Thanks for
bringing the carolers....We loved it!

When I say Hollister was sitting in his new rocking chair,
it came home with him from Mercy...The story is.....
I have been trying out different chairs for over a year.
Hollister likes to slide out of chairs, put his legs over
his head and sit like a ball...and slide out of the chair..
The perfect chair has evaded us until...last Monday...
When we came out of the PICU, there was a Widsor back
rocking chair in his room...When we sat him in it, it was
perfect for him!!! So when, Jan the social worker came in
on the Thursday asking what I might need at home to take
care of Hollsiter...I said, "this Chair"...and she said...
"take it"...so she talked with Jerri the Director of the
unit...and we brought home the chair....How awesome is
that...clearly above and beyond... Thank to the girls that
made this possible...We love his new chair....

A Shameless pitch...If anyone is looking for a Tax donation
before the end of the year....A new chair for the Children's center at Mercy...

We are all trying to adjust to being home together...
It gets harder and harder....It is weird and difficult to
explain...Hollister and I have been shut up in a tiny
confined space...and now we are home...takes some getting
used too.
Hooch dog was very happy to see us. He was very glad to
see his boy Hollister. Dogs are very smart...and I think
he worries about him when he is gone....He is relieved to
see him at home!!!

Saturday...Weather, weather, weather....Definetly going
to be a white Christmas...snow and wind...makes for
difficult traveling...Last night Dick and I did get out to
do a little shopping. Was nice, as no one was out...Mall
was quiet..and no waiting anywhere...

Hollister looked a little pale and weak on Saturday...
Makes me so nervous...He has no IV access...so I will have
to try and start an IV if anything goes crazy....
He threw up and threw up right as we got him to bed...
We changed his sheet 3 times in a matter of minutes...
Then, there is the question...did he keep any of his
seizure meds down...AHHHHHHH

He looks good today...more responsive..Hillaree and
Harrison took him to a movie...They are there now...
It took a lot on my part to let them go...but she is so
good with him...and she really wanted to get him out...
so off they went....Harrison is a good helped also.
Strange not to be with him....

The forth Sunday of advent..Hopefully, we are all fully
prepared to step into the Christmas season...I know I am...
I am greatful to God and our gifts. Hollister is home and
with us. We are together...we are still 5 sitting at the
table...Things have changed again for us...but we are
together. Thank you....God is Good....

FOUR STAGES OF LIFE.......

1) You believe in Santa Claus.

2) You don’t believe in Santa Claus.

3) You are Santa Claus.

4) You look like Santa Claus.

Thursday, December 20, 2007 10:49 AM CST

One day and counting...

Hollister is sitting up in the chair, looking very
fashionable in his shorts, t-shirt and thigh high ted hose.
Of course we are watching/listening to the "rice is pright"
Hollister and I are trying to give Drew Carey a chance...
But, he is no Bob Barker!
Other the obvioius fashion mistakes...he looks good...
Medically as stable as he has been in along long time...

Dr. Mooradian was here this morning and an Echo was done
of his heart...(#6 on this admit)....the window is doing
it's job...yeah! no more pericardial effussion!...But,
his heart is still weak with a low ejection fracture...
same as it has been for some time. He will continue him on
the heart med, digoxin..This will help the heart muscle
beat more efficently! and he is starting him on a daily
dose of Lasix...His feet have been very swollen the last
couple days...and the lasix will take some of that pressure
off his heart....More medications...

Tonight is the sleep study...I am hopeful that Hollister
will have a good outcome. This is for his lung function at
night...Is he strong enough to expand his lungs at night
to keep him safe...or will he need a bi-pap at night????
or does he need a permanent tracheostomy???AHHHH
That is a lot of worry!

I hate this disease...and the progressiveness of it all...
Neuro-muscular diseases...SUCK!!!!

I am still planning on taking him home tomorrow. Not sure
everyone on Hollister's team still feels this way. It seems
that there is a way to make more therapy happen...BUT, I
am prepared to go home...

Today is the last day of school for the kids...How great...
Christmas is fast approaching...Dick and Harrison are going
searching for a tree this afternoon. Yeah...It's beginning
to look a lot like Christmas....5 days and counting!!!!

Team Tough is gaining strength...We can see the door and
we are moving forward! Thanks to all who read and write
notes...and to all who think of and pray for Hollister...
You are the energy behind Hollister...Thank you!!!!!

Why does Scrooge love Rudolph the
Red-Nosed Reindeer?

Because every buck is dear to him."
-- Unknown

Wednesday, December 19, 2007 00:15AM CST

Today is the day....
I hit the wall and I am ready to take my Hollister home.
We have been here entirely too long. Since he was admitted
for his heart surgery in September. Hollister and I have
only been home for 14 days...and a few of those days, were
shortened by admits....74 days in patient...Ahhh, no record..but no
fun...

My heart aches for him...I feel all his pains on some
level... What I have learned is that life is important at any level.
It is a preciouis gift worth fighting for.
I long for the moments each day when I can comfort
him, snuggle him and hold him close. He is relaxed during
the quiet moments..that is when we ask God to
keep him close and to continually heal him...
Life is good in those rare quiet moments and this mother appreciates how
good it is to hold her child...

I am very ready to take him home. I put it out there today,
that I would like to take him home by Friday....
I am not sure it will happen, but I am going to push it. It would be great to
get home for Christmas...what an awesome gift that would be.

He will have to have a sleep study done..I am very nervous
about doing this...and I would rather not. I made that
very clear this morning...but I think it has to be done
before he can leave...

He is getting some limited therapy. I would love for him
to have more, but that isn't going to happen...again if
this isn't going to happen, I can take him home and work
on strength training there. Karen is waiting at Blank for him......

He is still very weak, but he is getting stronger each day.
He is able to sit in the chair longer, stand longer, hold
his head up longer...lots of good things...Makes us all happy to see a
little of the "old" Hollister!

Christmas is one week away...
Hillaree is well into her finals week...and Harrison
had his advent program today...and tomorrow is a reward
day for him...They get to go iceskating tomorrow afternoon.
Fun for him.

Team Tough continues to need all of you good thoughts and
prayers...

If you are in the Des Moines area...don't forget about
Jolly Holiday lights...the Make-a-Wish fundraiser at
Waterworks park...Even if you can't go...Make a donation...
Great Kids like Hollister are granted wishes with your
monies....
Life is good.

When we were children we were grateful to those who filled
our stockings at Christmas time. Why are we not grateful
to God for filling our stockings with legs?
G.K. Chesterton

Monday, December 17, 2007 9:57 PM CST

First things First....

To the Scrooge who broke a window in Hillaree's car and
stole her IPOD...Shame on you. We checked with apple and
you will have a hard time downloading new songs on it as
it is registerd to Hillaree...I hope you like her music!
and thanks for breaking the window and causing a great
mess. How rude! She was heartbroken! You certainly caused
a big disruption in the last Monday before Christmas...
and a downer on the week of finals...Thank you...not to
mention you messed with Harrison's morning...causing him
to miss breakfast and have a tough day at school...
One random act of evilness has so many implications..
It is amazing how it can snowball....
Thank you Mr. Grinch...and Bah Humbug to you
It is now between you and God..Good luck to you!

That said....

One week and counting....Christmas is almost here...

Hollister still has a little of that ICUitis...
He likes to be up at night. He was up from 3:30am...
so, I got him up and we sat in chairs....and the most
incredible thing happened....

He looked right at me...and took so much effort...
and his lips move and he said, "MOM!" I couldn't help
but cry...
Christmas came early for me!

He finally got to bed around 9 and slept unti 3...
good restful sleep..too bad it wasn't at night...haha
He was able to stand and take a couple of small ugly
steps with PT.. He was grumbly the whole time. He
still works hard... much like his old self!

Hollister looks good. It is amazing to me how much better
he is doing...I am ever hopeful that the door will open
soon and we will be headed home.

God is amazing...and I thank him for sending so many smart
people into his life. Thank you to all who have provided
care for him in the last 6 years..You all have made a huge
difference in his life and mine. Angels on Earth...May all
of your Christmas dreams come true.

and remember.........

Nothing's as mean as giving a little child something useful for Christmas.
~Kin Hubbard

Sunday, December 16, 2007 10:21 AM CST

Hollister made it out of the unit....

A moment to celebrate......

This was his, I believe his longest stay in the PICU.
Thirty two days too long. Hollister is in the room that
he started out in 35 days ago..

It was not an easy stay in the PICU...Looking back and
reading the summary of his stay..it was down right rough.
Hollister endured so much. His physical body has been
through more than most of us can comprehend. I am tired and
sore thinking about all he has been through. He is TOUGH...
TEAM TOUGH...

The night we transferred him to the unit, we were suppose
to only be there over night..Not 32 days...He was having
seizures....How quickly things change.

I know for myself, Thanksgiving day was one of the worst
days I personally have had in the last six years. I knew
how hard he was working to breath that intubation is
was not far off! Then the yeast, the need of surgery,
the whole thing was very grim...Good to have it in the past!

Today is a new day in a new room. The sun is shining, the
snow is sparkley and it is COLD...Hollister and I have no
concern for the weather....Inside, it is toasty warm!

As soon as Hollister got out to the floor. We took him
to the room that has a HUGE handicap shower. AWESOME.
He hadn't had a shower since he has been here..Not sure
what kind of spa this place is! hahaha I know it felt good
to have all that warm water and soap on his body. He was
happy. He looked and smelled good!

Hollister is till being treated for the yeast...Darn FUNGI!
I think he has 14 more days of medication and then a blood
culture will be drawn.

His lungs are recovering but they are still very weak.
His lower lobes are dimished..and need to wake up.
He is on no oxygen or bi-pap. A CXR was done this morning,
no results yet.

Here's hoping to continued healing for Hollister. His body
will continue to respond and get stronger each day. He is
an amazing young man...I am humbled yet again!

Third Sunday of Advent....

During this last of week of craziness before Christmas,
take time to remember what it is all about. Remember your
loved ones when you are in that line at Target..and be nice
to everyone...Always works for me.

Remember Santa is watching......

Donate blood, sign your organ donation card, and sign up
to be Blood Marrow donor....How great our God is to ask us
to help him with his miracle of life....

Friday, December 14, 2007 10:30 AM CST

The roller coaster ride continues...

Yesterday morning got no better. He didn't rest very well
after the projectile vomitting episode...

At 0630(ish) his whole bed was shaking and he was having a
gran-mal seizure...
I was heartbroken....

Lab work revealed that his dilantin level was only 2 and
his lactic acid was 4.9...
DARN...

I rationalized the seizure....his dilantin was way too low.
I rationalized the elvated lactate...he has had one problem
with his lactic acid since all of this started with the
heart surgery in September. The labs were drawn with in an
hour of the seizure...all of that work during the seizure
would certainly elevate his lactic acid...

He was worn out and slightly medicated..so he slept from
9am until 3pm....then it was time to get up and sit in
the chair...and PT came he stood and tried to take some
steps...
More than I hoped...

I am hopeful this is his last little dinger....

Hollister had a better evening. He sat in the hard chair
and recliner until almost 10pm...not too bad.
Better than I had hoped.

Last night he went without the bi-pap all night.
He did get a blood gas and a CXR, early this morning.
Now word yet but I think no news is good news...If his
blood gas was bad, the bi-pap would probably been put on
so he could ventilate his lower lobes better...

He is awake and up in the chair. We are watching The "Rice
is Pright"...not quite the same without Bob...but still
worth watching.
Hollister has been very crabby the last day or two. He
grumps at me...and I remind him I like to hear his voice
no matter what.

I think leaving the PICU is in our immediate future. We
have been in here a month too long. Will be hard to leave
the comfort of the Doctors and nurses....All have been
great.

Today is the candlelighting ceremony at Dowling this
afternoon. I have always loved going and especially taking
Hollister. His freshman year, it was only a couple days
after he got home from the Mayo Clinic. It was his first
time back to school after his first stroke. It was a very
emotional time for us.
Last year, it was Hillaree's first year at DCHS and we
were able to take Hollister. It again was filled with lots
of emotion. We only miss when were are in the Hospital...

So, our hearts will be there. It is a great thing those
kids with the help of the wonderful teachers to provide
Christmas for all those families...

God is good...
Today, do some random act of kindness...Go out our way to
help someone...Give blood, donate to a worthy charity,
help a neighbor, donate to a food bank...
follow the Dowling kids and make a difference.

Team Tough is gathering strength from all of you....
Keep Hollister close to your hearts...

Thursday, December 13, 2007 4:55 AM CST

This is the first day since Hollister arrived in the
PICU a month a go that he hasn't needed an early morning
X-ray. This means there will not be machine being pushed
into his room any minute...Translates to, I could have slept a little longer...

But NO...

Hollister felt the need to throw up at 0230...and when
I say he threw up, I mean he filled his bi-pap mask and
his bed, with half digested tube feeding....I am sure by
now, you get it...GROSS....and at 0230 in the morning his
nurses and I just stood there...looking at this hugemongous
mess...trying to figure the best way out of it...

It all worked out, he is semi-cleaned up, His bed is clean,
and he has a new mask. I think he thought he would get a
reprive on the bi-pap for the rest of the night..When I
placed it on his face, he fought me and yelled...HEY. but,
it is in place and he is finally resting. He looks very
comfortable.
He is getting a bolus of IV fluid now, making up for the
volume of food lossed. It is a fine line keeping him
balanced.
His lungs still sounded OK, here's hoping none of that
nasty vomit got in his lungs..May take a day or two to tell.

He got to be off the bi-pap all day on Wednesday. He
liked that. ABG's were done at 5pm..and they looked
pretty good. That is good news.

Lots of blood cultures were sent, bacterial and fungal.
Hoping and hoping that they will all be good. Will be
nice to know where we are with the yeast.
I felt bad for him. His poor arms look like pin cushions.
He has no port or PICC line so every time a blood test is
ordered, it is stick. He is a very difficult stick on his
best day...He is very brave and does better than I would.
I hope I never have to an ABG...those have to hurt...and he
is always stuck more than once. He is Tough!

He continues to amaze. He looks good. He is getting
stronger each day! He stood longer and even took THREE
tiny small steps...Not steady or pretty but steps. I was
thrilled. Dr. Hagan was in the room and he stood eye to eye
with her..She asked if he could take a step...and I pushed
his left leg and his right leg followed. It was awesome!!!

Hollister is awake again. I guess I better get back to him
before he takes off that Bi-pap mask...again.

Thanks to all who remember Hollister in your thoughts and
prayers. He is getting stronger each day...Our God is an
amazing God!

Take time to enjoy some Christmas music, a candy cane,
or a cup of Christmas cheer!

Tuesday, December 11, 2007 2:10 PM CST

Rain + freezing rain + ICE + snow +cold
===========================================
NO SCHOOL for Hillaree and Harrison.
They are excited for a day off.
Nothing better than an unexpected day off.

Here in the PICU it is just another day. I have the TV
on and the nurses keep coming in, wishing that they worked
somewhere that shut down when the weather was bad....
but, they don't and Hospitals get busy when the weather is
ugly!!!!

I have to say how proud I am of Hollister.
He is an amazing kid.
He is working very hard to get stronger.

He has been up, standing. It isn't pretty but he has been
up. It is nice to see him stand tall. It may only be for
a minute or two but it is standing.

He has been sitting in a straight chair, everyday since
Sunday. He is able to sit longer each day. He has better
control of his body each time he gets up. It makes my
heart warm, when he crosses his legs. A voluntary movement
that takes so much strength and control..

He also has been willingly drinking. He has been drinking
water, coke, ginerale and chewing ice. He is happy to take
the cup to his lips...It is almost too much for me.I can't
believe it....I tried applesauce and chocolate pudding and
he purposely spit it at me....

His labs are straightening out...and I am waiting to hear
about the microbiology report from the tip of the PICC
line. He is still being treated for the yeast...and that
is all right now...First time in months...no antibiotic...
just the antifungal...

He is still using the bi-pap. He is getting 6 hour breaks
from it. His lungs are getting stronger. We are all
hoping that he will be able to be totally off the bi-pap.
His chest x-ray remains improved but his lungs are very
fragile. His ABG's(arterial blood gases) are good on and
off the bi-pap...Lots to be hopeful for..

On a day that the whole city is shut down....the PICU
is open. Hollister has been working hard and now he
is resting. He looks good, better than he has in weeks.

During this second week of advent...So much to be
thankful for...

Believe it and live it...

Sunday, December 9, 2007 11:49 AM CST

A quiet Sunday here in Hollister's room of hope...
He remains in the PICU, this unit unfortunately is a very
busy place..

The yeast continues to be a problem..A very worrisome
problem. He spiked a temperatue yesterday, his heart rate
stayed in the 150's all day, and his respirations were in
the 30's-40's...Crazy...I was getting tired watching him
work so hard. He was agitated and annoyed by all things
stuck to him.
His bi-pap mask came apart at a seem, unknown to RT
(respiratory therapy) and myself...He was struggling...
and the machine was making a lot of noise...this went on
for about 4 hours...he was not comfortable and kept
trying to pull the mask off...No wonder, I am sure he
felt like he was choking. What a difference it made when
the mask was fixed.
Poor guy, he felt bad enough.

The PICC line that was placed a week ago in his right
arm, had to be pulled out. Yeast came back postive from
the blood culture drawn from the ports..He, again has no
"foreign bodies" to attrack the yeast. Hopefully, that is
IT!. A peripheral IV was place in his hand..for all of us
who have stuck Hollister to start a line, we know this
isn't an easy task....One stick and it was in...AMEN!

No more line for blood work, he will have to be stuck
each and every time lab work is done...Which seems to be
quite frequent...unfortunately.

No breaks for Hollister. Once again he is showing us all
how fragile life is. It is a gift worth recieving and
working so hard to keep.

Today, he looks better to me....His CXR has some "Crap"
creeping up in the left lung...I am hopeful, once the
yeast is KILLED...that his lungs will improve.

He is very weak and tired..He is working hard. I have
him sitting in the recliner most of the day. He is
getting some breaks from the bi-pap..YEAH...and his
feedings have been increased..seems to be to be tolerating
well...

Life in PICU #3...is slowly improving...
We continue to look for the positive and are hopeful
that Hollister will continue to improve and gain his
strength back...

Hollister and I found Christmas music on the radio/tv...
and out our window, the roof top is very snow covered...
I guess Christmas comes, no matter where you are!

Friday, December 7, 2007 11:05 AM CST

Friday..another week..
Trying not to count days...
We are in between snow days...Yesterday and now tomorrow...
and so on and so on....

Hollister has made it 48 and 1/2 hours since extubation!
He is still on the bi-pap but he is getting longer breaks.
Today he can have 2 hours off at a time.

He is having some ups and downs in his labs..Not sure what
it all means. His platelets and WBC are up today. Hoping
it isn't another new bug...No temperature...YET

CXR was OK today, yesterday it was good, even better...
It is amazing what a difference a word can make....
OK, makes me a little anxious....

The yeast is back, bigger than ever. Everyone seems
annoyed by it. Hollister had more than 5 negative cultures
for the yeast...He was on his last day of IV antifungal
medications...and BAM...temperature and a positive blood
culture...He is now on a stronger meaner antifungal....
He will be on this for weeks...Depends on what Dr. Gervich
unveils....
Dr. Mooradian came yesterday and did a heart echo....
looking for a fungal ball in his mitral valve...No fungal
ball seen, no fluid...the pericardial window is working. GREAT NEWS!
BUT....his heart is pumping a little less efficiently than
it had been. He thinks he is tired and there has been a lot
of stress....so for the time being, he added Digoxin....
This is a very old medication that will help his heart from
pumping so hard. Made from Fox Glove...
Which, I thought was a weed!
Dr. Wang(opthamologist) came last night to check out his
eyes. Which was a great idea as he hasn't been able to
have his regular appointments...She said he definetly has
vision...He hated the bright light..She put some drops in
his eyes and did the exam..He hated every minute of it.
But, the good news is there is no fungal ball on the
retina....and his retina and optic nerves look normal.

Any result that Hollister gets that is NORMAL is reason
to celebrate.

Hollister is determined to get better. He has drank a few
sips of pepsi...he knows it is not a coke..haha
He is chewing a lot of ice..He is alert and will look right
at me. He has even said a few words...HOME, MOM and a few
choice words at the nurses..ha
He is stronger than I had hoped. He is able to stand and
pivot to a chair. It isn't pretty, but it is progress.
Gives me something to work on.

He is amazing.I am thankful that he is so determined.

I am thankful for the Doctors, Nurses, Techs, and
respiratory therapists and PT and OT...Everyone daily
makes a difference in his life....Thank you...
I appreciate all you do. I appreciate your kind words,
touch, and gentleness with my boy. He is so worth all
of the extra kindnesses....Not to mention all who are
thinking...Hollister likes to encourage us all to think
out of the box...

Team Tough continues to need all of your thoughts
and prayers...We need continued healing of his lungs,
heart, brain, kidneys, body, and blood counts...
and no more bacteria and fungus....

During this first week of Advent...God hears..........

Wednesday, December 5, 2007 2:55 PM CST

Today is the day....

Seems so much depends on that morning chest x-ray...

So, this morning with the help of Hollister's nurse...
we sat him up at 4 am...seemed like a good idea to us.
He coughs for about the first 5 minutes with the tube in
his mouth/throat...then he was able to sit up for about
15 more minutes...I was hopeful that moving all those
secretions from the base of his lungs that his CXR would
look better...leading to possible extubation...

I was worried today would be the first day, x-ray wouldn't
come on time...that they would be late..finally at 5am,
I went down the hall and showered....and his CXR was
done while I was out of the room...YEAH...

Dr. Napa came in bright and early to review all of his
numbers from overnight....and the dreaded CXR....

TODAY IS THE DAY...
He said, it was a good day....

Hollister was extubated at 10:17 this morning...
God is good....
There was dancing in PICU#3...by all involved and nurses
in the hall....

He is on continuous Bi-pap...He is still having some
difficulties with his lungs..His lower lobes are very
diminished. Hoping the bi-pap does the job!!!
Every hour that passes without re-intubation...is a good
hour...

Dr. Napa wants him to sit at the edge of the bed 4 times
today for 15 minutes each...He is doing a good job..so
far. He is very strong..and he was able to stand for a
couple minutes...I am so impressed by his stamina and
willingness to work hard. My heart swells and my eyes
leak...I never knew how much you can love....

Microbiology called during all our excitment....
Immediate stomach ache and panic in my soul....
Looks like there is a positive blood culture for yeast...
AHHHHHH
Blood cultures were redrawn...wait and see, what it all
means...Dr. Gervich will be in later today.
Tomorrow, we will know more about this horrible yeast...
OUT DAMN BUGS OUT!!!!!

For today we celebrate each and every minute that Hollister
remains extubated....

God is good...and God is able!

Tuesday, December 4, 2007 11:13 PM CST

Oh what a day it has been.

Lots of ups and downs in this roller coaster ride...

The chest tube was taken out this morning!! Yeah...
Comes out a lot easier than it goes in. A snip of the
suture and a quick pull..and it was gone. Hollister didn't
mind much!!!
That is a great thing.

The ventilator settings were again lowered to C-pap this
morning. He has done OK with them today. Coughing up
lots of crud....I am getting anxious to get the ET tube
out. It has been in since Thanksgiving night....Too long!
I continue to be postive that it will come out and he
will be able to support himself...There is some concern
that he will not be able to support himself and breath
in enough volume to expand his lungs...and at that point
he will have to have a permanent tracheostomy...
I did remind Dr. Napa today that WE in PICU #3 will remain
hopeful that Hollister is very strong, strong enough
to breath on his own when he is extubated. He too wants
to have faith and hope!
The CXR in the morning will more than likely show him
what he needs to know...

Hollister was able to sit at the side of the bed twice
today. He is doing well. He has good core strength.
Once he gets all the mucous and "stuff" up from his
lungs, he sits up strong!!!

His gut is moving along...He is tolerating about half
of his feed. Those are good nutritional calories.
He is getting the rest from TPN. Last Monday all I could
think was...he needs to Poop...Well God heard and answered,
he is eating and pooping....Life is good!

His H&H had dropped again today. He did get two units of
blood tonight. Thanks again to all the blood donors.
What a difference you made tonight.

I am certain, that Hollister will breath unassisted on
his own again. I have faith and I believe.

Please pray for Hollister and his lungs, and the ability
to breath and fill his lungs with air. Please pray for
his continued strength and courage and his powerful will
to live....

Team Tough is strong.....

Tuesday, December 4, 2007 3:54 AM CST

I can't believe I didn't get note posted on Sunday or
Monday. My intentions were good. I have the computer in
the room, sometimes it isn't possible to have a quiet 30
minutes. Hollister demands a lot of time, just to sit by
him and hold his hand, rub his head, to have contact with
him...hard to walk a way.

Alot going on....

Sunday morning...2am...The nurses were turning Hollister
and he started to vomit...of course he aspirated some into
his already hurt lungs...I was pretty nervous...I could
see the yellow from his pills in the ET tube...not a good
thing. The nurse keep using the suction hooked up to the
ETT(ballard suction) and kept pulling the vomit out of his
lungs...She did a great job and keep it up until the suction was pretty clear...
Aspiration, not a good thing..
CXR worse in the morning...
No Chest tube out and no Extubation....
The Ventilator was turned up, letting his lungs rest...
yet again....
Unfortunately, his sputum culture is growing another
BUG or two...another antibiotic...Now he is back on three!
Temperature continues to spike at least once a day.
Lots of tylenol, motrin, ice, and a fan running.

Infection and bugs looming...time to get out more lines..
The foley catheter was removed...and the arterial line.
Yeah...More freedom to move...

Dr. Noble(surgeon) felt it would be OK to start some
"food" into the gut...so he started with a tiny bit of
pedialyte into his button. Seems to tolerate well...
resuming all of his meds...finally!

Monday morning, his vent setting were turned to C-Pap to
see what he could do....He did fairly well for a few hours.
He even sat up and did OK...but as time went on, he
appeared to have a lot of stress...his heart rate went up,
his respirations went up, his temperature went up, and his
Oxygen saturation went down...
he started vomitting the tube feeding that had been started
in the morning...he was uncomortable....

The IV sedation(morphine and versed) were stopped one in
the morning and one at 6pm....
A lot going on...
One more line removed...The midline IV started to leak and
is out....YEAH!!!!

Infectious disease stopped the vancomycin...blood cultures
are looking good...Down to 1 antibiotic and 1 antifungal!

He was nauseous most of the evening...Lots of mucous,
causing him to puke!!!

Around 9:30, it appeared he wanted to sit up. He was
swinging his legs over the edge of the bed and trying to
grab the side rails....so up we went..He was able to sit
up for almost 20 minutes. The is awesome. He coughs and
coughs...

Not sure what the day will bring. Waiting to hear about
labs and CXR..and the weaning of the ventilator!
Hoping the chest tube will be pulled today!! It appears
to this uneducated eye that the drainage has been minimum.

Harrison's Mock trial team got 9th place...out of 240...
I am very proud of all their hard work. For middle school
kids, they show a lot of determination and pride in all
they do. I know they are all disappointed..but I know
next year they will be on top!

Keep Hollister close to your thoughts, prayers, and hearts!

Team Tough is made strong by all of you......

Saturday, December 1, 2007 11:19 PM CST

Much has happened since Thursday morning. Hard to believe
it is now December...
Hate to think that Christmas is on it's way....Not sure how
Halloween and Thanksgiving passed so quickly...

Today, was certainly winter...ICE, COLD, and more ICE!!!!

Thursday, Hollister had a very rough day...His left foot
IV infiltrated..leaving only one in his right foot..and
it didn't look good.
A PICC line was almost inserted in his left arm...but
it was left in and is being used as an IV..a PICC line was
inserted in his right arm...

He remains intubated, and his vent support had to be
turned up in the afternoon, he was working very hard....

His CXR and Chest ultrasound showed a very large effusion
in the right lung...AHHHHHH
A chest tube was place about 6pm...That was very painful
for Hollister..He was very upset and cried and cried.
No fun for Mom either...
When the tube was in and the CXR was done. He settled
down and rested. He immediately drained 500ml's from
the chest..His breathing was better ,his heart slowed,
and he was resting...
I am hopeful he won't need it very long...

Friday was a much quieter day.
He continues to poop and we continue to celebrate. The
surgeon remains hopeful that we can fix the adhesions with
an elective surgery and not an emergency.
He also said it would be OK to remove the NG tube...
Yeah...finally something is eliminated...

Saturday again brought anxiety...

His CXR is worse again...Need it to be better so we can
work on extubation(removal of the breathing tube). His
labs continue to jump around...Lasix was started again
today, hoping to eliminate some of the fluid in the lungs.
This is also hard on his Kidneys and potassium...
Rock and hard place!
His foley cather and arterial line were removed...Yeah...
2 more tubes gone...Starting to elimate things that could
increase infections...any line into the body is a chance
for a BUG...and we hate bugs...
Nice to pull out all the lines we don't need. Anxious to
get the chest tube and endotracheal tube out.....can't
be soon enough.

We were able to sit him at the side of the bed twice today.
He is still very strong. Makes him cough and cough...
This is so good for his lungs...

Hollister's strength and courage amazes me each day with
his desire to live. God's gift of life to each of us is
the most incredible gift...and to see Hollister truly
value his gift...inspires me....He is a wise teacher and
I am his humble student!

To the Dowling Girls Cross Country team...
The Dowling Warriors..or as Hollister and I call them..
The Dowling 7...
Congratulations to them...and Father (Coach) Kirby...
They ran in Oregon today at the Nike National Team
Championships...Placed 14th...WOW..
Katie got 2nd Place...
and Ashlie got 15th place...
all the girls did great...What an Honor for them, the
school, and the state...

God is good!

Thursday, November 29, 2007 5:52 AM CST

Tonight is the night...Dallas/Greenbay game...
Unfortunately, we will not see the game...it is on a
channel the hospital doesn't have...We will be cheering
the Cowboys to a big win...in our hearts..

Today is the start of the middle school Mock Trial
competition. Harrison is excited. I felt priveleged to
practice with him. He is going to do great. He is prepared
and has a lot of confidence in his words...and actions.
He has a flare for the dramatics! Imagine that!
Go St. Theresa's...I am very proud of all thier hard
work!!!Sad not to be there with him!

Hollister is still intubated, the breathing tube is
still in place. He is being weened off the vent. This
is very confusing if you aren't here to understand or
see it. The machine is still offering some support with
the strength or push of his own respirations. He is on
room air with no other oxygen. I am sure the Doctor will
again make so changes to the amount of help he will get.
Hollister has been tolerating it so far but he has been
working very hard! He definetly has good respiratoy drive,
we will have to see if it is enought to support him.

His belly is much softer and less distended. His gut is
looking much more Hollister like and a lot less Mom and
Dad like...ha..He still has a lot of stool and gas in
his gut...but it is moving...We in PICU#3 continue to
cheer and do the poop dance...when we can!!!
The surgeon has been very nice. He comes each day to check
on him. He is hoping it will all settle back down. The
adhesions around the small bowel will have to be addressed
but it would be much nicer to take care of that when he
is in better shape!! It is nice to hear, that we have the
luxery of time. Hopefully, we will hear that again today!!
Music to my ears.

His labs are starting to align themselves...His postassium
has been low..and he is getting lots of it..I remember when
he ate 17 bananas at St.Theresa hot lunch..(I believe they
were 1/2 bananas...) He was very proud!!Might still be the
hot lunch record! He did love the banana!
His kidney function has increased. Not perfect yet, but
improving. His C-reative protein(shows infammatory process)
is coming down...AMEN!
H&H(Hematacrit and Hemoglobin) are also staying steady...

He has been way more alert and awake. He was very weepy
yesterday. He looks very sad. His eyes have been very
expressive. Breaks my heart. I try and sit by him and
hold his hand...always. He responds to me and seems to
be comforted...I try and reassure him that the tubes will
be out soon! I talk and talk to him...sometimes I hear the
nurses at the desk laughing at my onesided converstions
with Hollis.

We continue to sit him up at the side of the bed, at least
twice a day. He is much stronger, his trunk control is
getting better. He continues to move his legs as needed
for comfort. He is still very strong. He has lost some
serious weight. I am hopeful that his gut will be ready
to use soon. He isn't getting all of his "cocktail".
He is getting TPN, calories absorbed through the gut are
better...

We will see what the day brings.

We in this room continue to be hopeful and optimistic
that Hollister is strong enough to fight all of the
bugs and inflammation. The Doctors and Nurses have been
so encouraging to him, letting him know that he can get
better. Hollister is the leader and we all take out cues
from him...and he is fighting...I will advocate for him
as long he needs me too!

His Faith and endurance makes him the toughest boy I know.

Thanks to all who continue to pray for Hollister.
He gathers strength and courage from all of you!
God hears and answers!

Good Luck to the Mock trial team!

GO COWBOY'S!!!!

Tuesday, November 27, 2007 3:51 PM CST

Not sure where Sunday and Monday went...Tuesday already?

There is a lot going on in PICU#3....

I am choosing to focus on the positive and to be
extremely optimistic...I have Faith in Hollister and
God!
Enough said!

Hollister remains intubated....but as of noon yesterday
he is breathing on his own..Respiratory Drive INTACT!

His CXR is FINALLY starting to look better. It is
not good yet, but it is better...

He has been awake, making eye contact and moving all of
his body parts...Even tried to extubate himself on
Saturday night..took Dick and I and two nurses to hold
him down, until he could be sedated enough for us to
refasten the tube. He is very strong!

His metabolic labs and markers are all with in the
normal values..YEAH!!! His blood count seems to be
up and down...The kidneys are still working hard and
their labs are high...this is from all of the
anitbiotics..

His temperature occassionally spikes up to 103...
Lots of Blood cultures...Good news, the yeast is finally
done growing in the blood cultures..He will continue
the antifungal medication for 14 more days.
The bad news is he is growing another bacteria. He has
already been started on the Vancomycin. This is another
drug that is extremely difficult for the Kidneys to
process. What is happening in Hollister is that his
normal flora is probably on vacation. The antibiotics
have asked them to vacate also...and they have...leaving
him unprotected from the bad guys...
Our Mantra this week is....
OUT DAMN BUGS OUT!!!!!!

His GUT....What started out as an illeus on Saturday night.
(Pain when his gut became acute, is what woke him up
trying to extubate himself)
Sunday moring he was very distended...he looked miserable.
The x-ray showed distended bowel with lots of stool...
OUCH...and YUK...
Yesterday he had a CT of the abdomen...Which was
extremely difficult...To move him in his bed to the
first floor...Kudos to the nurses who made it look so
easy!!!
The CT showed a partial obstruction in the illeum
(part of the small bowel), there are a lot of adhesions
there. Possibly, this is from the small bowel perferation
last summer...
His gut is less distended today. The Naso-gastric tube
is pulling all of the bile and air from his gut letting
it rest....
and He POOPED today...all on his own...There was cheering
and dancing. A fart and a poop something to celebrate!
The surgeon is waiting to see if it resolves on its own
or he may possibly need surgery....
I am hopeful this will happen....More farting and pooping.

PT came in yesterday and helped Hollister, intubated
and all, sit up at the side of the bed. Unbelieveable!!
I was thrilled. Moving is good for all systems...lungs,
heart, and GUT!!! not to mention his muscles...
Dick and I were able to sit him up again last night, he
made it 10 minutes...AMEN..
Again at lunchtime with my friend Peggy Carpenter
(who is also a PT) he sat for more than 10 minutes, this
was after some great stretching!!!

It was all fun and games until his Mother pulled out
one of his IV's...I can only imagine how mad he would be
at me...The nurses were nice and a new one was able to be
started without too much trouble...I am glad they didn't
kick me out..haha I promise to be more careful. I am very
thankful it was NOT the Arterial line...

Life is worth living and celebrating...even the smallest
victories..

Team Tough appreciates all of your prayers of Healing...
God is listening!

Saturday, November 24, 2007 0:01 AM CST

Oh, what a day it has been...

Hollister is still intubated. The machine is doing all of
the breathing. He is getting enough morphine and Versed
that he appears to be comfortable with the tube.

His temperature has been above 101 all day. He is getting
tylenol and motrin around the clock. He looks like he
doesn't feel very good.

He has been having seizures all day. Makes me nervous to
think that he is wasting energy on seizure activity.
The versed will help him...

His hemoglobin was only 6 today...He was transfused today
with 2 units of Blood...Thank you to all A+ donors...
The life you saved today was Hollister's...I like to
hope that one of the units was Dick's he is A+..and
we are regular donors....If you are't a blood donor...
roll up your selve and honor Hollister......
His color is a little better tonight..Anxious to see
his labs in the morning...

His BUN and Creatnine are elevated. This is the labs
for his kidney function. Not good. Probably from the
Gentamicin and the length of time he has been on it.
The lasix has also been stopped. Too many drugs that
are very hard on his kidneys. Hopefully, with time and
rest...they will be OK.

What lies ahead at this time is unknown. There is
serious concern about his respiratory drive and how
long the tube will be in. His CXR was about the same,
not better, not worse..Same is OK. Hopefully, when it
is time...his respiratory drive will remain intact...

It has been another long day in the PICU...
Hollister is very tough and I know he will respond
to treatment...

Team tough continues to ask for thoughts and prayers
for Hollister. Pray That his brain and heart will be
protected, his lungs and plueral spaces will be clear
of gunk and fluid, that the inflammatory process heals
it self, the the kidneys will heal, that the yeast will
be gone....the list is long...

Friday, November 23, 2007 1:18 AM CST

Thanksgiving is over, let the shopping begin. Hillaree
and Grandma were headed to the Mall at 12:01....Not to
shop, but to view Hillaree's artwork...She has a picture
that she drew of Hollister and her, displayed there....
It is part of the DCHS art club...How great...

We enjoyed a nice Thanksgiving meal with the PICU staff..
A pot luck that had all of the trimmings...and more...

Hollister had a horrible night...no sleep. We tried
having him sit in a recliner most of the night. He
struggled and struggled. He couldn't breath enough
to keep his oxygen saturations close to 90....
It was rough on both of us.

Horrible only got worse...
around 10:00..the doctors came in and told us even
worse news...
Hollister has Yeast growing in his blood...Never
knew that could happen...
We need to get to the bottom of this.
Hopefully, we have....
We had to wait and wait...He finally went to surgery at
7pm....It was very comforting to have an Anthesiologist
who I have known for 15 years take care of him. A nurse from my
Charter days was in the OR with him. She has known him since he was 3.
Helped my anxiety level....

I am relieved to have that in the past.

He made it through surgery and is now portless...
He is very sick..

He is intubated and on a ventilator tonight. His temperature is slowly
creeping. He is very pale. It is hard for me to imagine just how sick he is...
He looks fairly peaceful...I hope his body can rest...and recover!
The machine is doing all the work!

It has been a very emotional day for us. It is hard to see him so sick and
struggling to breath. Thank your Father kirby for giving up time
with your family to give Hollister (and all of us) the boost we needed.
Go Cowboys!

All that is going on with Hollister, I have decided that I really know very little.
The gratitude I have for the Doctors, nurses, and all who have cared, is
ginormous!...Thank you!

I decided this morning...that this is Thanksgiving...
and today is the last worst day...We are only thinking
positive happy thoughts in Hollister's room....

Team Tough needs happy thoughts and sincere heartfelt prayers.

Thursday, November 22, 2007 3:10 AM CST

Happy Thanksgiving day!
Looks more like Christmas with all the snow....

So Much to be thankful for.

Since Hollister had his first stroke in 2001 and was
diagnosed with MELAS, this is the 3rd Thanksgiving in
the hospital.
No fun for someone who loves this day as much as he does.
He loves everything about today...
Parades, football, card playing and of course Turkey,
Mashed potatoes, gravy, olives, and brown and serve rolls.
He would eat more today than any other day.

So Much to remember and be thankful for......

Hollister continues to create a very large amount of
activity here in the PICU. He is very very sick.
He is encouraging everyone to put on their thinking caps
and find answers.
This is a different "wierd" kind of sick. There appears
to be no comfort zone for us.

His lungs continue to worsen each day. I hold my breath
waiting to hear with the CXR has to show. Yesterday an
ultrasound of his chest was done to see exactly how much
fluid was choking his lungs....Way too much!
Chest percussion is helping to break up "junk" from the
inside of the lungs. The Bi-pap has been turned up and
so has the Oxygen pushing through it. A new mask to help
with the ulcer on his nose. He is struggling to keep his
oxygen saturations in the high 80's and low 90's...
this is not good enough.
Copious amounts of tenacious mucus continues to be
suctioned from him. This goes on 24 hours a day.
Sleeping is at a minimum in PICU#5.....

His labs are making things very difficult. His lactic acid
(a marker for his metabolic status...)has been perfect.
His CRP(C-Reactive Protien) is very high 4x normal.
This indicates there is an inflammitory process. This has
been up and down since August...maybe longer.
As suspected..he is malnourished...and needed a bolus of
Albumin this morning.

The lasix has been doubled. His urine output finally has
increased. His body is holding on to every drop it can.
A negative intake compared to the output, was finally
achieved yesterday. Now, his pictures and assessment need
to show that it is the fluid in his chest that is moving.
Trying not to put in bilateral chest tubes!

Dr. Hagan(the PICU intensivist) asked Dr. Mooradian to
talk to a metabolic doctor..(as I mentioned some time ago..
we are short a metabolic geneticist....Our last two have
left the Mayo Clinic)....He had prior to surgery talked
with the Geneticist in Iowa City...
After surgery he was advised by Iowa City to call the
Cleveland Clinic and talk to Dr. Cohen...(We have heard
him speak the UMDF symposiums several times)...He never
returned any calls...
So, the Wednesday before Thanksgiving....Dr. Hagan wants
Dr. Mooradian to call him to get some idea on how to
treat Hollister and with what...
I am thinking to myself...Good Luck.
God is Good.
Dr. Mooradian and Dr. Cohen connected....and very
timely. Unbelievable.

From the beginning, Hollister was NEVER be given
steroids. For the last 10 weeks Hollister has been treated
with everything but steroids...Dr. Cohen said it would be
OK to use steroids(Solumedrol)for a few days to try and
help Hollister...

Big day...and big night...

Congratulations to Harrison and his Mock trial team,
they got second place and a chance to compete at the
state level...Way to go St. Theresa's!

Thanksgiving day...Enjoy all that is right....

Thank God.....

Tuesday, November 20, 2007 1:55 PM CST

It is dreary and cold outside...
sounds like winter is just around the corner...

Hollister is struggling...
The CXR is much worse. The fluid in the pleural space
is way too much...this is making breathing very difficult
at best. The doctor is hoping that he is fluid over loaded
and the fluid will move with the help of lasix(a strong
diuretic)...a foley catheter was placed this morning,
very much against Hollister's will.
This is all very hard to understand, as Hollister usually
runs very dry and can handle massive amounts of fluids.
Especially, IV fluids.
His lungs are not the best either. It is hard to know
exactly how bad they are until the fluid goes away.

His breaths so much better sitting in a chair, for
obvious reasons...at 5am this morning..I was very
anxious to get him to the chair. The problem is that
sitting up is very difficult for him as he is very very
weak!!
The continous Bi-pap has caused a very large ulcer on
the bridge of his nose. That can't feel very good.

He had a seizure this morning...to add insult to injury.

My heart weeps as I watch him struggle and endure so much
unnecessary pains. He is so strong. I am constantly
reminded how precious life is...even a broken one.

I for one have faith that Hollister will recover...
and he will continue to inspire...friends new and old!

I am sitting here waiting to hear from Harrison. Today
is the Mock Trial competition. I am sad that I couldn't
be there to watch him..I missed last year also. I know
both he and Hillaree understand why I can't be at thier
events....
but I can imagine there pains too!
Anxiously waiting for him to call...

On a happier note...Today is Grandma Jo's birthday...
Happy Happy...

Monday, November 19, 2007 7:41 AM CST

Was a very tough weekend for Hollister and Team Tough.

Friday afternoon, Hollister was finally started on the
TPN(Total Parental Nutrition)...Calories...
He was also getting 20cc of pedialyte an hour through
his button, to see how his gut would do.

I was counting the hours since his last seizure.
Quietly to myself..6:10pm came and went...48 hours...
11:30pm(53 hours and 20 minutes) BAM...SEIZURE!
Ativan...2mg....2 mg...
30 minutes later his eyes moved...
He was struggling all night...and his temperature started
rising...Tylenol didn't touch the fever nor his comfort
level. He looked rough..It seemed the darkness of night
went on forever. He didn't rest until after 4am..

Saturday, his CXR was bad. We were told he is very
sick and much worse. His left lung is not moving air and
the right wasn't doing much better. The bipap was increased
and oxygen was added. He started wearing it continually.

Dr. Becker(cardiologist) came in and did another Echo to
make sure the heart is still OK...and it hadn't changed
since last Wednesday...BUT there is a very large amount
of fluid in the the pleural space. Not surprising but
certainly not good!

His temperature keep rising...close to 103..
His heart rate was very fast, his respirations increased,
his blood pressure was high and his Oxygen saturation
was dropping.

Dr. Napa(intensivist)gave me a job to do...He said that Hollsiter
needs to be turned every two hours, on his sides elevating his lungs..
allowing the bi-pap to reach the lower lobes.

Well, when I am given a job....I take it very serious.
Once the motrin arrived 16 hours after the seizure.
(5 hours after I asked for an order)...to help the tylenol bring
down the temperature..
I started turning him and turning him. He didn't love it.

The continued tylenol/motrin and his temperature was
down. The continued repositioning helped his oxygen
and breathing. I felt a little better Saturday night....

Through the night, for the short time I rested in the
chair next to him...No turning....

I couldn't wait to move him, I called Dick early and asked him to
come in and help me.

As for as I can tell I was having a Shirley McClain
moment from her Character in "Terms of Endearment"......
It is hard to watch your child be so sick...When you know
your heart is breaking.

I want him to always be taken care of as I would!

His CXR was a little better on Sunday, not good...
but some improvement was shown. I told Dr. Napa...
his words were much kinder.

He rested most of yesterday with the bi-pap on.
Dick and I were able to sit him in a chair last night.
(lofty goal of the day) Wasn't pretty, but had to be
good for his lungs, to be upright.

He had a much better night and he was turned frequently.
He had a very productive cough early this morning with no
vomitting....

Even small progress is still progress...

Continue to hold my Hollister in your heart...
and let your happy thoughts go to God.
do a good deed and offer it up for Hollister!
I know he would do it for you!

Be thankful for all you have,
especially while you still have it!

Friday, November 16, 2007 6:00 AM CST

Friday already...not sure how it can be.
Time seems to be measured in minutes, moments, and hours.
Certainly not days!

Hollister is still in the PICU...He is sick and struggling.

First, his MRI showed no substantial changes!
That is better than I hoped. This is the preliminary
result...the Radiologist and the Neurologist will continue
to compare it to old records.
It was in the wee hours of the morning, when I was told
the results...and I couldn't help but weep...

The neurologist is still trying to figure what some of
the changes in his ventricles mean. She is still trying
to rule out lots of "other" equally horrible ideas...
and to figure out what is going on!

A CXR early Thursday morning showed considerable infiltrate
in both lungs..(pneumonia)! Hard to imagine with all of
the antibiotics he is on that this could happen. Possibly, he aspirated
some of the vomit. He is miserable! He is running a temperature and
isn't very comfortable with all of the coughing.
He has been on Bi-pap since yesterday at lunch time...
6 hours on and 2 hours off. He has been tolerating it when he sleeps....
He has been working so hard, so this has allowed him to
catch up. The Bi-pap forces air into those lower lobes.

He is still vomitting..no calories yet. TPN was to be
started yesterday...but Pharmacy isn't playing well with
others...so thanks to Hollister's Nurse Amanda..a
castrophe was avoided...Thank God for NURSES!

He is weak and has lost about 10 pounds..He doesn't have
much more to spare...Calories are needed!!!
Metabolically, he is still fairly stable and
his lab work continues to straighten itself out.

Lots to HOPE for.

I continue my on going conversations with God asking
for healing for Hollister, for his brain and body to
rest and be comforted and to let his Doctors and nurses
and all who help him to listen and find answers....

Here's to better Friday and a good weekend!

Keep Hollister close to your heart.

Thursday, November 15, 2007 0049 AM CST

This day had many ups and downs...

THE UPS...

Hollister was up early this morning...and he looked
pretty good after a good ole sponge bath and a hair
wash and shave. He even stood with help and sat in
the chair. He was alert.

AMAZING....

Father Kirby came by to visit..He and Hollister have
always given each other a lot of grief over football.
Hollister is, as we all know a Dallas Cowboys fan and
Father Kirby is (to bad for him...)a Chicago Bears fan!
I think Hollister still has in his wallet money from
previous bets...(Hollister was always very tight with his money!)
Father Kirby was able to annoit Hollister this morning.
He has done this for Hollister on several occassions,
It is very comforting to know just how close God and Hollister are.
He has always been very honest about his faith and spirituality...
I imagine God laughing at my feeble attempts of reminding
him how important Hollister is to me.
I truly get how precious, special, and what a gift Hollister is.
....and I know God knows him better than I do.

He also was able to get a hair cut...one of the nurse
techs(from PICU) Kari, came to his room and cut his hair.
How great is that. He looked so great. She wanted to make him look
studly! and he did.

He slept well this afternoon. He seemed to be headed
in the right direction.....

Hillaree came and spent time with me after school.
Was good to catch up. I miss my girl...
Dick and Harrison came for an early supper.

THE DOWNS...

6:15pm

SEIZURE....

Lots of vomitting...
Ativan...
Neurologist wanted to get MRI tonight and not in the morning...

Hard to explain exactly what is going through my heart.
An MRI is exactly what I don't want...I can only imagine
that it can't show anything good.
Need it to rule out fluid on the brain....

He made it to MRI...cart ride vomit...MRI done..
Longest "20"minutes of my life....

He transferred to the PICU...
He was given a bolus of Cerebrex(equivalent to IV Dilantin)...
He is very sedated from that and he is exhausted from
the events of the evening. He slept very peacefully for
a short time...
Another round of violent vomitting and wretching...
It is so hard on him. His brain is in trouble.

The MRI is done, the results will be what they are...
Tomorrow is here.
Team Tough(especially Hollister) needs EXTRA thoughts
and prayers....

Tuesday, November 13, 2007 2:07 PM CST

Our stay at home was very short lived. Hollister appears
to be stuck in a sling shot and we are back at Mercy.
He has quickly become a regular here on the third floor,
pediatrics. Many new friends are quickly becoming trusted
old ones.....

Over the weekend, Hollister had some serious ups and
downs. Saturday, for the first time since September 25,
he got a real shower. No tubes, IV's or incisions...
showered, shaved and soaped...I can only imagine have
great that felt. He looked and smelled great...even his
teeth were sparkling!

He continued with the nausea and vomitting..Between the
IV fluids and the antibiotics he appeared to by hydrated.
Keeping his seizures meds from being thrown up was the
challenge. So far his levels have been OK..

No nutrition has been a problem...No calories to feed
those nasty little mutated energy stealing Mitochondria,
leaving the healthy ones little to survive on.

Sunday afternoon, Hollister woke up from a nap..He
looked rough. His breathing was labored and he had a
seizure that last entirely too long. I was nervous
about giving any diastat(rectal valium)because of the
breathing...so after 2 long hours we headed to the
ER via ambulance...(we love squad 9)....
IV ativan, a nap and Hollister looked good. His lactic
acid was 1.8..perfect...and we headed home. Happy.
He was tired but he looked OK.

Not to last. He woke up seizing and puking at 0230...
He finally rested at about 6 AM...after two 20mg
doses of the Diastat and lots of Klonipin...He was
spent. Scary for all involved....

We brought Hollister into Mercy around 3:30 yesterday.
He looked better than he had all day. Hollister was
seen by the New Pediatric Neurologist here. I liked her
very much. She wanted to do a CT of his brain. I am very
nervous about any scans being done. After last summer,
we know his brain is hurt....hurt real bad.....
She did do a CT without contrast to check for a bleed.
He tolerated it well....and there is no bleed.

He had a very tough morning. He started seizing at
1010...he got 6 mg of ativan...and he finally rested
at 1:00....He is resting now....
Lots of lab work, checking every metabolic test...
and this afternoon he will get an EEG....

Hollister is in serious need of your precious words to
God! My faith remains intact that God is holding
Hollister close to him and he hears all in our hearts.

Friday, November 9, 2007 8:15 AM CST

It is good to be home.
What a busy home it is.
I am always amazed at how, life goes on all around us.

The yard is full of leaves, it is cold outside and
fall is almost over.

Hillaree is done with swimming and diving...She is in
Colombus, Ohio. She left Wednesday night, shortly after
we got home from Mercy. She rode a bus, full of Teenagers,
with a few LUCKY chaperones. She is at the NCYC(National
Catholic Youth Council). I am very sad that I am not with
her. Hollister and I made that trip his Sophomore year to
Houston. What a great experience. It is a life changing
event. I can't wait to hear and see what she brings home.
When I talked to her last night, she told me she was in
line getting some dinner...and two Sisters(Nuns) where in
line behind her.(No this is no Joke!) The line was overwhelming.
One of the Nuns tapped her on her shoulder and asked
"if she would order their food with hers?"..No problem. When they parted
they commented to her on what a nice girl she was. They asked her where
she was from and here name. They told her they would pray for her...
and she asked them not to pray
for her, but for her brother Hollister who has been very ill...
Now, thanks to
Hillaree we have Sisters in California praying for our
Hollister. God is GOOD....All of the time!

Harrison is busy, Mock trial, competition is in the near
future. He is also playing basketball and Hockey. He is feeling better
with the new antibiotics. One pill and he thought he was better..haha
He has a Catholic School Dance tonight.
Anyone who has attended Cathlic School in the Des Moines area...
Knows how important these Mixers are. I remind him to ask
the girls to dance. I remember what it was like to go to the dances
and never dance.

Hollister is struggling!
The nausea and vomitting continue. I am holding his food.
Yesterday, he vomitted everything I gave him. Nothing
is easy for him. He had a seizure yesterday about noon.
He is testing and checking my sanity. So...he slept most
of the afternoon. The antibiotics are keeping me busy.
But, so far I have managed...5 doses down! I am also
running some IV fluid to keep him going until he can
keep some of his food down. I am very tired of the beeping
that IV pump makes when it needs attention. Irritating!
I fear that his vomitting is worse with movement. Makes
me wonder what the stroke in his brain is doing. I am
trying to not to overstimulate him and let his brain and
body heal.....

Looks like a nice fall weekend in the forecast.

Continue to have happy thoughts and prayers for Hollister
and his Team...Wondering just how tough we are?

Wednesday, November 7, 2007 5:00 PM CST

HOME SWEET HOME!!!!!!

Tuesday, November 6, 2007 11:25 PM CST

One whole day without the pericardial tube....
So far...so good.
No signs or symptomns that the window is not working!!!
I would imagine that Hollister has noticed it is gone.
He never pulled at it or touched it but I think it
would have at least been very annoying if not a little
painful when it was pulled or tugged on.
For me, it has been strange not keeping a very watchful
eye on it. Everytime, he moved I would say to anyone
or everyone...WATCH THE TUBE....at home, sometimes it
was only the Dog who was there and listening...But...
I still said it...ha
as of Monday...no more tube...
Hollister will see Dr. Mooradian next week at the office!

I have to say that, we in Des Moines are very lucky
to have this group of Pediatric Cardiologists. They are
a very talented group, with very big Hearts....no pun!

Hollister is very weak. OT/PT came today and worked
with him this morning. What a difference 2 weeks in
bed makes. I did not like what I saw. His left side
is weaker, not at all what he needs.

He had vomitting again tonight. WHY? That is the
million dollar question. WHY?...Some questions can
never be answered. I hope it just goes away.....

Wednesday is the day!!! I have been pushing to take
Hollister home tomorrow. I can monitor his feeds and
give the antibiotics at home.

Harrison and Hillaree got there flu shots today...
Harrison now has bilateral ear infections...and is
now on Augmentin...He is concerned about the size
of the pills. He said they were ginormuos!

Heres to a good night...and a happy tomorrow...

Monday, November 5, 2007 4:37 PM CST

THE PERICARDIAL DRAIN IS OUT!!!!!!

Sunday, November 4, 2007 12:49 AM CST

Another nice fall day, this might be the last one
for a while. Cold weather is in the works.
Guess Hollister and I will need some pants, we came
in with only shorts..this will be no good.

Hollister had lots of blood work and cultures sent
on Thursday evening. No news is good news. It takes
a couple days to know for sure. But, I haven't heard
anything on the prelimenary growth..

He had a grand mal seizure on Thursday night...His
dilantin level was 2.6..This is certainly low, and
probably the culprit of the seizure...
He has thrown up so much of his meds...I had been
worried this could happen.

Friday night, he was up all night again vomitting.
His feeding schedule keeps changing as the vomitting
continues. So far today...so good.

Yesterday, he slept a lot. His sleep is very
restful and I believe healing. His cheeks are
nice and pink...no longer bright red.

He looks much better and is less agitated...
Antibiotics are a good thing. He is on the
continues drip of Penicillin G Potassium (Pen G K)
and every 6 hours he gets Primaxin and Gentamycin...
Big Guns for a 2 big bugs....
They seem to be working. Rumor is that he will go
home with these three....I hope it changes...Hollister
and I will be stuck at home while he is on that
continuous drip....But...We will do what we have to,
to go home!!!!!

The pericardial drain has finally slowed down in
the drainage...An Echo of the heart will be done
on Monday...and possibly that tube will finally come
out...41 days after it was place...He had the heart
surgery on September 26.....I am ready not to see
it or think about.
I am anxious for the echo to be improved since last
week. I keep bargaining with God...No more heart
surgery!!!!!!Time will tell, nothing can be done
until he is off the anitbiotics...

At this time will be keeping the port, that can
change in the next days and weeks ahead...If he loses
the port...that would be a PICC placement, and 2
surgeries....Again, I am Faithful, that GOD IS GOOD!!!!

His feet continue to be very swollen, so he has spent
much time in bed. This is no good as Hollister is very
weak. No therapy....just resting.

Hollister is in the room of HOPE. We moved here a couple
days of go. Has to be a good sign, that things will continue
to get better for Hollister.

Thursday, November 1, 2007 11:48 AM CDT

It certainly must be December and not November..
Early yesterday...On Halloween...
The Christmas commercials started...in full force.
Unbelievable! and extremely disappointing.

I remember how hard it is to wait for Christmas...
and now kids have to be patient from the minute
they take of thier Halloween Costumes....too long.

I love Christmas...probably more than most...
I love Thanksgiving also....and there is only
21 days to wait when it is publically OK to give
thanks for all we have...Oh yeah...and all that great
food!!! AMEN!

Hollister is working hard, now he is working hard at
healing!
The antibiotics are probably helping! yeah!

He is still not tolerating his feeds. His stomach has
been hit with the "bugs"...The vomitting continues
and continues.

The swelling in his legs is still bad...I was told
yesterday that he now has the feet to drive the
Flinstone car! I am trying hard to keep them elevated.

His pericardial tube is still draining but it was less
yesterday. YEAH!!! and finally!
Not sure what will be done with his heart.
Dr. Mooradian and Dr.Hockmuth are still thinking!
I am in the begging praying mode...that the impeding
heart surgery is not needed!
Are you listening God, it's me Jan......

Waiting to hear from Dr. Gervich about the status
of his Port...Will it stay or does it need to go...
Lots to worry about...

I am confident...That God is listening and hears
all our prayers...I am sure he is constantly amazed
by all who pray for Hollister.... He is certainly loved!

On this first day of November I am thankful that
I have been given the opportunity to be Hollister's
Mom. He truly is someone special!

Wednesday, October 31, 2007 5:30 AM CDT

Happy Halloween...

No Tricks or Treats for us.
No "fun" size candy bars, no popcorn balls,
no carmel apples...no candy corn or chewing gum...
No FUN!!!!

Charlie Brown says: "I got a rock."

Hollister is at the end of his first week here at
the Mercy Resort...
He is no where near the corner he needs to turn to
feel better.

He has had a couple of rough days.. The vomitting,
we hoped had passed. His feeds were slowly restarted
yesterday. Through the night, the ugly emesis reappeared.

Monday night, he had a seizure..exactly what I had been
worrying about! Meds were given and he only had one.
Thank you GOD!

Yesterday, he was very sleepy. He rested fairly well
most of the morning and early afternoon. He didn't
look too bad last night...

His feet continue to swell and swell. He doesn't want
to bear weight at all. There are huge. I guess it has
something to do with being septic.

The bugs are still bugging him. Antibiotic changed
again last night. Dr. Gervich, infection control
Doctor, is awesome. Unfortunately for Hollister he
has had to be put on isolation precautions...gowns,
gloves, and lots of hand washing. Good for him and
us.
He said the Klebsiella has grown "teeth" and have
become very stubborn and resistant to treatments
of choice...Probably, because he had it earlier this
summer...and he probably had some "Kling Ons" who
were able to ride it out with the antibiotics.

He is very weak and is working very hard. His
heart is still beating very fast and he is breathing
very fast. Makes me sad, to see his little fragile
body under that much stress.

The pericardial tube is still draining too much.
Dr. Mooradian said, "at least he is very consistent."
The antibiotics should be attacking the bug in the
chest.

It is time for him to feel better and these darn
bugs have been trouble for too long.

Hollister is up,he had his hair washed, shaved and
ready for the day. We have moved to a bigger room.
We have had a big day already.....

From the Great Pumpkin Charlie Brown.....

Linus believes in a strange hybrid of a jack-o-lantern,
scarecrow, and Santa Claus character named:
The Great Pumpkin.

Linus thinks that the Great Pumpkin will arise out of
the most sincere Pumpkin Patch on Halloween night
and deliver toys to all the true believing children.
Of course,
Linus becomes somewhat obsessed with his self-appointed
mission to not only receive toys from The Great Pumpkin
for his undying belief, but he actually wants to be
in the garden when the benevolent giver of Halloween
toys rises from among the pumpkins.

Oh, how I hope Linus is right this year...

Saturday, October 27, 2007 1:52 PM CDT

A beautiful fall day...
Everything looks a little brighter with the sun shining!

Harrison is doing better, Steroids and antibiotics
are a good thing. He is at Mock trial practice today...
He cannot participate in sports all weekend...
Ahhh..for him a fate worse than death...haha

Hollister looks physically better today. His heart
rate is down to around 130..his oxygen
saturation is in the 90's,and his fever is gone
(with the help of Motrin)...and he got his hair
washed...to all that have seen him with sick bed hair,
know how important a hair wash can be...

His cultures are still pending. We do know, they are
gram negative rods, not sure what bug...yet..
His CXR this morning shows pneumonia in his upper
lobe of his right lung. This is from the bacteria
and not an aspiration. (I asked....because, I am
Hollister's offical lung/airway protector...
right Shawn)

The Infectious Disease Doctor has been asked to
"figure" out what is going on with Hollister.
He is very thorough and is looking through some
of Hollister's old records. He made some changes
to the antibiotics..fine tuning!

He continues with the vomitting and diarrhea..
This is making it very challenging getting his
seizure medications in..he is on 5 different seizure
medications and 4 of the five work on therapuetic
levels. One more worry to rattle in my head...

He got motrin yesterday around 5pm...made a huge
improvement in his appearance..He was able to sit in
a chair last night,it is amazing to me
how much better he looked..He even chewed some ice
and smiled... We listened to a very disappointing Dowling Catholic
High School football game...

He is resting well now. Antibiotics going...chasing
that nasty little bug!

His pericardial tube is still draining...Waiting
to see what needs to be done next..I am ever vigilent
in reminding God that Hollister doesn't need any
more heart surgery!!!!

Hollister continues to take the most difficult
route in his recovery. That is the Hollister way.
I remind the Doctors and Nurses daily the Hollister
wants to push everyone to be the best they can be.
He expects no less. We like smart people!!!!!

Hollister is stronger today than yesterday...
Tomorrow will be better.

It is, what it is.

Friday, October 26, 2007 4:02 PM CDT

Not the note I wanted to write today...

I wanted to write of what a great week we had,
the kids and I enjoyed a two days off of school...
and we are headed to the football game...
Dowling Catholic versus Johnston...
Play off hopes....

Instead...

My note SUCKS!!!

Harrison is sick with an ear infection, sinus
infection, asthma Flare up, just geneally feeling
very CRAPPY!!!!

Hollister is very sick...He is septic.
He came into the hospital last night around 6pm...
He has been struggling all week. He is running high
temps, he is vomitting, diarrhea, heart is beating
out of chest, he is working very hard to breath,
and just plain feeling CRAPPY...

Lots of test...no definetive answers...
Blood cultures positive for gram- rods...
Antibiotics started late last night...Hopefully,
he will feel some relief soon. Pretty rough weekend
ahead.

Lots of potential sources of infection....
Port, pericardial tube, wound sites, poop, pee,
sputum..just about anything..
Concern for his heart...not sure what lies ahead..
Pray for no more needed surgery!!!
His body is not strong!

Team Tough is hurting..Please think of and pray
Hollister!!!!!

Tuesday, October 23, 2007 7:16 PM CDT

Nice to have a couple days without rain.
Including a weekend. Hollister enjoyed sitting
out on the front porch. Good to see so many of our
great neighbors and the little kids. Always makes us
smile.

He was a walking machine over the weekend. Made it out
twice each day. He is so determined.
The drainage over the weekend dropped off considerably.
We were all rejoycing....
When it was time for bed, Hollister looked rough.
Pale and very weak...he had this horrible cough
(pretty sure it is allergies and sinus drainage..YUK)...
Vomitting...his little heart was beating out of his
chest...and he was struggling to breath...
It is scary how fast Hollister can change his health
status.
There is no comfort zone!
It was a very long night...he was restless, short of
breath..and working very hard to keep it all going.

Monday morning...He still looked rough...WEAK!
Then I noticed all of the drainage in the tube...
There must have been plug all weekend...that drain was
full...It drained 611mls yesterday...YIKES

He looked pretty pale and tough most of the day.
Finally right before bed, he threw up a very large
UGLY mucous plug...but he perked up a little after that.

The day started off even worse today. He woke up this
morning with it coming from both ends...Laundry has
been non stop all day!

Hollister saw Dr. Mooradian for a check this morning.
That was quite the task to get him there. I was so
happy that Dick was here to help me.
Dr. Mooradian is at a loss. He is very disappointed that
the drain is still so active. It has lots of us ugly
tissue coming through. Probably what plugged it over
the weekend. He made me promise that if he gets short of
breath again, that I will call him. He said he would
have definetly admitted him. (I know I know)...
He did a CXR, EKG and an Echo, all looked good. There
was a little fluid by the heart...but lots of that
inflammation tissue.
He is hopeful that the drain can come out next week,
or it will be plugged...either way it may come out!
It would be helpful for him, if Hollister had a
doctor who was following him for his MELAS....
He would have someone to consult..but....
we have been flying solo for almost a year now.
The Mayo Clinic has no Metabolic geneticisit to see
Mitochondrial patients...
Hard to imagine....a disease this complicated and no one
to help us. Try to imagine having cancer and having
no oncologist to help you...That is unheard of....

We continue this journey...by the seat of our pants...

Hollister did not make it to therapy today. He was very
tired from the appointment. He rested on the couch most
of the day. He is very weak and crabby...Wondering if
he has increased pain.

Hopefully tonight will be a better night for those of
us living in the basement!

Conferences this week. Harrison's were tonight.
Guess he is kind of a "Chatty Kathy"....This was a
total surprise..haha...
Hillaree's are later in the week.
They both have worked very hard to catch up for the
missed assignments during Hollister's surgery.
No school on Thursday or Friday...

It is what it is!

Thursday, October 18, 2007 5:13 PM CDT

We all seem to be adjusting to everyone living under
the same roof again. Even Hooch was happy to see us!
It always takes some adjustment after a hospital stay.
I know it sure felt good to sleep in a real bed!!!!

It has been rainy and dreary outside, makes it easy to
rest on the couch with Hollis.

He did make it to therapy at Blank today. I think he
was happy to see Karen. He worked very hard. She was
happy to see how well he did, knowing he is still
recovering from heart surgery.

The drain still has a lot of output. Makes me a little
nervous to be so responsible. We will do what we have
to do....The wound is looking a little better, but has
a way to go before it will be healed.

Swimming is winding down for Hillaree, the conference
meet is tonight. She called after the diving portion
and she did well enough to make it to the district
meet. Not too bad for a rookie. We are very proud of
her efforts.
Football finished for Harrison, they finished in 2nd
place. Harrison had a stellor season. He is still busy
with soccer and Hockey started this week. He is going
to play 7th grade basketball at St. Theresa, starts
next week...and he is busy with Mock Trial...
Competition is very soon.
I am proud how well both Hillaree and Harrison are
able to keep going. I know this heart surgery was very
hard on both of them. They are amazing young people
that handle so much more that we can know.

Team tough continues to gather strength from all who
think of and pray for us.

Life...it is what it is.......

Wednesday, October 17, 2007 1:15 PM CDT

Hollister is home.
He came home yesterday late afternoon.

He still has the pericardial drain....
and two wounds to dress.

He is home.

Tuesday, October 16, 2007 3:55 AM CDT

We have been up for an hour or so. I guess we are
having an early start to the day..haha..

I had no idea how much time has passed since the
day of the surgery. Dick reminded me that it was
4 weeks ago today Hollister was admitted
to Mercy. Surgery on Wednesday morning. CRAZY...

I am glad to have that in the past. Hollister has
done amazing well recovering from the surgery.
I remind myself daily, that if he had to have an
open thoracotomy, his recovery would be much
different...
I am ever thankful for Dr. Mooradian and Dr. Hockmuth
for having the knowledge and courage to use the
new ROBOT on Hollister. It has made a huge differnce
for him.

The drain is still the root all of that is not
right in room 349...Instead of decreasing in amount,
it is actually draining more each day than the day
before. He is moving in the wrong direction.

Two of his three incisions broke open of Friday.
That is also a bonus....of the Hollister kind!
The wounds are being dressed with wet to dry
dressings. Now he has to kick up his ability to
heal!

A plan is in the works...
The drain may need to stay in a we go home with it
or the drain may be pulled and we watch the chest
carefully with CXR and heart echos...
The idea is that the window will work..
The question is will the pleural space be able to
absorb this amount of fluid each day.
If not, a tube will have to be placed in the space.

This is truly a rock and a hard place. A place that
Hollister knows well.

Friday, October 12, 2007 6:17 PM CDT

The plan is on hold over the weekend..

I missed Dr. Mooradian as I was in the shower...
Plan was to do a CXR and look at the chest and
the drain....

Today didn't go as planned.

Hollister continues to keep us all guessing.

He was up a lot in the night and makes for a very
tired boy this morning...

Speaking of morning, ours took an ugly turn once
I got him up.

I had no trouble getting him up to a chair...
same as I do every morning...He was burping a lot.
Not unusual. He gets his first feeding at 5am and
finishes about 7am...

BUT...today was going to be different..

He started vomitting and it was projectile..it came with
force...good news most of it was on the floor.

I cleaned him up and got him dressed. He appeared to
be in a very happy mood. His favorite nurse Jana
came in...She was giving him grief and he was liking
it!
I asked her to change the dressing on "THE DRAIN",
It was kind of stinky...and he tolerated it well.

He was sitting in the chair...
and the next thing...a seizure...

Port had to be accessed to get fluid started...
Meds given and back to bed...

Finally rest!

Therapy did come and strecth him...He had a lot of
tone today...which is to be expected after a seizure.

The wound nurse came to look at the drain and
site around it. She thought it still looks good.
She also gave the nurses on the floor and myself
how to properly care for it.

Dr. Mooradian stopped by this afternoon again.
How nice was that. He cancelled the CXR and put
the plan on hold until after the weekend.

It has been a long day here in room 349...
The room of HOPE!

I am optimistic that the fluid will dry up enough
to have the drain removed before we come home.

On a very happy note...
DCHS beat the SE Polk Rams in football last night...
31-13...

Way to go big D....

Hollister is always so proud!!!

Here's to a great weekend!

"Teams do not seek consensus;
they seek the best answer."
Jon R. Katzenbach & Douglas K. Smith

Thursday, October 11, 2007 5:09 PM CDT

Hollister and I sitting here in the room of HOPE
enjoying the view..haha
The sun is shining and the sky is blue...
I guess it is very chilly out.

Grandma made it to DCHS for the Grandparents day
Mass. She said it was very nice. She said there
was around 500 grandparents there. Awesome...
Hillaree was a Eucharistic Minister, nice for
Grandma to see her participating!!!
Grandpa sat with Hollister and I this morning.
Hollister was in a good place while he was here.
Nice of them to drive down for a short visit.

Hollister continues to have some sleeping
issues at night. He falls asleep and can't stay
asleep...makes for a very drousy boy during the
day.

He did OK for therapy. Not much for OT, she tried
to get rightie to do some work today...but he
wouldn't engage with her.
He did better for PT, walked fairly well. Not as good
as he could but OK. He still does not like his
hamstrings strectched...He looked like he was
pouting when she stretched them..That would be a
normal reaction for him...good to see!

THE DRAIN---------
Has taken on a life of it's own..ha
Dr. Mooradian was back today. He said it looks like
it drained about 30mls less than the day before.
GOOD!!!
Still way too much!!!
He was going to talk with Dr. Hockmuth and they would
put together a plan....
What that will be he wasn't sure..
Not sure why the drain is so wet...
The drain has been through the window(hole in the
pericardium)long enough that the window will be
patent....
but,
can Hollister re-absorb this much fluid when it is
in the pleural space??? UNKNOWN...

We will know more tomorrow!!!

More PATIENCE.....

but, we will do what we have to do...

Wednesday, October 10, 2007 3:58 PM CDT

Wednesday already...

I guess the weather is very fall like...
Cold and leafy I guess!
It has been a constant 70 degrees in here..ha

The best part of today is that Hollister is
HAPPY..almost ornery.

Monday and Tuesday he was grumpy, it was
as if he didn't feel well. He didn't want to do
much. Walking was limited and therapy was a bust!!!

Hollister just finished with his therapy.
He had OT and PT seperately. He was smiling
and laughing as we walked down the hall. It was
good to see and hear. He worked hard for OT today,
she did lots of things with him.

The heart tube is still draining..AHHHH
It has slowed a bit..but still way too much!!!
The endomethicin has been increased today.
Hoping to help with the inflammation and fluid.
Keeping my fingers crossed.

The plan is maybe to come home on Friday...
probably with the drain...

Good news!
My Mom had her six month post chemo/radiation
check and she is sill in remission...
Remission..What a beautiful word...

May we all live our lives with the simplicity
of a child!

Author and lecturer Leo Buscaglia once talked
about a contest he was asked to judge.
The purpose of the contest was to find the most
caring child.

The winner was a four year old child whose next door neighbor
was an elderly gentleman who had recently lost his wife.
Upon seeing the man cry, the little boy went into
the old gentleman's yard, climbed onto his lap,
and just sat there.
When his Mother asked what he had said to the neighbor,
the little boy said,

"Nothing, I just helped him cry"

Monday, October 8, 2007 11:15 AM CDT

I can't believe I didn't get a new note written
over the weekend...
I had good intentions..
I know, I know... I've, been told....
The road to H..L is paved with good intentions

Hollister is still at Mercy..in the room of HOPE!
and hopeful we are.

He has been doing OK. He is gettting stronger and
his stamina is increasing. He is able to sit up
much longer that a few days ago.

We walked him a lot over the weekend. He still needs
take a few breaks..but he did make it all the way
down the long hall and back to his room.
Lots of cheering from us and the nurses. I appreciate
the enthusiasm from all.

On friday, Dr. Mooradian had some blood work sent.
He is out of town part of this week..and wanted a
plan for Hollister.
Unfortunately, a level that checks inflammation
was elevated...so that could why there is copious
amounts of drainage.
What he needs is a good round of steroids...
Again, unfortunately for Hollister he can't
metabolize steroids...so no steroids for Hollister.
He was started on the endomethicin on Friday afternoon
hoping it will help the inflammation and drainage..

His fluid has decreased...but still way too much!

If the fluid continues, Hollister may be sent home
with the drain around his heart...Normally, they don't
send kids home with a drain like that but Dr. Mooradian
and Dr. Hockmuth thought I could handle it....
AHHHH...I told him...No pressure there...
But,
I would be happy to take him home.

Time will tell...

He has been very restless at night. He sleeps only
a few hours and is ready to be up a 7am..I am shocked...
He is finally napping now. He needs rest, this therapy
girls will be here this afternoon. He needs the work.

Team tough is ready to move forward and get that
drain out...Hollister needs that drain to dry out!!!

Think postive thoughts for Hollister!!!!

If people say they have faith, but do nothing,
their faith is worth nothing. Can faith like that
save them? James 2:14

James' message is bare-knuckled; his style is bare-boned.
Talk is cheap, he argues. Service is invaluable.

It's not that works save the Christian, but that works
mark the Christian. In James' book of logic, it only
makes sense that we who have been given much should
give much.
Not just with words. But with our lives.
Max Lucado

Thursday, October 4, 2007 3:38 PM CDT

Another day in the room of Hope!

Patience is no longer the word of the day,
it is the word of the week!

Hollister is very tired and sluggish today.
He went to the therapy gym this afternoon...
He was stretched and stretched...He tolerated
it pretty well, his hamstrings are tight..as always.
His neck got a good workout(massage) and he slept
right through it!
No walking yet, we will work on that tonight...
If I can keep him awake.

He hasn't been talking much at all today.
I am hoping that it is because he is so tired.
He is sleeping now, hopefully he will wake up
and be alert tonight when Hillaree and
Harrison are here.
It is good for us all to have him interact with
us.

He has copious amounts of drainage coming out of
the chest tube. The doctors are starting be annoyed
by it....and so am I...(imagine that..HA)
It is so typical Hollister, he expects everyone to
work as hard as he does...he makes nothing easy for
anyone...We must all be thinking all of the time.
That is the Hollister way...

As always Team Tough needs your thoughts and prayers.
To quote Hollister...."Mercy, Mercy, Mercy!"

The brain gives the heart its sight.
The heart gives the brain its vision.
Kall

Hillaree got her drivers license today.
Driver Beware!

Wednesday, October 3, 2007 11:43 AM CDT

Thank you to all who helped make Hillaree's
Sweet 16 so very special. I only got to see her
briefly last night. She was busy with a swimmeet.
We did get to have cake together and sing Happy
Birthday. I felt bad I didn't have a card or gift...
but she was very understanding. She is good!
She will get her Driver's License probably Saturday.
I guess a parent has to be with her. She handled
that disappoinment with great maturity...
Happy Happy to Hillaree...

Hollister had a big day on her birthday also..
He walked along way with the therapists.
Impressive. He was tired. He looked better than
Monday.

He did have a seizure about 8:45 last night...
DARN...I had just figured he was a little short
for his fluid intake..and his nurse and I had a
plan for 10pm medications and juice to make up for
the deficit...
I guess he couldn't wait...
It was only one and it last about 45seconds or so...
and we moved quickly to get done what I wanted done.
Not like at home...where I have meds and IV fluids at
my finger tips..haha..
Rules and orders to follow!
It was one and done..Thank God!!!!

He was restless again through the night...and then
slept well this morning.

He is up now and sitting in the chair..He is positioned
so he can see out the window..Looking at the Wells
Fargo Arena..Home of Iowa Stars Hockey!!

Hollister was moved to a bigger room yesterday.
Very comfortable and a bigger sleeping sofa for me!
I knew this must be Hollister's room....on the ceiling
right in front of the door is the word HOPE!
The roon is very nice...but makes me worried our stay
might be longer than I wished..ha

Dr. Mooradian was in this morning. The fluid from the
chest tube is the problem...

The word of the day is PATIENCE!!!!!

Everyone who knows me, knows I have no patience...
I told Dr. Mooradian, I have been praying for
patience for more that 20 years...
Patience equals time...
Hollister has always done things in his own time.
He was born 2 weeks late and had to be convinced
it was time...
So, TIME and PATIENCE have never been easy for me!

If it were not for hopes, the heart would break. Thomas Fuller

Tuesday, October 2, 2007 9:08 AM CDT

Happy Birhtday Hillaree..
You are sweet 16 today..

Sixteen years ago, we were in Mercy Hospital waiting
for Miss Hillaree to arrive. Hollister was with us.
Hollister was 4 1/2 years old and it was a very
happy day. She arrived at 7pm...and Hollister
was excited...He had been patient ALL day.
After Hillaree was born and he touched her first...
He ran to the waiting room where Donna and Kirk...
his very bestest friend..(4 1/2 year old boys need
best friends) were waiting...He was so excited..
he threw his arms in the air...and screamed...
"I have a sister!" There was much dancing and
happiness in that small waiting room.
That was a fantastic day...for all!

I wish I could go back to that day today....

So much has happened in those 16 years.....

Hollister is weak and tired. I guess that is to
expected. Yesterday was not a stellar day for him.
He looks rough. The chest drain continues to drain
a lot of fluid from the chest.

He isn't sleeping very well at night. Restless..
I am sure he has more pain that I know. It is
difficult without words.......

Dr. Mooradian was in early this morning.
It is a wait until that drain is dry. He put things
in perspective for me. It is important for the
chest drain to stay in until the fluid is gone...
He reminded me, how much fluid was around his heart..
and how quickly he is replacing it...

And he should be tired..He had heart surgery...
The robot enabled him not to have a huge
thoracotomy...but the pain and healing time is
real...and we have to be so very careful with that
drain...it is in the chest...Hollister needs no
infections or for it to be pulled out prematurely!
Good for me to be reminded.

Therapy today continues at the bedside. He is
standing and walking baby steps...He is very
weak, but he is trying and working hard.

Keep Hollister in your thoughts and prayers...
He needs a boost to keep recovering....

Happy Birthday to Hillaree Mae Farrell
the sweetest girl I know...
May all of your birthday dreams come true!

Good luck swimming tonight!

Locked in my memories of 16 years are Hollister
and his new baby sister Hillaree!

Monday, October 1, 2007 11:37 AM CDT

Hard to imagine it is October.....
Tomorrow is sweet Hillaree's 16th birthday..
I can't believe my baby girl is going to be 16...

Hollister moved to the pediatric floor Sunday
afternoon. The move was very smooth...I know,
you are wondering why is he on the pediatric floor...
He is still in pediatrics, at 20 because his illness
is a pediatric illness and his doctor is a pediatric
cardiologist...He has taken care of Hollister for
over 5 years. He wanted nurses who know his routine
to take care of him...how great is that. Nice to have
a doctor who is looking out for Hollister's best
interest..unlike what happened in Rochester last
summer...(Hollister's team at Blank...also looks
out for his best interest...)
It would be silly to transition Hollister at this
time to adult doctors....because he has surpassed
his life expectancy......
We appreciate all who advocate for Hollister.
Because Mitochondrial disease is kind of an
"Orphan disease", no one really knows what to do.
I know..Blah Blah Blah....
Sounds like a soap box....

Hollister was delightful yesterday afternoon.
When we got to his new room, he was flirting with
his nurse. He was using words and responding to her.
It was amazing.

When our neighbors and my Uncle John walked in the
room he was still very antimated...but...
What they noticed was his color. No gray, no ashen,
no palor...They commented to us that he looked so
good. His cheeks were rosy and his skin was pink.
I hadn't really noticed. It was great to hear it.
I guess maybe the stress on his heart was greater
than we knew.

He continues with the chest drain. The fluid has
slowed down...Dr. Hockmuth wants to leave it in
until it is dry. This will help the pericardium
around the heart to heal...

He is sleeping now. He was pretty social most of
the night. Hopefully, he will have enough of a
catnap before therapy gets her. He is very weak,
therapy is just what he needs.

His progress is slow and steady...but it is progress.

On this October day, I have so much to be thankful
for. My Faith has certainly been re-affirmed.
Good is good and certainly able.

In prayer it is better to have a heart without words than words with out a heart.
John Bunyan (1628-1688)

Sunday, September 30, 2007 8:20 AM CDT

The end of September...
Fall is certainly here.

Hollister is doing better than I ever expected.
I am trying not to be over confident.....
but...
things are moving in the right direction.

His lungs are showing some improvement on the
chest x-ray. The ultrasound Friday afternoon
did show a small amount of fluid in the right lung.
Not enough to put a chest tube in..
He is still on the bi-pap at night and getting
the chest percussion during the day...all in hopes
that the lungs will open up and the "crap" in there
will move on.

The fluid draining from the incision has started to
slow down...and all of the tests on it came back
negative...No triglycerides in it...Thank GOD...

He has actually been a little fluid overloaded..
another surprise...Hollister usually runs a little
dry...A couple of doses of lasix(a diuretic)..
and he looks good...Hopefully, all of his labs will
continue to stay in line as the IV fluid has been
stopped...

Yesterday, his foley came..and they tired to take out
his Central line(Cordis)...True to Hollister's Mantra..
he has to be difficult...so Dr. Hockmuth will review the
chest x-ray this morning and remove...Hollister
frustrated the nurses in the PICU...along with one
who came form The Cardiac Surgery intensive care...
It is stuck...

He has been up to the chair twice each day...He is
very weak. Sitting in the chair really wears him out.

He is making slow steady progress... I couldn't ask
for more.

There is hope that we could actually go to the
floor today...

For all the prayers and thoughts...Thank you.
We gather strenght from all our friends near and
far. We are continually humbled.

In a full heart there is room for everything, and in
an empty heart there is room for nothing.
Antonio Porchia

Friday, September 28, 2007 1:14 PM CDT

Friday...Where did this week go.

Hollister is resting in the chair. He did indeed
make it to the chair yesterday...and now today.
OT and PT helped him both days. He did a good job
of standing, but today his balance was better and
he even attempted to take a couple steps!!!!

The Art line came out yesterday out...one down.

He is still having a crazy amount of fluid coming
from the drain. They sent some more this morning
for another lab test...Waiting to find out...
with Hollister it could be something...OR
could just be Hollister.....

His chest x-ray is worse today. The PICU intevsivist
is ordering an ultrasound of his lungs. She wants
to find out exactly what is going on...The right
lung looks worse and may need a chest tube...
It is Friday afternoon, so we need to have answers
before the weekend...I like that idea.

He is till using the bi-pap and seems to be
tolerating it when they have it on...a few hours
on and a few hours off....

Hollister doesn't do well when he gets behind any
thing. So, staying once step ahead is good, very
good.

He looks good and I am remaining optimistic!!!

Everyone here is doing a great job of keeping us
informed of all that is going on.

Tonight is the homecoming game for DCHS. Hillaree
and Harrison will be in the stands cheering and
Hollister will be cheering quietly in the PICU.

Go Dowling...

The continued thoughts and prayers are much
appreciated as Hollister continues to cross
each hurdle...

Gratitude is the heart's memory.
French Proverb

Thursday, September 27, 2007 12:29 AM CDT

Another beautiful fall day.
Not much of a view from Hollister's window,
but I can see the sun shining.

Hollister had a pretty uneventful night.
He rested comfortably, thanks to a morphine PCA...
We are working hard to stay a head of the pain.
and pain there is.....

He still has all the monitors in place from
yesterday. The Art line, central line, accessed
port, the blake drain from the incision and th e
foley. He is definetly wired for sound.

This morning the chest x-ray show atelectesis in
both lungs. Not a huge surprise, but not a needed
one. Immediately, he was started on bi-pap to
force air to the lower lobes of his lungs. He fought
it pretty hard...but is resting with it in place.

His gut is ready for his feedings to be re-started.
Not quite up to full feed, but will start slow.
All of medications were re-started this morning.
It is always interesting to see what the nurses
have to say when they see all of the meds that
need to be crushed.

Hollister's lofty goal of the day will be to sit in
a chair...Pretty lofty, but one I think is attainable.
This will be good for all his parts. PT and OT will
be here this afternoon to help...awesome.

I am as optimistic and hopeful that Hollister will
soon be on his was to recovery. He is working hard
and doing all he can.

Team Tough is speechless at all the
outpouring of kind words and thoughts.

One of the hardest things in life is having words in your
heart that you can't utter....Jame Earl Jones.

Wednesday, September 26, 2007 6:27 PM CDT

Hollister is doing GREAT!!!!

Dr. Hockmuth, Dr. Mooradian, Dr. Recker, the nurses
PA's and the entire heart team came in meaning
business this morning...

Hollister's procedure couldn't have gone better...
I am so overwhelmed with gratitude for everyone who
made this so awesome...
It took a lot of behind the scene work by so many...

Hollister went into the OR exactly at 7am....
Lots of things needed to be done...Anesthesia
had so much to do...He got a cental line, an
art line... all the monitors were in place,and
carefully, he went to sleep and was intubated...
The nurse then had to help position him... and
prep him and put in a foley...and constantly keep
him safe....
An Echo had to be done, the robot had to be put in
place...and Dr. Hockmuth was on.....

The robot was in position about 8:15....

When Dr. Hockmuth drained the fluid from the heart..
It was 500 ml...which is a lot. Dr. Mooradian said
it was a good thing, we were taking care of it now...
That much fluid could damage the heart.

The good news is that his heart looks great. No
evidence of cardiomyopathy, no ragged fibers
around the heart, the fluid looked clear...no sign of
infection. I am thrilled.

I love Mr. Robot.....

He was out of surgery and on his way to PICU around
10 am....only 3 hours.....

He was awake and extubated shortly after he got to
the PICU...The way he woke up seemed so normal...
He was fighting and aggitated...It was awesome!!!!

He is doing great. He has a drain from his heart,
draining lots of fluid from the surgery. He has
all the lines yet and an IV in his port. His
vital signs are stable...a little low grade temp...
and his gut is bloated (an Illeus)....
He has pain...lots of pain..He rests for a while,
and then he is reminded his chest is very SORE...
He has a morphine PCA...(nothing for MOM)

Metabolically, he is STABLE...Every hour that passes
I feel a little more confident...

He is an amazing miracle....God is incredibly good!

The nurses in the PICU are interested in Hollister
and have asked a lot of amazing questions...
Dr. Napa the PICU intesivist has been incredible...

Tonight in PICU #3...I believe!!!!!!
Hollister has been given a gift.
Truly, the faithful have been rewarded.

Thank you to all of you! God hears and answers...

I feel like my heart grew three sizes today...

I would thank you from the bottom of my heart,
but for you my heart has no bottom. ~Author Unknown

Wednesday, September 26, 2007 3:08 AM CDT

Minus 4 hours and counting.....

Hollister is headed into the Operating room at 7am.....

My mind is filled with so much and so little at the
same time.

We had a great time over the weekend. No thoughts of
surgery....just too much fun at the Beaverdale Fall
Fest...He was full of smiles and laughter. We did indeed
take him Friday night to the fireworks and Saturday to the
parade and Saturday night to the party.

It was great fun to see so many people that we haven't
seen in a long time. No talk of surgery..
Fun Fun Fun....for everyone!

A fun diversion was just what we all needed.

Sunday night......it all started to come to life...

Monday was a long day. So much time alone to think...
I had hoped to get lots done, but my mind was all over.
I accomplished nothing..but think of Hollister.

Dr. Recker from anesthesia called me..how awesome is
that. My friend Julie had been busy getting Hollister's
Ducks in a row. Anesthesia is very complicated for him.
There are so many drugs and gases that Hollis can't have.
He was doing his homework...again...He reassurred me
that he was prepared. He said he would need to start
a central line and an arterial line....
So much to think about.

Tuesday was one of those days that just happened.
Seemed so surreal that it was happening to Hollister
and I was with him. It was 12:30 and I was about to
take him to therapy...Dick came in and said....
"He needs to be at Mercy at 1"...No way...Immediate
melt down...I wasn't ready...I was taking him to
therapy, he needed a shower, I hadn't packed a thing...
I WASN'T READY!!!!!!!!!!!
We made it to Mercy at 2..not bad...left a mess..dishes
in the sink..laundry to fold...clothes to put away...
and a pile of paperwork on the table.....
We gathered what we might need and left......
I thought I might have more time.

After checking in, which we have never done before.
Hollister usually arrives via ambulance to the ER...
This was weird..and takes a while.

We made it to room 343. Dr. Mooradian stopped by.
He had lots of orders blood work, chest x-ray and
blood work...he was even typed and crossed..in case
he needs blood during surgery...Blood...AHHH.
Never even considered..Blood....
Hollister was busy!
We talked about the surgery and he said he was going
to be in the OR, He will be doing a very specialized
Echo right before the surgery starts. This way they
know exactly where to do the window....and he wants to
see how this robotic device works. I take great comfort
in this.

Dr. Hockmuth's PA stopped by to mark Hollister...
The incisions will be on the left chest. She went
through the last minute "stuff"..She was headed back
to the OR for a final "dry" run..on Hollister's case.

A Doctor from the PICU stopped by to meet Hollister and
get his history and talke about MELAS..impressive. He
said he will be waiting in the PICU for him. Hollister
will go straight there after surgey..not to recovery..

I guess this is heart surgery.

Dick and I walked Hollister up and down the halls last
night. I wanted everyone to see him up moving. He
was happy and talking...a lot.

Hillaree and Harrison and Dick and I spent time with
him. Father Hoffman came and gave Hollister the
Ointing of the Sick. He has had this many times...
It was good for Hillaree and Harrison to be here and
to take part. Very comforting.

Hollister got another shower...One with the anti-
bacterial soap..He laughed and laughed..I am sure
he was wondering...2 showers in one day...CRAZY..

He has been sleeping very peacefully all night. My own
heart aches not being able to explain to him all that
is happening..and knowing that he understands and can ask quesitons.

I still can't believe that he is having Heart
surgery...more than my own heart can take...

I sit here in the dark watching him sleep....
No answers come..no questions..only a numbness.

I pray tonight that God continues to bless Doctor's
Mooradian, Hockmuth, Recker...the heart team of nurses
and PA's...That they will continue to use thier gifts
wisely and have the skills and confindence to take
care of Hollister..and that he comes out of the OR
room with his heart fixed.

I know in a couple short hours..Hollister will be
inside the OR...and I will be on the outside.

TEAM TOUGH NEEDS YOUR THOUGHTS AND PRAYERS!!!

"A successful team beats with one heart"

Friday, September 21, 2007 4:36 PM CDT

Let the Festivities begin..

Today is the start of the Beaverdale Fall Fest.
If you all have never been, you don't know what you
are missing...Starts tonight...fire works and all... Tomorrow is the
BEST BEST BEST BEST BEST BEST BEST Parade...ever.

It is a good time for all..The kids look forward to
this weekend all year. A party in our own back yard.
Harrison is getting up bright and early to run the
5k...One year Hollister and I ran...(or in my case
walked...crawled..and rolled)..
and we both got medals......
hahahahahahha...still makes me laugh!

Hillaree will be busy with a swim meet...
No parade for her!

It is with a heavy heart(no pun intended) that I
write about Hollister's appointments.
First we saw Dr. Mooradian (cardiologist). I have
much faith in him and I trust him. He is a true
gift in Des Moines..I have often wondered why he is
still here....

The fluid is still there and possibly worse. In the
past week he had done his homework and consulted
with several cardiologists and geneticists from
other cities...
He even consulted the Surgeon in Des Moines
before we arrived for our appointment.. He is
very efficient.

He advised us that surgery would likey be the
best option. (Remember last year, Hollister was
too sick...wasn't an option)

On to the Heart Surgeon. We saw Dr. Hockmuth.
He also thought Hollister's heart and fluid were
ideal for the surgery. A pericardial window.
He also wants to do it with a Robotic device....
Hollister will be the first person to have his
pericardial window done with this device...

I have faith and confidence in Dr. Hockmuth.
He answered the few questions that Dick and
I had.

AHHHHHHH

I have worked in surgery for 20 years...
I know what it is like to use new equipment for the
first time.....AHHHHH

And it needs to be done at Mercy....not at Blank...
Yes Mercy is where I have worked for the last 15
years...I have lots of friends who will
be there....but Hollister has never been a patient there...

Anesthesia is HUGE risk for persons with MELAS!
Fortunately, I worked for that anesthesia group for
years...and they certainly know Hollister.

Lot's of things working in his favor.

Tenatively it is scheduled for Wednesay...I will know
more next week.

Here's to Hollister, the most faithful young man I know.
His trust in God and his will be done.... has brought
great comfort to me...his MOM.

We in this house will be celebrating at the Beaverdale
fall fest..Knowing how much Hollister always loved it.

Here's hoping our candy bucket is overflowing with
tootsie rolls in the morning.

Good news for Harrison...no cavities!!!!

Wednesday, September 19, 2007 6:47 PM CDT

Wednesday is our day off between therapy.

It is our day to just hang out. He does a lot of
resting on Wednesday.

He has been on the Heart medication for a week now.....
I am getting anxious for Friday.
He seems to be tolerating it well.

He does have some edema in his feet and ankles..
His left leg is quite swollen. This adds to my
anxiety. I have tried to keep his legs elevated.
This is much easier to say than do!

He tolerated walking during therapy yesterday.
He did a good job and worked hard. I wonder if
there is some pain in his feet. I wish he could
tell me...

He is strong and tough...fluid around his heart...
doesn't stand a chance... He is a fighter....and
we will do what we have too!

Team Tough continues to ask for Prayers and good
thoughts...

Don't get angry. Don't be upset; it only leads to trouble.

PSALM 37:8

Anger. It's easy to define: the noise of the soul. Anger. The unseen
irritant of the heart. Anger. The relentless invader of silence....

The louder it gets the more desperate we become....

Some of you are thinking . . . you don't have any idea how hard my life has been.
And you're right, I don't. But I have a very clear idea how miserable your future will
be unless you deal with your anger.

X-ray the world of the vengeful and behold the tumor of bitterness:
black, menacing, malignant.
Carcinoma of the spirit. Its fatal fibers creep around the edge of the heart and
ravage it. Yesterday you can't alter, but your reaction to yesterday you can.
The past you cannot change, but your response to your past you can.
Max Lucado

Monday, September 17, 2007 2:29 PM CDT

What a game on Saturday.
We sat on the porch with Hollister and
listened to every play. He was quiet and
sleepy, but we all know in his heart, he heard
every play...
We were happy...It was a great win for State.....

Dick and I were commenting on what Hollister would
say about the game...
We agreed that he would have been borderline
obnoxious...He believed in his teams 100%...
he never waivered in his love of Texas, ISU,
Dallas Cowboys, Dowling Catholic, The Colorado
Avelanche, the Spurs, and the Texas Rangers...

His love was sports...and he knew statistics better
than anyone...

We took him to the Dowling Catholic football game
Friday night.. I like to hope that he enjoyed being
at the game. He was pretty quiet...but smiled when
he got to see his favorite coaches...It was a good
night to take him not too cold. That is his Team!!!!

It was a red letter weekend...
The Hollister Trifecta.......
ISU, Dallas Cowboys, and Dowling Catholic WIN...

I am very anxious and nervous about his appointment
on Friday...Seems to be getting the best of me...
Lots of tears......

Every dose of the heart medication I give him...
I pray and ask God to let this be the dose to make
a difference and there will improvement on Friday...

I am sure by now, God is thinking I may be a little
insane..ha

I know...I need more time........
Hollister needs more time....He needs a chance to
recover....I haven't been able to communicate with
him in 17 months....
What I wouldn't give for more time.....

Please keep the good thoughts....

“Either we live our lives while we have them to live
or we sleep walk through our lives and wake up at the
end and realize we missed the whole show.
The real challenge is to work with what we have
to work with and start with where we are”
John Kabat- Zinn

Friday, September 14, 2007 8:29 AM CDT

Tomorrow is the big day...
Iowa State----Iowa game...
I know where Hollister's heart is....

LETS GO STATE!!!!!

Team Tough is hurting...
Hollister needs more prayers and thoughts than
usual.

Wednesday Hollister had his "routine" cardiology
appointment. He gets an Echo every few months to
keep track of the fluid behind his heart. It has
been there since August last year...It has always
been the same......

I assumed Wednesday would be no different. No worries...

Hollister tolerated his Echo well, he even said YES to
the girl who put the jelly on his chest when she told
him it was cold...I was thrilled, how well he did....

Dr. Mooradian came in....
He looked sad, and said the fluid had increased....
My heart broke...I was speechless...

It is all behind the heart, which makes it difficult
to reach with a catheter....

So, for ten days he will take the medication hoping
to decrease the fluid...
Hollister will see him again next Friday morning...

It is all so puzzleing as this is not the MELAS...

I have great Faith that the medication will work and
God will hear all our thoughts and prayers....
The fluid will go back where it is suppose to be and
Hollister can get back to his recovery...

Our God is an Awesome God!

Tuesday, September 11, 2007 7:12 PM CDT

September 11.....

What a day to remember.....
Even though we live in the middle of the country...
When those twin towers went down 6 years ago....
we all felt the pain.

6 years ago....
On Sunday September 9th....
A make up football game at the old Valley
Stadium...
It was raining so Hillaree (then a 9 year old)
and I decided not to go....We dropped Hollister off
at the field, he was a freshman, and the trainer for
the varsity team!
We went home and soon the sun was shining...

Hillaree and I decided to go the game....

It was still the first half when we got there.
We were settling into our seats...
When the "gouchy" man behind Hillaree and I said...
"why did they stop the game...that's not a player
down...."
I knew...I looked up and their were gatorade bottles
all over..and the coaches were kneeling by Hollister...
My heart stopped...
I did what all Mom's want to do...I went out on the
field...AHHHHHHHH
When I got to Hollister, I looked up and the
entire Team was kneeling on one knee around him...
It was too much...
It was then I realized I was in front of the entire
crowd not looking my best...AHHHHHH
After half time I took Hollister home.

He rested in Hillaree's room and listened to the
second half of the game....
It wasn't long and he was seizing again...
It was horrible and lasted a long time....
I wasn't sure what do to..Hillaree and I were home
alone with him.
My biggest priority was protecting his air way...
Vomitting is a sure thing with Hollister.
Dick was on his way home from Fishing in Minnesota
with his brothers...
Just as he was about to seize off the bed...
Dick walked in and caught him....

I made to the football game before he seized,
Dick made it home to catch him before he fell
off the bed....
God is good...The Holy Spirit...Gaurdian Angels...
Miracles...Kharma, Luck, timing...God is Able...

An ambulance ride to Blank...and our first admit...
I was devasted and heart broken. What an emotional
loss!!! Hollister had been diagnosed with "Epilepsy"
in Feb of 1999..... This 1st admit was devastating,
I could no longer take care of the seizures....

I never in my wildest nightmare could have
imagined what was ahead....

Hollister went home on 9-11...at lunch time...
The towers in NYC had been hit and we were
emotionally drained.

When September shows up on the Calender...
It is a time to remember!

Friday, September 7, 2007 3:03 PM CDT

HOME!!!!
Even a short stay is too long...
Seven days in the Hospital for Hollister is
nothing. It has been years since he had an admission
shorter than seven days...

We came home on Wednesday afternoon.
Hooch dog is always so happy to see us.
Unconditional love of a pet....nothing better.
Takes a day or two to get back into the routine..
I think, I came home more exhausted than Hollister.
All I want to do is sleep...haha

It is nice here today...cool and the humidity is
finally dropping. I had Hollister out on the
front porch this morning. He likes that, he sits up
so straight in the rocking chairs...It appears he
likes to be out there.

He is resting now. In a couple hours I will turn on
the Dowling game on the Radio..He will like that..

I was able to access his new "Power Port" this morning.
This is taking my nursing skills back a few years.
It worked fine...He didn't especially like the needle
in his chest...I guess the cream didn't help too much..
I am sure over time, he will get used to it.
I would like to think our insurance company likes
the fact that I can draw his blood and not have to
have a visiting nurse or for that matter any help at all.
Maybe they will give us a rebate....hahahaha

Kids are busy this weekend. Tonight Harrison is
going to the dance..These dances are a right of
passage for 7th and 8th graders who attend the
Catholic Schools. Hard to believe my baby is going...
I remember how much Hollister loved these dances.
He always had a great time. A great way to meet your
future Dowling classmates...and scope out all the girls!

Hillaree is busy with swim team...And she joined the
Dive team. She has never dived in her life. She is
doing great. Tomorrow is a big meet...Her coach called
her just "crazy and fearless" enough to be a diver.
She comes home each night sore, bruised, and aching....
She loves it!

We had Hollister out walking in the street last night.
He did awesome. He looks so good that it is hard
to believe he spent last week in the hospital.
During his admit, his metabolic profile was in
order...Yeah.. This tells me he is holding his own
against the MELAS!!! If we could figure out a way to
unhurt his brain!

Team Tough appreciates all that has been done!

To our little friend Quinn Elsenbast,
who just turned 6...Quinn was born
a month or so before Hollister had
his first stroke. Quinn and her Mom
came to visit at the Mayo Clinic on a
very sad day... She brought so much
hope with her, it was obvious how
special she would be......
The last six years...Quinn has held a
constant vigil in her prayers for
Hollister...a boy she only knows as
sick....
Today in the mail...as times before...
Art from our prayer Angel....but..
included in her note from her Mom...
Quinn had her birthday party...and
instead of gifts...She wanted everyone
to know about Hollister....so she
asked for a gift for Hollister instead
of herself....
My heart is so full that my eyes are
dripping tears...
To Quinn...you are wise beyond your
years...and you have touched the
hearts of us all!

Wednesday, September 5, 2007 2:20 AM CDT

What a sneaky little bug....

There is still some questions...exactly what this
nasty little bug is...each sight, grew something
different...So, the question was..is it all
contamination?...but he definetly was growing
something...most likely..Gram postive Rods...

Friday night, Hollister had his PICC line removed.
He had that sight for 13 months...Was kind of hard
to see it go..
It was thought that the BUG was there...
Turned..Bug, probably not there.......
IV's had to be started...This is not fun for
anyone! Hollister is an extremely difficult stick...
It seems that an IV only lasts about 24 hours..and
then start all over...AHHHHHHH

He had a quiet weekend. He looks good. The antibiotics
have helped. We took him to the courtyard on Saturday.
This place has an awesome courtyard and it is very
relaxing to go there!
Not a lot goes on in the Hospital...Holiday weekend..

When we came in on Thursday..No one was surprised
to see him...He likes to be here for a Holiday...
It has been decided, that he considers Blank Childrens..
his family...and we should be with family for the
Holiday....So...Once again, we watched the Labor Day
Telethon from his room...
Once again, I found most of if too emotional to watch!
I hope everyone gave all they could to Jerry's kids...
especially, since Hollister is one...the MDA has
helped us..when we need somthing, they have a great
loaner closet..AWESOME!!!!
It is time to find a way to cure NeuroMuscular Disease!

A decision had to be made about his PICC line...
He needs access for biweekly lab draws and IV fluid...
Lots to think about...It is likely that his PICC sites
have all been used...and surgery for an infuse-a-port
would be complicated by the MELAS...
I definelty didn't want a Hickman, Broviac, or Groshong!!
Thanks to Hollister's team....they came up with an
answer...that was possible...

Hollister had a Port placed...(a POWER PORT)....
He had this done in interventional radiology...
A surgical procedure without general anesthesia...
Radiology is on Level C...So much has gone wrong
for Hollister on Level C....Makes me nervous and
nauseous...just thinking about Level C....When the
elevator doors opened....ANXIETY...for me...

This time...Thanks to Dr. Gerdis, Corey(an Outstanding
nurse) and Dr. Lacey...It went perfectly...Hollister
tolerated the procedure well. He is a trooper.
So Hollister now has a new infuse-a-port...

Dr. Lacey was explaining how important the care of
a port is.. We reminded him, I had been taking care
of the PICC line at home for more than a year...
He laughed...and said we would have no problem...

The plan is to go home today with some antibiotics..
The Port site incision needs to heal..He looks good
and he is strong...
We caught the bug early....Thank GOD!!!!

Team Tough...continues to gather strength from all
of you who think of and pray for Hollister.

Friday, August 31, 2007 7:17 AM CDT

This certainly is not the note I wanted to write
this morning....Actually, I wanted to get it done
yesterday....

It was one year ago yesterday..August 30....
that Hollister made it home after his 115 day
summer tour of Hospitals and rooms....2 Hospitals,
1 helicopter ride, 13 rooms, countless Residents,
Doctors and Nurses...too many MRI's, 1 ruptered
colon, 1 cardiac effussion, I terrible fall,
0 Chicken wings..... and I amazing miracle that
Hollister made it home....

In the last year, we have all realized how awesome
he is. He has spent the last year working hard.
Just sitting in a chair was hard for him a year
ago...and now he wants to stand, and walk....
I am so proud of him and his efforts...he is
truly going where no man has gone before...
He is working so hard on talking and eating....
and seeing his surroundings...that God can
only know what I will be writing in a year....
I only hope that God see's what I want...

It would be hard to say thank you to
all the wonderful people who have
reached out and touched us.....
So, many awesome things...I have spilled
lots of tears...over the kindesses...I am
reminded each day how lucky we are...
Hollister wouldn't be here today without
all of you!!!!!!!

In the last year, Hollister spent only 10 days in
the hospital....It was June 23 of this year when
he had to be admitted....I was really disappointed
the didn't get to a year without being in the
Hospital...Remember, it was a bug...Klebsiella...
Pnuemonia...Not his MELAS...that he was admitted for
so....I really hate to count those days...haha

Unfortunately, Hollister was admitted to Blank
yesterday...On the Anniversary..of his discharge...
Had everyone forgotten...we didn't want to be here?
I reminded everyone that it was a year ago when we
went home, and he was so sick and week....all who
know and care for Hollister(and that is a lot....
Went.....OHHHHHHHH
then Hollister didn't look so bad....

At this point, it appears to be similiar to what
went on in June...some kind of BUG..bacteris in
probably the PICC line...the good news is this time...
I used my Mom/Nurse assessment skills and called
the Doctor the first day of his being "Puny" after
a seizure early Wednesday morning...(3am)......
Wednesday night, we took him to the office for blood
work..and a quick check by a Doctor..His labs looked
OK..so I felt relieved and silly.....
Early yesterday morning the Dr. called and said his
blood cultures are indeed growing something...NASTY!!!

He is in Blank 309...Yes, I have always wanted him to
be in this room....This is his birthday room...his
birthday is March 9...3-09...this has to be his lucky
room....So, hopefully, our stay will be short....

Wating to find out exactly what bug it is, so the
antibiotics can be fine tuned...for now it is a broad
spectrum....He still looks good...He is pale and week..
but in pretty good shape....A valuable lesson has
been learned by this Mom/Nurse...calling on the first
day...instead of day 4...a trip to the floor, not the
PICU......PRICELESS....

Most Importantly tonight is the Dowling Catholic
Valley Football game...and Hollister won't be there...
Again...this is now the 3rd year that he has missed
this game....He will be SAD....he still very much
loves his Maroons....so tonight, we will have him
in his new Beat Valley (again) tshirt...and we
will listen to it on the Radio......The only thing
that would make this ok would be if he were up to
eating Hooter's wings.....ha.....
(I believe that day will come and Dr. Valley will be
buying!)

Keep Hollister in your thoughts and prayers....
he needs to stay strong...to fight this bacteria...

and

GO BIG D!!!!!!!

Tuesday, August 28, 2007 6:23 PM CDT

It has a been a busy week since school started.

Hillaree and Harrison are busy getting into their
new routines. Homework has started.

Saturday, we made a trip to Algona. One trip to
Algona and the kids missed....a football scrimmage,
football practice, and a soccer game. Swimming
pictures were missed...she missed the team picture...
so she won't be on the poster this year....Hard thing
when you are in High School...

My niece Nikki got married on Saturday. Last year,
we didn't have any idea if Hollister would still be
here when the big day arrived...
THANK GOD, he is and he made it there.

Hollister has worked so hard this year.
He has fierce determination. He has
unstoppable faith and a laugh and a smile
that I wouldn't want to miss...He is an amazing person.
He makes me want to try harder...

It is always hard for me to take him places...
especially, where he may be judged....
by people who don't know him or even by people
who do.
It seems to me, that it is accepted by
"people", that if they ignore a sick person...
It is all right...I am constantly reminded that...
"people don't know what to say...." So, it is OK
that Hollister is ignored....
Well, I am here to say, that it is NOT OK....
Unfortunately, for Hollister his life already SUCKS!
and if he makes you uncomfortable...SHAME ON YOU!

Hollister has a terminal illness, he will never have
great happy days in his life..he will never drive,
he will never graduate from college,
he will never fall in love, he will never get married,
he will never have kids.....

He has already been given an incredibly difficult life....
and I am suppose to understand...family, and friends
who don't know what to say......
so they say and do nothing....
UNACCEPTABLE!!!

One of the high lights of Nikki's wedding (at least
for me) was Hollister dancing a dollar dance with
Nikki. He was happy. He had a great day on Saturday...
He was full of smiles and wanted everyone to see how
well he can walk...He is PROUD!
He slept well Saturday night...

Here's to Nikki and Steven...may you have a long
happy life together.....

Wednesday, August 22, 2007 10:10 AM CDT

SUMMER IS OVER!!!!!

Hillaree started school on Monday....
Harrison started school this morning....

Hillaree is a Sophomore!
Harrison is a 7th grader!

I have never been a Mom who rejoiced when the kids
go back to school. I myself love summer and my time
with them. It seems my time with them is short.

We bought school supplies and then we bought so more
school supplies. It takes a lot of stuff to get them
through the door! ha

I am feeling very sorry for myself this morning. The
house is very quiet. Hollister is still sleeping....
Even Hooch is back in bed...
So, I am left alone with my thoughts...this is never
good.

My memories are sometime so vivid, it is hard to
believe it isn't happening at this moment. Walking
Harrison into St. Theresa's this morning, like I
have walked my kids in there for the last 15 years...
I so badly wanted it to be Hollister I was trying not
to hug at the 7th grade door. Instead in a blink of
an eye...it was Harrison...and Hillaree is at Dowling..
and Hollister who should be starting his third year of
college....can't.....and again I remind myself that
my reality sucks....
I think of Hollister's Class from DCHS...some are
married, some have kids...some are working...and
a lot of them are starting their 3rd year of college.
Seems so long ago they were in High school...I am
sure they spend no time looking back...
and there are days that I can't look ahead.....
and I only wish I knew what Hollister was thinking!

We did try and get every last bit of fun out of
summer. Yesterday, we took Hollister and Harrison to
the afternoon Iowa Cubs game. It was great fun.
Some of Dick's family was there....
to watch Jason(his cousins boy) sing, the National
Anthem. The Meihost Clan is a lot of fun...
Thank you for a great afternoon of baseball and fun!

I am thankful that we have good schools and good
teachers looking out for Hillaree and Harrison.
It is nice not worrying about them!
I wish them both a happy successful year.
I hope Hillaree can find her "best friend" that will
be with her always...
and I hope Harrison is able to accomplish all that
he dreams for the 7th grade.

Only 179 school days until summer...........

--------------------------------------------------------------------------------
Get a sneak peek of the all-new AOL.com.

Sunday, August 19, 2007 7:05 PM CDT

Today is the last day of the Iowa State Fair...
Dick and Hillaree and Harrison have been out there
all day...Having great fair fun...

Corn dogs, porkchops on sticks, cheesecake on a stick,
monkey tails, little donuts, Gizmos, funnel cakes,
lemonade, fresh salted nut rolls and anything else
that fits on a stick...

Not to mention the Butter Cow and Butter Harry
Potter...that has to be cool...

I love everything about the fair, even the Bud Tent...

We have great family memories of taking the kids
every year to the fair. The year I was pregnant with
Hillaree, we saw the biggest Horse...He weighed well
over a thousand pounds, and Hollister said very loudly
to the crowd, "look Mommy he weighs just a few pounds
more than you do."

A few years later Hollister won 2 gold fish tossing
ping pong balls...we thought they wouldn't make it
through the night...and they lived for years......

The kids loved sitting through the news at the
Anderson Erickson stage, waiting for their turn to
be on TV or win a prize.....

Hollister loved the fair, he would want to go daily.
He loved the food, people, animals, and having fun...
and I am glad we took him often...

Today as I sit with my heart melting....
I am reminded that Life isn't FAIR...

and words spoken by my Mother....

"Your right, life isn't fair.....
and the Fair comes once a year, in August...."

So Goodbye Iowa State Fair, be ready for Hollister
and I next year...we will be ready to eat anything
on a stick......

Sunday, August 12, 2007 5:00 PM CDT

(I wrote this note on Harrison's Birthday.
took me a day or two to post it....)

Happy Birthday Harrison Patrick Farrell.
13 years ago at this moment he was born....
Hollister was in the delivery room with us and he
was very proud of his new brother...He got to touch
him first.
Seems surreal at this point to remember such an
innocent happy time.
Hollister and Harrison have always had a very special
bond. They are very much a like.
Every now and then it hits me like a brick to the head....
what they are missing.....How great it would be for
Harrison to have an older brother...and Hollister a little
one...What they could share...Movies, Hooters, sports,
Hollister at college, girls, hockey cards, computers,
gameboys...going for ice cream...rides to the dances at
school, a closeness only brothers
can have.
Instead....Harrison helps me take care of Hollister..
He helps dress him, get him on and off the commode,
and in the car for therapy...
Somedays my heart aches for what they have lost.....

This last week has been a difficult one here. Looking
back last year, Hollister was so sick. Harrison's
golden birthday was spent in the PICU with his parents
crying most of the day......

Last Monday was Hollister's last day of Speech Therapy,
he did not meet his goals...so he can have no more....
Stupid Insurance....
That was painful.

Harrison's birthday this year was very happy. We had
a surprise party for him at the NW aquatic center,last
night.
A lot of his classmates came and he was so surprised.
It was great. Thanks Hillaree, it was her idea.
We were also able to get Hollister into the pool. He
loved it. He smiled and smiled. He did always like to
swim.He was relaxed and happy. A good time was had by
all.
Harrison said this was the best birthday he ever had...
Life is good at 13....
Tonight, he is requesting....steak on the grill,
baked potatoe, bread, corn, cottage cheese for dinner.
A boy who knows what he likes...
And a 4 layer white cake with chocolate frosting....
A few of his favorite things....

To my baby....a Teenager....Happy Birthday....

Wednesday, August 1, 2007 6:13 PM CDT

I'm not a perfect girl.. My hair doesn't always stay
in place & I spill things a lot. I sometimes have a
broken heart.. My friends and I sometimes fight &
maybe sometimes nothing goes right, but when I think about it
and take a step back.. I remember how truly amazing life
is and that maybe just maybe….

I like being un-perfect.....My name is Hillaree.....

I try to wake up every morning knowing it’s going
to be a good day, or knowing I have SOMETHING to
look forward too. I am very competitive. I'm becoming
more opinionated by the day, and I'm learning to stand up
for what I believe in. I believe that everybody has the chance
to make a positive impact on the world. I have amazing friends...
and I wouldn't have any of this any other way!

When I wake up in the morning I never know if today
will be the day (as my mom would say). I always hope
that it will be today. I pray that it will be today.

This summer I have gotten to spend more time with
Hollister than I ever have. I really like spending
my days that I am not working with Hollister and my
mom. I get to give my mom a break, and I get to spend
time with Hollister. Hollister and I like to spend
our time just hanging out. Hollister and I do many
things together. We like to go for walks and watch
movies.. There are a few times that mom and I take
him out. Last week we did a lot. We took him out for
lunch, then we took him to the mall. Hollister always
liked to go to the mall as long as it wasn’t his money
that he was spending.

I think that I am stronger now that I am starting
my second year at Dowling. Before my first year of
high school I was a little scared to go to Dowling,
because I thought that my whole day would be only
about Hollister. I thought that all day long I would
be asked “How’s Hollister today”. I started my first
day and no one asked me. I could remember thinking to
myself “don’t you know who I am?” “I am Hollister Farrell’s
sister” “why aren’t you asking me how he is.”
I liked that they didn’t know that I was his sister.
It took a little of the stress off me, that I didn’t
have to tell everyone how he was. It was giving me a
chance to be me. Now, I know who I am and I love to
talk about him…..

I am very sad that school will be starting in just a
few short weeks. I will be going to school and swimming
everyday. Swimming starts again, right after Harrison’s birthday.
I will have meets almost every Tuesday. When I start swimming
there are some days that I will not be home until about 9 at night.
By the time I get home Hollister is a sleep and I went a whole day without
seeing him. This makes me sad, this can go on day after day….
I feel unconnected to him and I don’t now how he is when I can’t see him.

“We live day by day and just hope that today is the
day.” My parents want me to live as of a normal of a
life as I can they want me to go out on weekends and
have fun with my friends.

Hollister has opened my eyes in everything I do. He is
my inspiration and I want to do as much as I can….
Knowing what he can’t do. I just wish that him and
I could still talk like we used to, watch movies or
play card games. My mom is right when she says that Hollister
would always have something to say. Him and I have always
been very close. I love my time with him...

I am very lucky to have him as my brother.

Love,
Hillaree Mae

Friday, July 27, 2007 12:41 AM CDT

Last weekend in July.
Hate to even think about summer winding down..
I love having the kids home with me.
I will be very lonesome without them...
Hollister will too.

Hollister is sitting by me at the table. I look at
him and I forget sometimes. He looks so good. His
body is strong, his eyes are bright and he looks
like he is about to tell me something.

Quickly, I am reminded that his words are stuck..
and he isn't going to talk about sports, politics,
or religion. He isn't going to ask to go to Hooter's,
Shang Yen, or Speedy's. His dry sense of humor isn't
going to make me laugh and think....

Instead, I am watching him struggle to sit at the
table. He is trying to figure out what do to with
his hands and feet. He is mumbling something and
occassionaly he looks to me for help...

I am anxious for him to know the last Harry Potter
book is out and the 5th Movie...He loved reading
those books. He was in middle school when he brought
home the first book. Hollister and I read it together..
We loved that book and couldn't get enough..We would
fight over the books and sneak read them to get
ahead....I miss him....

He is struggling with speech therapy. He is not
participating. he drops his head and shuts his
eyes, when it is time to work. I know this is very
frustrating, but his speech pathologist is not
giving in. We will all continue to work, she gives
us homework...

He was "naughty" during his PT and OT yesterday.
He did work and had a good stretch, but he also
had strong opinions on what he wanted to...
Karen isn't about to let him off easy....and I
believe he knows it...so he tries to antagonize
her any chance he gets...
Most importantly, Hollister is reminded that we
aren't feeling sorry for him...He is strong and
with some hard work and repetition...We believe
he is capable.........

Hollister has always been such a great kid. He
was the boy that everyone wanted to take home.
He has always been very worldy, spiritual and
funny. I have spent countless hours wondering,
praying and begging God...why Hollister....
What could have gone so wrong that Hollister has
to endure this....
Common sense, Why not Hollister?
but in the heart of his Mother...it isn't always
comforting...and words make no sense.....

We in this house will continue with thoughts of
recovery and progress.....

Wednesday, July 25, 2007 6:26 AM CDT

Hard to believe it is the end of July.

Lots going on here...

Last Tuesday, the 17th...
Mom had her 12 week post radiation check up...
and she is Cancer free...REMISSION!!!
How awesome is that...
God is ABLE...
That was incredible news...
We will continue our prayers that she can
stay that way.....

Hollister's week last week was ROUGH..
He was out of sorts...
Monday at therapy, he was out of control...
it was awful..I think he scared his new Speech
Pathogist.
It took all Hillaree and I had to keep him
safe and get him to the car...He is very STRONG...
Tuesday appeared to be better...HA
He again was out of control...Took several of us
to hold him...WILD...Fortunately none of us got
hurt...

Wednesday, Hillaree and I took him to lunch and
shopping at Merle Hay Mall.. He did OK. He likes
to get out of the house. Hillaree is such an
awesome helper, makes it easier to take him.

Thursday, 10am SPT...he was too tired to fight.
He was also too tired to participate...
After therapy, we took him to get a much need
haircut. He would have hated how long his hair
had gotten. He was only a few weeks from winning
the Mullet competition at the Fair...HAHA
We took him to lunch again, hoping to spark
something...He at least was happy...
He did a great job at therapy in the afternoon.

Saturday, we headed to Algona...A Surprise party
for Aunt Jerri. She had a birthday that ended in 0...
Hollister did a great job at the party. I am so
proud of how well he did. He was there a long time.
Lots of people, who haven't seen him in ages..

Hollister is having a good week.
Not sure what the difference is....
but
I am not complainging....
He looks strong and healthy...

I continue to have high hopes that his brain is
slowly healing...and he will have speech and cognitive abilities...
I want more....
Today is the day....

Sunday, July 15, 2007 3:32 PM CDT

Hollister is sleeping.

He started his morning off with 2 big seizures..
I was totally unprepared. It was 10:00 and Dick
and I were getting him up and dressed..and WHAM...

I am always shocked...

He had a seizure at 10:00 last Monday morning..
He was sitting in the rocking in the living room,
and I noticed a changed in what he was saying...
...and WHAM....

again I was shocked.....
You would think after 8 years of this I wouldn't
be so surprised....
but, in my defense he is on enough seizure meds...
that seizures aren't reallly that expected...

On Tuesday Hollister started working with a new
speech pathologist... Hollister seemed to respond
to her. I am optimistic....I liked her very much.
We can still see Shawn on occasion...I know how
much Hollister will miss Shawn....
Hollister will see her twice a week. On Mondays
and Thursdays....I am anxious to see what he can
do..

On Friday, we drove Harrison over to Williamsburg
to meet his buddy M.Hubbell...He recently moved
to the Quad Cities...and wanted Harrison to spend
a week with them...Not sure they know what they are
getting into to..haha
We spent a few hours with Hollister and looked
at the stores at the outlet mall....Hollister
had a great day. It was a good time. I don't know
when he looked better...

He slept a lot yesterday. We took him to a movie
last night. He decided he couldn't sit still and
needed to talk...so him and I sat in the lobby....

Today, he is sleeping(medicated) with an IV
going...Hopefully, he will feel better later on.
I would like to get him outside...

Continue to hold Hollister in your thoughts
and prayers...need those seizures to stop and
his words to come back to him...

God is Able...

Saturday, July 7, 2007 7:07 PM CDT

07-07-07
Has to mean something!

Hollister who has always been very spirtual...
Used to always say that the #7 was perfect, in
reference to God....
So, today must be a very special day.
I have been reminding him all day that...
TODAY IS THE DAY!!!

Hollister made it to therapy on Tuesday and Thursday
this week. He gave the girls a work out both days..
He was very STUBBORN...Good to see..
Not much work...

We did get Hollister out of the house on the 3rd and the 4th
to see fireworks..He was a kid who loved the fireworks...
I like to think he enjoyed them...
it is always good to get out of the house...

Thursday night, we had a little excitement... The kids were out
lighting a few little fireworks with the neighbor.
Remember it's all fun and games until the Police show up!!!
I never knew my kids could run that FAST....ha

Friday he had a check up at the Doctors office.
He had to get 3 immunizations....I felt sorry for
him. He wasn't very happy...So, he has been very
crabby.....
He finished the antiobiotics last night...YEAH....
One less thing to remember to do...

Tonight is my 25th class reunion...I know, I know...
Hard to believe I have been out of High School that
long...
For me, it doesn't seem possible.
I was one of those kids lucky enough to have attended
one school. I went to kindergarten in Algona and
graduated with the same kids. How great is that. The
friends, I made those first years of school are still
my friends. I feel very fortunate. Those high school
friends the last 6 years of Hollister's illness have
been my greatest support. I would be lost without them!

Looking back, I realize how fortunate we all were to
grow up in Algona. On the nights when there was nothing
to do, we had the best times. We knew how to make
our own fun. Life was good in Algona, none of us could
have realized how good.....

My life now, is no where I thought I would be.
No where I ever wanted to be. I have learned so
much more in the last 6 years than I did the whole
time I was in College...(which was 6 years...)
(remember, I couldn't find a major.....)
Even the smallest miracle is still a miracle.

To the class of '82....
The class with class...
(right off my class ring...
which, I am wearing proudly...)
Eat drink and be merry...
and remember me fondly..haha

"Make new friends and keep the old.
One is silver and the other GOLD..."

Monday, July 2, 2007 4:29 PM CDT

We are Home...

The alcohol in the PICC line worked. Dr. (Valley) Flores
you are a genious..
A new PICC line was inserted at the same site. YEAH
That is exactly what we needed to happen, he is about
out of sites.

We came home with MORE medical equipment. He has
IV antibiotics to finish this week.

Ten days in the hospital for Hollister is nothing.
We decided that 10 days for Hollister is like a
23 hour stay for anyone else. haha

He is exhausted and is sleeping a lot. I hope this
passes soon. He needs to get up and start working
on is recovery!

July 1st is a hard day to be in the hospital...
The new residents come on that day. Brand new
residents.....
Harder this year, was the third year pediatric
residents leaving. In the last 6 years Hollister
has met a lot of residents. It is easy to get attached,
when they spend so much time with him. He has always
laughed and joked and ate Hooters wings with them.
This group that left on Saturday are the last group
who knew Hollister as Hollister. It has been very
hard knowing that every resident from this day forward
will only know Hollister as the sick kid with MELAS....
( a rare disease that they will never see again in
their practice)...They will never have the pleasure of
his sense of humor, teasing, and they will not get the
opportunity to place a bet with him...
Makes me very sad.
Dr. Archibald, who left on Saturday...He spent a lot
of hard days with us in the last 3 years. Seems Hollister
liked to test his abilities....He told me that all
residents at Blank would know about Hollister....
"He will grow like and Urban Legend"......
I hope that is true....When he left he made me laugh
and cry....to the class of 2007..You will be missed.

Here's hoping Hollister can continue to get stronger!!!
That the bacteria will be GONE...no more pneumonia!!!

Hollister is sleeping on the couch.

There is no place like home!

Saturday, June 30, 2007 6:54 AM CDT

A week has passed..

For Hollister a week is generally just the beginning
of his hospital stays.
This time, I hope it is about over...
Maybe 2 or 3 more days...

Hollister is doing OK. He is tolerating the alcohol
treatments for the PICC line. We are all hoping it
clears the bacteria.
He continues on the IV antibiotic for his blood
infectioin and pneumonia. He is also getting the
vest treatments for his lungs.
He is a trooper.
Hollister has never complained about all the Horrible
things he has been through in the last 6 years. I am
always so humbled by how stoic he is. He has proven
to us all, that he is someone special.
His faith and trust in his beliefs has never once
waivered. He makes us all strong.
It is the Mattie Stepanak Quote...
"WHY NOT ME"

He has been up and moving around. Therapy has had
him out walking the hall. Tonight Dick and I had
him out there and he made it around the whole unit
TWICE. Amazing.
Around 10, we took him to the tub room for a
whirlpool and a soak. He loved every minute of it.
He sat and smiled. I was reminded of all the tub
soaks he had last summer and how much stronger he is
now. His progress has been slow and steady but mostly
incredible. I love that tub.....

I have been very thankful for the support of the
staff in the PICU and here on Blank 4...Everyone is
amazed at his progress and happy to see him looking
so good. They all know where he has been and what
could happen.

Please keep Hollister in your thoughts and prayers.
He needs the continued strenght to get through this.
He needs to work so much harder to get this out of
system...
GOD IS ABLE!

We can't do much about the length of our lives,
but we can do plently about its width and depth.
Evan Esar

Wednesday, June 27, 2007 10:36 PM CDT

We have arrived to the floor. YEAH....
Hollister is in Blank 411, he has been in this
room several times. It is very comfortable.

The Blood Cultures came back for the PICC line
and it is growing the same culture. DARN....

Dr. Flores, believes that the infection came
before the pneumonia...
Hollister has had several PICC lines and is a
very difficult "stick"...
He still needs a "line" of some kind, because of
the need for bi-weekly lab draws and frequent IV
fluids.
So....Hollister's Hooters buddy Dr. Valley
(aka Dr. Flores) started thinking....
He really wants to try and save the PICC,
he is using 70 proof alcohol to bathe the PICC
line. A very small amount is injected into the line
and repeated daily for 5 days, hoping that the bacteria
will be DEFEATED....
The antibiotics should take care of his lungs and
the infection in his blood...
Quite a process.
Thank you Dr. Valley...
Here's hoping the alcohol and antibiotics work....

As usual, I want too much. Tuesday night, I got into
my head that Hollister was ready for a shower.
I was wrong..He is WEAK. I wasn't expecting that.
It turned out to be a lot of work for Dick and I and
totally tired him out...

He had a quiet day today. He did tolerate sitting in
the chair after we got to his new room..

He is quiet the trooper. He is working hard. He is
tolerating the "Vest" treatments breaking up the
pneumonia. He is TOUGH...

Team Tough is fighting...
Hoping to get out in a day or two...

"Set positive goals and reasonable expectations."
Steve Strasser

Tuesday, June 26, 2007 11:16 AM CDT

The rumor started by me yesterday,
was just that a rumor. He is not going home
today. I always have high hopes.

He did just fine yesterday. He maintained his oxygen
level throughout the afternoon and evening on room air.
He tired of the nasal cannula and removed it himself.

The tube feeds have been started, nice and slow. It
will take a day or two to get him back where he needs
to be.

Last night, he looked pretty good. We turned the
bed into a chair, and he tolerated sitting. He was
animated and talking, hard to know what he was
saying or thinking.

Around 11:30 last night his breathing changed and
his heart rate was up. His oxygen levels didn't
change. Something was up...It was midnight and he
felt feverish....boy was he hot...40.7C....
translates to about 105.4...HOT and miserable...
Wasn't long and he was sick all over, from everywhere.
Turned into another long night....

It was after 3am when he finally was able to rest.

The blood cultures are back and now the antibiotics
can be streamed to the exact bug...
The exact bug is Klebsiella Pneumoniae.
I hate to think what it might look like...gram negative rods....
Thanks to a very good Mirco Biology teacher, I have an idea....
I am very hopefull, it will respond to
the right anti-biotics...

Blood cultures have been sent again, from the line
and peripherally. The question is now, which came
first...infection or pneumonia...Is the start of all
of this an infection in his PICC line???
Lots to think about today.

Hollister is without fever this morning and
appears to be resting....It is obvious that he
doesn't feel well.

Today is a day of rest, tests , and to be blessed...

Here's to Hollister and his desire to withstand
more than he deserves...

Team Tough continues to draw strength from all of
you....

Monday, June 25, 2007 6:21 PM CDT

Hollister remains in the PICU.
He has been resting most of the day.

Hollister was able to keep the bi-pap on since
Saturday. He is very tough. I don't think I could
have handled it.
The bi-pap was taken off today about noon. He has maintained
his oxygenation with some oxygen through a
nasal cannula. He looked relieved to have that mask off.

He still isn't breathing deep and there aren't many
breath sounds in the lower lobes. He is still breathing
very fast at times.

The blood cultures did come back postive, meaning that the
infection from his lungs made into the blood stream.
The fever is gone, yeah. He is on two broad spectrum anti
biotics for this and the pneumonia.

He is still getting the respiratory treatments and
the asculatation vest trying to break up the pneumonia.
Hopefully, this will help his lungs.

I am anxious to see what a chest x-ray will show, how
much better his lungs look.

I am ready to take him home. I can take care of this.
I am sure he is very weak, but we can sleep at home.

Team tough continues to need your prayers. Hollister
has been through enough!!!

Hollister is certainly tough and proves it on a
daily basis....

God is ABLE!

We will wait to see what tomorrow brings before I
get him in the car....

Saturday, June 23, 2007 3:57 PM CDT

Team Tough is hurting today....

Hollister is struggling.

He woke up this morning having serious breathing
difficulties...

He was transported to Blank Children's Hospital
via the amublance(station #9, we love you guys!!!)

Hollister is in the PICU.
He has a very big pneumonia from an aspiration.
I am not sure how this happened if it was from the
tube feeding or vomitting....
The PICU intensivist, asked if I wanted to see the
chest X-ray as it was very impressive. I opted not
to at this time.
Not sure how this happened.

He is on a Bi-pap machine, helping him breath.
We are all watching the minutes on the clock pass
hoping that he can tolerate this and not have to
be intubated.

He is very restlesss. Keeping him comfortable is difficult.
He is also running a temperature greater than 102.

Lots of lab work, watching all his lab values. He
needed some extra fluid to get things back in line.

Dick and I are greatful for the new Dr. in the PICU,
she seems on top of it. My mind was eased when we
got to the PICU and Hollister's nurse Elsa was there.
God is good.

Hollister is very ill today and we ask you all to
hold him close to your hearts...

I know God hears all of our prayers....

Friday, June 22, 2007 11:38 AM CDT

Team Tough is headed to Algona to participate
in the Relay for Life. This is a cancer walk.
The team will walk from 7pm tonight until 6am
tomorrow morning. Rain or shine, and it looks
like rain....AHHHHH
Cancer infiltrated team tough this year
when my Mom was diagnosed with Lung Cancer.

Well, we took that very personally and decided to
take team tough on the road and participate.
I am very proud of our team we raised over a
$1000 with Hillaree and Harrison bringing in
over $600. OUTSTANDING......

When Hollister got sick 5 1/2 years
ago, we have had the pleasure of meeting so many
families with sick kids....and to my heart breaking,
so many have died...of CANCER.

Team Tough is fighting not only for our Grandma Jo,
but also for a little man named Jace who continues
to fight cancer in his brain. He is a trooper who
Hollister met on one of his admissions and he touched
our hearts. Keep him in your thoughts and prayers....

We also walk today and remember out friends who have
died from Cancer, they continue to walk with us daily
in our hearts...
Trent, Tyler, Joel, Josh, Ethan, Brant, Cara, Nicole.
Too young to die before a cure could be found.....
Today, they play in heaven's playground.

Cancer......

Sadly,
Team tough is not complete as Hollister and I were
not able to make it to Algona. Hollister is still
sick. He has had quite a set back. He has been running
a fevor with vomitting and diarrhea. He is very weak.
I am doing all I can to keep him at home.

Please keep Hollister in your thoughts and prayers...

Tonight, think of Team Tough as we make a little
ripple in what needs to be done to cure cancer.....

Wednesday, June 20, 2007 12:52 AM CDT

Last day of spring.

Today is Hooch dog's birthday. He is 8!
Time is certainly moving forward.

Happy belated Father's Day to all
who are Father's....Especially to
Dick and my Dad.

Hollister has been busy. We have had him out walking
in the street almost everynight. It is so exciting to
see him getting stronger. He gets lots of encouragement
from out neighbors. He does a great job.

Last week, Hillaree helped me get him to the basement
for showers...and on Monday, I told Hillaree that I
wanted him to WALK up the basement stairs......with
much assistance from us, he did it. He was proud...
He has done it several times and each time I am amazed.

He never ceases to impress me. His smile is contagious!
He also has been thumb wrestling. The first night this
happened, I cried..I made Dick and Hillaree get out of
bed to see it. He was incedible. He is strong and plays
to WIN.....

Friday Dick and I took him to a movie and he seemed
to enjoy it. Then on Friday night, the movie in
the park was at Ashby park in Beaverdale, so we took
the kids. It didn't start until after 9pm, It was
FUN!!! The movie was Back to the Future...One of
Hollister's favorite, when he was very little. We
all had a good time.

The rest of the weekend it was way to HOT and HUMID
to be outside. The kids and I played cards with
Hollister. He was very attentive and even tried
to draw a card. It was very exciting.

He worked very hard in therapy yesterday....he walked
along way. He was even able to push his arm through
his shirt...doesn't sound like much...but for this
Mom, it was BIG...There were cheers in the therapy
gym.......

THEN.................

0630 pm
I was getting his feeding ready and Hillaree was
helping him to the chair...and she screams...
"Mom come, Hollister is seizing".....
DARN!!!!!
He seemed warm, fever like. I was able to give him
the Diastat and his meds, start an IV and get him
to the couch. By 7, he appeared to be resting
(sedated)....
He had a very restless night. I did give him his
5am feeding and got him up to the chair about 7:30..
He seemed alert but he looked like he felt bad.
He tolerated his moring medications through his
G-Tube...and 30 minutes later...he started with the
vomitting.
AHHHHHH
Phenergen is working it's magic now, he is resting!!!!

Hopefully, whatever is kicking his butt will be
gone shortly.......

Keep Hollister in your thoughts and prayers,
he is working hard today.....

Happy Birthday to Hooch Dog Farrell!

Sunday, June 10, 2007 4:22 AM CDT

Hollister is up and ready to go!
I am hopeful with his 5 am feeding he will be ready
to lay back down.

This is a nice time of the morning, laundry and
dishwasher are running. Good to get started...
I guess..ha

The day has started! The birds are even starting
their day.

First week of summer is over. I hate that the whole
summer is going to go this fast. Hillaree had three
double header softball games. Hollister and I did make
it to all but one of the games. She isn't getting a lot
of playing time...so we'll see how long she wants to
work that hard....
Hollister is starting to get a nice tan on his legs and
feet. He was always very proud of his sandal tan!

Hillaree started lifeguarding over the weekend. She
took the substitute position because of softball,
I don't think she will have any trouble getting her
hours.

Harrison has been busy riding his bike and going
to the pool. He really likes being a kid. He has
1 or 2 baseball tournaments left. He may play
second season for another team.

Hollister has also been busy. Therapy on Thursday he
was very cantankerous..He gave Karen and Robin the
business. It was good to see Hollister. He was never
afraid to give Karen the business..haha

Dick and I have been helping him walk at home. We
take him outside to walk on the street and he is
doing amazingly well. He is somewhat unsteady but
once he finds his groove, he likes to move! I am
overwhelmed each and everytime he takes a step.

He is using his voice...A LOT!!!!!
Lots of words...Occassionally, he will say something
that is appropriate and understandable. When this
happens, it usually stops me from what I am doing and
I cheer and can't believe it! I always want more!!

The weather has been so nice. We try and get Hollister
outside as much as we can. The front porch is a perfect
place for him to sit and enjoy the activities in the
yard.

When I think back to where we were a year ago. My
heart breaks. He has been through so much. I am
reminded of how much he lost last summer and I feel
lost. I try not look back very often but occassionally
it does get the best of me...

I am reminded that Hollister wouldn't want us to be
sad. I can in my mind see him laughing and talking
and his smile that was so geniune. I imagine him
wanting to go to HOOTER'S for lunch and playing cards and
watching sports.

On this beautiful spring morning as the sun is starting
to come up and our yard is coming to life, I am
reminded that; God is Good!
and God is Able....

"We had to celebrate and be happy because your brother...
was lost, but now he is found."
Luke 15:32

MAX LUCADO:
When our oldest daughter, Jenna, was two, I lost her in a department store.
One minute she was at my side and the next she was gone. I panicked.
All of a sudden only one thing mattered--I had to find my daughter. Shopping was
forgotten. The list of things I came to get was unimportant. I yelled her name.
What people thought didn't matter. For a few minutes, every ounce of energy had
one goal--to find my lost child. (I did, by the way. She was hiding behind some jackets!)

No price is too high for a parent to pay to redeem his child. No energy is too great.
No effort too demanding. A parent will go to any length to find his or her own.

So will God.

Mark it down. God's greatest creation is not the flung stars or the gorged canyons;
it's his eternal plan to reach his children

Friday, June 1, 2007 1:28 PM CDT

SCHOOLS OUT FOR SUMMER....
words every kid longs to hear!!!!

Hillaree has a very busy summer in her plans.
She is playing softball, the freshman team.
She likes it very much. She also got a job
as a life guard at the Des Moines Pools. She
had taken her WSI(water safety instructor) and
CPR training last fall. So she is ready to work.
and we are ready for her to work...haha

Harrison is finishing soccer this weekend. He is
busy playing on an AAU baseball team and will play
second season on another team. He is busy...
I asked him what he wanted to to this summer and
he said, "Be a kid"...I guess he wants to sleep late,
play whiffle ball in the backyard and go to the pool.
So, I will organize very little for Harrison. He is
on his own time!

Hollister had a big week. Sunday Dick and I and
Hollister drove up to Algona for memorial day. It
had been a long time between cemetary visits. It was
good for Dick and I to silently pay our respects to
our family and friends. I am reminded, too many too soon!
It was so windy that we couldn't get Hollister out
of the car until we stopped at Grandma Jo's. He was
relieved to get out of the car! ha

Tuesday, he did fine in therapy.The OT(occupational
therapist) helped him to play a game against Hillaree
and he won...He was very proud that he won!!! Was good
for all of us to see the ole' competitive Hollister.
He was tired. Monday threw our whole week off.
Tuesday night, we were getting ready to go the
Dowling track banquet and
Hollister had another seizure.....too many!!!!!!
The track girls dedicated thier season to Hollister
and his classmate and Hospital buddy Jena...
How great is that.

Wednesday bright and early 5am, we headed to Rochester.
He had 3 appointments at the Mayo Clinic....I am sure
he was thrilled to ride in the car again most of the
day...ha
His appointments went OK. The GI doctor and the
Genetics Fellow, thought Hollister looked good. They
are encouraged by what I could tell them. Genetics
is sad that he isn't getting more therapy and especially
speech. Now is the time to see if his brain will wake
up...Neurology as usual was quiet. He looked at Hollister
briefly and didn't say too much, good or bad..
All of Hollister's blood levels have been checked to
make sure that his "cocktail" is still appropriate.
Will wait to find out....
We had a short stop at the RMH(Ronald McDonald House)...
we like to check in everytime we are in town and
drop off our pop tabs...we love that place...When
we win the lottery(ha) we will donate a lot to them!!!!

And now for Hollister's big news...............

Yesterday at therapy.. After he was stretched and
played a game of UNO with Hillaree. It was time to
walk in the pacer....Hillaree went to grab it for
Karen...I had my back turned and I heard Karen tell
Kim(another therapist) to move they were coming
through...I turned to see Hollister WALKING with
Karen and Robin....no pacer...It was awesome!!!!
He walked right out the door and up the ramp to the
atrium and around it once...They stopped and started
like no big deal....When he was tired he turned to
Karen and said..."I can't!"...at that point it was
just too much....My heart was so full that I couldn't
stop my darn eyes from leaking.....

GOD IS GOOD!!!!!!

Here's to a great summer, accomplishing many things....

“Develop an attitude of gratitude, and give thanks for everything
that happens to you, knowing that every step forward is a step
towards achieving something bigger and better than your current situation.”
~Brian Tracy~

Saturday, May 26, 2007 5:30 PM CDT

Happy Anniversary to my Parents....
It is with great pride that I say my parents
have been married 51 years! It has not been an
easy 51 years but I like to think that the good
times have certainly outweighed the bad times......
My Mom's CANCER this year opened all of our eyes
at how much they care for and rely on each other.
It was good for all to see how much they love each
other.....after 51 years!
GOD IS GOOD!!!!

A Holiday weekend is upon us....
and true to Hollister...
He had a very big seizure on Thursday....

Knocked both of us off our feet!(not literally!!!!)

I was getting him ready for therapy...
He had been up and awake. He seemed to be fine..
He was sitting up..I had been talking to him.
He was half dressed...I was giving him some of his
medications...slow and easy...I noticed some
myoclonic jerks in his left arm....and them
A GRAND MAL SEIZURE. I couldn't believe it.
my first thought....AHHHHH I am home a lone...
A good nurse likes HELP!
so I quickly gathered my thoughts and did what I
needed to do...and got all of the medications in
and an IV started and moved him to the cot...
15 minutes later he was resting quietly....I sat
quietly by wondering what happened!!!
The seizure came out of no where....
He rested and I watched and waited....he did not
have another one...
But, I worry that it was very hard on his already
injured brain.....
Unfortunately, that seizure took away what LITTLE
comfort zone I had!
I continue to run the IV fluid...and HOPE for the best!

It is a quiet Memorial weekend. Harrison is suppose
to be playing in an AAU baseball tournament...
But thanks to mother nature and all of the rain.
No ball games today...Rest of the weekend is
questionable!!

The sun is starting to peek out..and Dick is
lighting the grill....
Memorial day is the gateway to summer...

On this memorial weekend....
May all of you enjoy your families and
remember your loved ones....
and thank our military folks for all who have
been lost.

And toast my parents...
Here's to Jerry and JoAnne...

Friday, May 18, 2007 9:58 AM CDT

Happy Friday....
Lots going on here.

Last Friday,
We took the kids and went to Omaha, Hollister
did GREAT. I think he was happy to get out of
the house. It had been a long time. We drove
over for Laura's (my cousin) Hooding ceremony
from Law school. We went to the Mass also.
Hollister was AWESOME. He sat through Mass without
any difficulties. I kept reminding him where we
were and why. He has always loved Laura. She is
more like a niece than a cousin. A funny thing
happened during the Mass.....during the exchange of
the Peace be with you....a gentleman touched
Hollister's hand....and Hollister pulled it away and said....
DON'T!!!!!
I was thrilled(and slightly embarassed).
It was totally appropriate....and I had never heard
him say don't. Laura we are so proud of you!!!!!!

Saturday night, we took the kids to Mass(again)....
(even Hollister)....and right after Mass was a party
for Mrs. Landolt. She is retiring to Texas. We will
all miss here. I am thrilled that all three of the
kids got to have her as a teacher. Hollister did well
and was happy to see so many familiar faces.

Sunday was Mother's day, and we took Hollister to
one of Harrison's baseball games. He likes to get
out and sit in the sun. It was nice. He had a busy
weekend and did GREAT!!!!!

Mother's day at home with all of my kids..How great is
that. The last 2 years Hollister was inpatient Blank.
He was very sick on both days. Nice to be home!

Mother's day...What a great day. I love being a Mom.
The "naughty" Farrell kids have brought me so much
joy. One of my favorite Mother's day with Hollister
was when he was in Kindergarten....They had made
wonderful gifts for their Mom's....
On the morning of Mother's day...here comes sweet
little Hollister, proudly holding a gift wrapped
with paper that he had made and wrapped himself.
It was awesome. At that moment a Mother's heart has
never been fuller.
I carefully opened the beautiful package and found
a plate that he had drawn on. I immediately asked
Hollister to explain his drawing...He went on to
explain that it was a picture of the two of us at
the beach....there was water, a sun, and a rainbow.
and on it was IPPE....in my mind...I am trying to
figure out what IPPE was......and then Hollister
said....Oh and look I even put the date on it.....
1993.....
PRICELESS!

I now have 3 beautiful plates that I admire everyday
and remember how much I love those 3 little souls....

The week has been a little rough(on me)...Hollister
for some reason has his days and nights mixed up....
Hoping that will straighted out soon. I am getting
to old to continue with all nighters....(I have been
able to get caught up on laundry...ha)

When he is awake, he has been more interactive.
He likes to stand at the platform walker. He is
definelty getting stronger. I am ever hopeful
that things will start reconnecting.

TODAY IS THE DAY!!!!!

Monday, May 7, 2007 11:01 AM CDT

Another wet and dreary Monday...
After a wet and dreary Sunday...
Saturday was dry and dreary....we did get a little
yard work done. Still have some flowers to plant
and the garden...

It was a happy Cinco De Mayo... Chips and all.

A year ago today, this Monday May 8th...
Hollister was admitted to Blank Children's Hospital.
He was admitted after a very long and difficult
week. Turned out to be a very long and difficult
Summer. I think back to the journey that started
one year ago today and I am heart sick. I believe
that mistakes made by so many brought Hollister
to this point. Scary!

Hollister continues on. He is strong. He has been
standing at the Platform walker daily. He is up to
about 15 minutes at a time, at least once a day.
I have figured out...with Hollisters brain
injury(which is what the stroke is...), he needs
REPETION,REPETION,REPETION.......
When we do things daily with him, they seem to get
easier. I may be the hopeful, optimistic, foolish
mother....BUT..I see him responding.... and I am
encouraged!

Team Tough continues to need your thoughts and
prayers. Hollister is strong and able...
God is Good!
All of the time!

We will find grace to help us when we need it.
Hebrews 4:16 (NLT)

God isn't going to let you see the distant scene....
so you might as well quit looking for it.
He promises a lamp unto our feet not a
crystal ball into the future.
We do not need to know what will happen tomorrow.
We only need to know he leads us and
"we will find grace to help us when we need it."

Everyday Blessings
Max Lucado

Tuesday, May 1, 2007 11:41 PM CDT

Happy May Day.....

One year ago today was Hollister's last good day.
I have spent an enormous amount of time re-living
that day. I play it over and over in my mind like
the movie Ground Hog's day.......
Hard to imagine that May day would ever be that
important....If I had known that was the last day
we would talk to each other....I would have said so
much more. We spent the morning making May baskets
from construction paper...it was "hill-a-rious"..
I had paper, glue, and tape stuck all over.
After he lunch he napped and we watched Dr. Freak
(Dr. Phil) and Oprah...and we ate all the goodies
out of his May Baskets....
I miss my buddy very much...
This May day...I couldn't bring myself to make a
May basket...first time in 20 years...

I wish I could say that 2 weeks have passed without
a note and we have been out doing fabulous things...
but...
Life has been very consuming.

Harrison and his future problem solvers made it to the
state competition. These are four great kids....I was
lucky enough to tag along with them. Proudly, they
finished in THIRD place. Pretty amazing...and they got
4th place for their skit...I am so proud. We honor
our kids for all of thier athletic talents...It is fun
to be part of promoting smart kids and what they can do.

Speaking of sports tomorrow Harrison is running in
the conference meet for track. He is running in two
relays. He is very fast and I am proud that he gets
to run..This weekend his soccer team is playing in the
state cup. He is busy. He is also working very hard
with the speech and debate team at school.

Hillaree has also been busy. She is a thrower on the
DCHS track team. Tonight, she threw an 8 pound shotput
26.1 feet. That is her personal best. Not bad for a
freshman. She is very strong. I am curious to see how
far she can throw and hit a softball... That starts very soon.
She is such a good kid. She spends her time voluntering,
socializing, and babysitting.

Hollister, I believe is medically stable and holding
his own. He continues to get lab draws twice a week.
No news is good news. He is tolerating his feeds well
and I am starting to adjust his calories. He has been
drinking some water and chewing some ice. Today at
therapy, he spit yogurt everywhere(including on Shawn!)

The MDA has a loaner closet...which is a good thing.
We have been able to borrower things as we need them.
I hate to spend money...mine, MDA's, or waiver...so
if all possible, we borrow things. We try to be good
stewards....So, Karen(Hollister's PT) suggested we
get a platform walker, and the MDA people put a call
out, a week later...we have one. We have been having
Hollister stand in it daily...This helps him remember
standing and hopefully walking....Hollister and I
continue to work hard...
I am ever optimistic that he will walk and talk
again!

Hollister and I have been spending our days outside.
We like to sit on the front porch. He even naps on
the glider. Somedays we sit on the back patio and
listen to the birds...and watch Hooch chase the
bunnies.

Next year on this May day, Hollister and I will
truly celebrate...

The world's favorite season is the spring.
All things seem possible in May.
- Edwin Way Teale

Monday, April 16, 2007 11:54 AM CDT

Spring has returned.
Suppose to be in the 70's today!
After the last few weeks, the weather has
been so nasty...our plants have so much to do.
Many have been frozen, rumor has it that the
lilacs won't bloom this year. Hard to imagine the
spring without the smell of lilacs...

Hollister is still very weak. He has been sleeping
a lot. When he is awake, he has been very animated
and verbal. yeah...lots of words...little sense.

I remember last year at this time, we were getting
ready to go to an Iowa Stars Hockey game. Hollister was
animated and talking, talking, talking....It seemed
as if a light bulb had turned on.
He was happy, loud and very opinionated.
It was great. I said to Julie, " I fear that one day we will miss this..
his talking, opinions and laughter!" I had no idea how soon
that day would get here and less than
a month from that night...Hollister
was sick and hasn't talked since! I miss it all!

I am hopeful that the seizure didn't set him back to far.
He is standing and weight bearing fairly well.
Today is the first day without any IV fluid, I will
watch and see how that goes. If he appears to need
some, I can start it again. (again...thank God I am
a nurse...ha)

Hillaree and Harrison have been busy with school and
activities. They both spend so much time away from the
house. Dick is usually running them and Hollister and
I...sit and sit and sit...ha
Yesterday, after Harrison's double header baseball..
We were all home working and playing in the yard.
We even had Hollister outside for part of the
afternoon. The sun felt good on everyone. I enjoy
our time together.

Keep Team Tough in your thoughts and prayers as
Hollister struggles through each day!

"When I hear somebody sigh, "Life is hard,"
I am always tempted to ask, "Compared to what?" --
Sydney Harris

Thursday, April 12, 2007 11:40 PM CDT

It was a happy birthday...
I really wanted the day to bring my Hollister
back to me...I wanted nothing more than to hear
MOM....from Hollister.
I continue to wait as patiently as I can that he
will have improvements.

I miss all that he is. I miss him wanting to hold my
hand when we would sit on the couch...(with his poor
vision..he liked to touch our hands), I miss his
laughter and his very dry sense of humor...and I miss
his talking and talking and talking...

The day started out busy, Hollister required a lot
of care this morning. More than usual. I was tired
and ready for a break by 10am...ha

He did make it to therapy yesterday. He was very
weak. Karen and Robin did stretch him and stand him
and wake him up.

He came home from therapy and took quite the nap.
He was snoring on the couch..He was tired. That was
a lot energy used.

Harrison and Hillaree each made me beautiful
gifts for my birthday. Harrison made me a wooden
box, with Mom on top of it. Hillaree is taking a
pottery class in school and she made me the most
beautiful vase and a box that has a Psalm on it.
It says...Keep me as the apple of thy eye. Hide
me under the shadow of thy wings....
How great...

It was a good birthday
and my wishes are many.

A birthday thought..................

Inside every older person is a younger person -
wondering what the hell happened.
- Cora Harvey Armstrong

Wednesday, April 11, 2007 8:33 AM CDT

The word of the day....

SNOW!!!!!!!

Enough is enough..
We want spring...poor tulips didn't get a chance
to bloom...

Hollister continues to be very weak. He looks rough.
Finally, Sunday night I decided to try some
Phenergen(a suppository for nausea)at bedtime..
and he slept and slept. His nausea appeared to be
less on Monday and better yesterday. He can't talk so
it is hard to know what is going on.

I did start some of his tube feeding yesterday.
He hadn't had anything since 6pm on Saturday.
He tolerated 1/2 of the normal amount yesterday with
no water. I ran the it slow, 1 can at a time. I was
very happy that all 3 cans stayed down...YEAH

He is still getting IV fluid. He is finally putting
out some urine. It took a good day or so to get
him hydrated.

Yesterday, I was able to get all of his medications
through his tube. No water, using some flat 7-up.
He tolerated all of his meds and kept them down.
I hate when he can't get his Mito Cocktail. This is
what helps transport protein(energy) across the cell
wall. At a time when Hollister is sick this is very
important...His mutated mitochondria are looking for
energy...and they will take it from anywhere they
can........

Mitochondria and metabolism....so much to learn!

Hollister is still sleeping this morning and he
looks peaceful. I continue to be hopeful that his
brain is resting....

TODAY IS THE DAY!!!!!

Hillaree went back to school today and Harrison
went back yesterday. This cold, rainy, snowy
spring is making a mess of thier sporting schedules..
Track meets, soccer, and baseball...POSTPONED!!!!
Hard to keep track of thier schedules on a good day...
haha

Hollister and I are staying indoors.
He missed therapy yesterday, hopefully...he will
feel well enough on Thursday.

Here's to spring finding it's way back to us...
Hollister and I want to get out of this house..
Cabin Fever is definetly setting in ..ha

Real integrity stays in place
whether the test is adversity or prosperity.
Charles Swindoll

Sunday, April 8, 2007 8:29 PM CDT

Happy Easter!

After a very close call last night with Hooch,
the Easter Bunny did indeed make it in the house.

Good Friday was especially GOOD.
On Friday morning,
A group of kids at St. Theresa's put on
The Trial of Pontious Pilate...
Harrison's Mock Trial Coach wrote the trial.
It was very good and was a good learning tool.
Harrison was Pontious Pilate, and he did a great
job.
Hollister was up and able to go with Dick and I.
He slept through part of it, but was very good.
It was awesome that Dick and I both got to see
Harrison..

Service was at Three and we decided to try and take
Hollister. We did and he did great. Dick and I
sat in the back with him and he was awake and
quiet. I was thrilled that we could take him.
Harrison was on the Alter and Hillaree attended
the Good Friday service at Dowling.

Saturday was Ok, Dick and I got to run a few errands.
Hillaree does such a good job taking care of
Hollister. She is very caring and compassionate.

Hollister was very happy to sit at
the table while the kids were
coloring Easter Eggs. Lots of memories
of egg coloring. Hollister was in a very
happy place. It was fun to watch the
beautiful eggs made...

Saturday night around 11:30, Hollister had a grand mal seizure.
Totally unexpected. He started by throwing up.
I started IV fluid, through the PICC line. I ran
a bolus fast to get started. He was doing OK and
then WHAM....seizure....
Not sure what do to....I gave him some Diastat and
hoped for the best...This is when I wished
that Hollister had a Doctor...
He truly has NO ONE managing his
Mitochondrial disease....When anything
happens, we are all alone to make
decisions...(makes me sad that we are managing his disease,
without any guidance....)
He continued with the nausea
and vomitting for a while...But no more seizures.
About 1am, I decided to try and give some of
his meds...his seizure meds...and he did keep
them down....
and then he rested...He slept on the couch sitting
up next to me, just to be sure.
about 4am...we put him to bed....
We didn't leave his side....

I am very worried what the grand mal seizure did to
his already hurt brain....nothing good can come of
this.

Today he slept a lot. When he has been awake, he
continues with the nausea and vomitting...
Why doe he have N&V....is it coming for the brain...
Injured brains can make one very nauseaous....

We had a very quiet Easter, I guess we
all did...Mom left a message tonight,
that her and Dad spent the whole weekend
alone. She slept more this weekend than
she has in long time. Sad, this
Holiday with Hollister still here...
we couldn't get together.
Dick and Hillaree and
Harrison did make it to Mass this morning...
Dick cooked a nice meal, Jerri was here and
Harrison's buddy Hubbell spent Easter with us.
Hollister was sleeping on the couch...He is worn out.

and Hooch appears to be a little
depressed, he let the Big Bunny
get away........

Today was not the Easter we had hoped for.....
But it was Easter and.....

Jesus Christ is RISEN today......

Thursday, April 5, 2007 10:59 AM CDT

Happy April.

We made it through April fools day unharmed...
Not that Harrison didn't try to fool us...
He is "joker" all year long.

April 2nd was Hillaree's half birthday. Only 6 short
months and she will be 16. Hard to believe. She has
grown up before our eyes. She truly is all that is
good. I like to think that Hollister has had
something to do with that!

Hollister appears to be having headaches. He rubs
the left side of his head..I have been treating
him with Tylenol and Motrin. I hate to think of
him having pain. Makes me nervous.
He has been very tired. He is still sleeping now.

Last weekend Jamie and Judy were here. Hollister
was happy to see them. It is fun for us all to see
when he responds and is happy. He still has a very
beautiful smile!

It is cold and windy. Poor tulips are taking a beating.
I am ready for spring to re-appear. Hollister and
I like being outside...so it is time for Winter
to go away........

Last night Dick and I went to Ames to see Harry
Conick Jr. Dick and I have always liked to go to
concerts...This was an early Birthday present...
It was fun and Harry Conick Jr. was awesome...

The problem is.....It is really hard for me to have
a good time. I kept thinking of Hollister. I knew
he was fine, but I just felt so guilty...It is hard
to explain...but my heart aches to my soul and
that kind of hurt brings....TEARS, the kind that
don't stop.

Tonight, Harrison will serve Holy Thursday Mass
and tomorrow he will serve Good Friday service.
Hollister and Hillaree always served Holy Thursday
and Good Friday. This makes me proud. I am so
thankful for my kids and how important thier
Faith is to them.

Holy week and Easter makes me a little nervous.
Hollister had his second stroke on Holy Thursday
2002. We were getting ready to go to Mass and
he started seizing...Dick and the kids went to
mass...and Hollister to Blank Childrens.....

Certainly a time to re-flect......

Team Tough continue to need you thoughts and
Prayers...

Friday, March 30, 2007 1:52 PM CDT

Happy Friday....

Hollister continues to try a popsicle and a
bite or two of yogurt. I will continue to introduce
a few new things. He certainly has been more alert
this week.

I worry that Hollister is having some headaches
or pain in his left head...Not sure what to do.
It makes it hard to know what to do...knowing
that we don't have a geneticist at the Mayo Clinic.
This disease truly stinks....when you can't find
Doctors......Puts so much on us...to take care of
him...CRAZY!!!

Hollister is lucky to have an awesome Cardiologist,
right here in town...Hollis saw him today. He said
the fluid is still behind the heart...He is puzzled.
Not sure why it is there or why it happened in the
first place...Totally not related to the MELAS...
We will see him for a recheck in a couple months.

Monday, the kids and I drove to Mason City to be
with Mom for her Chemo and radiation appointments.
It was good for the kids to see what is going on.
I think she liked the company.
Hollister slept the whole way there, he slept in
the lobby on a couch, and he slept the whole way
home. He woke up after we got home. I am not sure
he knew he was out of the house..ha..

Hillaree drove home from Mason City. She passed her
drivers eduacation. She does a good job. She really
wants a school permit. She even brought home all the
paperwork signed and ready to go....We will be
thinking about that one..ha

Harrison started his spring soccer season on
Monday. He is very excited. They have games this
weekend. On Sunday, they will be playing in Omaha.
He also started track practice. He really enjoys
track. He takes it all very serious. Not sure where
he gets that...ha

Hollister did OK during therapy this week. Nothing to
get excited about. I really want him to do more.
I saw Bob Woodriff (the ABC anchor with the TBI,
the traumatic brain injury) on TV talking about his
recovery.....I wish Hollister with his brain injury
could get that kind of help...but.....
His wife Lee showed a Clutch Cross...a cross that is
used with TBI patients who continually fist their
hands....Hollister keeps that left hand in a tight
fist most of the time...and this is from the TBI...
My sister Jerri was able to find one on the inernet...
and Hollister now has a Clutch Cross or Palm Cross.
It truly does relax that hand. It is a good thing!

I find myself so lost and lonely as time marches
forward. The last year took so much from Hollister
and I miss him so much. As May first closes in....
I can't help but think that was his last good day...
Who knew....
I wait anxiously for a word, a look, or a touch.
I am hopeful that day is just around the corner!

Team Tough is strong and will continue to fight the
good fight!

Team Tough:
A successful team beats with one heart.

Sunday, March 25, 2007 11:17 PM CDT

Spring Break is over and back to school...
Hillaree has another day off tomorrow.
(an extra day for pancake ticket sales....)

The weather has been great. Today it was in the
80's. Doesn't get any better than that!

Hillaree had a great time on her FIA. She met
lots of new friends and had a great time. So
much can be learned from Hillaree and her kind
heart. She is a good steward.

Harrison kept busy with his social activities.
He and his friends had a good time. The only
thing that slowed him down was the rain.
But it didn't rain much all weekend..Yeah!!

Hollister didn't have any therapy. Tuesday was
cancelled and Thursday he only had OT, so the
kids and I took Hollister to Target. It was fun
and Hollister seemed to enjoy himself.

Friday, the kids and I tagged along with Dick.
He was working in Algona so we went to see my
Mom and Dad. We hadn't seen Mom since she
started her treatment. She looks good. It was nice
to see how hard she is fighting. Team tough in
action.

Saturday, we took the kids to see the TMNT Movie.
(The Ninja Turtle Movie). The Ninja Turtles were
very new when Hollister was very small and he loved
them. He spent more time as Leonardo than Hollister.
He didn't make it through the whole movie, Dick and
I had to take him out as he was very loud. I know he
would have wanted to see it. I thought for sure the
Turtles could help bring Hollister back.
I couldn't help but remember the first time Dick and
I took him to the Ninja Turtle Movie(which was a
much better movie). He was 2 years old and Dick and
I took him to a lot of movies. He has always loved
the movies. Anyway back to the Turtles.... He was
sitting between Dick and I...eating his popcorn, eyes
glued to the screen...and Dick started asking him
if he had to go to the toliet...(at every movie, he
would have to pee during the best part)...so...
Dick kept bugging him and asking him if he had to pee...
and to our amazement he made it the entire movie
without a trip to the toliet.... We laughed so hard.
It was truly a happy day....I really miss my boy.

Harrison started riding Hollister's bike. I know it
is alright but why does it hurt so bad. We got him
that bike around the time he got sick. He always loved
to ride his bike. He did get to ride it but it still
looks very new, so obviously not enough.

Big news here tonight....
Hollister ate 1 and 1/2 popsicles tonight. It was
amazing. It was hot today and I noticed him licking
his lips...so...I thought I would try a bite or two
with a spoon...and the next thing I knew...He was
chewing...I am thrilled.

God is Good all of the time....
I am thankful for all the little steps....

Wednesday, March 21, 2007 12:41 AM CDT

Spring has Sprung...

and rain drops keep falling on my head!

Suppose to be rainy and stromy until after the
weekend.

Spring is when you feel like whistling even
with a shoe full of slush.”
Doug Larson

The good news is that the grass is already starting
to turn green...The tulips and daffidils are up.
Spring truly has arrived!

The kids have been busy during their spring break.

Hillaree spent, Sunday through tonight with the
FIA(faith in action). It is volunter retreat. Lots
of work and prayer with a group of young people.
I did talk to her last night and they were out in
the rain. Sounded like they were having a great time.
I am always so proud of the choices she makes.
Not everyone choses to give up their free time to
help someone else... They were helping with
Habit for humanity, at a long term care facility, and
at a shelter..Lots of good being done.

Harrison is busy being a boy. He has baseball
practice and spending time with his friends...Lots
of things to do. He is busy. Everyday, he tries
to spend his time with Mom, but never fails a better
offer comes along..ha

Saturday night, Dick and I took Hollister to a movie.
He didn't do to bad. I had to take him out for a
while. He likes to talk and talk and talk...Then he
took a short nap. I am not sure, he realized that
he was at the movies...but we like to try to get him
out.

Hollister is still not himself. I have been running
IV fluid at night. I like to think that it may
be helping him. He keeps grabbing the left side of
his head. I fear he may be suffering for a terrible
headache. I have been giving him tylenol and motrin.
I am hopeful that it lessens his pain....
He has had some horrible nights. Not much sleep.
He thrashes about something terribly. Of course,
he has been very sleepy during the day and evening.
He still sleeps now, from about 6am this morning.

Therapy was cancelled yesterday. I was very sad.
He was up and showered, ready to go. They called
as we were about to walk out the door. So, we
stayed home.

I really like spring. Spring always bring new hope.
I am renewed with hope that Hollister is going to
improve. Hollister is amazing and he is working hard
on coming back to me.

“Spring is nature's way of saying,
"Let's party!"” Robin Williams

Saturday, March 17, 2007 11:48 AM CDT

HAPPY ST. PATRICK'S DAY!!!!!

Only Irish coffee provides in a single glass all four essential food groups:
Alcohol, Caffeine, Sugar, and Fat. Alex Levine

Harrison made sure he slept in his ST.Patricks day
boxers last night,he did not want to get pinched first
thing in the morning...I thought that was a good
idea and put Hollister's on him..ha

Hollister when he was little liked to leave the
messages on the answering machine. This was not
always an easy task..but the end result was
usually worth it...
I remember his St. Patrick's message, I can hear
it in my mind...and makes me smile...Sometimes I
left it on all spring!

"Happy St. Patrick's Day, To all my Irish brothers,
You've reached the O'Farrell Home, we're more Irish
than the others......"

Harrison is off this morning with the McCarthy's,
to the parade downtown. They are gracious enough
to let Harrison tag along with them. Fortunately,
Harrison loves being Irish and looks forward to this
day. Thanks to the Friendly Sons of St. Patrick, they
organize the parade( and the fun afterwards!) The
Friendly Sons of St. Patrick have done some amazing
things for Hollister and us. The Irish are very
generous!!! Thanks again to ALL the McCarthy Family!

We did have hopes of taking Hollister to the Parade
but apparently Mother Nature is not Irish. We woke
up to the ground covered in snow. Crazy spring snow...
Instead, we will wait to hear about the festivities
from Harrison.

Hollister unfortunately is struggling. Hard to know
exactly what is going on. Last night, I decided to
run some IV fluid. (I am thankful he still has that
PICC line) He had a rough night and is sitting in the
chair now. He is resting. His color looks a little
better. I am wondering if for some reason his brain
needs a little extra sugar...IV kind...That is why I
used to run all the IV's before...So, we will see
how the day goes. On this day of Irish Luck...
Today will be the day!

Happy St. Patricks day!
From the O'Farrell's

May your troubles be less
And your blessings be more.
And nothing but happiness
Come through your door."
Irish Blessing

Friday, March 16, 2007 10:17 AM CDT

SPRING BREAK has started!
Hillaree and Harrison don't have school.
Obviously, we are staying home. It would be way too
difficult to travel with Hollister at this time. Maybe next
year.

Therapy yesterday was a little disappointing..
Hollister is willing to work hard, but his brain is
not cooperating. There is concern that his brain is
getting worse. The stroke could be advancing...
Where, I don't know.
Last August his entire brain was stroke. Here's to a better day today.
Today is the Day!!

Hillaree finished up her drivers education last night.
She passed and now wants to get a school permit. She is
all about driving.

Harrison and his buddy Hubbell started spring break at
O'dark thirty this morning. Dick and I took them to
the 0700 free movie at the IMAX theater. We left the
house at 0600. That is the crazy kind of stuff that
Dick likes to do. It was a good movie, The Bayou
Hurricane. Pretty interesting. No popcorn available.
Hillaree hates the IMAX, so she stayed with Hollister.
She was in charge of finishing his moring feeding
(that starts of 0500). She does a great job with him
and is probably more responsible than most.

Hollister continues to sleep this morning. He is tired.
He would have loved going to the movie so early.
Key word....FREE. He loves anything....FREE...
He always loved the IMAX!

I am excited to have the kids home for the week.
Will be nice to have people around. (I think..)
They have lots of activities planned.

Here's to a great spring break...

Thursday, March 15, 2007 10:14 AM CDT

The Ides of March are upon us.....

Thursday already...

We had a couple of really nice days. The weather was
great. A little taste of spring...Didn't last long
enough, it is cold and dreary again.
Hard to want to put a coat back on!

I survived Hollister's Birthday and my baby did
indeed turn 20! It was a laid back day. When the kids
and Dick got home from all the events of the day...
it was 8:30...So, we did sing to him and eat a
scotch a roo...He looked so happy and I thought I
saw his lips moving when we all sang Happy Birthday!

I really hope and think that he somehow knew it was
his birthday. Everyday I look at him, I talk to him,
I take care of him, and I work with him. This is all
done with the hope that he is responding and
getting better. Even the smallest response or
movements brings praise and cheers.

Therapy continues on Tuesday and Thursday. It is
great the way they work him and stretch him.
It is getting easier getting him there. He tries
to cooperate, when I yell "You have to HELP Mom".
Not sure if he wants to help or if he is afraid of
the tone..ha
Anyway, Hollister and I can get it done and get in
and out of the car.

I spent one morning this week re-reading Christmas
cards and letters that we had recieved. I didn't
realize how many we got. We really do have great
friends and it is awesome to get so many. I noticed
that we have great looking friends with so many
beautiful Children... Once again I am reminded that
God is good.

My Mom is finishing up her FOURTH week of Chemo and
Radiation. I am so proud of her and how hard she
is fighting. She is amazing. Keep fighting the
good fight!!!

Team tough continues to need your thougths and
prayers.

Friday, March 9, 2007 0:00 AM CST

Happy Birthday Hollister..

20...hard to believe.
I can still picture him and what a beautiful
baby he was. He was born with a large bruise
on his cheek(from a forcep)..He looked very
tough...who knew how tough he would need to be.
and then we gave this perfect, healthy, tiny baby
a gianormous name like Hollister..
and what a Hollister he has been...for those who
don't know Hollister is my Mother's madien name.
Learing to spell it was no fun..ha

It is still difficult for me to look at pictures.
So, I have spent the last week thinking...Which
sometimes is more difficult than pictures.
I remember his birthdays and how special we always
tried to make them. His 5th birthday, he woke up
with the chicken pops...and his friend Kirk already
had them, so he got to come over anyway.He stayed
in his Ninja Turtle Jammies all day.

He always liked to take the scotch-a-roos (made
in a Texas shape...) for his treats to school...
(that was when you could make homemade treats...)
and in fourth grade he was so proud...His teacher
Miss Boesen was a diabetic...and she saved her treat.
On the way home..Her sugar got low..and she ate the
scotch-a-roo....and the next day she told Hollis
that he had saved her life...He was so proud to
think his birthday treat saved a life..haha!!!

When he started to give up chocolate for lent,
which his birthday always falls in...He would have
Lemon pie for his birthday, instead of cake.
Who doesn't love the lemon pie!!!

At therapy today, we were laughing about his
birthday last year. We went to the Lion King at
the Civic Center, he really didn't want to go...
but he went to make me happy. And that's all I
have to say about that..ha

Reaching a milestone birthday, I am very curious
to know what Hollister is thinking. I am sure he
would have something very wise and sarcastic about
20...His great dry sense of humor would shine through.
I miss his sense of humor and knowing that he
always had an opinion about everything...

It will be difficult today not taking him to
Hooter's for lunch. But, he hasn't eaten in 10
months..I doubt the first thing he would want is
Hooter's...but then again..I am talking about
Hollister..ha

I find my self very sad and lonesome for my boy.
I am so thankful for all that I have..and knowing
that he is still here with me, and I get to spend
so much time with him...and I do see progress...
small and mighty progress...
But, I am very greedy and I want more...and we
will work hard and have faith that we can get there.
Today's the day..........

Tuesday night, Hollister's PICC line sprung a leak...
Of course it was 10:00 at night. It was time, the
line was placed in October...So Wednesay afternoon,
Hollister and I headed to radiology at Methodist...
On level C (in the basement)..I have a hard time
on Level C...So much happened there this summer..
My heart beats fast and I have shortness of breath,
just being down there. A new one was threaded in
and he did fine.

Harrison's team did indeed win the PeeWee
Championship game. It was a very good game. Both
teams played very well. Harrison played an awesome
game. We took Hollister to the game. Lots of emotions
(again) as we watched Harrison. I couldn't help but
think of all the games and Championships that
Hollister skated in and Harrison watched....
Lots of quiet tears....I am so proud of both of my
Hockey players...

Not sure how we are celebrating his birthday.
I do know, I am making a Texas shaped Scotch-
a-roo. What ever we do, we will Celebrate 20...
and we will have a good time.

So today on Hollister's birhtday...
I thank God for him and the priviledge of being
his Mom. The last 20 years he has given me
so many opportunities to live, love, learn and laugh!

Happy Birhtday Hollister,
Here's to you...

Sunday, March 4, 2007 8:38 PM CST

Last week the weather certainly took charge of the
city...and state. Rain, ice, snow, and WIND!!!
The kids got out of school at 11:30 and 11:45
on Thursday..and school was cancelled on Friday.
That doesn't happen very often, so the kids were
thrilled.
Hollister's therapy was cancelled on Thursday..
No therapy last week for Hollister. I hate for that
to happen..
Harrison and Hillaree have had a good time playing
out in the snow.
Grandpa was snowed in with us Thursday and
Friday...Lucky him...No peace and quiet for
Grandpa.. He was able to get home Saturday
afternoon. A 2 hour drive took him almost
5.....Ice, and Blowing snow.....
Grandma got stuck in Mason City, but she made it
to all of her radiation appointments, she got
home on Friday afternoon.

Hollister is certainly getting stronger. I have
been able to do some "therapy" like things at
home. He continues to work very hard. He likes to
stand..I wonder what goes through his mind...
I am hopeful, that he is trying to remember even the smallest thing...
I like to think that maybe
something that I do or say will spark something big!!!
His favorite word lately is SHE! During his recovery
from other strokes..."SHE" was generally used
to talk about something I have done...usually
something Hollister thought to be offensive...
"She" brought me here..(to the hospital for an
admission or even therapy)..."She" made me wear
this..."She" did it...."She" made me eat this...
"She" won't let me go..."She"......
So, I am very optimistic to hear...SHE!

Harrison is winding down with Hockey...The City
Tournament started this weekend...And Harrison's
team started play Saturday..They were in first
place...They won both games...and Harrison is a
goal scoring machine...They will play Thursday
night for the championship...The Flyers have had
a good season with a good coach...

Hillaree had her conference swim meet cancelled on
Friday...This is with her Club team. She is anxious
to get it finished..as she started track a few
weeks ago. High school is a very busy time.

Another week lies ahead. It is suppose to be 50 degrees
by Friday...It is time for Frosty the snowman to
go home!!!

Team Tough needs all your continued thoughts and
prayers...So much lies ahead!

Only 5 days until Hollister's 20th Birthday...
Hard to believe he is not going to be a teenager...
It is going to be a difficult time for me....Too much to think about!
I am very thankful that he is here in person to
celebrate his birthday...

God is ABLE!!!!

********************************************************************************
"For I know the plans I have for you,"
declares the Lord,
"Plans to prosper you and not to harm you,
to give you hope and a future."
JEREMIAH 29:11 NIV

Tuesday, February 27, 2007 9:05 AM CST

The kids didn't have school last Thursday and
Friday.
We were hoping to drive up to Algona to see Mom and
Dad for a day or two....but the weather had other
plans for us.
Oh, what weather it was...

On Friday morning, the car was loaded and Hollister
was up and in the car and he was happy.
So, we drove around Des Moines at 0830 in the morning
trying to decide what to do. The rain, ice and snow
hadn't started...so we decided since Hollister was
up for the day and ready to go, that we would drive
over to Williamsburg(to the outlet mall)....
and Hillaree drove us there on Interstate 80...She
did a great job, apparently all the driver's Ed has
paid off..ha
That was the first time in a year that Hollister
and I have been somewhere. (I know we did drive to
Aunt Judy's a couple of weeks ago.)
We called Jamie in Crap City and she came and ate
lunch with us. It was starting to get cold so
for the most part Hollister, Jamie and I sat in the
car. Hillaree and Harrison and his friend Hubbell had
fun going from store to store.
We were back home from our big adventure around 4:30.
Hollister and I were both tired. It was a good tired!

The weather Saturday and Sunday was no fun. We lost
a very large branch off our big tree out back, and
of course it fell on my lilac bushes...not good...
and our little trees that we planted about 5 years
ago...They don't look very promising....
But, we didn't loose our power! Everything that
Hollister uses needs electricity..Not to mention
heat!
Another round of nasty rain-ice-snow is on its way...
I am ready for spring!

Yesterday, Hollister was quiet and tired. Harrison
didn't have school again yesterday, teacher workday...
So, I had good help at home. Hollister seemed weak
when we stood with him or moved him....
Then....about 6pm....he had a seizure..Harrison and
I had just moved him and WHAM......We got him back on
the couch, and I gave him as many of his seizure meds
that I could and started and IV.....
(Dick's last appointment of the day had canceled, so
he was at home! funny how things work out!)
We watched him all night, he was a little goofy...
but no more seizures. That is 2, in
a couple of weeks...They need to stop!
He sleeps this morning, he still has the IV going and
we did give him his 5am feeding, and he did OK....
There never can be a feeling of security....
I know we are nervous as his brain cannot take a whole
lot!!!

My Mom continues to need your prayers...
She has been diagnosed with Lung Cancer, stage 3.
Last week, she started the Chemo and radiation.
She has Chemo on Mondays and radiation 5 days
a week.
This has been a tremendous blow to my family. MY
Mom has been a constant supporter for Hollister and
us. I am very sad that I can't be more helpful and
supportive to her right now! My Dad is awesome and
he is taking such good care of her...
The Doctors who are taking care of her have given us
lots of hope and optimisim, and my Mom is part of
TEAM TOUGH...and we are fighters.

The chair that I sit in is not very comfortable. I watch
and wait for Hollister. I sit with him and admire him
and I know how much I love and need him. He is such a
part of who I am. I am ever hopeful that his
brain will find some way to heal and come back to me....
and now, my heart aches for my Mom....She was very sick
when I was five...and I have spent my entire life
thanking God for her.....and now selfishly as usual....
I still need her. I believe that God is good and he
most definetly hears my prayers...(Right Father Kirby)

No more seizures for Hollister...
and Mom's Cancer reacts to the radiation and Chemo....

God is ABLE!!!

"For I know the plans I have for you,"
declares the Lord,
"Plans to prosper you and not to harm you,
to give you hope and a future."
JEREMIAH 29:11 NIV

********************************************************************************

These are some fun Pictures of
Hollister...with all his GIRLS!!!!!

Tuesday, February 20, 2007 5:39 PM CST

FAT TUESDAY!!!!
A day called Fat Tuesday has to be a good one!!!
Today we eat...

I remember when the kids were little, we would
always have a great family dinner on Fat Tuesday.
We would sit around the table and everyone would
talk about what good things we would do during
lent and the things we would give up...
There would be talk of candy, chocolate, pop,
TV, fast food...and what we thought we could live
without.
We would talk of rice bowls and charities that we
could help....and how our prayers could bring us
all closer to God.
I would always give up Broccoli(ha) and
Hollister would always give up Chocolate. Hillaree
this year is giving up Pop, and Harrison is giving
up Meat....
Even a day made up as Fat Tuesday...can make this
Mom think......

We had a quiet weekend. Hillaree and Harrison are
busy with activities and friends. It nice they have
lots to do.

Hollister made it to therapy today. He wasn't at
his best. He talked all the way on the ride to
Blank and them typical to Hollister and his
personality....he was quiet and sleepy.

I wait patiently for his brain to recover. His
team is doing all the right things to help him.
The therapist at Blank are Hollister's biggest
supporters and cheerleaders... They don't give up
on him. They continue to see what I see, a Hollister
who is lost in his brain. His body is strong and
God willing will start to respond!

Please remember to keep my Hollister and my Mom
in your thoughts and prayers.

*************************************
*************************************

Thursday, February 15, 2007 9:56 AM CST

Happy Birthday Dick.
It is always a good day when you can
eat cake.
We wil be celebrating at home.

The week of Dick's birthday 8 years ago is
when Hollister had that first horrible grand mal
seizure. It was on a Saturday night, and Dick and I
had left the kids home ALONE for the first time.
And when we got home...(by the grace of God and the
Holy Spirit...we left Wal Mart)...Hollister was face
down in a waterbed....seizing...vomitting and not
breathing.
From that terrifying moment 8 years ago...our lives
have changed....
It is hard to think......

Winter continues...didn't do much over the weekend.
I hate to take Hollister out. Two days a week for
therapy is enough. He does like to go. He worked
very hard at therapy on Tuesday. I love that his
therapist, expect him to work and won't settle for
less. They get in his face, the same way I do...
He is so tired when therapy is over..He ususally
comes home and naps!

Hillaree started Drivers Ed. this week. Scary.
This is 3 evenings a week. She is wanting us to
get her a school permit to finish out the year..
AHHHHHHH!

Harrison is still busy playing Hockey...He is
having a very good year. He has been a goal
scoring monster!

What I have learned in the last 8 years is life
does go on. I could never have imagined that
1 grand-mal seizure would turn into this.
There are days that I still can't believe all that
Hollister has gone through.
Hollister has also been a great teacher. I have
watched how important life is and how hard a
soul will work to stay here. He has taught me to
live in the today and the now. I know how fun it
is to go to lunch..( I miss lunch now, that he isn't
eating)....and I am thankful for all the days that we
went.
Hollister continues to inspire and teach us. In the
last 8 years he has done more with his life than many
of us will.

Remember to keep Hollister and my Mom in your
thoughts and prayers...

Happy Birthday to Dick....

Friday, February 9, 2007 9:11 AM CST

Friday, hard to believe how fast the weeks go,
when some times the days are so long.

The cold outside is really starting to get to all of
us. It has been bitter. The sun has been shining
the last few days, and this helps. Hollister and I
sit on the back porch and bask in the sun, I am
of course pretending to be somewhere else. I think
if Hollister could talk, he is thinking the same
thing..ha

Last Thursday Hollister and I didn't make it to
therapy, it was just to cold...and I really wanted
to stay in my jammies all day....so we stayed home
and did just that. He was tired...and I was taking
a day off.....

Saturday, we drove up to Judy's. Hollister did well
on the car trip. Dick was able to figure out how to
hang his tube feeding bag and pump, so he could get
his lunch on the way. Worked perfectly, and he
tolerated his "lunch" with all the motion of the
car. It was good!

We ALL met at Judy's for supper. All, means 26 of us.
WOW. We all haven't been together for years. Why....
For us, Hollister has been very sick, in the hospital,
or too weak to travel.
It was good for Mom and Dad to see exactly what they
started 50 years ago...2 was quickly 7(5 kids), and 7
was quickly 26 (in-laws and grandkids....) That is
very frightening.
Hollister did very well. He was happy to see his
cousins and get off the porch! We did stay overnight
at Judy's. It was worth the "hauling" of all of
Hollister's necessities with us.
It was a fun weekend. Mom and Dad had a good time.
And Hillaree won her first Huckley Buck card game.
I think she won about $3.00. I quickly asked for a
loan!

Hollister did make it to therapy both days this week.
Tuesday, he did Ok. He was tired. He waits to vocalize
after Linse(SPT) walks away. Thursday, he did great.
He worked very hard for Karen and Robin. He walked
farther in the Pacer, than he ever had. It was GOOD!

Thanks to Aunt Jerri, Hollister has his own therapy
mat at home. I can get him to the floor and stretch
him. Aunt Judy had a peanut ball, like a Yoga ball
shaped like a peanut. He uses one at Therapy. So, we
now have a peanut ball to work on at home...I am
very hopeful, that I will be able to help Hollis get
stronger.

We are Team Tough and we are determined to work.
Hollister is in uncharted waters, no Doctor, nurse,
specialists or anyone can tell us what is going to
happen with him next. His disease process is difficult
and at best UNKNOWN!
Team Tough continues each day, with the dignity and
grace of God that.....
Today is the day......
and we pray each night, that God is good...and the
brain swelling will start to diminish....

Continue to hold my Mom close to your hearts. She has
one more test today...My Mom has always been tough.

Friday, February 2, 2007 8:42 AM CST

February already.

I have had a couple of rough days.

Last week, my friend Kathy, who I have known since
we were 5(so not that long)..haha
Her Dad died. He was fighter for the last 12 years or
so, and reminded us all how important life must truly
be. There is something worth hanging onto. It is
difficult to imagine at 42 years old both of her
parents are gone. God speed Larry.....

Dick and I were able to attend the funeral, which
was not far from the my sister Judy's and Mom and
Dad's...So....this was our first big outing with
Hollister. We had to take him with us. He stayed at
Judy's during the service, and then we went to Mom
and Dad's for the afternoon.
He did surprising well, I think he was excited to be
off the back porch and out of the house. He did alright.
Very encouraging...
It is hard to believe all the goodies that Hollister
needed. Had the car packed tight...ha Supplies,
Supplies, Supplies...

I had forgotten how much different the weather can
be just 2 hours north of here. Ground Blizzard......
I guess I am now a Townie...Out in the country
everything is different, even with just a little
snow...

Hollister had his cardiac appointment on Tuesday.
His heart looks fine. The fluid that is around his
heart from last August is still there. We will
recheck that in about 6 weeks to see what is going
on.

Please add my mom(JoAnne) to your daily thoughts and
prayers. She has been feeling "Crappy" since
before Christmas...She has been undergoing a
battery of tests. We are all very worried and
concerned. My heart aches............

Thursday, January 25, 2007 4:45 PM CST

It certainly is January..
It is cold and going to get colder.
Not looking forward to that!

Hillaree made it home safe and sound. My little
protester had so much to share. It sounds like an
awesome adventure. Only one "little" bus accident in
Washington D.C. I am very proud of her.

My friend Chris that I have worked with for many years..
always says....
"Somedays you eat the bear
and somedays the Bear eats you!"
I know somewhere, sometime ago I may have written
that...
But this is one of those weeks where I feel like the
bear is winning!
Tuesday, I took Hollister in to Blank for therapy...
and he was very obstinant and wouldn't do a thing!
He was having a hard time holding his head up and
keeping his eyes open.
In my mind all I could think was...AHHHHHHHHH!!!!

At home, the "Bear" certainly has the advantage!
I am blaming it on "Cabin Fever", I have been
asking myself a whole of WHYs that truly have no
answers.... Why did Hollister get sick, why hasn't
he gotten better, Why did he get so sick last May,
What changed... Why haven't they hired a Metabolic
genticist at the Mayo Clinic(For Goodness sake it is
the Mayo Clinic)Why didn't we get the house done
before Hollister got sick, why don't we have an
attached garage, Why don't they have more game shows
on during the day, Why is the laundry pile
never ending, Why can't our insurance figure out
Hollister is sick....The list goes on and on!!!

And something good...
Before and on the way to Therapy today. I gave
Hollister the you have to work harder speech.
(Over the last 5 years, I have repeated this many
times)...and he worked hard. I am proud and happy.
He interacted with the therapist and he walked a
long way in the Pacer. He was tired and feel asleep
on the way home. He is resting now, a much deserved
rest.
So Take that Mr. Bear....
Bear 0 Hollister 1

As the week closes, I am reminded that no answers will
come. The only answer is that I am the luckiest Mom
I know. And I know if I keep my eyes
wide open, Hollister will continue to come back to me!

Monday, January 22, 2007 9:34 AM CST

Two weekends in a row, snow...it is very pretty and
fresh outside. Snow is what makes January look good.
Not bad, winter arrives halfway through January...
Soon, it will be March.

The snow makes it much more challenging for me to
get Hollister to therapy....Wheelchairs and snow and
ice do not mix...We have learned this the very hard
way...ha

The last week, I have had two "patients" to take care...
Hooch had to have a growth taken out of his eye....the
"tumor" had to be sent to Iowa State to have the
pathology done...He also had some dental work done..
Apparently, chewing on sticks and rocks is hard on
even a dogs teeth...ha It looked like a cyst to this
surgery nurse...
So he has been very tired, cranky, and liking the
treats with his anitbiotics....

Hillaree, is in Washington D.C. She left on a bus
on Saturday... Seventeen kids from Dowling made the
trip. She is there for the Right to Life Rally,
and will be Marching at Noon today. I am so
very proud of her. I am certain this will have a
huge impact on her life.
Our house seems very empty with out her here.

My anxiety and emotions can get the best of me,
any time or any place. Last Saturday, at Harrison's
Hockey game..I was sitting by myself(sometimes, it is
just to hard to be around so many people).....
enjoying the game lost in my thoughts...
When, a man and a toddler..(a little blonde haired boy)
with a winter coat, jeans and boots on....and
he stood on a bucket next to the glass so he could see
his brother playing Hockey...and he was eating a
sprinkle donut....
It was too much...
I was lost....I couldn't stop the tears.....
There were so many Hockey games that Hollister
played and his siblings were the little ones standing
on the buckets and eating the sprinkle donuts...
My eyes continue to leak...
and my heart continues to ache...

Hollister worked so hard at therapy last Thursday..
We were all cheering. He walked in the Pacer(which
is like a big walker)....and he walked a long
way. He just took off. He is very happy to be back
at Blank Therapy with his Team. They have never
given up on him. Even the littlest thing is so
positive...and they work him hard...
Again my heart swells.

Hollister continues to talk. He found his voice and
he is using it. Occassionally, a word or two will
come out...I am happy to hear it, not so much in the
middle of the night...ha ha....
The ability to vocalize gives them something to
work on in therapy....yeah.

Hollister continues to be my hero, as he sits
with me day after day(listening to me talk and talk and talk)......
I long for the day when he gets up and walks away from me!

Tuesday, January 9, 2007 7:31 PM CST

Hard to believe it is the 9th already....
2007 is off and running...

Last Tuesday was the big day that Hollister has
been waiting for.. He started back at Blank for
therapy.....YEAH...
He is back working with "his" team... It felt like
we were home. Hollister is going to Blank for therapy
on Tuesday and Thursday afternoons. It is a nice start.
It was very obvious that he knew where he was.
Hollister works very hard. His progress is slow
but appreciated by all.
Today, was the first day that Hollister and I went
by ourselves. We did OK. I was able to get him in
and out of the van and to therapy on time....I was
as tired as he was...ha

Last Wednesday, Hillaree and Harrison went back to
school. Hard to believe how fast Christmas went. I
really like having the kids at home. It has been
very quiet with them gone all day. Hollister probably
misses them also, as I talk to him all day long...

Judy and her family were here over the weekend.
Jamie came on Wednesday and left on Monday. It was
fun spending time together over the weekend.
Friday night, we ate Hooter's wings...I wasn't
sure...but we went ahead..It was hard to go there
without him, even to pick wings up...I know he
had to smell them in the house, he seemed sad....

Saturday night,it was great to see Hollister at
the table with everyone. He was very happy and
smiling. He wasn't playing but he liked all the
action at the table. He always loved playing cards
and dice....
It is difficult on all of us, that Hollister isn't
able to enjoy all he used to...Makes us sad to
think of the times we didn't take advantage of....
and now it is gone.

Jamie and I took Hollister to lunch yesterday at
his favorite Chinese place..He ate a couple bites
of soup....but sat at the table with us. I am
hopeful that he will recognize something...

Hollister continues to amaze me. He is getting
stronger everyday. I am ever hopeful.......

Team Tough continues to need all of the thoughts
and prayers we can get.

I tell Hollister every morning and night that
"Today is the day"....I believe that with my
heart and soul.....

Today is the day!

Monday, January 1, 2007 12:10 AM CST

Happy New Year....

Harrison and his friend Brody are on the front
porch blowing horns and waving noise makes...
We are all up...and we waited anxiously for the ball
to drop...I hope Hollister understands that 2006 is
over and 2007 has started....

Hillaree and her friends are having a party... For some
reason she didn't want to celebrate with her parents..ha ha

We had a nice New Years eve...Had lots of good food
and company.. We played a few games of LCR dice...
Tried very hard to have Hollister at the table with
us...He loves that game..But he wasn't interested...
Makes me very sad! I want nothing more than to
see him participate or say something smart....

It finally snowed...
was suppose to miss us, but we have a nice covering...
Snow....a week late, but it looks very pretty outside...
Now it can melt and winter be over!!!!

When I look back on 2006...I am sure I will not want
to remember it fondly...
I thought we had made it through the winter months...
and Hollister was fighting the good fight...It is
amazing to me how fast that can change...May 1st is
the day everything seemed to change, and it happened
so fast...
The next 115 days were an absolute nightmare....
Those 115 days cost over $750,000....I can't even
begin to comprehend what "our" share will be...(
Hollister lost so much in those days....I am so sad
and hurt by all that went wrong.
115 days in the hospital certainly isn't a record
for Hollister, but they may have been the most
damaging....

Dick again, changed jobs...AHHHHH...of course this
was all going on when Hollister was so sick...
He is now working for Metlife (Has to be good as Snoopy
is in all the advertising...and I love Snoopy)..This certainly has
been a good change. He passed all the tests he had
to take, Life, health and Securites..
He really likes his job and they weren't
afraid to hire him knowing Hollister was sick and in
the hospital..Metlife went out of their way to help Dick...

Dick also faced the deaths of his brother Bob and
his grandmother Minnie.

Hillaree made her confirmation, graduated the 8th
grade...got her drivers permit...played high school
softball, swam on the JV swim team....and started
high school, and she got her braces off her teeth...
She has grown up right before my very eyes....

Harrison had a busy year also...He finished elementary
school, and started junior high this fall. Last spring
future problem solvers made it to state. His mock trial
team finished 8th out of 200 teams...His football team
won 1st place...and made it to the spelling bee...

When I remember all that is good, I realize there is
so much to be thankful for. I am amazed by all the
kindnesses that have been shown to us. It is truly
incredible...The food, the gifts, the cash, the
meals, the gift cards, the ramp, the cards
and letters, the visits... I am so taken back and speechless by
so much by so many....It reminds me of all the good
that is out there....

The new year symbolizes such hope for what lies
ahead...I believe that something great lies ahead for Team Tough!!!

I want nothing more this year, than for him to wake
up and be Hollister! Seems reasonable!!!!

Happy New Year...
Here's to all that 2007 has to offer!

Friday, December 29, 2006 10:03 AM CST

Hard to believe Christmas is over and it is almost
the New Year...
I hate to ask...Where does the time go.

The kids have been busy and enjoying their break
from school. They have only had to clean their
rooms once..ha ha I love having Hillaree and
Harrison home, friends are over and the house seems
so alive..It has been good for Hollister and me....

Tuesday night, we took Hollister to a movie...It was
not to be. Hollister and Dick ended up sitting in the
lobby. Hollister was in a very chatty mood. He lasted
through half of it...The manager at the Carmike, offered
Dick two tickets to come see another movie...Nice.

He has done some therapy this week and he has slept
through some therapy! He continues to be strong but
he won't walk. Not sure why...Hopefully, he will
change his mind soon and start moving his feet.

I hold on to the hope that Hollister will contnue
to wake up more and more..and his brain will have
rested and one day...He will shout....MOM.......
I believe it is coming......

As the New Year approaches, I again am filled with
lots of emotions....I am optimistic that 2007 will
be a good year...2006 was almost as bad as it can
get....
We try and try.

Our Candy Cane tinsel tree remains very sparkly!

Cheers to a new year and another chance for us to
get it right. ~Oprah Winfrey

Monday, December 25, 2006 11:15 PM CST

MERRY CHRISTMAS!!!!

Oh what a Christmas it has been..

I have always hated when Christmas is over...
I really do love Christmas. I like all that it
represents....most of all, I like the "spirit"
that overtakes us all for a short time to become
kinder, gentler people...

For me this year, it has been a difficult Christmas.
Our tree with it candy canes and tinsel still sparkles.
It is as pretty as any tree...It made it much easier
not to have to look to far back. I continue to live
one ornament or picture away from heartache and
crying...

Saturday night, we did indeed get Hollister to a
movie. We saw the Santa Claus 3...It was fun to be
out as a family...After the movie we drove through
the Jolly Holiday lights...What fun..We love the
Make-a-Wish program..Hard not to be grateful,
thinking of our Trip to Alaska...Fun...
Hollister tolerated the outing with no problem...

Christmas Eve...we stayed close to home. We had
lots of visitors. It was fun to visit with all of
you. Thank you for all the goodies and baskets of
treats...We were lucky to have so many Santa's
who did so much for us...Our Christmas was awesome,
because of so many.....You don't have to try and
convince us that Santa us real...WE BELIEVE!!!!!!

I did make it to Midnight Mass on Christmas Eve..
It was a difficult decision to make to go without
Hollister. My Mom and Dad and Hillaree(she had gone
to 5pm Mass) stayed with Hollister. It was hard for
me watching Harrison serve mass not to think of the
years that Hollister and Hillaree so proudly stood
on that Alter on Christmas Eve...Hollister always
got a little nauseous with the incense, and Harrison
looked like he was close...
Hollister loved Midnight mass, he really liked when
he thought he was old enough to go and stay awake...
Made me sad to sit there without him.....

We made the decision this morning to open gifts
without Hollister as he was sleeping in.. This
was difficult....He was up in the night, we were
watching for Santa...He must have crept in as
we dozed...

It was beautiful to have Hollister sit at the
Christmas dinner table with us..He did eat a bite
of Jello or two...but wasn't interested in the rest.
It was truly what I hoped for...All of us at one
table...What a gift...

Hollister opened his gifts(with the help of his
brother and sister) after lunch..It was nice to
see his beautiful smile....

It was a Christmas day filled with lots on new
happy memories. Hollister is a miracle and we here
in this house, hold him close to our hearts.
It is hard not to believe when we live so close to it.

It is finally quiet in the house...Kids are
watching movies...Dick and Hollister are sleeping,
and Hooch dog is nussled quietly in his bed....

It has been a very good Christmas....
Better, than I hoped this year could be...

Merry Christmas to all, and to all a good night!

Christmas… that magic blanket that wraps itself
about us, that something so intangible that it is
like a fragrance. It may weave a spell of nostalgia.
Christmas may be a day of feasting, or of prayer,
but always it will be a day of remembrance --
a day in which we think of everything we have
ever loved. Augusta E. Rundel

Saturday, December 23, 2006 0:15 AM CST

Christmas is closing in ready or not.

We will be finishing our shopping tomorrow.
Hopefully, Dick and I can get it done in the
morning....We will get done what we can.

Today was a day filled with Lofty goals....

Today, we were able to get out this afternoon,
as Aunt Jerri took the kids shopping as she
does every year. After Hollister's shower, we
were getting him dressed in jeans(which are getting
tight....)and a sweatshirt...and he knew he was
going out, he was so excited...It was incredible.
He tolerated the trip to the mall and even drank
some coke...
He was exhausted when he got home...
After a very short catnap...
We took him to the Iowa Stars Hockey game...
He did great. He sat in the wheelchair the entire
time. He stayed awake and was smiling and laughing..
It couldn't have been better....
His very best buddy, Ciara( she is almost five and
they have done therapy together for years...)..
She was there also and sitting in the handicapp
seating...right next to us...They have a wonderful
relationship...he came to life just to hear her
voice...

He had a very happy day...It does all our hearts
good to see him so animated....
God is Good...all of the time....

He was exhausted when we got home...
He went right to sleep...
I pushed his meds and extra water and he
didn't care much...Hopefully, he will have a
restful night...

Tomorrow, we would like to take the kids to see
a movie in the afternoon, that would be my lofty
goal for the day....

Today was some kind of day....busy and enjoyable.
and my goals were met and surpassed...YEAH

Hillaree and Harrison keep asking me what I want
for Christmas.....

I feel like I have been give so much already....
It is Christmas, and my family is still intact...
Not perfect, but very much here...

I tell them I want nothing more than for the health
of my three children...I want Hillaree and Harrison
to continue to enjoy perfect health...It can change
in a minute....
and for Hollister, I want more...I want continued
improvement and recovery...I want him to walk and
talk and to have cognitive thought...

They have a hard time understanding....
and those gifts are difficult to wrap...ha

We will be speeding a very quiet and relaxed
Christmas Eve and Christmas day at home...

As we finish our shopping, wrapping, and
preparations...I hope that we can keep the
spirit alive...and
Remember, that....
JESUS IS THE REASON FOR THE SEASON....

Wednesday, December 20, 2006 2:45 PM CST

Rain drops keep falling on my head...
Hard to imagine...rain and 5 days to Christmas...

This afternoon, Hollister rests on the couch, he
looks very cozy...

Today is the last day of school, Christmas break
is starting. Hillaree finished her first high school
final around 11:00....She came home excited to know
she was done...grades to follow. Harrison will be
finished at 3:15...He will be home soon. They get 2
weeks off. Hard to believe all the fun of Christmas
and New Year's will be over in 2 weeks.

Hollister has had a couple of busy days..Therapy...
He continues to work hard. He is moving his left
hand a little more and he continues to try and
talk. At times he has a lot to say. I am so anxious
to understand what he is definetly trying to get
across.
Yesterday, during Speech therapy, he drank some
Hot Chocolate. I was very excited. When he wakes up
from his nap, I am going to see if I can get him to
drink some. Keep your fingers crossed.

Our plans for Christmas are very simple...We will be
at home. No big plans or gatherings. Dick and I are
thrilled to have our family intact for Christmas.
There have been many days this year, that it didn't
look like that could happen. Hollister is here and
we are thank-ful...God is good....
Hollister has a spirit that is kind and pure. He
continues to lead us.

Love is what's in the room with you at Christmas
if you stop opening presents
and listen. ~Author unknown

Sunday, December 17, 2006 11:16 PM CST

1 Week and counting...

Friday, we were able to take Hollister to the
Candlelighting ceremony at Dowling Catholic
High School. It was so nice to take him back to
the school. It had been a while since he had been
there. When we were getting him out of the car,
he was smiling a huge smile. He was very happy.
As usual, Dowling is a class act. The seniors led
the school in the annual Christmas baskets...
This year, they provided Christmas for 42 famies...
The Christmas music, the baskets, old friends...
it was a very emotional outing for me...and
having Hollister sitting next to me....it was almost
too much for this "old" Mom.
It was awesome!

Dick did get a Christmas tree on Friday night...
The hours passed and no decorations....
Saturday.....no decorations....
So, today...Dick and I decided that we were
dragging our feet...because neither one of us
wanted to confort all those memories. We are both
having a tough time with Christmas.
So, we talked with Hillaree and Harrison about
doing something different with our tree.
A trip to the store, lights and tree decorations
in hand....the process had began...
We have a beautifully decorated tree with candy
canes and tinsel...and it is beautiful....
Unusual...but pretty...
So Christmas can came as expected....ha
Oh yeah...Shopping....
We still have 7 days..no rush...ha

We are all so thankful and Happy that Hollister is
with us this Christmas. We have not forgotten what
a miracle this is. We continue to thank God for the
time he is giving us...but we also pray for more and
continued healing.
We hope that all of you continue to hold Hollister
close to your hearts and in your prayers.

There is still a week before Christmas....
All of you on the naughty list still has some time...
(and you do know who you are...ha)

You know you're getting old,
when Santa starts looking younger.
- Robert Paul

Thursday, December 14, 2006 9:34 AM CST

Here it is December 14....
and the sun is shining and the temperature
is headed to 60 today...
Unreal...
We are all dreaming of a white Christmas...

I am not complaining. It is nice to take Hollister
outside..Yesterday, he was very WHINY....
Reminded me, how we used to call him...
Hollis-whiner when he was small...ha

I am hoping to get him outside before the
therapist gets here, and he could work outside.
I am sure he will be thrilled.....

He is awake now and ready to get up. He has been awake
for some time this morning..He slept in yesterday, no
therapy. He didn't actually get up until 3....So, he
should be good and rested today, and hopefully...
ready to go.
I am ready for him to work hard, Maybee even take a
few steps..He hasn't taken any steps for weeks now.
He just won't budge his feet. Not sure why.
He is strong and certainly capable...
Hard to know what is going on in his brain...
It has been so injured that it is anyone's guess..

I remain optimistic that some recovery is still
ahead. He has already done so much, but I know
he is very capable of doing more!!!

Only 11 days until the fat man in red suit comes...

What do you call someone who is afraid of Santa Claus???

CLAUSTROPHOBIC.....

hahaha

Tuesday, December 12, 2006 8:56 AM CST

Hard to believe it is December 12th...
Less than two weeks to Christmas!!!
and...
No tree, no decorations, no cookies baked and
no presents bought...to be quite honest...
not a lot of Christmas spirit....
and no snow...
Not sure what is going on in this house..
I am hopeful, that The Christmas spirit finds
its way deep in our hearts....soon....

Hollister had a great day on Friday...
He was very impressive. It is hard to explain all
that went well.. The improvements are small, and to
some would go unnoticed...but to me, they were
GI-NORMOUS and HUGEMONGOUS.....

Saturday, he vomitted all of his meds and morning
feeding...It was nasty....He rested well during the
day, and looked pretty good on Saturday night.

Sunday, I decided to run some IV fluid. He was a
little "urpy"... and he rested...

Yesterday, I keep the fluid running most of the day.
He looked pretty good. He gets a blood draw every
Monday and Friday....Yesterday, we got a call back
from the Nursing service, to make sure he was all
right... His blood sugar was over 650......
I checked it again and it was 122....
He looked fine...

Today is a big therapy day, I think he is having
PT and OT... He is still sleeping. He was wild in
the night. He likes to talk and laugh through the
night. I always remind him, it would be better if
he were like this at 3pm not 3am....ha

Hollister continues to amaze me. I am so thankful for
my time with him. When he smiles and laughs my heart
swells. I try so hard to absorb all of him. He works
and tries so hard. I am so proud of him. He reminds
me everyday what a gift life is.
I wish I could know what he is thinking. There are
so many times when he cries, this breaks my heart.
Sometimes he looks so sad or he looks like he is
lost in his thoughts....
I can't wait for him to talk more....
He must have so much to tell me.
I know, I have a lot to tell him...

I am so thankful that Hollister is home and
will be having Christmas with us. Hollister
makes our family complete. We are grateful for
that. This is Christmas enough for us.

Good news...Tonight the Grinchie is on....
The Grinch who stole Christmas in on TV....
YEAH...

And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'till his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store. What if Christmas, perhaps, means a little bit more.
~ Dr. Seuss

Friday, December 8, 2006 8:18 AM CST

Friday all ready...
and I believe there are Christmas specials on
TV tonight.... Rudolph and Frosty....doesn't get much better.

Hollister had a better day yesterday. He was much
more awake and it was easier for me to move him
around. Now that he weighs about 125...when he isn't
cooperating...he is too heavy for me.

Today will be a busy day for him..speech therapy and
physical therapy...I am curious to see how he will
do. I am hoping he is up and ready to participate...

The consruction in the bathroom in the basement, is
almost finished...We had the shower made into a
"wheely" shower...It will be much easier to get him
in and out. Dick will have to paint and it do a few
cosmetic things...(Dick does a good job painting....
so I would rather he do it.) The tile and the new sink
look nice.

Then it will be time to clean...for a Christmas tree!
hahahaha

What I have recently learned is that no amount of
time can prepare you for life's complicated journey.
I have spent most of life worrying....worrying about
everything and anything...Dick used to say, I could
make up things to worry about.
and now...
I find myself consumed by a life that I can't
recognize...Somedays it is very overwhelming.
I am here and I can't believe this is happening.
It is a far more difficult journey than I ever
imagined. I fear for the day, when this part of
my journey has ended.
and then...
Hollister...I am quickly reminded that this is his
journey..and this is his life...and this is all he
gets...
We both want more............

As Forrest Gump would say..."That's all I have to
say about that"...ha

A reminder to all that Jolly Holiday lights is going
on here in Des Moines...This is a fun way to donate
to Make-A-Wish....Remember, Hollister's wish was to
go to Alaska..and we went in 2003....be generous to
Make-A-Wish...everywhere.

Hoping the Spirit of Christmas continues to fill
your hearts.

Wednesday, December 6, 2006 1:33 PM CST

Happy Feast of St. Nicholas....
Candy for everyone....

Hard to believe it is December.

Just thinking about this month is difficult.
So, much has changed for us the last 5 years....

2001, Hollister got home from Rochester in early
December, new diagnosis....
2002, home, very fragile....
2003, home, but Dick had his car accident and lost
his job right before Christmas...Thanks Sysco.....
2004, very sick at the Mayo Clinic
2005, sick, appointments at the Mayo Clinic lots of
bad news...
2006..........

December is full of emotions....Hard to believe
Christmas is around the corner...I have always
loved everything about Christmas...Hollister and
I have been listening to lots of Christmas music..
He smiles as I sing off key to him...
This year will be extremely difficult. Everything
reminds me of Hollister. Dick and I went to Target
and I cried my way through the store...There is so
much he would enjoy.....
Not sure how I will handle it all...
I am dreading getting out decorations and getting
a tree....Would like to sit on the porch with
Hollister and pretend it isn't Christmas....

Friday, we took the kids to get their Flu shots..
Hollister did great. He looked awesome that day.
We then took them to an early dinner at Applebee's.
This was the first outing for us as a family. Hollister
did well. I was hopeful, he might want to drink or
a bite of something...No such luck...But,he did sit
at the table and was smiling....Yeah..

Saturday night...I felt we had all procrastinated long
enough, and the house wasn't getting cleaned...So,
we decided to try a movie...Hollister has always been
a movie lover....He did fine. He sat in the chair...
and SLEPT..he looked very comfortable...and even
started snoring...We all laughed.

It felt great to get out, I think he liked it also.
Hillaree and Harrison are awesome, they are both
very helpful and very understanding. I am very proud
how they continue to adapt to the changes...I think
they do better than I do....

Sunday, was quiet...Harrison had picked up a "bug"..
So I had to keep him away from Hollister...

Hollister has been weaker and low energy all week.
Not sure what is causing this. Today, He is still
in bed..I have been unable to get him up...Not
interested in straightening out his legs...
Therapy came and went....No such luck...
This makes me nervous and sad.

Here's to more energy and the strenght to get out
of bed..

On this Feast of St. Nicholas...May we all have the
spirit of Christmas in our hearts...

Thursday, November 30, 2006 1:34 PM CST

Boy is it cold out.....
Freezing.....
Hard to believe this is the last day of November.
Hollister has been home from the hospital 3 months....
It is nice to get some distance......

Hollister's headache showed itself on Friday, right
when it was time for Therapy. He was able to sleep it
off....but not a lot of activity.

Saturday and Sunday...Yard work...Fun..
It was nice enough to get Hollister outside..
He was a slacker and did no work, but he was outside.
It was great. Hillaree on both days took him out and
strolled up to Beaverdale. I love that she isn't afraid
to help.

Today, he is being a bum.. He is still in bed. He was
up most of the night. He is awake. He is getting his
lunch, so I will get him up when the tube feeding is
done.

When, I think about all that he has accomplished in
his 3 months at home...I am amazed...I continue to
have faith that good things can happen for him.
He continues to work hard while exhibiting his very
stubborn personality. I am anxious for what is to come.
We will work as hard as we can to get him the best
results.

BUT....
There are times when I can't see past what this
aweful disease means...And Thanksgiving was the start
of some of those times....The tears and heart-ache
continued through Monday...AHHHHH, Nothing and
everything is a moment or memory that sneaks in and
causes my heart to swell and my eyes to leak.....
Can't be stopped and can't be helped.

I never once dreamed that this could happen. That I
would be faced with a terminal illness, especially
my child. It is too big. I guess no one does.....

One this very cold day, I appreciate that Hollister is
at home. He is awake and Hooch dog sleeps at his feet.

Thursday, November 23, 2006 10:57 PM CST

Happy Thanksgiving....

It is great to be home for a Holiday...

It is a beautiful fall day. We have had some
really great days...

We all couldn't help but remember it was a year
ago today, that we took Hollister to Dallas to
see his beloved Cowboys play...
(oh...and to see the Cowboy Cheerleaders....)
The picture above was from that day...How happy
he looks...
I am so thankful that we were able to take him
last year....
A reminder to all of us that life changes.....
It was a fun trip and he had the best time.....

The day started with great hope of all things good.

Started our morning watching the Macy's Parade
( A dream of mine to see it in person....someday!)...
eating Monkey bread....and looking through the
sale ads...

Hollister got up around 11...and was sittting
in his chair in the middle of all the activity....
It didn't take long for us to realize the day we
hoped for wasn't to be....

Hollister started screaming and pounding his head...
he was crying......
What I dread most...

PAIN!!!!
My heart broke...

He was thrashing about and pounding his left
occipital area of his head...
Dick and I moved him to the couch and tried to
lay him down....
He was very aggitated and even touching any part of
him was very painful for him. He was hurting....
(I was crying and hurting....)
It was aweful...
I gave some tylenol and extra klonipin.....
Finally about 2 he settled down...and rested.....
He was laying with his head on my lap.....

This was about the time Dick had the meal ready...
Dick convinced me to come and sit at the table
with them....
It was very difficult to sit at our "family" table
with a plate and seat
empty..... We had all been so hopeful that today was
the day....
Hollister would sit at the table with us....
It was not to be...and to be honest....It gave me
a glimpse of what is ahead....
There may always be an empty chair and plate at my
table.
Heartbreaking.....

All I could think of was......When I was pregnant with Harrison....
we had a small
table that we ate at in the Kitchen...it only had 4 chairs....
Hollister was very
worried how we would all one day sit at that table...
He keep saying we didn't have enough chairs to have 3 kids.....
I reminded him we had a dining room table
with six chairs......and could accomodate more if
need be.....Thankfully, we have
had many good meals at that dining room table....

There is so much to be Thankful for....

It would be hard to list all that fills my heart..
We wouldn't be able to care for Hollister the way he deserves...
without all of you....It truly takes and entire community....
And for all of you we are Thankful.....

Hollister did look a little better this evening.....
Not sure what sparked a huge headache like that....
Is the stroke extending.......
Or.....
Is something around the stroke opening back up......

Happy Thanksgiving....
and all we have to be Thankful for......

Gobble Gobble.......

Friday, November 17, 2006 6:57 AM CST

Happy Friday...

This proves to be a busy time.
State competition for Mock Trial started last night.
It continues today and tomorrow. I wish everyone could
see Harrison in his black suit. He looks adorable!
He is very prepared and is taking this all very
serious.
This weekend is also the ST. Theresa 6th grade
charity basketball tournament.. They are raising money
for Operation Smile. The 6th graders and some parents
have been working very hard. I appreciate the extra's
that many parents are doing...I feel like they are
doing my share.....Thank-you and hopefully, alot of
money will be raised to help Operation Smile.

This weekend is also the Festival of Trees..This event
supports the Childlife department at Blank Children's
Hospital. Hollister, loves the Child life Staff. This
is the place that he has volunteered for years. Child-
life staff are the people that are constantly there
for you kids when they are sick. If you have time you
should try and support this awesome event.

Hillaree is busy trying to find her sevice hours and
has offered her assistance at both of these awesome
events over the weekend...Dick will be busy driving
her somewhere...haha

Hollister and I had a pretty quiet week.
The trip to Rochester took a lot out of him. He
has been very tired!

Monday he tolerated the trip like a little trooper.
We got him in the car and headed north and he sat
in the back and smiled. I think he was just happy
to be going somewhere...even the Mayo Clinic..haha
He finally feel asleep about and hour into the drive.

We did notice the farther north we got, there was a
lot more snow...Last Friday, Rochester got 12inches of
the white stuff..ha Good place for it.

It was a busy day, our appointments were pretty
close together. He was tired of sitting by the time
it was done. He didn't want to be in the wheelchair.

The Neurologist was our first stop. I was hopeful,
that he would eliminate one of his 5 seizure meds...
Nope...not changing a thing..Two of them are a low
dose...AHHHH I was dissapointed that he didn't say
much on Hollister, and how he looked. He just reminded
us that this is a plateau..
I reminded him, that Dick and I would remain HOPEFUL.
He at least smiled and validated my thoughts...
I am always so sad to be confronted with what lies
ahead........

But....
An hour later Hollister was in front of the Geneticist...
We all really like her. She thought Hollister looked
awesome. He responded to her voice. She was very
impressed and continues to be optimistic for his
continued recovery. She didn't change anything...

Then, it was on to see Gastroenterology. He is one of
my favorites... We tend to agree to disagree a lot.
We had a long talk about how and why the feeding tube
was place. I was very disappointed, that he hadn't
been consulted at all. He was never told that he was
in hospital at all. I was very angry....I speculated
that in June, but now I know....
His Mic-Key button looks great, he was very happy with
how he is tolerating his feeds....

The postive words of the Doctors are sometimes the
only validation that I am doing a good job of taking
care of him...and Monday was a big payday....ha

The big news is that he weighs........

123pounds....This is a personal high for him..
His highest weight before was 118 pounds...
Last Christmas at Rochester he weighed 111 pounds,
February 21, he weighed 94 pounds...and on
May 1, he weighed 105 pounds....

The Genenticist was very happy that he is gaining
weight. This lets her know, that metabolically things
are working the way they should....
(What I took away from that is the Dick and I
must be metabolically perfect....hahaha)

It was a good visit...And he did very well.
He has been pretty low energy all week. He is also very
naughty....He will barely stand and won't take any
steps...He just groans...

I am hopeful, he will bounce back....

Thank you to all Hollister's faithful. I know there
are many who pray and think of Hollister daily.
Your prayers are heard and this amazing young man
gets stronger from them....
All of Team Tough gets a pat on the back.....

Monday, November 13, 2006 5:33 AM CST

Indian Summer was short lived. Thursday was the last
nice day...
Friday it snowed....Not only did it snow, but the
flakes were "hugemongous"...They looked like soft
golf balls falling from the sky...ha
Only snowed for a couple of hours...
But...
It would appear winter has arrived...

Hollister did get out again on Thursday to enjoy the
nice weather....

The speech pathologist came to work with Hollister on
Friday..
He was up and ready to go.
He even ate almost a whole bowl of Chicken noodle
soup broth. It was awesome..She was amazed at his
lip and tough movements and his ability to swallow.
He is still trying to talk and uses his voice
quite a lot.

The weekend was an inside weekend...
Aunt Judy was here on Friday...
Jamie and Grandpa and Grandma and My cousin's
little man Max got come stay over, all on Saturday...
Lots of activity in the house. Good to hear some
life going on here. Hollister was pretty tired out
on Sunday afternoon and had a big nap.

Hillaree is at the Freshman re-treat at the
st. Thomas Moore Center. She left yesterday
afternoon and will get back to school about 2pm
today. I am anxious to hear how it went. She didn't
think any of her "friends" were going...It was going
to be all Dowling kids...So, hopefully, it was
a good time.

Today, is the day we take Hollister back to Rochester.
This will be a long hard trip for him. We will be
leaving soon. It is our first time out of the house.
I have to think....tube feedings...medications and
administration of them, and continence.....AHHHHHHH
I worry that this will take a lot of energy he doesn't
have...And the cold will be difficult to manage.

My biggest fears are that the Doctors( Genenticist,
gastroenterologist, and the Neurologist) won't
see what I see. We, in the house continue to have
hope that Hollister is making so progress...I would
hate to hear otherwise....

Please Keep Hollister close to your hearts and your
minds today....

Team Tough needs a lot of guideance today!!!!

Tuesday, November 7, 2006 2:32 PM CST

What a beautiful fall day.

Hollister and I spent part of the morning outside..
It was great. The sun is shining and it is warm...
I even covered him in leaves as he sat in the
wheelchair.....I am sure he thinks I am nuts...

Hollister and I were sitting on the porch enjoying
a cold beverage when his OT arrived. It was great.
After a little stretching.....we went on a walk.
He did great. This was the first time one of his
therapist got to see him in action. He walked even
farther with Pam and I, than he did over the weekend...
At one point, he even said...."I can't".....
but....
we assured him that he could....and he did....
It was great.
When we finished...HE WAS TIRED!!!!
And now he sleeps on the couch!

Hollister had a great weekend. He looks good.
It is a gift that Indian summer arrived. I love
that we can take him out to stretch his legs...
The fresh air is good for him. We took him to
Harrison's soccer game on Sunday...and after the
game he walked across the grass...it was awesome..
There were lots of cheers from many Hollister fans.

Friday, the speech pathologist came and evaluated
Hollister to see if he would benefit from some
speech therapy...and as I hoped...He will...
Speech therapy will start this week...Yeah....
I am anxious to hear him...I am hopeful that he
will communicate with me....I miss him.....
I talk to him all day long....It will be great for
him to say something back....I fear it may be...
"Mom, shut up....and leave me alone..."haha

Today is the first election day, that Hollister is
old enough to vote. I am saddened that he didn't get
to. He carries his voter card with pride. He is very
opinionated and has waited his entire life for the opportunity to vote.
I am sure he would take great pride
in knowing he canceled out his
Grandma's vote..ha
So, on this election day....I hope everyone votes in
honor of Hollister.....

Here's to Hollister and all of his hard work. He
continues to amaze me with his abilities...
I continue to be humbled by God's good works...

Indian Summer is a wonderful time...

Tuesday, October 31, 2006 5:54 PM CST

Happy Halloween....
Trick or Treat....

Last night was Beggers night in Des Moines....
All the candy has been handed out....

Harrison went out last night as a Sumo wrestler,
he had a blow-up costume and he looked awesome...
My cousin Becky brought over her little Max, and he
was the cutest Polar Bear....ever...

Hillaree was at home, she answered the door and
graciously listened to the jokes....

Hollister sat in the dining room and he enjoyed all
of the commotion in the house. It is fun to have
him at the table....smiling and laughing.

It was a nice night.

Due to some insurance difficulties, Hollister has
missed some therpay...4 days to be exact. AHHHH
It should start again tomorrow....So, hopefully
the Speech consult will go through....

We had him out over the weekend. He has done some
more walking outside. I think he is getting stronger..
He is so proud of himself when we praise him for his
efforts...It is great.

He also made it to Harrison's Soccer game on Sunday
afternoon. It was a little chilly, but good to get
out of the house...I think for both of us..ha

I like to think I see a sparkle in his beautiful
blue eyes...That even for the smallest second,
I think he is responding to me...That he is
waiting to say something profound....like
"Leave me alone"!

The brain is an amazing part of the body...
He's to healing that wounded brain....

Happy Halloween...
May all of your pumpkins be smiling...

Friday, October 27, 2006 0:46 AM CDT

I have no idea how a week went by so fast!

Last Friday night Hollister did indeed make it to
the Dowling Football game. Dick took him. They got
to the field in time to go to the Dowling tailgaiting
before the game. Dick said it was incredible to see so
many people. Thanks to everyone who stopped to say
Hi to Hollister. He doesn't say too much, as it is
difficult for him to find his words...but he is very
aware at what is going on.
Dick and Hollister got to sit up in the press box during the game.
Father Kirby arranged that for them,
so Hollister was out of the Chilly air.
They were able to stay the entire game. Hollister was
still smiling when they got home.
What a thrill!

Hillaree and Harrison didn't have school today or
tomorrow. Teacher conferences. Dick was able to go
and talk to all the teachers. Kids are doing well.
Harrison is adjusting to middle school and Hillaree
is doing OK in High School. Teachers love those two..
We always like to make sure the teachers are really
talking about our kids...ha

Harrison is part of the St. Theresa Mock Trial team.
They have been working very hard.. Saturdays for
6 hours...this has been since school has started.
On Wednesday they had there first competition. STS
advanced both of their teams to the next round, which
was this afternoon. Harrison was thrilled. He had to
call my cousin Laura (Who is a third year law student
at Creighton)...so much to Harrison's happiness, Laura
and her friend Nick(also a law student)drove over to
watch him compete. He was thrilled. STS advanced both
of their teams to the State competition...
Harrison was very excited..and Laura and Nick took
him out for a celebratory dinner. Harrison has worked
very hard to learn what he needs to, to be part of
this competitive team!

Hollister continues to hold his own...
His energy level is up. His sleep pattern is
changing somewhat. Not great yet, but improving.

Wednesday, we took Hollister to see Dr. Mooradian
(heart doctor). He did and echo to see what the
fluid around his heart is doing....
It is exactly the same as last month. It is not
better and it is not worse. There is a small pocket
of fluid behind the left ventricle, for some unknown
reason...it won't be absorbed by the body...
It is not putting any pressure on his heart....
but it is there....
WHY????
No one knows.
But....
for now it is unchanged and it will be checked again
in three months....

Wednesday during therapy, Hollister was very
wild. He was all over the place. He stood and took
a few steps...He was sitting on the couch and even
slid off..This was very intentional! Fortunately, he
was able to help us, get him back to the couch.
He didn't get therapy Thursday and none on Friday...
Thanks to our insurance...AHHHHHH

BUT,
Wednesday afternoon...when Hillaree got home from
school. We decided to take him outside to get some
fresh air, hoping to use some of that energy....
When we got out to the side walk...I decided to stand
him up...to see what he might be able to do....
Much to our amazement, he started walking with us.
It was AWESOME!!!!! He walked past our neighbors drive
turned around and made it back....Thanks to our
neighbors who noticed this mircle and cheered....
We were all talking and admiring his efforts and we
decided to go again...This time our neighbor GIGI and
her boy(our buddy)Joseph...pushed the wheelchair behind
him.......
He walked all the way to the corner.....
INCREDIBLE!!!!!
He was so very proud of himself....and had the smile
to prove it.
He was tired!

Today wasn't an outside kind of day...
The weekend is suppose to be great....
We are hoping for a repeat.....

It has been a very big week at the Farrell's....

Tonight as the house is quiet....
and my family sleeps....

I am thankful.....
for my Hollister, Hillaree, and Harrison
for my family....and the support
for my friends....and all they do!
Dick liking his new job at Met life...and how nice
they have been...
for Hooch....
For St. Theresa's school and church...
For Dowling Catholic High School
For the pan of scotch-a-roo's I made tonight!
For a simple yet amazing walk to the corner....
Most importanly I am thankful that
GOD IS GOOD....ALL OF THE TIME!!!!!

Friday, October 20, 2006 8:57 AM CDT

Happy Friday...
Going to be a chilly one.
Fall is definetly in full swing...

Hard to believe how fast the weeks are flying by.
The weeks are fast, but the days are very long.
Seems the day goes on forever.
You know the saying...
Same thing, different day.

Hollister is on a roll. He is amazing. He has done
very well this week. He is working very hard. He is
much stronger. He has been more awake during the
morning hours...He is awake right now... YEAH
He has been standing tall. He helps pull himself up
with assistance. I am able to stand him and pivot him
to a chair or commode. It is awesome.
He is verbalizing a lot. He has intent with the words
he is trying to say. They may be starting so speech
therapy at home...YEAH

Yesterday, the Visiting nurse was here to draw the
blood needed for the Dilantin level. She was leaning
over him when the "Rice is Pright" came on. She asked
him if he liked the show....and he said...
"OH BOB"....
It was great...Made my day.

Hollister's new nickname could be the Million Dollar
man....
Because,
the insurance claim papers are starting to arrive...
I open them and chuckle
Hollister spent 115 days in the hospital...
Between Blank Childrens Hospital and the Mayo Clinic,
he was in 13 different rooms.....Crazy...
The largest claim so far....
$311,092.50....
I am always amazed at how they figure out what they
will pay for...No explanations...and then somehow,
a magic figure will arrive in the mail..."our share"
HAHAHAHA
Hooch and I wait for the mailman each day...
He is waiting for a treat...and I am waiting to see
what the insurance company is sending today...ha

It has been a good week. The kids are busy. Fall
activities are winding down and winter ones are
starting up.

He has been happy and laughing a lot. Not sure what
he is thinking of or remembering, but it must have
been a really good time. Someimes he is so loud
that it fills the whole house...and we are HAPPY!

GOD is good......

Tuesday, October 17, 2006 9:13 AM CDT

I did write a note last week. When I went to post it,
the server was unable to post it. It was lost....
Usually, I save it until it is posted. It would
figure, the note I don't save is lost. AHHHHHH

Harrison's football team the Chiefs ended up winning
the 6th grade championship. I was able to make it to
the game, thanks Sara for keeping a watchful eye on
Hollister.

Hillaree got to swim a Varsity race last week on
the swim team. She was very excited. Her time improved
quite a bit. She is doing great. I wasn't able to be
there, but Dick and Aunt Jerri made it. It was awesome.

Hollister had a great weekend. His cousins (Jamie and
Nikki) were here. Hollister got outside Saturday,
the fresh air did him a lot of good. We kept moving
him about the house...He was happy. Sunday, Jamie and
Harrison watched a movie with him..Sunday night we
brought him out to the table. Tired to get him to eat mashed potatoes,
he wasn't interested and spit them at me......ha

Hollister continues to have his days and nights mixed
up. He is very active at night and slugglish or sleeping
during the day. This has been very difficult. The
problem is that he can't stay asleep. He is usually
tired and sleeping by 11:00pm...and then he is up again
at midnight...and then he is very chatty...Anyone who
knows me, I like to go to sleep...8:30pm and sleep all
night. I am not pleasant when I am up all night...AHHHH

So, by being so sleepy during the day...This inhibits
his ability to do therapy. I am ever optimistic that
this will work it self out. It seems that each night
he may be sleeping longer...

I continue to see lots of good. In this house we
continue to thank God each day for what is going on.
Hollister is getting stronger. He is moving his arms
and legs...even rightie. He is curling his legs up
and able to lie on his side...He is standing much
better. Getting him up is getting easier. He is able
to stand for longer periods of time. He has even taken
a couple of steps with therapy. Not pretty, but steps.

Occassionally, we have heard a word. He said "COVER"...
when he was freezing.. He has said "Hollister",
"Brother", "Sister", "Mom", "Dad". "NO"....
And a few more. he chatters alot. He smiles and laughs.
He also uses his voice to let us know when he isn't
happy!

He isn't following any commands, yet. It appears that
he is hearing and thinking..trying to process...It will
be good to get back to the therapy at Blank and have
speech therapy.

Fall has definetly arrive. It has been cold and wet for
a week. Even SNOW in the forcast, too early. Hollister
and I don't like winter. Not big on freezing to death!

Hollister is sleeping all curled up on the couch. He
looks great. If his brain wasn't hurt so bad, it would
be hard to know just how sick he is. This is very hard
for me.

Time for me to start crushing pills........

Friday, October 6, 2006 9:34 AM CDT

Friday...
Another week has flown by.

The word of the week has been SLEEP.
Hollister sleeps and sleeps.
I am not sure if he is making up for all the time
he lost over the summer. He sleeps all day, and for
the most part sleeps at night. He hasn't been awake
much this week.

Yesterday, was our big outting. Hollister had to
go to the hospital to get his PICC line changed.
Dick was able to help get Mr. Sleepy to the car.
He slept on the way to Blank, he slept during the
procedure, and he slept on the way home. When we
got him back on the couch...he slept!
Wasn't quite the adventure I hoped for. I was hoping
to socialize...but
to Hollister's happiness, I wasn't able to TALK to
anyone. (I can clearly remember him yelling at me
after therapy for TALKING too much...I was taking too
long...He would say..."You know my Mom, she has to talk
to everyone....AHHHHHHH")
I am sure deep inside, Hollister is laughing that he
stifled my talking...haha

I have to say that I am relieved that the PICC line
exchange went perfectly. I really hate to go to level
C...Radiology....We have had lots of BAD news down
there. Not part of my comfort zone.
Yesterday was good....

I find myself each day, missing Hollister more and
more. I am reminded by the pictures on the walls
that life certainly has changed. I am so stunned by
what has happened. I see a perfect beautiful baby boy
and my heart breaks. I look at his first Hockey
pictures and I am reminded how energetic and full of
life he is...and I want that back. I sit and remember
what he hoped for and dreamed of...he was a very
smart and wise little boy. He was the boy, that every
one wanted to take home with them. He has always been
the "HOLLISTER"!
I never in a million years would have guessed that he was
going to be sick. I find myself in such an unknown
place...
I keep reminding myself to pull it all back together...
There is laundry to be done...ha

Through Hollister's journey...I am the one who is
learning the most...
I have learned that the Parish of St. Theresa's
is an incredible group. We are lucky to belong to such
a strong community...The faith and support there is amazing...
Also, there a lot of good cooks in that parish..
I am amazed at the good food that has been brought.

Recently, I learned that you cannot leave very dirty,
wet, stinky...clothes in the washer overnight and not
turn it on...Not good...valuable lesson!

Hollister recieved the coolest hockey jersey...It is
from the Boston Bruins...It is #27, Steve Leach..
signed and ready to go...It has Hollister on the back.
It is awesome...I have learned to expected the
unexpected from our friend Phil....Thanks...

Daytime TV SUCKS.....(after Rice is Pright)

One more thing I have learned...when you think you
are the only one struggling, the only one who knows...
God reminds you, the cross you bear is your own...
And, if you had the opportunity to trade it...you
would take yours back....
(I am certain, I would take Hollister's cross no
matter how large and heavy and give him my much smaller
lighter one!)

Monday, October 2, 2006 11:00 PM CDT

Today is sweet Hillaree's Birthday. Hard for me
to believe she is 15 today. I am not sure where
time has gone.
Her birthday was a busy one. She had school and
swimming. She didn't get home until after 7....
I didn't get but a minute with her. I am selfish...
I wanted her all to myself...I guess those days
are over..ha

Hollister had a pretty good weekend. He looked
awesome on Friday and Saturday. He stood and
took a few steps in therapy. He hadn't done that
for weeks. He is also very tired. He slept most
of the day on Sunday. It was a beautiful restful
sleep. I keep hoping to get him up and out...but
so far hasn't happened. The weather is suppose to
hold for one more day. It has been great.. Hollister
and I missed all of the heat of the summer, so we
are enjoying a few 90 degree days in October..

We continue to work on hard on getting the six cans
of food and all of his medications through the
tube each day. So far, I can get about 4. That is
about 1230 calories. Yesterday, I thought I was on
target...unitl he started vomiting during his lunch
time feeding. Trying hard to get it all worked out.

The medical supplies continue to take over the
entire house. Yesterday was the deliveray day for
food and other supplies for the whole month...
ahhhhhh
All of this "stuff" is overwhelming and is
pressing my organizational skills. haha

Today, as we celebrate Hillaree's birthday...
What a gift to sit together as a family. Hollister
sat in the rocking chair, and I know he was smiling
thinking about his sister. Hard to believe it was
15 years ago that Hollister ran out of the deliverly
room to his friend Kirk...and threw his arms in the
air and Yelled..."I have a sister!" He was never
prouder. He has always loved his sister....

I thank God with all my heart today for my kids.
I am overjoyed to celebrate another birthday with
my family intact....

Happy Birthday Hillaree!

Friday, September 29, 2006 4:54 AM CDT

Hollister has been home a month!
Hard to believe.
It is good to be home. I am a little disappointed
that more progress hasn't been made. It is hard to
accomplish much when you feel as bad as he does with
his dilantin levels so out of whack...
Looking back over the spring, I am wondering if
his dilantin level wasn't responsible for some of
his vomiting before....

Hooch dog is even accepting to the fact that we are
home. He is finally warming up to Hollister and I.

Summer is over and fall is in full swing.
Leaves are starting to turn..
Fall is that time of year, when you are taken in
by all of the beauty....and them...
WHAM
WINTER....

I hate to jinx myself but Hollister has made it
about 36 hours without any puking. YAHOO!
His dilantin level was down to 28.?
Still high, but tolerable for Hollis.
Normal I believe is something like 11-20..(I think)
He is tired, but looks pretty good.

Therapy continues to come daily. He is standing OK.
But, refuses to take a step. Not sure why.
He won't follow any commands. It is hard to know if
he can't or if it is from the stroke, processing
in his brain.

I have been thinking all week about his medications
and feeding schedule. How to make it work best for
Hollis. One of his seizure medications makes it very
difficult to get six cans of tube feeding in a day..
Any guesses on which one....DILANTIN....
Hopefully, I can get it perfected soon...

I am thankful to be home, at times it is very
difficult. I find myself surrounded by thoughts
and memories that are overwhelming. I am reminded
daily how much I miss him. I sit in his room and see
a life that has been so interupted..It breaks my heart.
I find myself crying over the simplest things...
Standing in his room, seeing his clothes going unworn,
Harry Potter books, movies that have gone unwatched,
lunch dates that are broken, football games unattended
(ISU and Dowling)...A heart that aches.

But...

I am also reminded everyday..thanks to Hillaree and
Harrison that life is still marching forward. I find
great joy listening to them as they share their new
experiences in Middle school and High school. I know
how proud Hollister is of both of them... He loves
being their big brother. He has a very special
relationship with both of them. My heart fills with
great joy when I see them together, so tender and
gentle...and then I cry...haha

When the pity party is over, and it should be!
I am very happy and thankful to have him home.
We are where we need to be. Hollister and I will
continue to work hard on RECOVERY.....
The smallest step forward is a victory, to be
celebrated. He continues to inspire us all. His
smile fills my heart and soul. When he laughs out
loud, we all stop and wonder...WhAt is so funny...ha
And, when he has a far away look and smile...I know
he is seeing the angels and they are telling him he
is safe and to stay a while, his work here isn't
finished.

I remind myself daily, that these children are
precious gifts and truly belong to God. It is a
treasure to have them.

Today marks the end of the first 6 weeks of school.
hard to imagine.

This is a big football weekend here.
Dowling Catholic plays Ankeny...That should be
an awesome game... Go Maroons.
ISU plays UNI...go Cylcones...
and Iowa plays..Ohio State....(we all know who
Hollister will be cheering for!)

Tuesday, September 26, 2006 10:53 PM CDT

Finally time to sit and write a note.

Hollister keeps me busy.
Sometimes we are just sitting together,
and I don't want to miss a minute with him...
Busy.

This past weekend was the Beaverdale fall
festival. We all love this weekend. The parade,
party, and fellowship...too much fun.
We missed it all.

Harrison ran the beaverdash (5k) Saturday morning, and
had a football game and a soccer game..

Hillaree had a swim meet and babysitting...

Hollister was too nauseous to get out of bed.
I get an A for effort. The weather was awesome
on Saturday morning. I really wanted to get him
out of the house and up to the parade...
BUT...
no such luck...
Lots of vomitting...so he stayed in bed...
Needless to say, I was disappointed.
Somedays I feel like this stupid disease kicks my
Butt!
MELAS SUCKS

Not to be outdone by the morning...
We were able to get him down the basement stairs in
his wheelchair to the shower. This is no small task..
I can only imagine how good this must feel to him.
Saturday evening during his shower...for some reason,
it turned out to be more work than ususal...
(and Dick left to go to Menards...)
As I was drying him off...with the help of my sister
Judy, Hollister seemed to be struggling...
and sure enough...
out of no where a Grand mal seizure...
while sitting on the shower chair...
AHHHHHH
We still had to get him to the wheel chair and up
a flight of stairs...
Thanks to Hillaree and Judy...Hollister made it up
the stairs...in one piece.

Oh, to have been a fly on the wall. It must have
been something to see us moving him and getting
him up the stairs...haha

He continues to have nausea and vomiting daily.
His dilantin level continues to be an issue.
On monday it was 36.6...too high....
When it is high, it is toxic and can cause all kinds
of problems....nausea and vomiting...
Answers lie ahead..hopefully.

He is weak and very tired. His therapy sessions have
been limited. He continues to try and work hard...
Somedays holding his head up is hard work and
other days he is playing opposum with the therpay
girls...the minute they leave, he smiles a true
Hollister smile..ha

He will on occassion eat a bit of applesauce, ice cream,
and push-ups...He will when he feels like it drink
Coke and water...
When he isn't interested he spits it back in my face..
I keep reminding him paybacks will be tough!

To this point in time, Hollister and I are tolerating
our time at home. I don't get much done, as I spend
my time with him. We have made it so far without any
other nursing care. So far so good.

Even as crappy as he has felt this last week. I am
able to see a little Hollister every day. It could be
a look or a voluntary touch of my hand or a word that
he says...I know and believe he is trying to get back
to us.

I wait faithfully by his side for as long as it takes.

Thursday, September 21, 2006 2:20 PM CDT

This has been one of those weeks that makes me go...
AHHHHHH

Saturday Hillaree took Hollister in his wheelchair...
for a long walk to the video store. It was awesome
to see the 2 of them taking off. They both did very
well. It was great for Hollister to get outside.
All that fresh air really tired him out.

Sunday, he slept in. Around 2pm...he started
PUKING!!! and didn't stop....I wondered if it
was his dilantin level was high.....because he
looked so good on Friday and Saturday.....
He didn't get out of bed at all on Sunday. Not
good. I started IV fluids immediately...and held
his tube feedings....

Monday, same song second verse!!!
Finally, a nurse was available to come and draw
his dilantin level...2pm on Monday..
Monday night, I recieved a call from a Doctor...
Surprise...
His dilantin level was high (toxic)....

Tuesday...more of the same...
Finally got him up and did a little therapy.

Wednesday, he was tired. I started his tube feedings
and he tolerated them.
Then it happened....
He ate by mouth an entire bowl of Hot and Sour
Soup from his favorite chinese place...It was
awesome...INCREDIBLE...
and he looked so proud and happy...Thrilled.
It was great to see him so excited. I couldn't help
but tempt him will all of his favorite foods....

Today, up for therapy....
he was very tired....
during the "Rice is Pright" he started with the
Puking again.....
AHHHHHH
Thanks to Phenergen, he rests.
Hopefully, this will pass and he will wake
up refreshed.

This week is homecoming week at DCHS..Hillaree is
having a blast with all the dress up days. She is
involved and participating, I told her those two words
will help make her high school years more memorable!

Hillaree and Harrison continue to inspire me. They
make me so proud the way they handle all that has
changed in their lives. They amaze me. I worry about
them, hoping that we are doing right by them.

It is hard to know how to help them, when somedays
I can't help myself. I find myself surrounded by my
memories of a child and a life that is so changed.
It is hard not to feel sorry for them, myself and
most of all Hollister.
The question that comes to my mind a million times
a day....
WHY?....
This isn't an accident, this a a genetic disease
inherited from me....This was present at his birth.

Then I remember Mattie Stepanek....
WHY NOT!

I keep reminding myself that Hollister ate soup
last night...That is his first real food since
May.....
Talk about exciting.
It is only a matter of time...

Saturday, September 16, 2006 1:42 AM CDT

Today is the big day...

Iowa State - Iowa football game..
No need to remind everyone where Hollister's
heart is...
Not sure he knows today is the day.
It is in "Crap City" (Iowa City) this year...
It is on ESPN...not good for those of us without
cable....Hard to believe it isn't on a local station.
So...we will make sure he can listen to it on the radio.

GO STATE!!!!

Last year...I remember it was in Ames...
We went...Hollister wanted to do homework instead
of tailgaiting...CRAZY!!!!

No games this year....

GO STATE!!!

Hollister continues to work hard during his therapy
times. He is even showing some of the Hollister
personality...That we all know and love..haha
His body is getting stronger...small steps forward.
He is sitting and standing much better this week.
He is being very obstinate...and wouldn't take many
steps... in therapy or for Dick and I.

His brain appears to be on a page of his own.
For the most part he is happy. I believe at times
he knows...I wait anxiously for any sign of my
Hollister.

He is sleeping for longer periods at night..Yeah.
Not all night, but better. He is up most of the day.
Which is great. This really wears him out!

We continue on with the tube feeds and crushing
pills. Keeps my days filled and Hollister full of
something..haha

Hollister's rollercoaster ride gets no easier.
He requires a lot of care. It breaks my heart that
he can't do the simpliest tasks. It takes a lot of
energy just to sit on the couch.
What he continues to teach us is amazing..The will and
the spirit to live are amazing...
I am reminded what a gift life is....

Here's to Hollister gaining strength and his
continued courage........

Go State!

A little ISU Humor!!!!

Kirk Ferentz, after living a full life, died. When he got to heaven,
God was showing him around. They came to a modest little house with a
faded Hawkeye flag in the window.

"This house is yours for eternity, Kirk," said God. "This is very special;
not everyone gets a house up here."

Kirk felt special, indeed, and walked up to his house. On his way up the porch,
he noticed another house just around the corner. It was a 3-story mansion with a
Cardinal and Gold sidewalk, a 50 foot tall flagpole with an enormous Iowa State
Cyclone flag, and in every window, a Cy cardinal.

Kirk looked at God and said "God, I'm not trying to be ungrateful, but I have a question.
I was a good coach, I tried really hard to beat the Cyclones every year and even won once,
and I tried really hard to continue the Iowa football legacy!

God said "So what do you want to know, Kirk?"

"Well, why does Dan McCarney get a better house than me?"

God chuckled, and said "Kirk, that's not Dan's house, it's mine."

GO CYCLONES!!!

Wednesday, September 13, 2006 2:37 PM CDT

Quiet time...

Hollister naps...
A beautiful nap.

I read a note on the guest book...
I am very grateful, to have a Sara Murphy
in my life. Last weekend was because she is
amazing. She told Dick and I a few weeks ago,
that she felt helpless.....and wanted to do
something..WOW
Did she do something.....
It is overwhelming what she was able to do.
The people she gathered to work the events that
were planned...I am speechless.
I am sorry the weather was so cold and rainy....
It made the work a lot more difficult.
Everyone continued to have smiles on thier
faces...knowing they were helping Hollister..

I was able to attend the party on Friday night.
It was the first night I had been out of the house..
since April...The crowd was small, but it was fun
to be out. It was hard not to notice how much work
was done. The food and auction items were awesome.
Thank you to everyone who worked so hard to make it
so nice.

The carnival and carwash went on...rain and all..
Lots of kids helping with those events...Filled my
heart.
We were able to take Hollister to the carnival.
It was fun for him to get out of the house. He did
awesome. Nice to be around so many who care.
It was raining hard on Sunday morning so Hollister
and I didn't make it to the walk...Even in the rain...
It was a good time.
The breakfast had a good turnout. Who doesn't like
beakfast.
It was great to see all who came and all who helped..
I loved seeing everyone in the Team Tough Shirts...
It is overwhelming to know how many care and to
know that we are not alone...
St. Theresa's is an incredible parish!

Team Tough has strength!!!!!

THANK YOU!!!!!

Hollister and I continue on. Waiting for a routine
to settle in...haha

He is having some kind of therapy daily. Today was
Physical. He was tired, when she arrived. I had
given him a bath and washed his hair...All by myself..
We were both tired. haha

He appears to be having some headache pain...
he grabs at his head and whines...

I think he appears stonger. He has more control when
sitting in the chair. He is awake more.
He still doesn't initiate anything. He is still unable
to follow the simplest commands...
But, he does look at me.. and he smiles and
listens when I talk...sometimes...he yells at me...haha

We take things as they come....minute by minute.

Thank you to eveyone who helped make last weekend
a big success. I feel very blessed to have such
supportive friends.

Incredible!!!!!

Friday, September 8, 2006 12:29 PM CDT

Team Tough is humbled....
yet again....

Hollister and I have enjoyed a full week at
home....
Just when I think I have a routine...
Hollister will make me re-think my schedule...
He is very stubborn and we are doing things on
HIS time.

He is tolerating his feedings and medications.
I am getting a little more efficent at crushing
all of his pills...and there is a lot of them..
Finally, on Tuesday afternoon.."the Silent Knight"
arrived...This is a "deluxe" pill smasher...
No thanks to our insurance company...They consider
a pill crusher a luxury!
My Silent Knight is a gift from the Variety Club...
(money donated via the Telethon....)Thank you!!!!!

PT and OT started this week. It is different having
them come right to the house. He is definetly getting
stronger..He is sitting on a straightback chair with
minimal assistance..Holding his enormous head!!!
And....He is standing...and....
has taken a couple of steps..With two persons..
But, he is upright....AWESOME!!!
He works hard for the therapists...

He is still working on drinking some coke and
I keep trying to get him interested in food...
Not much luck...yet.

He is sleeping a lot...During the day....
He is doing a little better at night.
He still wakes up to pee, and then he can't fall
back asleep. He is tired.

Today our big adventure was taking him to see the
cardiologist...for the Echo...It was our first time
out of the house..This proved to be challenging.
Thank-you Gayle for helping me get him there and
home. He of course was so tired.....
But...The echo was the SAME... He still has the same
small amout of fluid behind the heart...He is doing
OK without the medication...He will re-check it in
a month...
God is good all of the time...
I am Humbled...and thankful.

ALSO...
With a very full heart I write about the weekend...
I am amazed at all that is planned. A whole weekend
honoring Hollister...WOW...For once in my life I may
be speechless. Words don't often fail me....
But.....
The T-shirts are awesome...I am so proud to have so
many on our Team. Seeing the t-shirts brought joy to
my heart and tears to my eyes..They are green with
a shamrock...Hollister would really like these.
It is heartwarming to know that the Dowling Swim team
are wearing them proudly at school today!(jeans day)

I am going to try and get Hollister to some part of
the carnival and run at Gray's lake. I am sure it will
be very emotional for us. It is hard for me to even
imagine that so many people are doing so much...
makes me wonder WHY.....

It is harder for me to imagine, that this is where
my life has gotten too...

I am HUMBLED!!!

Hopefully all who attend the weekend in Honor of
Hollister..go and have a good time...
Laughing is permitted...crying is to be omitted....

All of the time God is GOOD!

Monday, September 4, 2006 6:16 AM CDT

Happy Labor Day..
Last official Holiday of SUMMER...
What a rainy weekend it has been...
Lucky for us...no plans ruined...

Thinking back, two years ago....
Hollister was in the PICU with a terrible
aspiration pneumonia from a seizure...It was a very
scary time...I remind myself how strong he
is...and that he fought his way back from
what looked like a fatal blow....

He is my Team Tough!

This morning we are up...Meds at 6am...
Hollister and I (and even Dick)...
were up most of the night...
This night, the MDA telethon was on...
For those of us, with no cable...
something to watch...hahaha

Watching the Telethon is very difficult this
year...I realize more than ever what it means
to be one of Jerry's Kids..(and Jerry not being
my Dad)...It is heartbreaking. I watch and listen
to those stories of HOPE...

I have always maintained that we have HOPE...
Hollister is an amazing child with an amazing
soul. He reminds us each day the value of a life.
Not one second should be wasted or taken for granted.
I remain constant in my thoughts and prayers that
healing for Hollister's brain and body can happen.

Watching the stories of those on the Telethon
reminds me how much I dislike the word progressive..
It certainly comes to light, when talking about
Neuro-Muscular diseases...
No one, should ever have the life expectancy of
a teenager...This just seems wrong.

I know for Hollister, he has been very "LUCKY",
and has done OK for the last 5 years....
BUT...
I have been reminded lately that his disease
is progressive and he has probably outlived his
life expectancy...

Hard words to hear, hard words to swallow...

So I watch the telethon this year, as the
Mother of one of "Jerry's" kids....
Kind of Hurts....

Happy Labor day.....

Dowling Catholic did indeed beat the Valley Tigers...
Hollister had a smile on his face the entire game..
He listened, cheered, and laughed appropriately!
24-14...YAHOO!

Friday, September 1, 2006 3:37 PM CDT

Hard to believe September 1st...
Labor Day weekend....

Jerry Lewis Telethon....
AS a child, I couldn't wait for the
Telethon...Not having a clue what
MDA was....
NOW...
Muscular Dystrophy has certtainly changed
our lives....
Thanks to the Musuclar Dystrophy loaner Closet,
we have a high back wheelchair to use as long
as we want...
What an incredible organization....

Hollister tricked me the other night and
last night...He slept only a short time...
Unfortunately, he had to pee....and it woke
him up...Which is good, but then he was up....
AHHHHHH

Yesterday was our first day home...We didn't do
to bad...Trying to figure out how the feeding
and medication schedules work....It is a lot.
Starting at 6am and finishing around midnight...

Home PT came for an evaluation. It was good.
She is very optimistic, that he will be able to
get back to Blank for therapy...maybe 4-6
weeks..

It is still to difficult for me to transfer him by
myself. So, we are trying to make it work out
when Dick can stop by and help me move him..
A routine will be welcomed.... As will sleeping
at night.....

Last night, he ate a small dish of applesauce,
he said..."MMMMMM". I can only guess how good
it must have tasted... He continues to enjoy
a taste of coke...

He is now waking up, He has slept the entire
day...Harrison is filling him in on his day....

Tonight is the much anticipated Dowling Catholic-
Valley tigers Football game. This is the game of
the year. It is fun hearing Hillaree excited about
a football game. Now that she is in high school,
I think she may have found her place...
Hollister loved this game, we are sorry he can't
attend...The annual bet with Dr.(Valley) Flores
is in place...Chicken wings at Hooters...We bought
last year, this year it is his turn to buy...
GO DOWLING!!!!

Hopefully with a long weekend, we will get some
order in this house...
Hard to say when...
Swimming, football, and soccer...

Tonight we say go...BIG D...
What do we eat....Tiger Meat...Tiger meat....

Wednesday, August 30, 2006 11:26 PM CDT

HOME!!!!!!

Team Tough tonight,
sleeps under one roof....

Hooch Dog has his family back...
He was very happy to see us.
He isn't sure what to think.
I know he wondering, where have you
been.....

It was nice to all be together tonight.
To see Hillaree and Harrison for more than
an hour..It was so fun to hear about there
days and activities...

It made me realize how much I miss life....

We made it home about 5, this afternoon..
It was quite the trip..Hollister didn't
wake up until we were in the house.
He had a jolt as he slid out of the wheel
chair...There he layed on the floor.
He had no idea what had happened..And,
Dick and I had no idea how we were going
to get him moving...

But, Dick was able to pick him up and get
him safely to the couch..

The euipment and supplies started to arrive..
The front room is full of boxes of much needed
things...30 days worth...

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
I may never get organized...

Then Hollister POOPED...again.....
This time he is sitting on the couch...
Dick and I just stood there looking at IT
and each other...I wasn't sure how to go about
cleaning it...
At that moment, there was great fear that we
had bitten off more than we can chew and swallow..

But, we settled down and cleaned our little man up.
He then rested very happily on his couch in the
porch.

We did manage to get him up to the chair tonight.
He liked it. He liked all the activity in the
house. Hillaree and Harrison both spent time
talking with him and sharing their days...

Hollister and I are sleeping on the couch/sleeper
in the porch...His room is in the basement..not
good. Dick and I got him into bed about 10:30..
He feel asleep with a huge smile on his face.
I can't believe it..He is asleep...
First time in weeks....
Hope he can stay asleep...

Thanks to all who have checked on us.
This journey of Hollister's is a very
tricky one. I appreciate all of you who are
in it for the long haul...
It has been a long five years...But day by day
it doesn't seem so bad..

115 days in the Hospital is too long.
A lot happened in those 115 days...
We finished out our stay in the Blank
PICU...This was room 13...
I was very worried about room 13, but
turned out to be lucky 13!!!
I guess 13 really is just a number.

Hollister has a long way to go...
How much if any he can recover is between
him and God...
I remain ever confindent and Faithful that
recovery is just a few therapy sessions
away...

Here's to home, there really is no
place like it...

Monday, August 28, 2006 11:21 PM CDT

Another Monday....

Busy day for everyone...

Hillaree and Harrison were exhausted tonight.
It is hard to get back into the routine of
school, activities, and spending time at the
hospital. They both were doing lots of homework
here tonight. Seems classes are in full swing
for both of them....

The weekend brought another swing in Hollister's
dilantin level...more puking.....
The level was better Sunday afternoon and his
medications were changed again...

He is in a lot of pain...Muscles and joints are
sore.. I am reminded that this is a Muscular
dystrophy....I hate to see him hurt...
Sunday night, I had asked for tylenol for him
(he gets it in the suppository kind....)
When the nurse was finished...Hollister looked at
her and said, "You Suck!!!!"
It was a beautiful thing, the words were clear
and appropriate....It was awesome..
The nurse and I both laughed and laughed....

The Cardiologist was in today. He looked at the
Echo from last week...He compared it from the
week before when the catheter was removed for
his heart. He is NOT happy about the fluid that
remains behind the heart. So another Echo will be
done on Wednesday of this week, to decide what steps
will be taken next. He remains on the medication to
stop the inflammatory process....If Hollis could
take some steroids, this would be easier to correct...
But, he can't metabolize them....

Hollister is still confusing his days and nights.
He feel asleep around 8pm tonight, he is starting
to yell, which he does all night...So I am sure he
(we)will be up ALL night...AHHHHHHH

We are planning at this time to go home on
Wednesday....
It is going to take a lot of work to get him
home...Not sure how it will all work...
Plans are being made...Euipment is being gathered...
Eduation is being done....Lots to learn...
It is going to be interesting....
At this time, I am not going to have nursing help...
I may be crazy..

Hollister continues in this fight for his life.
His brain and his body are hurt. This is a very
mean progressive disease.

But,

Hollister is still very much alive. There are moments
of clarity...I hang on to those. He smiles like he is
seeing and believing...and he takes me with him...

Hollister continues to be strenghted by all your
thoughts and prayers...The healing power of your
prayers are awesome...

He looked at the nurse first thing this morning
and responded to her questions..."I am fine..."

Gets no better.....

Friday, August 25, 2006 2:17 PM CDT

Another week is coming to an end...

The kids have survived the first few days of school.

Hillaree had her first swimming injury this week.
She pulled a muscle in her thigh and had to sit out
a practice or two..She was heartbroken. Tonight is
the first dance (mixer)of the high school year. She
is excited to go. Football games don't start until next
week..

Harrison appears to like the 6th grade just fine.
He is excited about a lot of things going on this
year at the middle school. He has his first soccer
tournament this weekend. It will be a lot tougher
as his team is a select team for Dowling. We are
very proud he made the team. He also has first football
game.

Busy times.....

Hollister continues to be awake at night and sleeps
during the day. When he sleeps it is a beautiful
restful sleep.

He is having a lot of pain, head and muscle, I assume.
He can't really tell us, but his body language and
facial expressions are pretty obvious.
The therapist have been really stretching his muscles,
this is great....He has also been sitting in the chair
daily...It is getting somewhat easy getting him up..

Yesterday, that G-J tube was changed to a low profile
Mic-Key Button. This is a very small g-tube. It
only goes to the stomach. It is very managable tube.
His tube feedings are going well. He is tolerating the
Bolus feeds well.
Also, his IV fluids were discontinued. The fluids are
being replaced with water through the button. Today,
his labs looked good. They will be checked again on
Sunday. Hopefully, he can maintain his hydration with-
out the extra sugar.

Yesterday also there was an ECHO of his heart done.
Checking on the effusion(fluid around his heart).
Wondering how much longer he has to be on the Indomethicine....
Waiting for word from the Cardiologist.....

There are times when he tries to communicate with
us..He makes eye contact with us at times. He is
happy and smiles alot. He will occassional move his
legs or leftie...but not that often. You can tell
how hard he is working.

Judy went home on Wednesday..She had stayed with me for
the last 7 weeks. I appreciate all of her help and
support. She really went above and beyond!!!!!

Team Tough continues to need thoughts and prayers.
Hollister to needs to have the courage and strength
he needs to let his wounded brain and body heal.

His smile and his laugh continue to melt my heart
warm my soul.....

Wednesday, August 23, 2006 9:15 AM CDT

Summer is officially over.

A lot of fun was missed this summer by the Farrell's.

I think Hillaree and Harrison were relieved to go
back to school. I think they both were looking for
a routine.

Hillaree is now a high school student. She is a
freshman at Dowling Catholic. We are happy that she
is at the same school that Hollister went to.
I know she will shine there.

Harrison is now a middle school student. He is in
the 6th grade at St. Theresa's School. He started
today. He came to see Hollister and I before school
started. He looked awesome. Hard to believe my
baby is in middle school.

This is the first time they have been at a school
by themselves. I am sure that will be wierd not to
see each other at school. Hillaree and Harrison
depend a lot on each other.

Hollister continues to have his ups and downs.
Mostly his dilantin levels.. Monday morning it was
49.7...That is toxic...No dilantin was given on
Monday...Tuesday it was 28....this is high but OK
for Hollis. Target goal...30. On Tuesday, it was
started again, this time through his G-tube...
This is a lot of work, as food has to be off for
2 hours before and 2 hours after....ahhh
So his tube feeding schedule has been all over the
place.
With the high dilantin levels, come the vomit....
As usual at night...so a major event was avoided
as I noticed the vomitting right as it started...
My sister Judy was here to help and Hollister's
airway was protected.
Monday morning was projectile...on my shoes...

Friday afternoon, I decided it was time to get him
out of bed...It wasn't pretty, but he did make it
to the chair. He had some head control, it is hard
to imagine how heavy your head is when your muscles
don't work.

He has been out of bed eveyday since Friday.
Everyday he does a little better. On Saturday, I
asked about therapies...I wondered why no one
had seen him...not even to stretch him....
Apparently, all of his therapies had been stopped....
No wonder his legs are tight and hurt.
So....
On Monday, thankfully, therapies resumed...and he
is being stretched and encouraged to move.

Hollister continues to amaze us all.
He is talking, doesn't always make sense but
words are used...Sometimes naughty words, but
words....

We continue to pray for Healing.
Truly Hollister has shown remarkable signs of
strength and courage...A a faith that is
constant.

As the days move forward,
we marvel at the smallest steps...
and thank God...

Thursday, August 17, 2006 9:49 PM CDT

The last couple of days have been hard to know
if that pain in my stomach is anxiety or optimism.....

Lots of things going on with Hollister.

He is busy....
Busy talking, laughing, cursing, thrashing about,
staying up all night, sleeping all day, smiling,
looking very sad, and sometimes quietly looking
about....He is busy!

His GUT....
He tolerated his tube feedings through the J-tube
well. No problems noted... The feeds progressed so
well, that yesterday...his G-tube was clamped for
4 hours and unclamped for 4 hours....Trying to see
how well he could process his own fluids....It was
slow, but progress was made...and today was better.
So....This afternoon, it was decided to try a feed
through his G-tube(stomach)...he tolerated it very
well....better than expected...So his feeds are now
going through the G-tube...Bolus feeds(not continuous,
a can over an hour.) WOW!

His HEART....
Today the Echo was done. Early this morning..
Again with the painful stomach for me...I am sure
this was ANXIETY!!It was hard to wait for the
Cardiologist....
He told us that there was a small amout of fluid
behind his heart...Nothing to worry about at this
time...He said, he would keep Hollister on the
medication, to keep the fluid form re-accumulating.
Dr. Mooradian will be back next week, to check on
Hollister.

His BRAIN....
His brain is hurt. but...
His seizures are much better. His right arm is
quiet, for the most part. When he is resting, it
is nice to see that his body is quiet. His brain
is definetly trying to figure out what happened
to it. Each and every day, I see more good!!!!

Hollister with his wonderful spirit and smile,
makes me realize how lucky I am. He is tougher
than I could imagine. I am reminded how fragile
life is and what a gift life really is.

Hillaree is starting High School tomorrow.
She has freshman orientation tomorrow morning.
She is starting at Dowling..Hollister will be
so proud. She started on the Dowling Swim team
this week. Practice at 5:15am and 3:15pm..She
is tired and sore... Good luck to our little
Hillaree.

Harrison is busy with Soccer and Football practice.
Sometimes, they are on the same night. He is so
tired when he comes to the Hospital in the evenings.
They are awesome kids and doing better than
I hoped....

Thanks to all who continue to pray for Hollister.
He continues to need those prayers of Healing,
recovery, strength, Hope and Faith.

With each and every smile from Hollister,
I am renewed.

Tuesday, August 15, 2006 5:37 AM CDT

Today is day 100 of the Hospital stay....
A 100 days...doesn't seem possible....
It is hard to imagine what Hollister has been
through the last 100 days....

If this were Kindergarten, a party would
certainly be in order....

Harrison's Birthday was success.
Thanks to all who came and helped. He had
a good day, despite of what is going on around
him. He is now one year from being a teenager and
2 years from a drivers permit....ahhhhhh

Saturday morning, Cardiology came in to check the
fluid around Hollister's heart....
12 mls...I couldn't believe it..The resident and
I high fived each other....Had to be 12 on the 12th...
God is good....
He was awake Saturday morning when Harrison arrived,
burger king crown and all. I was able to take a
couple of Pictures of the brothers together...
Hopefully, they will be good.

Sunday, again Cardiology came by to check the fluid...
12mls again....My heart was racing.....

The Surgeon and his resident also came in as usual
to check on his gut. He has tolerated his feeds well,
no swelling or tenderness in his gut...all looks good...
Except...he hasn't pooped for a week...(last Monday)
It seems reasonable to me, he has had no intake
for lots of days...and his small bowel and stomach
has been hooked up to suction....
but bowel sounds and a poop were needed..
If no poop on Sunday, he would need an x-ray and
an enema...(feard his colon may have been full of
hard barium....)ah........
Sunday night....late...
He pooped, it was a good thing....Not only once but
twice....Everyone involved was very happy.....

I shaved him on Sunday night also...It was good,
and I could tell he liked his face smooth. He hadn't
been shave since August 1...It was nice to see his
face...

Monday....
Lots of activity in this room...

Cardiology was prepared to take the catheter to his
heart out today....10 days is too long....
I was nervous...
When the fluid was check around his heart this
morning...it was 10mls.....10mls was the goal...
So, the Catheter was removed...God is good....
An ECHO(ultrasound) will be done on Thursday to see
how much fluid is there....I am every hopeful, that
the medicines are working.....

Surgery, was also happy about the poop. The surgeon
thinks he is OK....and it will be safe to increase
his Tube feeds...He is tolerating this well...
So, the TPN has been stopped...

What a day...

He slept tonight for about 8 hours...He woke up
around 4:30....I am shocked... He didn't nap much
yesterday...but 8 hours...I wish I had done the
same...I kept waiting for him to wake up.....

Lots of things to be Hopeful for.

Someone on Friday, said to me...
That they wish they had my faith...

When you sit where Dick and I sit,
If you don't have faith...you would be lost.

Please continue to pray for Hollister..
I know God is listening....
Healing....Strength and continued Faith....

Saturday, August 12, 2006 12:12 AM CDT

Happy Birthday to Harrison...
12 on the 12th...What a day it will be.
Doesn't seem possible, my baby is 12.
12 years ago, Hollister was there with Dick and
I, as his baby brother was born. A day he has
cherished always. No one can ever replace the
bonds of brothers...
Hollister has celebrated Harrison's life with
much joy and happiness.
They share so much.....

Happy Birthday Harrison.....

Hollister has been spending his nights awake
and then part of his days sleeping.

He continues to struggle with the fluid around
his heart. The fluid continues to form, for no
clinical reason...Stress....35mls on Thursday
and 29ml's on Friday....ahhhhh

The tube feedings have been started at a very
low rate. This tiny bit, is suppose to prepare
the bowel for more...."to bathe" the colon....
I am optimistic he can do this....nervous but
optimistic....

The stroke continues to cause Hollister great
difficulties...His seizures come and go...
His brain is very hurt....

He needs prayers.....

This morning as I watch him...I hate this disease
more than ever....

Enough.....saddness...

Today is Harrison's Birthday...
Reason to celebrate....
I am sure Hollister would encourage us all....

Thursday, August 10, 2006 4:03 AM CDT

The night is slowly turning into the morning..
Hollister chooses to be awake during these hours.
Not sure why.
I think most 19 year olds are somewhat nocturnal.
But,
Most 42 year olds are not.....

It wouldn't be so bad, that he is awake...
but, he is awake and on the move.
He is swinging his legs about in the bed...
and leftie is very busy "picking" the monitors
off his body, one at a time.

It is good to see so much purposeful and intentional
movement. I just wish it were during the day when
the Doctors could see him.
If he isn't asleep when they see him, he plays
oppossum with them.

Healing....I read a guestbook entry that so
specifically ask for Healing from God...
Healing is what has been so heavily in my thoughts
and prayers and heart. I continue to ask God to heal
Hollister, and give him the courage and strength.
Healing what a powerful word.

His seizures have increased over the past day or so.
He is finally getting all of his seizure medications.
It will take a few days for 2 of them to get to a
therapeutic level...I am optimistic when that happens
the seizures will slow down. Any stressors on his
body at this time, really causes him trouble.

The fluid around his heart was 40 ml's today. The
doctor was here about 4 hours earlier than yesterday...
But
I like to think that the new medicine is helping with
the inflammatory process. That is why there is less
fluid. Anxiously, I wait for him to come today.
He is tolerating the catheter placed in the pericardial
space. Infection, is the biggest risk.

In the PICU, less is more.
Today, the foley catheter was removed. One less line
to get infected. That is good.

The G-tube is hooked up to intermitant suction.
The J-tube is clamped off, when medications are given.
The "stuff" being drained out of
these tubes has lessoned and the
color is better. I know....gross...
But, this is all good for his gut. Healing is taking
place...and it is GOOD!

In the night and the dark
there is a lot to think about.

Team Tough needs your thoughts and prayers...
HEALING!

Wednesday, August 9, 2006 3:05 AM CDT

Hollister is awake.
He is busy. He is moving about in the bed.
It truly is a lovely sight to behold...
I do wish he were sleeping, but his movements are
a beautiful thing!

The days continue to be long in the PICU.
Hoping and waiting for the time to pass and
nothing undesireable to happen. I look constantly
for the good....any good.

The x-ray of his "gut", showed no leakage. The rest
and the antibiotics helped the hole to seal. It has
been apporved for him to start to get his seizure meds
through the J-part of the tube, the G-part is still
hooked to intermittent suction. I am very anxious about
his gut. Hard to know what is going on, when you can't
see inside.
His gut did start working late on Monday night...
2 very large poops(diarrhea)...AHHHH
A specimen was sent to check for the dreaded..
C-diff....No results yet.

The effusion of his heart is no better. The Tordol
did nothing to help. The catheter is still in place.
We have to be so careful. An infection in his heart
would be tragic. Tuesday, 80mls was pulled out of it.
Very disappointing..for all. My whole body fills with
anxiety as the fluid is drawn from the heart, and the
totals are noted....

A new med was started tonight, that will hopefully
stop the inflammatory process that is causing this
fluid to fill into the pericardium.
But...
This medication of course does not come without
side effects...possibly severe. Most importantly,
it has to be given into the gut....AHHHHHH
It is very hard on the gut and could cause a bleed.
Talk about anxiety!

He continues on the TPN for his nutritional needs.
He is getting the IV antibiotics and as many of
his cocktail as possible.

His temperature has been better. It does still have
a few spikes.

For all that is going on, he looks pretty good.
Today, Judy and I were able to wash his hair
(in the bed), he truly appreciated this!

His vital signs are stable and for the most part,
he appears to be very comfortable.

To everyone who is thinking and praying for
Team Tough...

Thank you.

We continue to feel surrounded by your love.

Monday, August 7, 2006 6:50 PM CDT

A quiet moment....
Unusual for Team Tough....

Harrison is at Soccer practice, and
Dick and Hillaree are at a Picnic with the
Dowling Swim team....

Hollister is awake, but quiet...
Aunt Judy is tending to his needs...

A lot has happened...

Friday was one of the most horrific experiences....
It was tough. It all happened so fast, that there
really wasn't time to think...Thank you Dr. Dodge and
Dr. Gerdis....You went the extra mile for us on Friday...

Thanks also to Father Kirby...You always come to our
need when called....Thank you for all the kind words...
I still don't understand and I continue to be very
selfish...

Hollister is still very sick...

The fluid around his heart continues and everyday
Dr. Mooradian comes to check...and everyday he is
disappointed...There doesn't seem to be an explanation
for the effusion...The cathter is in place next to the
heart..and so far is working. It can't be in very long
as it will be potential source of infection....
The fluid totals...are Friday 260ml's, Saturday 40ml's,
Sunday 85ml's, and Monday 82ml's.....Way too much!!!

Anxioiusly, we wait and watch...His temperature has
been up and down...tylenol does seem to help.
G-J Tube is to intermittent suction...

The blood cultures that were drawn on Friday...
Came back Saturday night...Positive...
I broke down.
Too many things going wrong.....

He has slept well...
and he has had no sleep....
Hard to know which way it will go...

His right arm continues to tremor and jerk...
The seizures have slowed....Phenobarbitol was
started on Saturday afternoon....

Today, his PICC line was removed and replaced in the
left arm. It was thought that the infection in
the blood cultures was coming from the Picc line.
Hollister again, let the Doctor struggle.

It has been a couple of very exhausting days.
Hollister is worn out, he has been through so
much. Time and rest is what he needs.

I continue to be optimistic and hopeful.
He looks pretty good, considering......
Sunday, he was smiling....and looking around.
More than I hoped.

This is an amazing young man with more fight and
spirit than could be imagined.

He reminds me daily,
how fragile life is...
and how strong the will to live is...

God is Good!

Saturday, August 5, 2006 5:00 AM CDT

Team Tough is in serious need....
We need prayers and lots of them!

From Tuesday on, Hollister has certainly seen some
benefits from the "recipe"!

His Poop bug (c-diff) is gone. A specimen confirmed,
that Hollister was tougher than the "poop bug"....

Unfortunately, Hollister started to have daily
vomitting...Making us all question, once again.....
Is he absorbing his medications.....

Friday morning started with Hollister vomitting,
he is a very quiet "puker"..I didn't hear, until I
noticed around 6am that his mouth and face were orange...
AHHHHH

So far no aspiration....

An MRI, confirmed our worst fears....The stroke is
worse, hard to believe, that it could be worse, but it
is....Everyone is very sad....
But, the day was about to take an unexpected turn...
No one expected or wanted....

It was decided to change his Peg tube, to a G-J tube...
This is a non-invasive procedure done in x-ray....
Hollister wouldn't need sedation.....
but, the original tube was placed in Rochester...
so it was foreign...making it much more difficult to
remove....
And while placing the new one, the Stylet(guide wire)
perforated Hollister's small intestine(his dueodenum)....
What happened next.......
Doctors, radiologist, and surgeons....
A CT of the belly was done. The perforation was confirmed
by all of the above....He would more than likey need
surgery, and surgery needs anesthesia...and Hollister
is very high risk...on a scheduled procedure, not to
mention...emergent.....I was very nervous, but wanted
all that can be done......
The perforated small intestine would immediately take
a back seat with what was seen during the CT....
He had fluid around his heart....
Both of these could be tragic...alone, but together...
It was deafening....
I listened and asked questions....
Hollister was taken to the PICU.
His cardiologist was on call....Thank God....
Someone who new him, his disease and his history...
Dr. Mooradian arrived....and did a heart echo and
decided to go ahead and do a Pericardial Tap....
(Using a Catheter to drain the fluid from around
the heart)
To Hollister's standard, he made this extremely
difficult, even for a talented Doctor.....
He required a lot of medication to get his seizures
to stop and to tolerate the procedure...
A total of 260mls was pulled out from around his heart,(which is almost a can of pop)
the catheter was left in place, so he could check it
this morning and remove more fluid...if need be.

The perforated intestine.....it has been decided to
leave it alone (it is very small)...treat it with the
triple antibiotics......and hope that his body has
the capability to heal...

His vital signs appear to be very stable...
He has a low grade temp, that is being watched...
His belly is soft, his white blood cell count went
down, this morning....

He is having more frequent seizures...Not sure how
this will be handled as his dilantin level yesterday
was "toxic" and the med has been held....
His belly has to rest, and the remainder of his seizure
meds are by mouth(or tube)....
so since yesterday at 10am...he has had no meds.....

He is very critical....

We are all very sad...
But as always hopefull!

Please keep Hollister close to your hearts...
as I fear mine may be breaking....

Tuesday, August 1, 2006 5:38 AM CDT

August 1........

Day 88

That is along time to be in the hospital....

I live it everyday with Hollister and it is still
hard for me to imagine.
I do know, they have been a very intense 88 days...
If you think of any and every emotion, we have
felt it...some two or three times...

A lot has been going on in room 411....

Thursday afternoon, a call was made to the Geneticist
at Mayo...It was suggested that he be started on
TPN(total parental nutrition) this is through the
PICC line. It was also decided to give his GI system
more of a rest, and any medication that could be given
IV would....YEAH.....

Thursday night around 11:0O...Hollister vomitted
and seized..Lucky, again I was looking right at him.
No aspiration! Yeah...
It was again very frightening.

Friday he looked ILL, he looked rough. I was getting
anxious to get the TPN ordered. Apparently, "the Recipe"
for Hollister's TPN was confusing, as it of course was
"different" than "normal" sick folks....After much
fussing "the recipe" was started around 3pm on Friday.
That is how, we in room 411 started calling the TPN,
the recipe.....You know, from the Waltons...
The Baldwin Sister's Recipe....If it was good enough for
the Walton's and John Boy, it is good enough for my
Hollister! So we have high hopes that the "recipe" is
just what he needs....

He continued to have the diarrhea...and by Friday afternoon,
I was very anxious. His seizures had worsened..... He looked tough.
He looked very uncomfortable, sweaty, and sick....
It has been in the back of all of our minds that
he might need to be transferred to the PICU....
Hoping, to avoid....that move....we waited and watched...

He started vomitting and seizing big again around
8:30.....very nervous.....all through the night!!

Saturday, he was nauseous...
He vomitted every chance he could....
and diarrhea to match...
It was a very busy day....

Sunday.....
Was the day I have been waiting for.....
The "Recipe" had been infusing for 2 days....
and I believe it was helping...He was absorbing
some very important medications and nutrition...YEAH

He looked AWESOME....
His seizures had lessoned.
He was purposefully moving his legs...
His eyes looked bright.
There was no poop or vomit...YEAH.....
It was a beautiful thing....

He ate a few ice chips...
and with some assistance he sat in the chair....
It was a great day...

Monday, again no vomit or poop.
It was a good day.
The seizures are still there, but not constant!
He ate a little popsicle with Shawn, and it had
to taste great.....
He was very tired, and has a hard time sleeping.
He is awake a lot in the night....

I am anxious to see what today will bring.
His steps are small, but mighty....

Hollister is again showing us all what Team Tough
is made of. He is a champion.....

Wednesday, July 26, 2006 10:11 AM CDT

Hard to believe I can write a note at this time of
the day knowing that The Price is Right ( or as
Hollister would say The "Rice is Pright"...) is on.
It certainly is no fun without Hollister arguing with me..
"I have to say Bob, I refuse to bid on the crystal...I
don't want to win a stupid prize like that..." Hollister would
then remind me, how the game works...you have to win a
prize to get on stage...you have to get on stage to get to
the showcase showdown....
I know I would tell Hollis, but if you win a stupid
prize, you have to play a STUPID game...and then, no one
who wins the stupid prizes and the stupid games....
ever wins the showcase showdown...
Hollister has always loved Bob Barker. One of his
dreams has always been to be on "The Rice is Pright!"...
I miss him so much!

Today Hillaree and Harrison are spending the
day at Adventureland with Jamie and Nikki. It
should be a fun-filled day for them. The weather
is perfect. It will be nice for all of them to have
a day to forget about life for a while.
It is hard for me knowing how much Hollister would
have wanted to be with them. He loves amusement parks
and all the rides. He spent many good times at the
Adventureland! I sit today with my own memories...

Monday afternoon at 4:50pm....Hollister pooped.....
He did not poop again until Tuesday night at 9pm..
He went 28 HOURS!!! There was excitement in
the room. That meant that he probably had
a chance to absorb some of his medications in that
28 hour period.....hopefully some of his seizure
medications....
Then last night and again this morning he started
pooping again.....

His Tube Feedings are stopped for a few days.
Hoping to give his gut a rest. The antibiotic has
been changed, hoping to get that silly little bug!
A new medication that is live bacteria was
started on Monday, I am anxious to see how it works.

He continues to seize...it is constant, even
when he is resting. He is exhausted. It is very
worrisome to see him struggling. At this point,
I am very aware that anything can happen!

Last Wednesday, when the C-diff, presented itself...
I told Hollister that he was sick. He had a BUG....
I then told him how embarassing it was to have a bug
in your poop, that was kicking your butt. He gave me
the slightest smile.

I also remind him daily, that he is the captain of
Team Tough. That no little poop bug is going to get
the best of him(us)....I whisper to him many times
a day how important he is...how strong he is...
and how much I love and need him....Most importantly,
I tell him...that we haven't met Bob Barker and
been on "The Rice is Pright"....

From Team Tough and Bob Barker....
Remember to help control the pet population...
Have your pets spayed and neutered....ha

Monday, July 24, 2006 6:02 AM CDT

I am not sure where the weekend went.

Hillaree spent the weekend at Clear Lake with a friend
and her family. She had a great time. Thank you for
taking her. It was nice for her to have time doing
something fun away from the Hospital.

Harrison was also busy...He got home Thursday night
with Dick...and he went late night bowling with the
Murphy's....Friday night Dick took him to the I-Cubs
game...and Saturday night he spent at a friends house.

Thank you to everyone who has kept Hillaree and
Harrison busy this summer. It has been a very
difficult time for them. It makes me happy to know
they are having some fun.
Sometimes, no matter your age...it is hard when
life is difficult....

Hollister continues to STRUGGLE! It has been a very
long difficult weekend. He is wearing out.
He is very weak and tired.
The diarrhea, which is exhausting for him continues...
It has been a continuous job to make sure his skin
is clean. That diarrhea is like acid on his skin...
So, it was a very busy weekend.
But, I am happy to report(especially to Edna Mae)
that his skin is intact!
His PEG tube has also started to show a little red
under the disc on the skin, so I have been changing the
dressing and keeping a close on that. It still looks
good, but that can change in a moment.
That C-diff(nasty little bug) in his stools is causing
lots of problems...

The infection has also lowered his seizure threshold.
The diarrhea is also affecting the absorption of
his medicaitons.....So, he is having lots of seizures.
His dilantin level was at 18 over the weekend. Last
weekend it was 30....So, he is getting some extra
meds...
It is an ugly place that Hollister is in now.

But, I have seen a few small victories...

Saturday in the tub, I was drying his face and rubbing
it...Kind of goofy...and he said..."Aw MOM!!!!"
I almost cried, I know his tone was that of...
being annoyed...but he still said Mom...It has been
a long time.
He curled his legs up to him on Saturday and Sunday.
He hasn't volutarliy moved anything in over a week...
Yeah!
Last night, when I was feeling very overwhelmed...
I saw him pick up his left arm and move from under
the sheet and purposefully, place it on top...I
almost cried....

I continue to see Hollister and life is good!

Thursday, July 20, 2006 3:58 AM CDT

Some days here are longer than others,
and today was one of them.

Hollister continues to be awake in the night.
He is quiet, but his eyes are open and he
is awake. It bothers me to know how badly he
needs to sleep. I wish he could talk to me and
let me know what is going on in that brain!

He is still sick.
No vomitting, but there is still diarrhea!!!!
He continues to have fever...up and down...
He is very weak and lethargic....
But,
His stool specimen did show something called.
C-diff...which is some kind of bacteria...
This would definelty make you feel sick!
Good news, bad news...who knows...
The treatment is antibiotics....so hopefully
in a couple of days he will start to improve.

Any infection could prove to be deadly for Hollister
so everyone is keeping a close eye on him. Hollister's
mitochondria need so much energy to maintain any
normal function, that when there is stress like an
infection...it makes everything like coughing and
sitting in a chair much more difficult.

The seizure activity continues, which I believe is
directly related to the stress of the infections.
The Ativan does seem to help. This afternoon Hollister
was hooked up to a 24 hour EEG. This continously records the EEG
and tomorrow a Neurologist will
read it. This
is a little different than at the Mayo Clinic, they
have EEG techs and an Epitologist that are monitoring
it 24 hours a day...
But, we are thankful that Blank has the technology
it has. This equipment is very expensive and high tech.
Tomorrow, we will have some answers on the seizures...

I am very thankful that this ugly little bug
(the infection) showed his face...and the antiobiotics
have been started. In a few days I am optimistic that
Hollis will start to perk up. It is going to take
sometime to get him up and moving.. He has been
lying in bed for so long....

Hollister is strong and determined.
Last week one day, during his work with Amy,
I felt he was "dogging" a bit...so I called him out
on it....Amy told Hollister, that he had gotten in
trouble with Mom....
He looked at her and said...."No, Shit!"

He is in there fighting....
and so are we.

Wednesday, July 19, 2006 5:01 AM CDT

Another Hot day....

and unfortunately another SICK day...

Hollister is awake. He has been very restless these
past days. He has a lot of "gas". The pressure in
his gut builds up and he is very uncomfortable. We
have been venting the PEG tube frequently to release
this air...hoping to relieve some of the pain, hiccups,
and burping...Helps a little!

He continues with the fevers that spike. The tylenol
does seem to help. It also helps with some of the
"restlessness". I can only imagine how sore his whole
body is from lying in the bed, not to mention having
the "flu". I know this young man is far stronger and
tougher than I have ever been.

He hasn't vomitted since Sunday....
But,
the loose stools continue to be a problem...
I am happy to say, that his skin remains intact,
no reddness or breakdown...YEAH....

The seizure activity hasn't slowed...It is very
hard to watch. The fear of what lies ahead is very
real on most days.

BUT...
In the last 5 years, Hollister has had the good
fortune, not to have had the "crude" like this.
So, it is hard to know how long before he feels like
moving.
I continue to be very optimistic, that this too will
pass....and Hollis will continue making progress,
enough to get him home.
He is one tough little Irishman!
Faith Hope and Life....

On a sad note...
Dick's Grandma Minnie died this week. She was
a delightful women. She was fun. I feel fortunate
that we got to spend time with her. She was able to
to visit us both in Florida and Texas. We were also
lucky enough to spend time with her at Barb's on
Fish Lake....Her life was full.
Dick and Hillaree and Harrison are headed to Minnesota
tomorrow for the funeral on Thursday. Hollister
and I are very sorry not to be there with Dick.
Thanks to Kathy and Kevin, for opening your
house once again to my family...

Here's to Grandma Minnie....
Let the perpetual light shine upon her!

Thanks to all who continue to think of and
pray for Hollister. His struggles continue
and the faithful should pray......

Monday, July 17, 2006 3:57 AM CDT

Happy Birthday to
Granpa Jerry and Aunt Jerri.....
Happy Birthday!!!!!

Hollister had a very rough weekend...
AHHHHHH
I tried very hard last week to keep my excitement
to a minimun,( seizure free for 4 days...)
knowing at any moment a very large painful slap to
my face could come...
And Boy did I get slapped....

Hollister did not feel well on Friday...
GI disturbance....Upper and Lower....
Fever....
and seizures.....

Friday, hoping to stop what was coming...
The IV fluids were started continuously
in the afternoon.....
He was resting in the chair....
Friday night a whirlpool tub path..was just
what he needed to relax and head to bed....

Around 2 am.. a linen change...
Was he seizing or cold.....
His fever had elevated and tylenol was given..
He looked pale and sick....
I layed with him for some time and tried to comfort
him. He was unable to fall back a sleep....
He was restless...
Around 3:30-4:00 am..I was sitting on the arm of
the chair next to the bed, in the dark.....
I was holding his hand praying....Asking for relief...
When ever so quietly in the dark, Hollister started to seize,
a grand mal type seizure...
He was laying on his
back and he started to vomit.....
Lots of good things happened in that moment...
Response to the call light was amazing....
Thank you to "our" night girls.....

I realize again in my life the importance of the
Holy Spirit....
Had I not been sitting with Hollister....
His seizing and vomiting may have gone unnoticed...
I am tired...I could have easily been sleeping in the
chair....but...
I was wide awake holding his hand in prayer...
I am again Humbled.........

Saturday Hollister was tired/sedated from all of the
medications he recieved early that morning...
When he awakened that evening, he managed to get a
Bath, and sit in the chair for a quite a while..

Sunday, more seizure activity...
His temperature elevated again...
Lots of lab tests and a chest x-ray in the nignt..
All were OK...

He is awake now, hopefully, this day will be a better
day.

On this birthday of my dad and my sister...
and remembering my Grandma's, also...
This was always a day of great celebration growing up.

Today may we all find something special to celebrate
and be thankful for!

Thursday, July 13, 2006 4:19 AM CDT

Time is flying by...
Today is day 67 of this Hospital stay....

It was barely spring when Hollister came in with
the stroke...
Now, we have missed most of summer....

Hillaree finished up her season playing incoming
freshman softball..Very proud to say they won their
tournament....She had fun...

Harrison is finishing up his summer activities soon.
He has played in a lot of different AAU tournaments.
He has great fun playing and is willing to play
anytime anywhere.

Since Monday morning around 8am....
Hollister has taken some very small steps forward...
(I am trying to keep it all in perspective, as
other small steps forward have lead to giant steps back...
slapping me in the face....)

But...
even small progress is progress...

Sleeping at night is a problem. He is AWAKE alot.
He is not loud or trying to get out of bed...
Resting his brain is still a priority...
When he does sleep, it is peaceful and restful..
It truly is a thing of beauty.

Therapy has started and he is working on holding
that "bowling ball" head on his shoulders...Hard
to believe that is therapy. He is sitting in the
chair, and everyday he is sitting with a little
more control.
He has walked a few steps...I never realized how
thin and long his legs appear...very baby giraffe
like! haha
We have heard his voice a few times...
anxiously we are waiting for him to speak words..
like...
I could eat a 10 piece(McDonald's #11)!!!!
He continues to drink a little Coke, eat some ice...
and Tuesday night he ate 1 1/2 popsicle...Hard to
believe that little bit of frozen colored ice had
240 calories.....
He is tolerating the Bolus feeds with his PEG tube...
(I continue to hate it..and every opportunity I have
I share my thoughts on that with anyone!...hahaha)

I thank God each and everyday for the opportunities
I have had with Hollister. I look deep into his
beautiful blue eyes and I know what a valuable gift
his life is. I feel very lucky and honored to be his
Mother.

Thanks to all who continue to help us with this Journey!

Sunday, July 9, 2006 12:28 AM CDT

Hard to beleive over a week is gone since Hollister
returned to Blank.

Hollister did not make it to the roof to see fire-
works. He was in the wheel chair, headed to the roof
and he had a seizure worthy of medications.......
It was 12:30 before he rested....

His dilantin was 12.

Wednesday he rested. Therapy strectched him and sat
him at the edge of the bed....He again had seizures
worthy of medicating.....

Thursday brought more seizures....and medications....

Friday brought more seizures ....and medications....

Saturday and Sunday more of the same...
He is sedated and sleeping soundly!
I am ever hopeful that he will wake up and
say....."I don't know"...."O....Kay!"

His Dilantin level has been fluctuating this week.
It is very therapeutic yesterday and today....
Dilantin is a very unstable drug and hard to maintain.
Hollister's metabolism is chewing it up like sweettarts...

It has been a very long week here. I am anxious to get
Hollister doing therapies and getting stronger.
I remind him daily, that is his ticket home...

There have been a lot of encouraging things
happening here in room 411. Hollister continues
to drink coke and chew on some ice. Most days
he tolerates sitting in the chair, Hollister
has had some very purposeful moments from
leftie(his left hand), and on occasion we are
lucky enough to get the Hollister smurk.....you
all know the look!

We continue to keep our spirits high knowing that
Hollister would expect nothing less of us.

Tuesday, July 4, 2006 5:59 AM CDT

Happy 4th of July!!!

We are hoping it will be nice enough tonight that
we will be able to get Hollister and Hillaree
and Harrison to the top of the parking ramp to see
some fireworks tonight.
Holiday modification never seems to be a problem
for us..
Unfortunately life goes on....
generally without us...
but life goes on!
We continue to do the best that we can...

Hollister has struggled since his arrival in
Des Moines...
July 1 across the country is new intern/resident
day. Everyone moves up on that day....So, Hollister...
is giving everyone a chance to THINK!!!So far so good...

The car trip was a lot harder on him than I first
thought. On Saturday he slept most of the day. TIRED..
Saturday evening he had some seizure activity..
The Nurses and Doctors were great. They weren't
afraid to give some meds...and got them to STOP!!!!
Sunday, he was still tired..and late in the afternoon
he started to look pale and was very weak. He was
having frequent bouts with the Diarrhea...FUN!
He was making me very nervous.... The IV fluid was
restarted with some Potassium...Around 10pm the
twitching became more like seizure activity and
medications were given...He looked much calmer...
Monday brought, more diarrhea!!! and exhaustion....
He tired to do some therapy...and vomitted about
900cc......with all of this came a temperature of
102.6.....ahhhhhhh
We sat in the cold of the air conditioned room while
he slept!!!!!
This morning as he sleeps his temp is down.
YEAH....

I will be waiting to see exactly what Hollister
has in store for this 4th of July. The roller coaster
ride continues....

Thanks to everyone who was able to attend the prayer
vigil over the weekend. What a generous gift from
all who prayed for Hollis. Makes my heart warm and
tears well in my eyes...Life is Good!!!

God is Able!!

God Bless America
and all who fight to keep us free!

Friday, June 30, 2006 11:43 PM CDT

On this last night of June...
Hollister has come full circle and is sleeping
as Blank Children's Hospital in Des Moines.
My sister Judy and I drove him here from Rochester
this afternoon. It was an uneventful trip. Hollister
did well. We had to stop at a rest area to give him
some of his medications. We did this using his new
PEG tube. It would have been fun to be a fly in the
car listening to Judy and I figure it out. We
did make a pretty good mess.

Our 4 weeks at the Mayo Clinic were like none we
have had before. Hollister is much better today
than he has been in weeks, 8 to be exact. I too
have learned a lot. Not all Doctors are the same and
not all Doctors want to learn all they can about
something new and exciting. Truly, the good still
out number the bad.

We spent part of our time this week saying goodbye
to all our friends at St. Mary's. I am always amazed
at how many people know Hollister. He truly is
unforgetable. We are thankful that we do have somewhere
to go when the need arises. Thank you to everyone
in Rochester who has helped Hollister get home.

Hollister is relaxed. We are at Blank..Home away from
Home.We took him outside tonight to watch some
fireworks..Was a great night to be outside. Was even
better to be with Hillaree and Harrison. We were all
together.

Hollister has a long way to go. Dick and I both
know how bad his brain is hurt. The MELAS is
progressing. We learned almost 5 years ago that
this was a progressive terminal illness. Endstage.
I guess Hollister was endstage when he was diagnosed.
Anytime the Mutant Mitochondria out number the
non-Mutant Mitochondria....you become ill.
Hollister's initial muscle and skin biopsy showed
about 73 percent of the sample was mutated. This is serious.
BUT....
You cannot take away our HOPE..
and with HOPE you have Faith....
and with Faith you have Prayer....
and with Prayer you have Life....
Makes me think Hollister is anything but endstage.

Prayer.....
Saturday July 1st...
St. Theresa's Church...(our Church)
is having a 24 hour prayer vigil for person's
with illness...Especially Hollister. This starts
at 7am Saturday through 7am Sunday...any or all
are welcome..(even you Julie P....)
What an awesome gift from our Parish to Hollister.
We hope many of you have the opportunity to sit
quietly and prayer for Hollister.

We are happy to be back in Des Moines. Blank Hospital
is a very familiar place for Hollister. He will start
his therapies on Monday.

Here's to Hollister, re-defining hope each and every
step of the way....

Thursday, June 29, 2006 3:50 AM CDT

Hollister is sleeping again...
I woke to a loud "MOM"...music to my ears..
Of course no one can re-act quickly enough in
the middle of the night..So a total bed change
was in order...so now he is tucked in nice and
dry and toasty warm...

I on the other hand am up.
So much in my little mind, that it is hard to
shut down...
It is wild...

There is so much to be thankful for. Hollister is
amazing the people here who can be amazed by his
physical and spirtual presence. There are a few who
just don't get him.

When Hollister left the ICU, everyone was very
optimistic that he had done so well. He truly
survived what should have been a fatal blow..
How awesome is that. It was emotional for all
who had helped take care of him...

Unfortunately, it didn't take long to burst
our bubble. The resident that we all know and love
was the first one to see us...and fitting to the level
of care, he was a jerk.....He was then followed by
the social worker, who is known not to be very social...
It is hard to put into words exactly how offensive
this woman is...but sometimes body language can be
very loud....She did remind Dick and I that we need
to be Politically Correct...We have no idea what she
meant...Seems to us, she might not be politically
correct herself...

Yesterday, Hollister had continuous diarrhea. Judy and
I continually changed his bed...We have a pretty good
system. I am pleased to report that his skin remains
intact!
His labs indicated that his Potassium is low...
I guess that would be from the diarrhea....
Which is probably from the antibiotics for the
pneumonia..He had a nice cough..

They are still trying to adjust his tube feedings.
That is a lot of work figuring out what is the best
for him.. He is drinking at least one COKE a day.
We are trying hard to get him to want to eat..
But no luck...
No McDonalds...pizza, candy, chips...pudding...
NOTHING...
I believe he will eat again soon......

Physical Therapy, thought he seemed much stronger
today. He was quite impressed by Hollister.
Considering how long he has been laying in a bed...
He said, there isn't many of us who could be
doing any better..
The Occupational Therapist, thought he looked much
improved today also. She saw the Hollister sparkle
in his eyes, and made the comment, to Judy and I....
"He's Back!!!!"
I am so proud of my boy!!

Hollister is working hard to find words and thoughts..
When it all connects and it is appropriate...
It is good!

We continue to need good thoughts and prayers as
Hollister has a long way to go on this incredible
journey...
I keep reminding myself, what Hollister had said to
us at Blank, when this whole Stroke started....
"I'm not done yet..."

Monday, June 26, 2006 9:47 PM CDT

Day 50!!!!!

The Top 10 list of Hollister's 50 days inpatient:

#10. Spending my vacation at Blank Children's Hospital
and St. Mary's Hospital...

#9. The only flight I will be taking this summer was
on a medical helicopter with no beverage cart.

#8. The only food I am offered at this exclusive
resort is through my new PEG tube.

#7. The only souvenior t-shirts are coming from the
Mayo Clinic research store.

#6. The best nights sleep I have had in the last 50
days came in the Neuro ICU, and I had to be
sedated and intubated.

#5. I still owe Dr. Boonstra $4.00 and he will no
longer be a resident the next time I see him..
All bets are null and void....

#4. Tonight as I sing myself to sleep, I have no
idea where I am...This is the 11th room I have
been in. I have been here, there and everywhere.

#3. I miss Hooters!!!!

#2. Why oh why do I get all the male nurses......
(I know my Mom sure likes them.....)

#1. The Tick!!!!
(Nickname for "my" favorite neuro resident....)

Hollister did get transfered out of the ICU to the
Neuro floor. We have been in 3 other rooms here.
I was very relieved to get him out of the Unit.
On Thursday, when Hollister was moved so quickly...
We weren't sure how things would go.
So, tonight I am relieved.

Time....Time will tell what will happen.
Hollister is very tired and sleepy..Finally.
Hopefully, during this time...His brain will rest!

I miss him. I am anxious to talk with him...
maybe even argue with him!

Dick went home tonight. He needs to be there with
Hillaree and Harrison...and of course Hooch dog.

Today, there is a lot to be thankful for.
Hollister certainly has a long way to go.
Somehow, we need to keep this from going any
farther....

Thank you to all who have continued to lift
Hollister up in your thoughts and your prayers..
We can never say thanks enough....

Sunday, June 25, 2006 10:55 PM CDT

What a day...

It started with Hollister having a "FAIR" night
last night. He fought the ETT all night long.
I was worried about that when they started to
shut the fentanyl off. I was very nervous this
morning.

Dick and I got to talk to a couple of the ICU
doctors..They all seem so smart. One of them was
very interested in the MELAS and Hollister. I like
Doctors and Nurses that appear to be interested.
Talking about Hollister is one of my 3 favorite
subjects!

The tone for most of the weekend had been that
of "doom and gloom"..But, thanks to Dr. Merrit the
genetics fellow, who is asigned to the bio-chemistry
lab this year, he came in on Saturday to make sure
all of the mitochondrial "stuff" was being addressed.
He did an awesome thing for Hollister. He educated most
of the Neuro-Science ICU on MELAS and Hollister.
The whole mood in his room changed. Our thoughts
started to focus on maybe and what if......
There was HOPE!

Today around 12:30, they extubated Hollister. It
was a frightening moment...He tolerated it fine
with some blow-by Oxygen...He is unbelievable.
He has done better than any of them expected.

He is tired. It is a good tired and an awesome sleep.

Not sure what tomorrow will bring. Maybe our
exit out of the ICU...WOW

It appears that GOD is good...all of the time.

Thank you for all of your thoughts an prayers..
Obviously, God hears our prayers...
We have much to be thankful for on this Sunday
night.

He has a million miles to go....
But tonight in this ICU...
at least we are still fastened in our seats
and on the ride!

Saturday, June 24, 2006 11:31 PM CDT

What a long day....

Hollister is still intubated.
The weaning process is taking longer than
we had hoped.
He is totally off the versed drip and the
seizures remain under control.

The Ventilator has been switched to a Bi-pap
mode...This is good. Hollister is controlling
most of his respirations. The bi-pap is on
5... The bi-pap is providing pressurized air
making it easier for Hollister to breath. This
is a low setting, so this is good.

Hollister is getting a very low amount of Fentanyl for
tube agitation. Thank goodness, as I hate to see
him fighting the tube.

He continues with the continuous EEG. The
seizures appear to be under control, but as
the medication levels change, you can't be
too careful.

He does indeed show an infiltrate (aspiration
pneumonia) in the right lung upper lobe. They
are giving three different antibiotics hoping to
cover what it is.

It is any one's guess what Hollister will be like
when he wakes up from this nightmare. His brain
has been so hurt during the last 7 weeks. I am
starting to get very anxious about this. I want
my Hollister back. This truly is in God's hands..
I know I know...
God's will be done...
I would like a vote or at least a chance to argue
with God..
But, for now I pray!!!

Tonight as Dick and I said goodnight to our boy
and now we sit in the family waiting area...I am
nervous. My stomach is very uneasy and my heart
is racing and my mind is wandering...This is a
very real hurt.
I hate night time in the Intensive care unit.
Morning can't come soon enough.

Continued thoughts for Team Tough!!!

Friday, June 23, 2006 2:09 PM CDT

Well, obviously we are not headed home.
His room at Blank Children's Hospital awaits.

When were talking with the ICU Doctor this morning,
He told us that Hollister last night was as close
to "the edge" as he ever could be and make it back.
He never thought he could get that close to death
and make it through the night.
It was a long night....
We were all glad to be here together as our time
with Hollister is limited.

Hollister remains intubated.
He is sedated.
The EEG monitoring continues.
The seizures are stopped....
They are weaning the Versed slowly and increasing
his seizure meds..The dilantin level was low..
He was very dehydrated...causing his Blood pressure
to be very low....
But his heart rate has been very high.....
He also has aspirated stomach contents around the
ETT tube and has a Pnuemonia...
He has a fever, not sure if it is from the pnuemonia
or his picc line or WHAT.....

So...
Today brings waiting....
He is showing no signs of wanting to breath on
his own.
Will the seizures stay under control with the
versed weaning down?
Will his temp come down...will the antibiotics stop
the infections.
The medicine has helped his heart rate and
blood pressure...YEAH...

He looks good.
He does open his eyes...
He hates the breathing tube..

And we who are sitting in the waiting room taking
turns are optimistic that Hollister will show us
all what he and team tough are made of.

Thursday, June 22, 2006 11:55 PM CDT

TEAM TOUGH is in serious need of PRAYERS....

Hollister started seizing around 7:30 tonight...

He has moved to the Neuro-Science ICU..
He is intubated.
Continuous EEG monitoring...
Has Arterial line
And in very critical condition...

Our hearts are broken.

Harrison is with Dick and I and Hillaree is
on her way.
Team Tough will feel stronger when our family
unit is together.

Hollister up until the time of the seizure activity
had a good day. He was happy. He was walking well
with assistance...and importantly...
He enjoyed a 20 ounce bottle of Coke.

I will continue to keep this page updated...

Hollister is a very courageous young man.
His spirit is strong...

Continue to hold him close to your hearts...
as we know God holds him in the palm of his
hands.

Wednesday, June 21, 2006 7:36 PM CDT

SUMMER....

First day of summer, my favorite day of the year...

The longest day of the year...
Where we sit, we don't need any longer days...haha

We moved again today....

The EEG was discontinued around lunch time.
YEAH...
Hollister hates those.

The Neurologist and a different resident...(yeah)
told us there is some seizures, spikes, and electrical
activity...and it is coming from the stroke and
probably a new stroke...
They can tell this by looking where the activity
is in the brain and comparing the EEG's...
Awesome technology.

Not what we wanted to hear....

Dick and I pulled ourselves back up and
are ready to keep going. As Hollister reminded
us a few weeks ago....
"I'm not done yet!"

After we got to his new room,
Dr. Merritt, the genetics fellow stopped by.
He hadn't seen Hollister in a couple weeks. He
thought Hollis looked good. Words that we needed to
hear today...

Then a long hot shower for Hollister...It feels good
to get all that glue out his hair...
He has sat up in the chair most of the day.
He is happy and smiling. He has stood and walked a
little...More tomorrow.

This last episode of seizures and stroke have
again left him weak...AHHHHHH
It would be very difficult for him to make it to
the PMR unit.. Hollister and his disease do not at
this moment in time meet their criteria for rehab...
AHHHHHHHH!!!!!!!

It is hard to know what to do at this point...

Thanks to Amy and Karen(Peds therapy at Blank....)
They called yesterday and said, they were ready for
Hollister to come home. They are ready to work with
him...I believe they said they missed him...haha

That seems to be an option that we can all work with.
The resident here thought that was perfect. He certainly
isn't ready to go home...
If all goes well tomorrow, we will head back to
Blank Children's Hospital on Friday...
I think that will be very good for Hollister to be
in a place that is so familiar...

Hollister is an amazing young man. His spirit is
strong. We are all anxioius for his recovery.
He has gone through so much....

Summer has officially started.
The Ferstl-Farrells are ready to get
home and start enjoying it...

Please keep Dick's Grandma in your thoughts,
she had a hip pinning surgery this week.

"The difference between a good day and a bad day
isn't about what changes in your day.
It's about what changes in you...."

Tuesday, June 20, 2006 11:51 AM CDT

Happy Birthday to Hooch Dog...
Our beloved Hoochie is 7 today.
Hard to believe 7...
Hooch is a mark of time for us...
We got Hooch for the kids...especially
Hollister...
He needed a Buddy.
Seven years ago, Hollister had his first
seizure and found what it was like to be alone..
His friends....after 5th grade no longer were his
friends....So like all good parents we got a puppy!
He is at home lonely for his family to be intact.
He will have a birthday celebration when we are all
together to celebrate..
Happy Birthday to Hooch Dog!

The EEG did indeed show seizure activity!
Coming from the right side of the brain..
Darn Stroke!

We have moved from the PMR unit back to the
Neuro floor, the EEG unit. The electrodes are
being glued to his head now.
Hopefully, in the next 24 hours his brain will
slow back down and the medications will get control.

We are anxious to get him through these seizures
and back to PMR. He had been trying to work hard.
No wonder his difficulties were increasing. Hard to
function when your brain is seizing.

I am not surprised his steps forward have been very
tiny baby steps...His steps back have been giant!
There have been so many errors made in his medical
care, it is amazing that he is as strong as he is.

Hollister is tough...He is strong...He is faithful.

Harrison and Dick are still here. Harrison is good
medicine for Hollis. They have always had a healthy
brotherly love! They argue and fight like cats and
dogs and love like brothers. It is awesome.

We all continue to focus on the good things and there
are still so many good things...
Our sense of humor is intact and we laugh at all that
we can. Hollister smiles and appears to be comfortable.
He can hear and see some...AMEN!!!
Hollister's body is very strong.

We continue to pray and have hope!

Monday, June 19, 2006 12:23 PM CDT

Happy Belated Father's day...
Especially to Dick and my dad Jerry.
First Father's day to be hospitalized...
I think we have now officially been an
inpatient for ALL holidays at least once....

Hollister is finally tolerating the PEG
tubed feedings. They have him on the nocturnal
feedings, and unhooked during the day. He is still
getting some IV therapy during the day.
He has tolerated some ice chips and an occassional
drink of Pepsi...ah...I know he likes Coke...

His medications are also being tolerated..The nurses
have done a great job of spreading the massive amounts
of pills through out the day. There is a whole lot
of crushing going on.

We have run into the usual amount of insurance
CRAP that is a constant in our lives..The insurance
company wanted us to go home today...CRAZY...
We will be lucky to stay through this week.
It is very stressful to think that strangers continue
to dictate the care the Hollister recieves. He is a lot
of work and can't even ambulate without a lot of help.
I hate to think what it will involve taking him home.
He can't walk , communicate, or process what you are
saying...AHHHHHHHH, not to mention his new cares....
Taking care of that PEG tube and administering his
medications....Wonder what the Insurance people think
that will take or cost...

Hollister has stepped back again yesterday and today.
He is weaker and is having more trouble even standing
He is having some movement in leftie that is very
disturbing. Leftie is having lots of problems...
Our favorite Neuro resident came for a visit and
thinks maybe it could be seizure acitivity and this
would explain why leftie is so weak...An EEG is
planned for sometime today.

Some of these changes we noticed late last week and
then throughout the weekend. Makes me wonder if
when the Levocarnitine was with held for 6 days if
this had anything to do with the changes. The now
famous Neuro resident forgot to re-start it after the
PEG placement on Monday...It was re-started on
Saturday afternoon.....SORRY...
SORRY...Levocarnitine is the back bone of treating the
MELAS...He has been on it for 41/2 years..He has never
gone a day without it...let alone 6....Levocarnitor
works at the cellular level and simply put, it
carries protein across the cell wall to the
mitochondria for energy...Now, physical changes.....
Makes us all wonder...

We are all tired and frustrated at this point.
Hollister is so fragile and it seems that at every
corner, someone is pushing him unjustly.

The PMR unit has great nurses and awesome therapists..
Thank Goodness!

Hollister, when he was at the Blank School, became
friends with Joel. Hollister and Joel had a lot
in common, other than being "sick' kids. They laughed
a lot, they loved to eat Mexican food and go to
movies...and Joel loved my scotch-a-roos.
Joel, spent the better part of last year at the
St. Judes in Memphis, and he came home about 8
weeks ago. Hollister missed his friend a lot. When
he got home Hollister was hopefull they would eat
and go to movies, resume their friendship. Hollister
did get to see Joel and they spent time laughing
and talking. When Hollister left, he was sure he
would be OK...He believed in God and God can do
miracles...He loved his friend. Well, the miracle
we were looking for didn't happen. Joel, who is
now cancer free is soaring high in Heaven as of last
night. Joel and his parents have incredible faith.
They are good people who will bury their only child on
Thursday..
I am saddened and heartbroken at this moment. I want
so much to go and sit with our friends and be there
with them. I want Hollister to stand as a man and tell
them how great he was and how much fun they had...
I want to tell Hollister and he will know.

So, on this Monday think of Joel and his friend
Hollister and all that has changed in the last
8 weeks.

Joel Ihnen...
Let the perpetual light shine upon him!

Wednesday, June 14, 2006 10:18 AM CDT

Day 38...

Rehabilitation begins...
And a very rocky start it is...

Hollister's wonderful new "PEG tube" has been
nothing but trouble...VOMIT appears to be the
word of the week. It started on Monday after the
placement and continues each time his meds are
given...He even vomitted at 3am while his "feedings"
were going. I uses the term "feedings" loosely as he
hasn't kept much down...

I have reminded everyone who will listen,
(as the days go by this is fewer and fewer...ha)
that he NEVER puked with the NG tube feedings.
He was able to keep all of his very important
medications down....and his tube feeds...

The transfer to the rehab unit was rough on
Hollis. It took a lot of his energy to get
settled. He started the turning his head to the
right...and babbling...A step back...again...

When he has to use his enery throwing up,
his brain again is shorted. He can't work
as hard as he needs in therapy. It makes the
situation difficult.

My newest analogy of Hollister's energy is....
If he only has $10 worth of energy for all day...
and he uses $7 for vomitting...doesn't leave
much for the day. He has no reserve account to
pull anything from...His brain of course will be the
first to starve for the energy...STROKE!!!!

We are happy to be in the PMR unit. This is a
comfortable familiar place. Nurses and therapist
remember him...YEAH...
Everyone works so well together, wanting the best
outcome....

Today...Hollister started at 0730...and finishes
at 4pm...A full 3 hours of therapy today...No
rest for the weary! We continue to remind him,
that therpy is his ticket out of here...

Team Tough continues to need many thoughts
and prayers....

Tuesday, June 13, 2006 5:27 AM CDT

Hollister did get his PEG tube yesterday.
He was back in his room around 10 O'clock..
He was sleepy and in a lot of pain. That is
very hard for me...Pain med choice..
Rectal tylenol...I know for me, that might not
be my drug of choice... But for Hollister that is
about all he can have.
Four hours had to be waited, until the tube could
be used...So, no meds until 1:30..but this was
actually 3:00...he was starting to get very jerky
and having mouth twitching with out any seizure meds
for that long...I was starting to get a little
nervous..
It talkes a long time to crush all of his medications,
It certainly isn't a job for the weak..ha! Then, He
had some kind of GI disturbance and started with
diarrhea in the bed along with copious amounts of
urine..I felt very sorry for his nurse, she was
working hard in a difficult mess. She too, wanted to
get his meds in..
When she did get the bed clean, she got his meds in...
YEAH
Through the "new"tube...and then he vomitted, and
this lead to the diarrhea and our course peeing...
It was endless.

Finally, the cycle stopped!

When I saw the "tube"..I immediately, felt sick!
It is in the center of his gut...I have never seen
one there..It is BIG, long and obtrusive. I am very
sad that this is in Hollister. Hoping to talk with
Hollister's GI doctor about it, I need it all
explained to me....
Other than the pain, which the tyleonl continues to be
given around the clock..We have had a couple of really
good nurses..YEAH
He doesn't seem to notice the tube. I am sure he will, he is
tolerating it well. So, I am trying to do the same.

Hollister continues to amaze us. He is having less
and less of the "episodes" of staring off to the
right. His speech has improved a lot since yesterday
morning. I am sure it is much easier to talk without
a tube in your nose to you stomach..
As I walked out of the room, I heard him say to the
nurse about a lab draw..."Don't bother me, I don't
need it."..The words were clear, and I asked two
other people in the room and they did heard it too!
I am excited to hear words with clarity....
Importantly, it shows personality!

I remain ever optimistic. I continue to see my
Hollister there. I try continually to get
everyone to see him too. I am reminding all the
staff, that this is "The Hollister"!

The Neuro Resident and I had a nice visit yesterday.
I reminded him about of lot of important things...
Not only on how a Doctor should think, and act...but on lots
of helpful patient care ideas.. Dick was sitting on
the couch, trying not to laugh out loud.. Dick thought
I was making him nervous..Imagine that.
The best part is that he has no idea, that I am a
mother and a nurse.

Lucky for him, the Chaplain came in and he could
escape! The Chaplain is our favorite...Warren...he is
awesome. He is always there for us. He is kind,
sympathetic and compassionate. He gets Hollis...
I am always comfortable with people that "get"
Hollister immediatly...We were happy to see him. He was
gone last week, or he would have met the helicopter.
Our favorite Child life specialist..Jen came in
yesterday also. Nice to see familiar faces....She
has always been helpful with all the H's....

Today, there is a possibilty of a move to the rehab
unit...YEAH....That of course is one step closer
to HOME!

We remain faithful and vigilant!

Thanks to Nancy and Nancy....Friends of mine, who
visited yesterday...Just at the right time. It was
an awesome dose of Good Medicine...Thank You!

Sunday, June 11, 2006 2:14 AM CDT

Another eventful day here.

Hollister's Saturday started around 5am...
with a loud THUD and a fall to the floor.
He was trying to get to the bathroom, I
hit the call light...unpluggled the cords and
THUD he was on the ground...

He must have hit his face on the end of the bed
as his lips and teeth took the blow.
Dr. Wilson (our favorite Dentist) if you are
reading this, I am very worried about his front
teeth. The bleeding wouldn't stop (because of the
heparin shots to his stomach) and his teeth are hurt!
His lip has a HUGE laceration in it. He was very upset
all morning.
Of course he won't let us look at it, because it
hurts. We did start giving him some tylenol
through out the day.

It was a day of rest for Hollis. A shower this
morning(which wasn't very peaceful)...and he spent
most of this day resting. No napping, but good
resting. He was very sad and angry all day.

Around 4pm, he did get up and sit in the chair. He
was a little more animated. I tired to put an ice
chip in his month. He was very mad and yelled
at Hillaree. It was awesome, even though it was me.
It is nice to see an occassional appropriate reaction.

We did watch the stanley cup game tonight, in hopes
that a little hockey might bring him back..No such
luck. I can't wait for him to know how important
these games are. He has no idea his friend Toby, has
been called up to Edmonton. He even played in 2 play off
games and scored a goal. Those games have been taped
so he can experience them. He will be so excited.

I feel fortunate each day when a little piece of my
boy shines through. I always want more...But even
a smile or to catch a glimpse of him inside his eyes is
enough to keep me going.
I am lonesome for him and miss him terribly!

He did indeed walk down the hall tonight. He walked
farther at one time, than he had all week. I am
proud.

He just got up to the bathroom, no fall. Tonight we
have a "sitter" in the room. Weird to sleep with
someone watching. I got up to help him get to the
toliet. He is sleeping again...YEAH

Channel 13 in Des Moines taped a story on Hollis
earlier in May. I guess people had called the
station and wanted an update after graduation last
year...It didn't work out until know...
Clearly not our best sides. This was taped over
memorial weekend, we had already been hospitalized
a long time...
The link to the story is:
www.whotv.com
the story is listed as The true test of Faith.

Hollister of course would be embarressed by this
attention.

We remain hopeful that his brain will rest and some
quality of his life will return. I know on that day
it will not be taken for granted.
Hollister has continued in this journey to teach so
many great lessons. Forever, I am
humbled!

Friday, June 9, 2006 11:59 PM CDT

It is thundering and lightening and raining...
Hollister is sleeping so peacefully...
All appears to be right in the world...
at least in my very small corner.

There certainly has been a lot going on here.

Hollister has endured a couple of rough days.

My two favorite words have been brought to life
again this week...
GENETICIST AND EPITOLOGIST!

The Eptiologist have been busy reading Hollister's
EEG and thinking of his seizure control medications.
The continuous EEG was discontinued around lunch time
today. They are feeling better that the seizures have
stopped, but there is still a lot of "electrial"
activity in his brain...The STROKE!

The Geneticist has been into see Hollister everyday.
She has been thinking alot about what is going on
with Hollis. She has been analizing his data all week.
She thinks Hollister's metabolic situation is under
control. She continues to give us much hope.

The Rehab Doctor(PMR) thinks Hollister will be
able to get to the Rehab unit on Tuesday. This is
exciting. We are trying to move forward. He has
tried hard to get up and move for the therapists.
It will not be easy, but we are going to try.
He is weak and who knows what new damage the
stroke has done.

Monday....with hesitation in my heart..
Hollister will have a PEG tube placed. (this is
a permanent feeding tube in his stomach.)
I will write more of this on another day.

Last night Hollister did say, that his head
hurt. This is what we have been worrying about.
Does he have pain and can't tell us...

There are times when he is speaking..It is clear
and accurate. I live for those moments and
remember them all day.

There are also times, when it seems Hollister is
a million miles from this place. He is babbling and
looking to the right. Breaks my heart.

I continue to remain optismistic that Hollister
is still in that swollen brain. I look into his
beautiful blue eyes and I am lost!

It still seems that what happens with Hollister's
brain is completely up to GOD.

PS...
Shawn's half eaten taped bag of Doritos did
indeed make the trip...Hoping and waiting for the
day that Hollister wants to eat them.

Thursday, June 8, 2006 6:26 AM CDT

Yesterday was a busy day for Hollister.

First and foremost he got a shower..Which always
helps with hsi "Rooster Hair". He always looks better
and I think feels better after a shower and clean
teeth. He continues to need a lot of help with all
that is done.

The roller coaster continues to be a rough ride.

The activities of the day included..

Around noon today, a Neuro resident, came into
see Hollister. We had met Monday night in the
ICU. He made me very nervous. When he came in
yesterday, I ask him why he had followed us out
of the unit..He said, he was Hollister's doctor.
He then preceded to tell me, that Hollister would
not be a canidate for Rehab, that he would be too
much work at home, and that he would need to go
to a Skilled nursing facility.
I immediatley wanted to PUKE. He made me sick.
Hollister was sitting there and I know by the look
on his face, he heard what Dr. Doesn't know us very
well said.
Needless to say, he hurt us.
But, what that foolish little resident doesn't know
is that we are TEAM TOUGH...and we are going to work
hard..His brain may be hurt, but...his spirit is strong.

An Evaluation by PT/OT. He did us all proud and
walked and walked. Michelle and Deb were happy to
see how strong he is. This is a testament to how
hard he works. We are so proud...

After therapy, Dick and I wheeled him to the
courtyard to enjoy some of the beautiful weather.
It was good for both of us to get out. We all
needed a break. We wheeled him all over the grounds...

Dr.McGrann(genetics) was there to see him when we
got back to the unit. She is definetly on Hollister's
Team. She is so compassionate to him. She talks to him
and watches him. She is optimistic that Hollister
can recover. She is carefully watching the metabolic
functions. She is thinking and testing lots of
labs and levels.
Dick and I feel a sense of peace when she is with us.

The Epitologist(they study seizures) came to see
Hollister around 6pm. She was very thorough with her
thoughts. An action plan is in place for ANY
seizure activity.. This expert also appeared
very optimistic. This is very relieveing.

His blood sugars have been running low..60's-70's.
His fluid intake with sugar has been modified.
His is tolerating this well. His tubefeeding has
also been changed. A blood sugar is the simplest
metabolic test.

Hollister finished out his day with a long walk with
Dick and I. He did great. He appears happy most of
the time. He is singing a lot. He feel asleep aroung
10:00 last. It has been a beautiful sleep.

Today, more evaluations...
The foley catheter(to his bladder) will come out
today.
We will see how well he can Pee.

We ask that you all hold Hollister close to your
thoughts today. He has a lot to prove...
Team tough if fighting hard.

Wednesday, June 7, 2006 9:17 AM CDT

What a day it has been.

Hollister sleeps this morning..
He sang himself to sleep around 12:30 last night.
He is resting comfortably..

He did indeed move to a new room last night...
New is right...we are in a totally remodeled wing
of St. Mary's. Hollister is in the Domitillo building.
This is the building located next to the Chapel.
The floor is a Neurological floor. Strokes are us...
is there moto..haha
The new rooms are comfortable and very high tech.
It is an ADULT floor, which was scary...
But..
This is a "Family centered care" floor. Which is
what we are used to a Blank...Whew....
There is a place for me to sleep and they encourage
me to do so...YEAH

Yesterday, fate brought one of his OT's from previous
stays (Julie) and us together. We were waiting for the
same elevator....She was happy to see us, but sad that
Hollister is so sick...She informed the PMR(Rehab)
folks that we were in house...Good for Hollister..
So, Deb(PT) and Michele(OT) came right up to see him.
It is comforting to know that the same good folks will
be taking care of him!

We are waiting to hear about all that has been tested.
His Dilantin Level is very high..
Most of his labs are coming back to where genetics and
neurology likes to see them.
His EEG will be discussed today. There was significantly
less activity, so we were able to leave the unit...
YEAH!!!

Dick and I continue to be hopeful and faithful.
God is good and his love for our Hollister is
ever present.

Monday, June 5, 2006 11:20 PM CDT

Finally an update...

Oh, what a week it has been...

First and foremost..Hillaree did indeed graduate
from the 8th grade. It was a nice service. It is
hard to believe that my little Hillaree is heading
to high school. She has been with these same
kids for 10 years.. She certainly did not always have
an easy time. When Hollister got sick, her life became
increasingly hard....But she survived and she is
Awesome! In spite of it all.
I was fortunate to have made it. Thank you Diane and
Steph for allowing Hollister to entertain you.

School ended on May 31, Harrison is now officially
a middle schooler. This also makes me stop and say
how did this happen.

June 1st Harrison got the cast off...Yeah...One thing
is for sure, the cast didn't slow him down at all.
Baseball and soccer continue!

Hollister has certainly struggled a lot this past
week. He just can't move forward. Lots of things
happening that couldn't be explained. I am reminded
daily how much I hate this stupid disease...
MELAS SUCKS!!!!!!!!

The MRI this morning showed what we knew...
The stroke has grown....
It was decided to transfer him to St. Mary's
(the Mayo Clinic). Liz and Jamie flew with Hollister
this afternoon, about 1:45...
Again, it his hard to explain how horrible this is.
Watching the helicopter go out of sight...Is something
no mother should ever experience...I could start to
cry just thinking about it. It was hard on the kids
also.
Getting in the car, knowing there is a 3 hour drive
to get to him....Now, knowing there is 3 hours between
my Hillaree and Harrison. PAINFUL!!!

Hollister is resting..He is in the NeuroScience ICU...
This certainly is the place for him to be. Unfortunately
for me, I can not stay in his room. This is a first
for me...and believe me this is hard. Dick and I will
be headed back in a moment to see if we can see him...
Not sure exactly how far we can push the rules....

What we have learned....
His brain is very hurt...hurt...hurt...hurt...
This is his 5th stroke...
And, I do know how lucky we have been...I get it...
But as everyone knows, I am greedy and I want more!

The Neurologist have been assessing and gethering
information...We will see how the night goes...I
am not sure what tests will be done...

The geneticist....She spent a lot of time with
Hollister. She sent lots of blood to see exactly
metabolically where he is. She will decided then
what can be done. I felt somewhat optimistic after
her visit.

Thank you to everyone at Blank that went the
extra mile for us. Hollister's illness is so
unknown, this makes things very difficult. As
time goes on, Dick and I get a little nervous.
Thanks to all of our patient advocates....

Thanks to Father Kirby...Your being with us, means
so much. I am comforted as you prayed with Hollister
that he was so calm. This is all good.

To everyone helping with Hillaree and Harrison
so that they may have some normalcy in the lives....
THANK YOU!!!!

TEAM TOUGH is in serious need of your prayers....

Monday, May 29, 2006 5:21 AM CDT

Happy Memorial Day..
First Holiday of the Summer...
Yeah...
As usual...Hollister prefers to spend his Holiday
in the hospital....

Hollister and his strength and spirit continue
to amaze me. He is tough...

Friday afternoon, it was noticed that he was having
some facial/mouth twitching...something new....
Shawn(speech pathologist)...was working with Hollis
around 4pm on Friday...and noticed this to be seizure
activity...Shawn immedietly informed the nurses...
who brought the residents...and it was decided to
start his Dilantin again...(the level was down to 23)..
The dilantin was given around 7pm...he was so tired,
and against my better judgement...I let him sleep..
He slept until 9pm.
He woke up and went to the toliet. He was so agitated
and moving toward the shower...So, Dick and I load him
in the wheel chair and take him to the whirlpool tub.
(we do this most nights before bed...wish this tub
was at home...)He was clearly not himself. The nurse
and I talked and dedcided to give Ativan for the
agitation...after the tub.....
As expected he got quiet in the tub..He was no longer
agitated...because he was SEIZING...How stupid am I..
(no answers please...)
With some help, Hollister was safely(and clean) returned
to bed. He continued to seize..
Hollister had a CT around 11pm...

This showed that the stroke is still HUGE.

In those moments on Friday, Dick and I were again
reminded how quickly things change. Hollister contines
to be very fragile. We have known this for a long
time. We also know how unprepared we probably are.
My heart aches, my brain hurts and my soul weeps at
what lies ahead...
We are Team Tough and we continue to pray!

Hollister continues to sleep at nights and is
awake during the days.
He has had 2 better days.
His speech at times in understandable.
He is strong and walking with minimal assistance.
He is not eating or drinking at all. I am anxious for
this to change!

He contines to work hard, but as usual I am greedy
and want more...more...more...

Here's to another GOOD day.

Friday, May 26, 2006 5:26 AM CDT

Hollister sleeps....
He fell asleep around 10pm and is still
sleeping sound....The nurses and I have been
slightly confused by this activity. Until last
night, it truly had not occured on this shift...
It truly is an awesome sight...Here is to his
brain resting...

It has been a very trying week here in room 408.
Hollister is physically relaxed in this room.
He is not trying to get out of bed and out
of this room. This is good....

Hollister as expected is not taking the easy road.
When he was born, he was 2 weeks late and even then
had to be helped out...He certainly wants to do
things on HIS schedule.

On Tuesday, it was determined he has a UTI(urinary
tract infection), not a big deal for most of us...
Uncomfortable....but in Hollister this proves to
be a problem...Not knowing what antibiotics he can
have and what he can't have...Hollister sits in such
a tight spot, there is no room for error.
The residents did figure this out after much
searching..
Antibiotics have been started...but his fever
continues to spike...WHY....

Wednesday morning early, he had an EEG done to make
sure he isn't having more seizures. Hollis likes to
have seizures that are not visible...
His IV infiltrated and his hand and finger and palm
swelled and swelled. He even had 2 blisters.
It still looks angry... Hollis kept gently touching
it, trying to figure out what happened.
The PICC line was replaced in the afternoon.
It went in perfectly, and was able to be placed
again in his right upper arm. Hollister doesn't
have much feeling there, so he leaves it alone.

Lots of lab work was done...

Wednesday night he slept...
9:15 pm to 3 am....Yeah...

Thursday....
It was determined by the lab work, that his
Dilantin(seizure med)level was way too high...
It is puzzling as to why now is it high. It was
normal when he first arrived...He has been taking
the same dose as he does at home...A high dilantin
level could be contributing to his changed
mental status....

He continues to yell out...sometimes constantly...
His language has changed and for the most part it
is not understandable.
It is very alarming to everyone here at Blank
Hollister has so many friends here.
The Doctors, residents, nurses, child life and most certainly
his therpists....It is not a common sight for them to be in here with Hollister...
Coaxing him to move or eat...They have been with
Hollister the entire 4 1/2 years.
It is easy to see on their faces just how they feel about this young man...

To everyone this week that I have asked to "THINK"...
Thank you...
and don't stop, he is a long way from
turning the corner.

For this moment, he sleeps. The most beautiful
sleep I have ever seen!

Today is my Parents 50th...Weddding Anniversary!
What an accomplishment. I am so proud of them.
A milestone most can't achieve. There lives
certainly have been full of many ups and downs.
I know how hard it is on them to see Hollister
(and I) suffer...I appreciate all that they do for
us.
So today, raise your glass and toast my
parents...Jerry and JoAnne!!
Congratulations.....

Tuesday, May 23, 2006 4:07 AM CDT

Hollister found his room. On Saturday afternoon,
during his wild eyed walking and manic moments..
He walked into room 408 and said, "this is my room"
He walked over to his chair and sat down. He appeared
very content....So we are now in room 408.
He is more relaxed in this room.

The sleepless nights continue.
He is exhausted. His brain has not had
a chance to rest... He is using all his
energy for non-essential things...
This continues to break all of our hearts.
Unfortunately, for Hollister he has
deteriorated a lot this week.

It is hard to write exactly what is going on with
him. He is talking non-stop..It is factual but
not part of a conversation with anyone
(at least not in the room). He doesn't acknowledge
anyone or speak directly to us. He doesn't know us.
He keeps asking me to get his Mom. Please help him
find his family, he knows they are here.
For the most part he appears to be happy and not
complaining of pain.

Today, an IV was started. He is still getting the
tube feedings. I am hopeful this will help with his
brain. Sugar, I am hopeful will let the mitochondria
in his brain...take a rest.
We all remain optimistic that when he rests his
brain will start to heal. The goal is to find a way
to let him sleep. So far, that hasn't happened.

Hillaree and Harrison are suriving amazing well.
Kudos to Dick for keeping them going. He does a
great job getting them to their activities.

As Hollister continues to struggle, I realize how
much I miss him. I haven't been able to talk to him
for three weeks now. I am very lonely for him.

Remember...

THERE IS NOTHING MORE IMPORTANT THAN TODAY!!!!!!

Saturday, May 20, 2006 4:26 AM CDT

What a day it turned out to be...

Again tonight we are awake....

Hollister had a very rough morning...

He didn't fall asleep like I hoped. We remained
in bed only a few short minutes...
I didn't even have a chance to lay down..

When he sat up and slid to the end of the bed,
the tape on his PICC line stuck to the bed and
pulled it out. Not good. So his IV access and
easy lab(blood) drawing is gone. This is a very
weird thing to have happen.

He never did sleep last night. The morning became
more and more difficult. He does not like his room.
He refuses to stay in here. He keeps telling us
this isn't his room.

At noon, he finally dropped. He is exhausted.
He was up for 24 hours straight,not to mention
how sleep deprived his is already.
He feel asleep on the couch in the Lounge/Play
area. He slept and slept..and woke up tonight
at 11pm...11 hours, not bad but not enough!

Now, he is awake and talking to no one about
nothing! He is much calmer than last night.
He is in his room, I am hopeful I can keep him here!

Update....0530...Hollister is awake,
wild and out of bed..His heart is racing
and his mind is going a hunred miles an
hour...No sleep!

Team Tough continues to need your thoughts and prayers..

HOPE!!!!!

Friday, May 19, 2006 4:22 AM CDT

Hollister continues to struggle.
His brain is working overtime...
My heart continues to break...

Wednesday he was exhausted...
He worked very hard in therapy and
he walked and walked and walked...
He wouldn't sit still!
He showed us lots of encouraging things..
He ate applesauce and drank some coke...
He talked, laughed and truly brightened all
of our days....

Wednesday night Dick and I got in him the
whirlpool tub and he soaked...By 11:00 he was
clean, warm and sleepy...He slept....(and so did I)
He slept and slept...He finally woke up around
noon on Thursday!

His mind has been on the go since that time..
He is awake and still going strong.

It has been a difficult day here. He is agitated
and isn't hearing or seeing well.

He had no idea who I am. This is very hard.

I remain hopeful that his brain is exhausted
from the stroke and all the swelling and TIME
will be on our side and any moment now things
will change...

Hollister continues to be strong. I pray with him
and for him continually, reminding him of his Faith.
His spirit continues to shine!

Thank you to everyone who continues on this journey
with us. Your thoughts and prayers are powerful!

Thanks to Mrs. Johnson's Class in Jackson, MN.
This group of kids checks on Hollister and his
progress regularly. He enjoys your notes...

I need to get Hollister back to his room.
I am hoping he is tired. Around 1:00, I took
him out to the TV room to sit up for a few hours.
It helped settle him down.
Here's hoping he can sleep this off!

FAITH
sees the invisible,
believes the incredible
and recieves the impossible.

Wednesday, May 17, 2006 3:39 AM CDT

Another night at Blank with no Sleep.

Hollister continues with his restlessness and
confusion at night. He is exhausted.
MOM
When do I go home?
MOM
Where am I?
I want to go home.
DAD
Where are my parents?
MOM
This continues all night long...

It is heartbreaking!

He is tired and weak.
He is having difficulty processing in his brain.
This is causing him problems with speech.
He is verbal and his words are clear.
He can't answer questions..(processing)

Physical therapy is working on strength.
He has a long way to go...
Hollister has always worked hard and continues
to do so.

It appears to all of us at times that he does have
some vision and hearing. Time will tell, what is
hearing and what is processing in the brain.

He is tolerating his tube feedings well. He is
getting lots of calories... Time will also guide
us on a permanent feeding tube or not...

He had video swallow study today. Of course he was
tired. But, he did swallow liquids without aspiration.
This is good news...He didn't pass with food...
In his defense, barium with graham crackers isn't
that appealing....

It has been two weeks since we have been
able to talk to him...Two weeks is a long time..
I am lonely for him. I am anxious to get my
Hollister back. We spend all our time together.
I miss him.

It is hard to watch him struggle.

Hollister continues to need as many thoughts
and prayers that are out there. His journey
is a difficult one.

Sunday, May 14, 2006 1:09 PM CDT

Happy Mother's Day...

Same song second verse....

Hollister and I spent Mother's Day inpatient
at Blank last May.

He made it 1 year and 2 days between his
admissions...I am so proud of how well he
has done. This past year he has worked harder
than any before.

He did get moved to the floor in the last
hour or so. We were ready to leave the PICU...
A week is long enough!
The care he recieved in the last week has been
awesome...

He has had a couple of rough days and nights...
He is not sleeping at night and is
trying to get up, pull the monitors and feeding
tube out.. He is confused and not with it..

His brain is still very sick. We need to be patient
and wait for TIME... Unfortunately, I have never
had much patience and have prayed for it since before
Hollister was born....
What I want is for him to wake up, talk, see and hear...
and Move.. and of course...I want it NOW...

Hollister's journey continues as always....
It is a journey between God and Hollister...
(Hopefully, God has more patience than I have....)

Here's to a Happy Mother's day...to all..
(and to my own Mom...Happy Mother's day.....)

Thursday, May 11, 2006 9:39 AM CDT

Team Tough is requesting more prayers....

Hollister is resting...
He appears comfortable.

Yesterday morning...early...The word nutrition
popped into my head...Everyone agreed...
The goal was to have tube feedings through the
tube already placed in his nose...but...
True Hollister style..why take the easy rode...
When the head of the bed was raised and the
tube feeding was about to begin....
NAUSEA and dry heaving....This lasted a couple
of hours....No fun...He was given some
Zofran(an anti nausea drug) and he rested
some more...

TPN(Total Parental Nutrition) was started through
his PICC line.. He is getting nutrition and
calories...that is what counts...I do remember
from previous events that TPN is not as good
as tube feedings for Hollister..
Today we are hopeful that he can tolerate
slow tube feedings.

He has been opening his eyes and moving his arms
and legs..This is very encouraging to everyone..

He has said...Mom....I feel sick..and
I HAVE TO PEE. As his Mother, I am proud and
hopeful!

His nurse's yesterday....used two very promising
words...that I really like...
He movements are appropriate and purposeful!

Shawn(his Speech Pathologist) said his words had
Communicative Intent....

This morning for Karen(his Physcial Therapist)
he held out his arms for MORE range of motion...

I believe these are all things to be encouraged by!

Hearing and seeing are questionable...but I believe
he has some of each...and his nurse said that
if he didn't there were two many co-incidences...

Just this morning...I was sitting in the chair by
the bed, talking with Karen..and I said that
Hollister's Mother was crazy...and He smiled a huge
smile...Co-incidence...I think Not...ha

Many Positives things to focus on and be
Thankful for.

Hollister has a strong spirit and a desire
to live...

We continue to wait as his brain is resting...

Thoughts and prayers...
We are thankful!

Wednesday, May 10, 2006 6:48 AM CDT

Team Tough still needs prayers!!!

The MRI showed a large infarct(stroke) in the
right side of the brain. It seems at this
point that most of his brain is stroke.

He did aspirate some of his stomach contents
into his Right lung, causing a pneumonia..
He has been fighting a high fever as a result.

He has been resting most of Monday, thanks
to the medications. Rest is important for his
brain to recover...(and Mine...)

He did get a PICC line (a central line for IV's
and Blood draws)...NO MORE POKING!! This is nice.

We are all trying to remain positive in
our thoughts and prayers.

This situation is truly between God and Hollister.

Tuesday, May 9, 2006 4:28 AM CDT

Team Tough Needs your prayers.....

The weekend went by. He continued to struggle
with the hearing loss. It was a very emotional
time for us all. I am very concerned with my
Hillaree and Harrison. Their pain is so real!

Monday, brought change. Hollister seemed
different, his assessment had changed. His
Headache was out of control. We started calling
Doctors here and the Mayo Clinic...It was decided
that he needed to be evaluated at the Hospital.
We were directly admitted to Blank at 1PM....

Things started to deteriorate the minute we
arrived at Blank....

He was assessed on the Floor by his "team" of
Doctors. Around 4pm he started have having
grand mal seizures....NOT FUN!!!

The seizures...Knowing how fragile his brain is...
Finally stopped at 8pm with a lot of
medication..(which he has tolerated)!!!!

At 10pm he was taken to MRI.to scan his brain..
Where he became agitated and had to be sedated...
He did get the whole thing done...45 minutes or so..
Around midnight we were back in his room in the
PICU..He spiked a fever of 102+....
He has been poked prodded for blood and IV starts...

He has been resting on and off through the night.

I am ever hopeful that my "buddy" will continue
to work hard and his strong spirit will survive.

Please continue to think of and pray for Hollister
as we aren't sure what his wounded brain will do.

Friday, May 5, 2006 2:00 PM CDT

May has come into this house like a LION…
Makes us wonder if this is still March….

May day came and went with the happy
delivering Of May baskets….

Cinco de Mayo is today, and it will pass without
Any celebration..no chips, beers, or margaritas….

Monday night brought change once again…
Tuesday morning it was evident that the disease
Has progressed and quickly….
Therapy and an audiogram and a visit
To an ENT Doctor confirmed our worst fears….
His hearing is gone……

Tuesday, after talking with our geneticist and
Neurologist at the Mayo Clinic…it is assumed
That he is having some sort of stroke/crisis….
We are working hard to keep him home and
Out of the hospital….Not sure…how long we
Can keep him going at home….

Wednesday brought FEVER…IV therapy and rest…
He has been so sick that he hadn’t realized
just how little he is hearing…..

Harrison at the track meet…was tabletopped
(this is some way of knocking you off your feet…)
He hurt his thumb….He was seen in the ER and he
did indeed break his thumb…through the
growth plate….He had to see an orthopedic doctor
and is now sporting a blue cast almost to his elbow..
This will be on for at least 4 weeks…
He will miss at least 4 weeks of baseball, league
and AAU…..

Thursday….brought therapy and realization of his
loss of hearing…He is struggling….
not eating or drinking enough…
not interested in going out to lunch….
Heartbreaking…..

Friday, a Doctors appointment and blood work…
Labs look OK… He looks rough and feels bad..
He is unsteady…and very ANGRY…
He is very mad that we can’t get his broken
Hearing aids fixed…..He will see Diana
(his Audiologist) on Monday…but of course
we can’t explain this to him…

We are all pained by this loss of hearing…
He didn’t have much but we could still
communicate with him….But, with his vision loss
and now no hearing… he is withdrawing…..
We are all very sad.

We are anxious and hopeful that at least some of
His hearing will be restored. We continue to pray
And ask God to be merciful…

It is a very hard time for us all. Especially
Hollister.
Hollister enjoys Movies, lunch, and arguing….
Now all of that is gone……….

Continue to think of a pray for Hollister.

This link is to the article in Wednesday's
paper, it is a story about Toby volunteering
and his time with Hollister. It is a nice story!
http://desmoinesregister.com/apps/pbcs.dll/article?AID=/20060504/SPORTS05/605040407/1016

Thursday, April 27, 2006 01:23 AM CDT

Today was one of those days when everything
happens...Good and bad....

Hollister faced his day with a seizure in the
morning, even before I could get any medications
into him...What a start...
This always knocks him down for a while..
He then was showered(this always knocks me
down for a while...haha)and ready for the day...

Which was lunch with Toby and his wife. It was
a very enjoyable time. Hollister had lots to share
with Toby about their 2 losses this week. Hollis
always has some coaching advice for him. He takes
it so well! Go Stars..They play tonight!

The afternoon brought the kids home for school
and homework needing to be done.
Harrison had time to invent a new snack...
Inject Chocolate syrup in a Twinkie....Not bad...
Hillaree needed to get a manicure to match her
new highlights and haircut....
Tonight was Confirmation night for Hillaree.

I am happy to say we all made it to the church
on time. Hillaree was happy to see all who could
come. Hollister even graced us with his presence...
(a long nap after lunch!)

Hillaree looked beautiful. The service was very
nice. She has worked very hard on her service
projects and preparing for the Holy Spirit.

She has always inspired us with her kind heart
and compassion. She will continue to do great
things in her life. It is in her Soul.

Hillaree chose St. Frances of Rome as her
confirmation name. Fitting probably only to
Hillaree, as her Feast Day is March 9(Hollister's
Birthday). Hillaree loves Hollister and has always
wanted a connection to her brother that only she has..
What a great way to honor them both.

St. Frances of Rome, was born in 1384. She had great
faith and strength. She was known for her charity
to the poor and less fortunate.
To Quote from Hillaree's paper on her.
"I chose her because she did so much for everyone
else. I want to be like her to give freely of her
possessions and herself....Choosing a feast day
on Hollister's birthday is a way for me to keep
him close to me. She also exhibited great faith
in her life and Hollister also has faith. I
admire him for that. Her life was often difficult
and she was able to survive."

Faith....that is what would bring a Saint from
1384 and an 8th grade girl together.

We came home and had a small gathering at the
house...Thanks to Grandma, we had potato salad
to go with the pork...It was very nice.

Oh wait...the evening couldn't end there....

We were still visiting at the table...and Hollister
came back out and said again....I really don't feel
good. Headache.....just generally not right....
I said..lets get at least the seizure meds in...

I bring...Sierra mist..." I can't drink that."
I bring...Coke....."I can't drink that.."
"I said chocolate milk..."
Not the best choice, when feeling poorly....
That's right 2 pills in, I small sip of C. Milk....
And 4 GALLONS.....out...

PRICELESS!

AHHHHHH...

So after the "mess" is cleaned up...
Thank you Julie for staying and going above
and beyond....

An IV needs to be started...Not a good idea for
a tired "OLD" nurse at 11:30 pm....
But on the 4th attempt...I do believe God, the
Holy Spirit, St. Frances of Rome...
Maybe all, presented a vein and an IV is running.

What a day it has been. It was all encompassing!

Prayer to :
"Saint Frances of Rome, help us to see the
differences between what we want to do and what
God wants us to do. Help us to discern what comes
from our will and what comes from God's desire. Amen.

"God's will be done."

Monday, April 24, 2006 9:02 AM CDT

Spring is a busy time.

Hillaree and Harrison are busy with softball,
baseball(league and AAU), track, and soccer.
Doesn't leave us much time to accomplish
anything else.
The yard work is waiting....haha

Hollister continues to have ups and downs.
He has been busy going to lunch.
Aunt Jerri had a week off, so Hollister was
on the go, more than he is used too. He did
get his normal afternoon naps.

The headaches have been difficult to get a
handle on lately. He continues with the left
occipital pain(back of head)...The is very
worrisome to all of us.
He has been very verbal lately. Puzzling at times,
but mostly enjoyable. He remembers things that I
have long forgotten. This is truly amazing to me,
especially since I have seen the most recent MRI
with all of the continued swelling of his brain..
Truly amazing.

Hollister continues in the fight with all the
grace and diginity that he has been given.
His spirit surrounds us all.

Last Friday, Hollister did get to see his
friend Joel. He arrived home from Memphis
(St. Judes) on Tuesday. They have no other
treatment choices. This family has incredible
Faith.. Please pray that God will be gracious
to them all.

Today, with the sun shining...a gloriouis spring
day...I am thankful for friendship near and far.

Sunday, April 16, 2006 11:30 PM CDT

HAPPY EASTER...

Jesus Christ is Risen today..

Today we are Thankful for the Easter Basket and
all the delightful candy inside....

I love Easter and all that it means.
I love spring and watching the world wake up
from the long winter's rest.

Waking up with the birds singing, dogs barking,
and the kids fighting(I mean playing outside)....ah...spring....

We had an uneventful Easter. Thank you and AMEN!

Hollister survived a Holiday at home!
He made it to Church on Thursday, Friday and
Sunday. We had a very enjoyable Easter. Hillaree
and Harrison were mass servers at all services.
Nice!

We had some family in town on Saturday and Sunday.
Always a fun time. We made it to both of the Iowa
Stars games. Saturday night was a big night for Toby.
He got three big awards...MVP, Favorite Player
(fan choice), and the Community service award, for
his time volunteering at Blank(with Hollister).
He is very deserving of his honors and we are
very proud to have met this awesome young person.
He has given so much to Hollister. It is hard to
write what his time with Toby means to him.
For "our" hockey player #19 we offer three cheers...
Hip Hip Hooray!!!!

We all survived the "bug" that had invaded our
house last week. Hillaree is still having some
stomach issues...
Hollister continues with the pain in his head and
neck. It is still very worrisome
as we can see changes. It comes and goes to
the point of having to rest with a heating pad.
He has been very tired and shaky the past week.
His IV infiltrated in his hand last Thursday.
I have to wait to restart one giving that hand a
chance to rest. He only lets me use the right
hand as it is still numb and not working...His left
hand and arm is "off" limits...he says,...
"it is the only one I have!" I am anxious to
get another on going. This unfortunately is not
the best time not to be getting enough fluid or
energy.

Keeping the kids going is our first priority.
Keeping Hollister moving forward for as long as we
can is our true goal. Letting Hillaree and
Harrison experience life as "normally" as possible.
It is hard to be the "ones" with the sick brother.
Life certainly is full of challenges...

We all think life is short. We say it, we think it
and for most of us we believe it.
My friend said,
"That life is too long to live that unhappy!"
Makes sense, I like to believe that we are all
happy enough to worry that life is short!

Here's to a Happy Easter and a renewed spring

Wednesday, April 12, 2006 11:40PM CDT

A "few" years ago, on April 12, about this
very time...I was born....#4 of 5....4th girl....
4th "J" name....
I had arrived...

On this very night, my parents looked at me
with the hope that all parents have when they
look at their child. I am sure they could
have never imagined where I would take them.

Tonight as I reflect on my life.....

My thoughts are all over.

Dick and I went to mass early this morning
for several reasons...
There can be no better Birthday gift, than
receiving the body of Christ through communion.

Hollister has had a change. Monday night, his
head started to hurt. It was different than the
usual headache...It is very worrisome. I
started an IV and have been running fluid at
night since Monday. I did call Dr. Mack at the
Mayo Clinic on Tuesday...He reassured me, I was
doing the right thing. He is concerned that this
the beginning of a crisis..including a stroke. I
felt we needed to go to an extra Mass for Hollister..

Hollister's friend Joel who is at St. Jude's
in Memphis..He has been there about a year...
He is having some "bad days"...He needs us all
to pray for him.

Hollister and Toby "worked" today at Blank. Toby
gave Hollister the puck from the Stars game last
night. Toby scored the winning goal in overtime,
and gave the puck to Hollister. He is so proud.
He kept it in his pocket until bedtime.

Hillaree came home from school. It was an early out...
She came home and went right to bed. SICK. She has
been fight something all week. She is miserable, fever
and all.

Harrison came home from his track meet. Which he
did well at. It was fun to see him run with such
purpose. He did try and eat a little dinner with
us and he then went to bed...SICK.....

Hollister did manage to come to the table...
but he then headed back to the couch....
He felt terrible. His head and neck pain continue.
I immediately started the IV fluids...He tried to
take his medications tonight and threw up! He didn't
get any of his pills down..including his seizure meds....Not good...
Will wait to see what the morning will bring!

This is exactly why we can't have...
a bug in the house.

It was a very quiet Birthday dinner without any
of the kids at the table..
Very strange. No excitement, no homemade cards...
no cake....

Last year on my birthday, Hollister was very sick
and in the hospital...
He was life-flighted to Rochester a year tomorrow.
He has been in hospital on my birthday 2 of
the last 4....There is no place like home.

Today was a beautiful spring day,
it was a perfect day for a
Birthday.

The Wish

Each birthday wish
I've ever made
Really does come true
Each year I wish
I'll grow some more
And every year
I DO

Sunday, April 9, 2006 10:48 PM CDT

**********NEW PHOTOS!!!!**********

These are pictures of his 19th Birthday...

His volunteer buddy...Toby Peterson and his wife.

Pictures from his night in the "suite" at the
Hockey game"!

Those are fun times!

How fast time is moving. Hard to believe Easter
is fast approaching!

Tulilps are about to bloom....Spring has arrived!

The week before Easter starts for us with Palm
Sunday. As a child growing up... I hated this week...
It meant extra masses, and they were gonna be LONG,
and we weren't going to miss one! (I am sure that is
what my kids were thinking this morning at 0730 Mass..
How long is this going to take!)
Now, those masses of dread are filled with deep
thoughts and emotions for me. The Passion and the
readings that lead up to the crucifixion are no
longer just words, they now reach my
heart and I think...Wow..to give of your Son.....

I know how selfish I must appear to God...
I will give all I have and more to keep my children
with me. I continue to pray, ask,and bargain for more
time with my family at any cost.
I want him to change his "plan" to fit more of what
I think and not what he knows.
I want to wake up tomorrow and
never have heard of MELAS...

But...

When the morning arrives and the week starts....
and I do know about MELAS...and Hollister will
continue on his journey with it. Dick and I along
with Hollister, Hillaree and Harrison
will have Faith in God's plan and make the best
of what God has provided for us.

Hollister is holding his own. He continues to amaze
us all. He is working hard on eating. We are trying
to get extra calories in with some supplements.

On Thursday afternoon Harrison had
to have two teeth pulled! We love
Dr. Wilson and usually he is excited
to go the office(to play video games..)
On the way to the office, he was very
quiet, I asked if he was nervous....
he said was a little nervous...but he
said, "Remember the last time, he pulled
two of my teeth it took six years for
them to grow back..." I guess at 11,
no one wants to be missing 2 teeth for
6 years... He did just fine, and ate
2 double cheeseburgers on the way
home!
Julie and I drove Hollister over to Omaha to watch
Iowa Stars Hockey on Friday, he was very excited.
It was good to take him somewhere....but he wouldn't
eat any food in the Omaha Arena, he didn't want to
support their team, and give them any money...haha...
Same ole Hollister.

Hillaree had to go the ER this morning...She cut
her hand on some glass from a broken window(Harrison
kicked a soccer ball.....) She had to get some
stitches in her hand.. She was very brave....
She was in the ER 6 months ago with her wrist...
I told her she needed to get off the...every six
months in the ER...

Thanks to everyone who still checks in on
Hollister. He contines to benefit from all of
your good thoughts.

Here's to everyone's last chance to be
good before the Easter Bunny get's
here...
(We are trying to keep Hooch Dog away
from the Easter Bunny, as he caught
and ate a rabbit on Sunday....)

Monday, March 27, 2006 9:30 AM CST

Spring has officially arrived.

Last Tuesday Morning, we woke up to 4 inches of
beautiful wet "spring" snow...By lunchtime it
started to melt. The Tulips appeared to like it!

I love Spring...almost as much as Summer.
What an awesome time to wait and watch as the
world around us, wakes up.
The Robins are back, building there nests to
welcome their growing families.
The kids are out playing, neighbors are walking,
dogs are barking...Plans are being made for yard
improvements, flowers, and the eternal hope of
finishing the projects.....
Time of hope and renewal.
(No coincidence this is also the Easter Season!)
Spring is a great time to be alive!

Hollister has made it through another Winter.
The Colds and Flu's are still in full force, we
continue to be careful with him.
He continues to have his good moments and not
so good moments.
He continues to struggle to get enough calories,
which promote good energy. He is tolerating some
of the supplements and ice cream daily!

Spring Break was last week for Hillaree and
Harrison. We did nothing out of the ordinary.
Harrison did a Soccer camp at Dowling. He thought
that was fun. Hillaree spent her time with friends..
It is always nice to have them home.

Hollister volunteered last Tuesday with Toby...
Lexi was there also!
Toby had been out of town for 2 weeks, Hollister
missed his buddy!

Thursday , lunch was quite exciting for Hollister.
Toby met him at Hooter's.. His smiles were contagious.
Toby gave Hollister a gift of a lifetime. The Iowa
Stars and the Well's Fargo arena....were giving
Hollister the use of a "Suite" at the Hockey game
on Saturday night.
WOW.....
It was fun. We all loved the chance to sit in one
of the private suites....
Everyone had a great time. The Hockey game was
awesome, Toby had a goal right in front of us,
and the Stars won... Great Memories...
Thanks to all who made that happen....
(Toby, Julie, Jerri, Matt...)

The Stars played last night, it was youth
Hockey night....
Harrison looked fine out on the ice in his
jersey...Fun time.. Harrison was also given a
gaolie stick...from the goalie..after the game he
got it signed...We apologize to all the people at
the game that Harrison hit, blinded or injured
carring that stick around...haha
Another win....

Today, Hollister sleeps. Mondays are his day
to rest and try and catch up.

I have been reading some articles on MELAS,
searching for information...Looking for any
answers on where we are headed and why...
If, there is some new treatment somewhere that
I don't know about...What if..Trying to decide if I
need to be searching for a new "Dr. Whiteman"...
if there is one...I try not to search on the computer,
I know that not all sources are reliable...
But...every now and then my anxiety gets
the best of me...and I start looking for
"Medical" journals or articles....That is when
the ANXIETY really takes over...I have lost
sleep!! haha Nothing good can come from this!
What I have learned(again) about MELAS is
there is no way to know what is ahead....it has been
re-affirmed that this is a horrible, ugly, mean, unforgiving,
energy robbing, life stealing disease!

That noted...ha...

We will continue to fight the fight in this house for
as long as God sees fit...(Which, by way God....
I hope is along time!)

Hollister's spirit is strong and willing.

Here's to Spring and to the HOPE, it brings with it!

Friday, March 17, 2006 8:08 PM CST

HAPPY ST. PATRICK'S DAY....

To all my Irish Brothers.....

An Irish Blessing

A sunbeam to warm you, Good luck to charm you.
A Sheltering angel, So nothing can harm you,
Laughter to cheer you, Faithful friends near you,
And whenever you pray, Heaven to hear you.

This was always the biggest and brightest day of
the year for Dick's Dad...Mr. Ed O'Farrell. He
loved this day. He helped start the festivities,
that are now tradition in Algona. Many years,
we have taken the kids to Algona to walk in the
parade, Hollister always took great pride in
carrying Grandpa Ed's flag.
One year when Hollister was 4 or 5 he had
one of those little battery cars, and Ed let
him drive it in the parade...
It was such a big day for both. Ed was
very proud of Hollister.
This St. Patrick Day....
Harrison did make it with the McCarthy's down
to the parade in Des Moines. Thank Goodness at
least one of the O"Farrell's made it in a parade..
haha

Not much in the way of celebrating...We did get
Hollister out of the house for supper. That was our
big adventure.

We have watched a lot of basketball. Hollister
was not shy when he realized that IOWA had been
beaten. That really made his day.

Hollister continues to work hard. He is really
working on eating. His weight continues at the
100 pound mark.
YEAH!!!!
He did get some IV fluid this week,
seems to keep him going.

He is low energy and very tired. We are all
working hard to figure out what works for him.

Here's hoping you all have a
Happy St. Patrick's Day!!!!

Some may say the glass is half empty,
Some may say the glass is half full,
But the Irish will forever say
"Are you gonna drink that?"

Here's to the O"Farrell's

Tuesday, March 14, 2006 11:59 AM CST

Another beautiful March day. It is a little chilly
but the sun is shining so bright! A lot of the
flowers have peeked out from the ground, hoping
like all of us that winter will soon be over!

Girl Scout Cookies are here!!!! yeah!!!

Hollister did indeed survive his Birthday. He
was tired. Friday, he perked up long enough to
go out for lunch! He continues to fight a nasty
cold. I did start an IV on Friday afternoon and
ran continuous fluid until Saturday night. I
have run 2 bags through each of the nights....
Last night he even asked me to start it up again.

He made it to therapy this morning..He had the most
incredible Bed Head...(I was Proud!) He was tired
and a little wobbly...but he made it. He is now
fast a sleep. He wasn't even
interested in the last half of the
"Rice is Pright!"(that is how he says it now...)
He is exhausted.

I did shower him on Sunday and weigh him....
100 pounds.....I am very proud of our efforts.
To all who have helped push the food and calories,
Thank you. This truly has been a group effort.

He continues to amaze me. He is an incredible
young man. I watch him and truly know that
God is good. Hollister with his fire and
passions has so much to teach us all.
He sits up a little straighter, smiles
his crooked smile, and you know that what he
is about to say....is something that he believes...
(right or wrong)... I guess always right.....
He is a Farrell...hahaha
He is such a good guy...May he always have
the ability to speak his mind!

Hollister continues on with his journey...
not necessarily the journey we packed for...
but a journey that God has planned.

Thursday, March 9, 2006 11:39 PM CST

HAPPY BIRTHDAY TO HOLLISTER...

He was born at 11:39 pm....He is now 19!
Seems kind of useless to be 19...
When I was 19, I was old enough to imbibe
in the spirits....(Guess I am dating myself!!!)

Dick and I found ourselves at early (6:30) Mass
this morning. It seemed to us, like the perfect
gift to give.
Our thoughts and certainly our prayers.
Mass, this morning...appeared to one of
those times when if the message had been
any louder for us...
We would have been slapped!

The first reading from Esther...Talked to us
about continuing to ask God...to continue to
"knock on his door"...to keep the prayers coming.
It felt so appropriate to Dick and I both that
the reading was speaking volumes to us...and
then the way Father explained it. Maybe God's
answers and ours aren't the same,
but we continue to pray and have hope.

Hollister woke up on his birthday with a
terrible COLD.Not good. He was struggling
this morning. He did make it to therapy at 0900.
He was tired all day. He didn't get a nap at all.
We rested after lunch (not at Hooter's) and watched
the Lion King movie!

We went to Speedy's(Mexican food) for supper. He
didn't want to go to El Rodeo...they make you
wear that silly sombrero and sing to you in Spanish.
We have all had to wear the sombrero. I even had
to wear it once when it wasn't my Birthday...
He knew his fate if we went there!

Tonight, we went to see the Lion King at
the Civic Center. Hollister really wasn't
that excited. He went because I wanted to go and
he wanted me to be happy. A good time was had
by all. I think unfortunately for Hollister it
was hard for him to see. His vision is
questionable...But, he did say the music was good.

We made it home and had a Birthday Scotch-a-roo...
He didn't want a cake...He was kind of sad and
down about his birthday all day..(all week)..
He definitely didn't want any celebration or
gifts. Not sure why..

He was exhausted. We were contemplating and
IV before he went to bed...I will see how
he is in the morning. I am sure he will
sleep most of tomorrow!

I am thrilled to be celebrating his 19th
birthday WITH him. I kept wanting this day to
last forever. When we watched the movie together this afternoon,
I was thinking how lucky I am.
He is a great kid and he is 19 and he still likes his
Mom. Somewhere deep in the back of my brain..I
worry that there won't be more birthday's like this.

So, tonight at 11:39...when Hollister and
I relive the story of his Birthday...
We will laugh, hug, and appreciate this day
like we have for the last 19 years.

Hard to believe he is 19.

Happy Birthday to Hollister Richard Farrell!

Monday, March 6, 2006 8:50 AM CST

Good Monday Morning.
Looks like it is going to be another
nice day here.

Hollister survived the busy weekend!
He is very tired this morning, Not sure what
the day will bring! He was worn down went he
went to bed last night. I know he is done when
he says things like" my eyes are doing those
funny things, My legs are really tired,
My head is really hurting, My good hand is
twitching, and he had trouble with speaking
his words" All signs we need to stop and rest
and hope for the best!
But.....
Oh what a weekend it was!

Hollister made it to a movie Friday night
with his cousin Jamie......
The Dowling Hockey game on Saturday afternoon.
The Iowa Stars game on Saturday night..
his cousin Nikki was here for that....
Toby scored a beautiful goal right in front
of us. It was awesome. Hollister beamed!
To the Dowling City Championship game on
Sunday afternoon...Of course they won!!!!!
And to the Iowa Stars game on Sunday night,
they had a big win also....
It was a huge weekend for Hollister!

Not to mention...
Harrison wrestled and had a Hockey
game(missed Soccer) and Hillaree had
her swimming conference meet!

The word of the weekend....BLEACHER BUTT!!!!

It is a lot of work to get Hollister to
all of those places and yesterday we
ended up using a wheelchair for part
of the day.It is worth getting him there.
It makes him happy.
He does keep us on our toes!

He is still struggling with the eating issue.
It has become a "full-time" job getting enough
calories in! But....we keep on!

Nothing on his agenda today....
No therapies or appointments.
He can rest all day if need be!

Happy Monday!

Thursday, March 2, 2006 6:20 PM CST

Hollister is watching that 70's show,
Hillaree is swimming, Harrison is playing
outside with Hooch and Dick isn't home from work...
All is right with the world!

First, Harrison came home from school with the most
AWESOME news....
He is in a group of Future Problem Solvers(FPS)
(This is like Talented and Gifted,TAG)
and they went to a competition a couple weeks ago...
He is a 5th grader and his group (4kids)competed
against 5th, 6th, 7th, and 8th graders...
Today, they got their group results...
They got 1st place and get to compete for 2 days
in Pella at the state level. He is thrilled..
I am thrilled. I was lucky enough to go the first
time, and I am hoping to travel to Pella. Trying to
convince his team, I may be lucky. ha
We are so proud.

Hard to beat news like that.

Hillaree is busy with swimming..the conference
meet is tomorrow. She has also started softball,
seems weird that she will play at the high school
this summer. She is liking it a lot. Most nights
she falls into bed.

Hollister is looking a little better this week.
He is very tired and weak. He is not moving around
much. It is amazing to me, how sharp his mind still is.
He hasn't forgotten a thing. He continues to keep me
on my toes.
It is hard to know what is going on inside those cells.
If only we could find some answers....
He has lost a lot of weight. His top weight was 119 pounds...
He weighed around 109 in December at
the Mayo Clinic....
I knew he was down, last week after a
shower I weighed him and he weighed only 95 pounds.

My heart is broken!

My brain is in overdrive...what can we do.
Hollister and I had a long talk...I
told him, he was going to starve to death....
I talked with his therapists, Doctors at Blank...
(Not sure who to call in Rochester...
We fight our fight alone)
Dick and I talked...possibility of a temporary feeding tube.
We got samples of nutritional supplements...
Hollister said he would try...but didn't want
a feeding tube...temporary or permanent.
He has been trying to get more calories...
He is eating ice cream...trying a least one
supplement a day, and eating what I put
in his mouth!

Team tough is fighting.

Last Wednesday, Hollister did make it to the
Volunteer Party (Child Life). He was not missing the party.
Unfortunately, for Hollister...
He had a seizure as
we were getting ready to leave.
The good news is,
(he is a Farrell, always the last to leave
a good party!), it was a small seizure...
but it lasted too long, and took too long to
recover. Not sure where it came from or Why....

It certainly has been a rough couple of weeks.

It has been difficult.. I fear if we don't stay
ahead of the calories and nutritional intake
he will cross a metabolic line that he can't
return from. I have been running lots of IV's,
good for a quick fix, but no calories....

Hollister continues to shine and fight a courageous
battle against a disease that is so horribly unknown!

Here is to another busy weekend.
High School Hockey tournament and The Iowa Stars are in town for 2games...
Not sure how much we will get
Hollister too, with all the "flu"
out there...
we have been staying close to home.

Thanks to everyone who continues to read this page, write a note, call,
and keep Hollister in your
thoughts and prayers.

Spring is around the corner....March came in like a lamb!!!

Monday, February 20, 2006 0044 AM CST

Here it is Sunday night....again...

Thank you to everyone who has continued to keep Dick
and his brother Bob in their thoughts and prayers. We have
received so many nice cards. It helps to lighten the load to
know that we are not alone.

It seems that our weeks are running together. Last Saturday
night we did get to an Iowa Stars game. It was great fun.
It was a lot of work getting Hollister to his seat. It was well
worth it as Toby had an awesome goal right in front of us.
We all enjoy those games especially knowing how much
fun Hollister has.
Last Sunday night Hollister did make it to the Ice Facility to
watch the Dowling Hockey team. it is fun for him. He played with
a lot of those kids growing up in the youth hockey program. It is hard on
him to know, that he can't participate anymore.
Being there tired him out and he asked me to start an IV when we got
home. He went straight to bed and I ran fluid until Tuesday morning.

It was Harrison's 1/2 birthday on the 12th....Decided to have a
little celebration...Good for all of us. Except Hollister he was
already in bed!

He continues to have a rough time. He has no energy to do much
of anything. We are careful where we take him. He is sleeping
a lot. His balance continues to be an issue. He has fallen several
times. He is becoming more and more dependant on me. Not sure
that is the best thing. But he continues to remind me we are
"Team Tough"....and then he says..."What would I do without you"
I do believe the bigger question is...What would I do without him!

He has been watching some of the Olympics, but unfortunately
for him we don't have cable so there isn't much to see on TV.
He does enjoy most of what he gets to see. He is tired of the
figure skating...He is sad that he hasn't seen any Olympic Hockey..

This past week was also Valentine's day. Hollister did get
to volunteer with his buddy Toby..This is the highlight
of his week. They got to deliver all the Valentine treats to the
kids in the Hospital. It was fun for him. It was nice to be the one
handing out the treats and not the patient receiving them.

Dick's birthday is on the 15th...We like to celebrate anything we can...
The kids wanted to take Dick to Christopher's for Dinner. It was fun.

This Sunday night, Hollister didn't make it to Hockey..He is just
too tired. We had a very slow day. I showered Hollister around
lunch time and that was all he could do today. He was tired.
He is also having more trouble keeping his food down. Not
sure what is going on there...but his vomiting is becoming
more projectile....Makes it a little more interesting at the
table..hahahaha

Here is to the start of a new week.

And hoping that our Roller Coaster ride starts to slow down!

"Hope is being able to look at our world with all of the
Joy and Wonder of a child!".............Jack Croft

Saturday, February 11, 2006 2:22 AM CST

Another difficult week has come to a close...

Hollister has struggled a lot this week.
It has been an extreme roller coaster for us.

On Monday, Dick's brother Bob died. Unfortunately,
it was a tragic accident. He hit his head, causing
a subdural hematoma. He was a lone at the time and
was unable to call for help. He was only 48 years
old. It has been a difficult week.

Things happen in life sometimes that leave
large holes in your heart. This is one of those
times. The truly tragic part, is that Bob and Dick
had a falling out 16 months ago.
For Dick this meant mourning
his brother a lone.

Bob was Hollister's Godfather. They shared a special
relationship. Through the years they shared a lot.
Four years ago when Hollister got sick, Bob was there
for us. He came to Rochester to let Hollister kick his
butt in checkers... That Christmas, when Hollister was
still so sick and on that crazy diet, Bob was so proud
he took him out and got him to eat a big ole steak!
That was as happy as I had seen both of them when he
brought Hollister home that night. Hollister continued
to talk of Bob and missed having contact with him.
His death was very hard on him.

We were able to take the kids to the Wake last night.
It was very emotional for all of us. It was comforting
the show of support and the many kind words that were
shared, especially for Dick.

The trip to Algona and the Wake were too much
for Hollister. He was in no shape to attend the
funeral or burial today. He was disappointed,
but was glad he got to pay his last respects
to his Godfather and Jeanie and his son Joey.

Hollister has had a tough week. He has been very
weak and tired. On Tuesday, I started an IV and
ran lots of fluids. He was very dehydrated. I did
this again on Wednesday and Thursday.

His balance around the house has also changed.
He fell several times this week. Not sure why.
He almost knocked over the china hutch in the
dining room one time. Scared us both! Not sure
what is going on. Keeping a close eye tonight,
he is tired and the IV fluid is running!

Tonight as we're out having a drink(fellowship)..
letting by gone's be by gone's...
We raised our glasses to Bob...
He was a good son, father, husband, uncle
and brother. He was kind and caring and a
good man, but most importantly, he had faith.

Please keep his wife Jeanie and his son Joey
in your thoughts and prayers. The untimely death
of Bob has left a void in their lives.

We will continue in this house to keep Bob
and his family as our special intention in
our prayers.

Tonight and every night
Let the perpetual light shine upon Robert J. Farrell.

Monday, February 6, 2006 8:06 AM CST

What a week it has been.

Dick and I did make it to Oskaloosa for Tyler's
visitation and Funeral. This was a very difficult
for us.
His funeral was a night time funeral and burial.
What an incredible celebration of this young
life. He truly may have accomplished more good
in his 17 years than a man who lives to be a 100.
Rest easy "Simple Man".

Dick and I shared more last week, than we have in
the last 7 years. I know we cried often through
the week. We are thankful that we do not wear the
shoes of the grieving parent. We do not understand
what they feel and hope never to. The Deheer family
continues in our hearts and prayers.

We are lucky, that we have so many reminders
(some gentle and some very harsh)to appreciate
the time we have and that is what counts.

Hollister....his dry sense of humor continues. He
continues to make us laugh, even during the simplest
of times.
He is very tired and very low energy. We are
learning how to make wise decisions on what he
can and can't do.
He is eating less and less. It is difficult for him.
When he thinks something sounds good, the call goes
out and the food arrives...Awesome!

Saturday, he got to go to Hooter's...His favorite
Religion teacher from Dowling....Mrs. Thierer,
called and invited him to lunch. Lots of smiling
and laughing. Does a heart good, to hear him
badger someone else...haha
Saturday night, Uncle Tom and Aunt Judy were here
and took him to the Joe's Crab Shack....He likes to
go there also...he ate pretty good. He was so tired
he almost feel asleep at the table.

He did stay up for the Super Bowl..He had lots to say.
After, the Steeler's started to dominate...he seemed
to change his course and started cheering for them...
Not sure what to make of it..Only thing that made any
sense to any of us is...He has a brain injury..hahaha
I can say that I have never seen him do that before...
The best part( or most irritating) part was, that he
wouldn't acknowledge he was a band wagoner!!haha

Hollister continues this crazy roller coaster ride,
that we have come to call his life! We are certainly
not ready to get off.

"When I was a boy and I would see scary things
in the news, my mother would say to me,
"Look for the helpers. You will always find
people helping." To this day, especially in times
of "disaster," I remember my mother's words, and
I am always comforted by realizing that there
are still so many helpers-so many caring people
in the world. Mister Rogers!

Thank you to all our caring helpers!

Sunday, January 29, 2006 01:48AM CST

What a week it has been.

Hollister continues to have some difficulties.
He is very tired. Low energy.
He is still having some strange episodes...
Certain to be coming from the brain.
His therapists are all very concerned.
Thinking it might be time to call Rochester.

We were able to attend the Iowa Stars game on
Thursday night. They played very well. Hollister
said Toby had a great game...all but 3 and 1/2
minutes...(in the penalty box)...Watch out
Toby...Hollister will never let it go...hahaha

Harrison also had a Hockey game on Thursday.
He too, played well. He scored a goal. It was
awesome.
He had 3 goals(a hat trick) at soccer today.
He has a wrestling tournament tomorrow and
baseball is starting...
Hillaree spent most of the weekend at a
confirmation re-treat.

It has been a heart breaking week for us.
My friend Cindy, her 17 year old nephew died
at lunch time today. He was one of those young
men who was good. He loved the fair, FFA, and
his high school(Oskaloosa) athletics. He also
loved the U of I wrestling. He was a courageous
young man who fought a good fight. He finally
won the five year battle with a nasty brain cancer.
I felt honored to have known him.

Tonight at Mass, I felt very humbled by God and his
plan. I certainly don't understand the plan and at
this moment...not sure I am comfortable with it. But,
I do know it is his plan...and somehow, it all works
to a greater glory. I didn't know what to pray
for. The only thing I could think of was peace.

As a parent of child with a terminal illness, I
unfortunately know more people with sick kids than
not. Each time a child dies...someone I know or follow
on a caringbridge page a little piece of hope dies
with it. The hope that maybe this will be the lucky
one, maybe this will be the one who makes it. Maybe
these will be the parents who no longer live in fear.
Hope is what keeps us going.

I feel like a little piece of my heart and soul
dissolves with the death of a child. It is hard to
explain but it is a pain that is so real that
it is scary. It is a pain that no one wants to
experience. I haved wept until no more tears can fall.
It is real.

Today as my mind is with Tyler's family and his
only sister whose birthday is today...I continue
to hold them in my heart and pray for peace.

Let the perpetual light shine upon....Tyler!

Monday, January 23, 2006 8:35 AM CST

Another Monday morning is upon us.

Hollister continues to sleep, as does the dog...

Dick is working and Hillaree and Harrison are
at school. I of course have started the long
process of finding the laundry room.

What a week it has been. Lots going on.

Hollister announced last night that he had gone
a week without any Mc Donalds. I think this may be
a personal record for him. I don't know how much
longer he can hold out for some McNuggets! haha

He was able to get his Hooter's fix last week.
Our friend Karen(also Hollister's PT, from Blank)
took us to lunch. It was a great time. Lots of
laughing and of course Wings and Rings(onion rings).
Hollister hadn't had Hooters since Thanksgiving...
so it was time. He is staying with
the story that he goes for the CHICKEN!

We went to 2 Iowa Stars games, each of the past
Saturday nights. That is always so fun for us.
Last Saturday, was an ISU hockey game before the
Stars. That was a lot of Hockey...But always a
good time. Hollister loves to watch his volunteer
buddy...Toby. Just when I worry that he isn't seeing
much of the game, Hollister will confirm that he
knows exactly what is going on....It is amazing.

Hollister has continued to volunteer each week.
Toby is very patient with Hollister. What he
gives to Hollister each week is an incredible gift.
I am thankful for the insight of Blank Children's to
help Hollister the way they do. This is an ideal
situation for Hollister, he gets so much satisfaction
from his "WORK".

My Niece Jamie came on Thursday and spent the
weekend with us. That was great fun for all.
Hollister truly enjoys his time with her. Friday,
it snowed...Not only was it snowing but Friday
evening it was a beautiful snow...Huge, beautiful
snowflakes in the dark...The kind that make you
go outside and dance and twirl in it....
Of course it is all fun and games until
someone gets hurt.....Jamie had to throw a
snowball at Hollister and hit him in the face.....
hahahaha

This stupid disease continues. I wish so hard that
I could make it go away. If I close my eyes real
tight and pray..will I open them and he be OK...
I keep trying!

Not sure what is going on in his brain, I do know
from the last MRI that there is still a lot of
swelling and his brain is very sick from the last
two strokes. The stroke is unchanged. That is why
the headache continues, his brain continues to
push on his skull. Metabolically, he can't have
a lot of pain medication. Unfortunately, for him...
that is why his headache continues to go
untreated...Doesn't seem fair.

The last week or so, he has shown us some unusual
activity. He has had some seizure activity and
speech slurring and facial drooping and word
retrieval problems...Very worrisome for us.
The episodes only last a few minutes but they are
very noticeable. Not sure how many more he should
have before I call Rochester...
One of the worst parts of this incredibly unkind
disease is that there are no guidelines.....

We continue to live with and around the disease.
We embrace the time we have and try to LIVE!

We are busy with Hillaree and Harrison. Harrison
has wrestling tonight and Hilllaree has a swim-meet.
Something for everyone...Hollister I am sure will
spend his night watching movies....

Happiness is a choice,
and you are the one who's
responsible for it.

Wednesday, January 11, 2006 4:47 AM CST

January 11, I guess the new year will forge
ahead, ready or not...

The past 11 days I have been trying to absorb all
that I have learned and know..Some days are easier
than others...I have been trying to figure out where
we are in all of this...

Good news..so far I know nothing and have figured
nothing out!!!haha

Hollister is tired and extremely low energy. He
has been going to therapy, he has been volunteering
with Toby, and watching movies and sleeping. Every
few days I can take him to lunch, many days he relies
on Aunt Jerri to bring him take out...Most days we
are lucky to get him to eat one meal..His appetite is
non-exsistent!
He has been receiving IV fluids for the past 8 days...
He is, so easily dehydrated...from not eating and
drinking enough...his headache again is very bad...
He sits and holds his head , trying to ease some of
the pressure and pain...I feel so bad, that there
isn't much to do for the pain.
He had a rough night complaining of eye pain that
wouldn't allow him to sleep.
Pain.....the one thing I continue to ask God to
be mericful with...

Life does continue to move forward.....

Hillaree is busy starting her last semester as an
8th grader..Lots of excitement planning confirmation,
graduation.....and which high school she will attend.
She is swimming and socializing as often as she can..
Most nights she is wandering around the house with
the phone attached to her ear...It is a joyous sight
to see her happy.

Harrison is busy now with Hockey, wrestling and indoor
soccer...He scored 6 goals in 2 games on Saturday..
He was extremly proud of his 2 "hat tricks.." as
were Dick and I. He still finds time to play that
nintendo DS...

Hollister continues to lead us. His mind is sharp
and knows exactly what is going on. He is on top
of most things. His sense of humor remains intact..
He continues to have his strong will and morale sense
and will not (at any cost) back down....haha

Through all that has happened...

Hollister continues to be my Hero.....

Saturday, December 31, 2005 11:55 PM CST

Happy New Year!!!

Hard to believe in 5 short minutes it will be
2006. Hillaree and Harrison and their friends
are waiting for midnight to go screaming outside,
banging pots and pans...I am sure our new
neighbors will love it...ha

Hollister, Dick, and I are watching and waiting for
the ball to drop. It is nice to see Dick Clark
on TV. Hollister and Dick Clark were in about the
same boat last year!!

It has been quite a year for us.
We have had some some rough days, but we
certainly have had more glorious days....
We try to thank God daily, even for the smallest of
blessings.....

Hollister had a rough 5 month start to the year.
I have no idea how many days were spent in the
Hospital..I know it was too many..
He did get his act together in May..just in time
for Graduation from high school. What an event
that was. No, it wasn't quite the moment I had
dreamed of since he was 5, but it was still
impressive. He was able to stand tall and with
a little help, he recieved his diploma and a
standing ovation...I get teary eyed thinking about
it.
We had a great trip to Alaska for graduation with
Aunt Jerri and Aunt Judy. It was a trip of a
lifetime...We all have so many great memories
from that trip...
Dallas for Thanksgiving has been a dream of
Hollister's since he was little. We were able to
take him to the Cowboys game and a Dallas Stars
game..It doesn't get much better than that.

Hooter's wings...boy did we eat some Hooter's
wings....Hollister was also able to attend the
Hooter's swimsuit contest locally..He was pretty
excited. We were able to eat Hooter's in Des Moines,
Anchorage, Dallas(x2), Oklahoma City and Wichita...
We will see what 2006 brings..haha

2005 wasn't very kind to Dick. He was laid off
from his job in April..(It had nothing to do
with the fact that Hollister had used almost a
1/4 of million dollars in insurance, and they are
self insured...That never crossed their minds..haha)
He had lots of interviews with companies and Brokers
he has worked with and known for the last 11 years...
But, they all wanted to know how Hollister was...isn't
that nice...Dick found out the hardest way what
a liability a terminally sick child is...life is
very cruel sometimes...
Dick passed the insurance exam on the first time...
Yeah!!! In October he started working for Banker's Life.
He is excited about the change...and...so far they seem
very concerned about Hollister.

When God closes a door, he opens a window...

I am thankful that Hillaree and Harrison are doing
well. I worry about how their lives have changed.
I see them happy and healthy and know for this moment
in time...they are OK. They have done a great job at
adjusting to the changes in our lives.

2006 is happening now in front of us. Hollister is
cheering and the pot banging and screaming is all
around. We are toasting the new year with a "vintage"
bottle of sparkling apple cider and Dick and I
know there is no place we would rather be...

So to the New Year,
I wish all of our Family and friends...
HEALTH!!!!!!

Raise your glass to an Irish Toast!

In the New Year, may your right hand always
be stretched out in friendship and never in want!

Thursday, December 29, 2005 9:48 PM CST

Home again Home again...
We got home around 7:30...

It has been a long week. Hollister is
exhausted. He ate a little dinner, took
half of his pills and headed to bed.
He has said all day he doesn't feel very
good, and his headache is bad. He looks
rough.

Our day was very unproductive. Hollister and I
got up eary and made it to the clinic for his
8:30!!! appointment..It was with Dr. Nash, the
rehabilitation doctor. He has know Hollister for
4 years...He hasn't seen him since last January..
It was nice to see him. Hollister and Dr. Nash
had a nice conversation about HOCKEY!! Everyone
was happy. He has boys that still play division 1
Hockey. He is going to give our therapists some
new guidelines for his therapies...Not sure what
they are, but will wait to see.

We got back to the hotel to get the kids at 10:00.
They were happily watching TV..We had time to kill.
Hollister's next appointment wasn't until 3:30..
We went to lunch at Applebee's and headed back to
the clinic around 1:30. Hoping to get in a little
early....
Not to happen...Hollister slept in a chair, Harrison
played gameboy, and Hillaree and I tried to put
a puzzle together...It was missing a lot of the 1000
pieces..Puzzles aren't as much fun as I remember!!!

We did get in at 3:30, hoping to get answers to the
tests of the week... But, that was not to happen.
Dr. El Yuseff, was very apologetic, but the biopsy
results were not available....AHAHAHAH!
We waited around all day, for nothing....

Tomorrow he will call with the plan for Hollister.

We were happy to get home...before the weather
starts for the weekend...

Good people are all around...
Yesterday as Hollister and I were leaving St. Mary's,
after his procedure. He was awake and wobbling
recovering from anesthesia. Hollister and I were
getting on the elevator and this women held the
door for us. She looked very sad and tired. I was
walking Hollister to the door, directly across from
the Hotel. I knew it would be tricky, the sidewalks
were icy and Hollister was weak. This stranger
walked with us and held the door. She asked if she
could help me, I of course said no...but she insisted.
We were waiting to cross(jay walk) the street.
She said her mom was diagnosed with something terrible.
They had been here for Christmas....she and her
sister-in-law had been alternating nights with her
mom..They were from 2 hours away in Wisconsin..She
was very sad. She said that in such a short time she
had learned so much..She reminded me that life was
short..and not take anything for granted...She
tried to smile at me..She held Hollister's arm
so tight, and said that I guess you already know
that! She helped us across the street! When she
left, she was going the other way...

Angels are all around...God speed to her mother!

Wednesday, December 28, 2005 4:20 PM CST

Our simple Christmas at home....was just that.
We had a great day. Hollister was up and ready
to open gifts at 8:30....none of us saw that one.
It was so nice to be together and at home. It was
difficult to think about where we were last year at
this time. That stroke last December cost him so
much. But, this Christmas....was all GOOD!!!!!

It was a fun family time. We had a great meal
that Dick and my Mom made...We played a dice
game called left center right...(or 4,5,6)...
We like to play this game as it is simple and
Hollister can participate....
Jerri got bigger dice for us to play with...and
Hollister noticed right away...He said..."Hey these
are great, even the blind guy can see these..."
His sense of humor continues to amaze us....

Christmas didn't last long enough...

Tuesday morning bright and early...we headed back
to Rochester...Our appointments last week, were
anything but good news....
Tuesday...Hollister was NPO(until almost 3pm)(this
means nothing to eat or drink...)He had a swallow
study(during the swallow study,
true to Hollister...when asked if
he could he eat a cookie...He said.
No thanks..I couldn't eat a cookie.
The OT (Occupational Therapist)
said in all her years of work, no
had turned down a Cookie...Only
Holliser...He did eat one bite!)
and some X-rays....He was worn out....

I had carried IV's with me...I know that he can't go
without food and drink that long without some problems..
Last night, with help I believe from the IV Saint...
I was able to get a line in...I ran 2 bags of fluids
through the night...

This morning he was again NPO until...1pm....
He had a Gastroscopy (EGD) this morning at ST. Marys...
This is like home away from home...for him. When
we arrived at ST. Mary's, the nurse asked how he
already had a saline lock(IV)...I said, I started it
last night, she was confused as I tried in 2 minutes
to explain the Mitochondria...and Hollister's disease...
He tolerated the procedure well and is resting in the
room(hotel), with IV's running.

Tomorrow we will see the Doctors and hear what the
news is...

I am frustrated with the most of the medical commnunity.
Today, if I hadn't been with Hollister and very vocal...
An IV of Lactated Ringers would have been run...I had to
tell 4 nurses and 2 anesthesiologists that...Oh...
was the response each time, I said lactated ringers
raises the lactic acid and he has MELAS...
L meaning lactic acidosis...Didn't know and didn't
seem to care...

Dr. Whiteman, if he were still at the Mayo Clinic
and Hollister's doctor..would have been horrified
he was not admitted for IV therapy and labs....
because it is extremely dangerous for him to be
NPO for anything...
It scares me, that I have to be so on top of
his cares.. What if I forget something one day
or can't be there....

I brought Hillaree and Harrison with me. They are
good medicine. Hillaree is so compassionate and
watches me close and Harrison makes me laugh. He is
so funny...He likes to help me forget...They have
been swimming and playing on the computer...Not to
mention watching Cable TV..something we don't have
at home.

We will drive home tomorrow evening and then start
to plan on the new year!!!

Yes, Virginia, there is a Santa Claus. He exists as
certainly as love and generosity
and devotion exist, and you know
that they abound and give to your
life its highest beauty and joy.

Sunday, December 25, 2005 1:48 AM CST

T"was the night before Christmas and all through the
house not a creature was stirring...well that is
probably not true as Hooch Dog is still stirring..
He is looking for a crumb, a garbage can or an
intruder..(tonight, Santa Claus)...

Thanks to all who have sent the
beautiful Christmas cards and pictures.
They mean so much to us and connect us
to so many. Just like Charlie Brown,
I must tell you all to step away from
the mailboxes...No cards are coming
from me....ha

Last night we had the pleasure of seeing the
Polar Express at the I-Max theater...We didn't
get to see the movie at all last year as it came
and went while we were in Rochester.
It was a good movie and I enjoyed it alot. Hillaree
didn't enjoy the I-max experience....
Hollister wasn't thrilled with the story. It was
hard for him to like the main character because
he didn't have any faith. He needed to see Santa
to believe... Faith comes so naturally to Hollister.
Those with the strongest Faith never need to see
to believe...
Hollister helps me to re-new my faith all the time.
He has incredible Faith, and likes Santa also!!!haha

This morning Dick and I had a little shopping to
do. I enjoyed being out and about today. I was
pleasantly surprised at how few people were out.

I was surprised that we did get most of what
we needed to get done. This has been a very
unorganized Christmas season.. I have done an
exceptional job of keeping things simple. Thanks to
all who have listened to weeks of Christmas music with me.
All in all, I think it has come together as well as
expected...

We also got to deliver some cookie trays to some
friends, who continually go out of their ways to
care for us. We also stopped at the firehouse.
Firehouse #9...Our hereos...These guys have taken
such good care of Hollister. They have been with
us the entire time Hollister has been sick.
Tonight, God Bless the paramedics who work so hard
especially on Christmas!

This evening we headed up to Ames for the annual
Ferstl/Pfeffer Christmas Eve festivities.. It was fun
as we missed it all together last year. Thanks to the
wonderful Grab Bag game, Dick came home with Aunt Joan's
beautiful quilt...(translates to I came home with a
beautiful quilt...ha)

We made it home in plenty of time to go to Midnight Mass
at 11:00. This is a tradition for us. We started going
to Midnight mass as soon as the kids were old enough to
almost stay awake..ha My Mom, sister Jerri, and friend
Julie went with us. Hillaree and Harrison also served
Mass. It was neat to see them on the Alter on the
Holiest of nights. I enjoy this Mass and the Music..
Always brings a tear to my eye..

This Christmas, we are having fun at home.
Unfortunatley,it is never far from our minds where
we have been and where we are going...
But for tonight and tomorrow nothing but happy thoughts
of Christmas dinner and lots of presents.......

I better get to bed, as Santa won't be able to stop
if I am still up. I saw earlier on the Santa doppler
he will be in Beaverdale soon.

Merry Christmas to all and to all a good night!

"Backward, turn backward
O time in your flight;
Make me a child again
just for the night"

Wednesday, December 21, 2005 11:35 PM CST

Four Days until Christmas...

The kids are out of school...Vacation started
at 12 noon...They are pretty excited.

Dick and I started our shopping tonight..
No Rush...

This is our simple Christmas....

Hollister is very tired and worn out today...
I started an IV tonight...Hopefully, that will
get him back on track!

Today was a Sad day for us. The service for our
friend Angie was today...One this morning and one
this afternoon at the Hospital. She was quite the
lady and the whole town will miss her. It was quite
emotional for us also. It is sad to say that we
knew most of the therapy dogs there. It is also
hard for me to imagine Hollister being in the
hospital and Angie not with us....
May the perpetual light shine upon her!!!

Hollister hasn't been able to volunteer (work)
at the hospital, it is difficult for him to get
around. He has been very saddened that he isn't
there helping with the kids....
A month ago, a young man called and wanted to
volunteer but his work schedule is unpredictable...
He couldn't sign up for a set day of the week, so
they had to think what would work for him and the
hospital....Our friend Julie called us and asked if
it would work for him to be Hollister's volunteer
buddy...What an awesome gift...Hollister worked with
him today..they work about 2 hours a week. They work
with the Childlife department...His name is Toby
and he is a Hockey player with the Iowa Stars...
His time is a wonderful gift to Hollister.
Hollister gives him all kinds of pointers...Toby
listens to Hollister...In such a short time, I think
Toby "gets" him...
If you get a chance to see an Iowa Stars game,
cheer loud for our favorite player....#19!!!!!

Our visit to Rochester was less than desireable...
The MRI was also less than desireable...I used this
emotional day to put it behind me...
I am choosing to not think about it until
Christmas is over...
This is our Christmas at home...and I will not
ruin it thinking about "stuff"

We will be having a wonderful simple
Christmas at home...

Christmas gift suggestions:

To your enemy, forgiveness
To an opponent, tolerance
To a friend, your heart
To a customer, service
To all, charity
To every child, a good example
To yourself, respect.

Sunday, December 19 2005 12:12 AM CST

New Photos...Dallas

The Tree is Standing...Yeah...
Tied to the wall...haha

What a week it has been...

Hollister has been tired and sleeping a lot.
He is fighting a cold or sinus...

I try not to let it happen very often, but
occassionally...once you start crying you can't
stop!!!This was one of those weeks.

The week was the 11th anniversary of Ed's (Dick's
Dad) death. Hard for us to believe that it has
been 11 years. Harrison was just a few months old
when Ed died. We wonder what things would be different
if he hadn't died. Hollister and Ed had a special
relationship. Dick and I are amazed at how much
Hollister looks like him. His personality is similar
also. It makes us laugh when we hear it from other
people...

On Saturday evening our friend Angie died. She was
the pet therapy and Ben the Bunny keeper at Blank.
She was more than that, she was our special friend.
She took such an interest in Hollister..She and Ben
the bunny spent hours with us last fall. She was so
hopeful that Ben would lesson some of the headaches
and pain. She was a sweet caring person and we miss
her already.

Then someome from our Beaverdale Dahls won the lottery...
It was almost more than we could take in one week...
How could this happen!haha We like everyone else
are hoping it is a long lost relative...haha

Not sure how I get from day to day sometimes.. It is
all a blurr, and I feel so numb.

Then something happens and God sends you a message and
you feel it loud and clear...And you know with every
ounce of your being that you are a live....

That happened to me about 9:30 on Wednesday night...
I fell down the stairs...boy oh boy did I know I
was alive. Now, I truly had something to cry about!
I actually went to the Doctor, I was very lucky I
didn't break my back. He said I have great bones...
Finally paid off, all the years Dad milked cows and
I helped..haha...But, I am bruised and swollen and
cracked a rib or two....but I am fine.

Tonight, the door bell rang..and much to our surprise
we had Christmas Carolers..They were the best Carolers
we have ever had. They were awesome...They brought with
them baked yummies and new ornaments for our "broken"
tree. I was so touch by their kindnesses...that I of
course started crying. Thanks to Deb, Ellen, Maggie,
Cole, and Ben (and the puppies), Shelly, Amy, Karen,
Liz, Dan, and Abby, Shawn, Michelle and Bryson.
They are the best friends that I could ask for. They
may have started out as Hollister's Nurses and
Therapist's...but they go above and beyond. They all
take such good care of Hollister and all of us.
I feel honored and privledged to know this group.

We are ending this week on a happy note. What a great
feeling to know so many care. One week until
Christmas...No more tears....

Life brings simple pleasures to us everyday.
It is up to us to make them wonderful memories!

Hollister and I are headed to Rochester in the morning.
He has appointments on Monday and Tuesday. He is having
a MRI done on Tuesday AM...I am hopeful there will be
some improvements....
We are also meeting our new geneticists...

Keep the good thoughts...I will write when the
appointments are done!!!

Only 6 shopping days left!!!

Monday, December 12, 2005 2:36 AM CST

The emotional roller coaster continues....

We finally got the tree decorated this afternoon.
We haven't decorated a tree in the four years that
Hollister got sick. It was fun to see all the
ornaments. It was also difficult to see the history
of the last 18 years of our lives. Hollister was
as happy today as he was when he was 5 years old,
knowing his paper Angel was on the top of the tree.
It was something watching him....
Hollister is thrilled with the tree..He keeps saying
how beautiful it is...It is real and he likes it.

It is hard for me not to think....
about where we were a year ago today....
On our way to Rochester with a very sick boy!
Little did we know what we were facing....
A fourth stroke...
One of which has left him devastated...His right
side continues to be numb, his vision(questionable),
his hearing weakened, and the disease progressing...
Hard to look past that...

But, we continue to thank God everyday for the
opportunity of time with him. We have made
sacrifices for our family so we can have Hollister
with us. Hillaree and Harrison do an awesome job
of understanding and accepting. I worry about
them, their youngs lives have seen so much in
the last 4 years.

Hollister was feeling kind of rough tonight.
Complaining of a sore throat...I will keep a close
eye on him. Hopefully, he will rest well.

The kids were all in bed...about 10:30...
Dick, my Mom and I were watching TV on the back
porch....we heard a terrible crash and glass breaking...
My heart sank....In the living room, the tree had
toppled over...
I started to cry, I could see broken ornaments...
Hillaree was crying with me. I immediately wanted the
tree out of the house. I was heartbroken.
Dick and my Mom started cleaning the MESS up..
and Hillaree (God Bless her) was trying to find
ornament pieces to fix.
It isn't the tree or even the ornaments...It is
what it all represents...It represents us, before....
Hollister got sick...Those "stupid" ornaments hold
so many memories of a life that was happy.
I couldn't stand to lose a single piece of
that. I could see his poor ripped Angel...that we have
had on the top of our tree since 1992...I cried even
harder...Hillaree cried as hard, hearing how upset
Dick and I were and hearing the hurt
in our voices. It was a very tough moment for all of us!

I am sure I was not crying because of the broken
ornaments...but, I am crying because of our
broken lives..

So on this day of not wanting to look back,
I am not sure I can look forward!

Thursday, December 1, 2005 12:00 PM CST

Happy December!!!

It is truly December here... Snowy and Cold...
It is almost like a Christmas Card...
Except...this is real life!!

The Sun is shining brightly today. Nice Change!

Our trip to Dallas was a lot of fun.
Too bad for the Cowboys they lost. It was a
dream come true for Hollister.
Our friends Jayne and David(from Lowden) were also
in Dallas at the game. On Friday night, they took us
for a "Limo" ride around Dallas and Fort Worth.
It was a lot of fun and the kids enjoyed themsleves.
We drove by J. Jones(apparently he owns the Cowboys)
house, pretty nice!!! Hollister wanted to stop in and
argue football. We decided to keep going!
It was the trip of Hollister's dream...Football and
Hockey all in the state of Texas!
Hillaree thought it seemed like a "boys" weekend!

A year ago, I didn't think Hollister would be here to
make a trip like that. He has worked so hard to be where
he is. I don't why he is still here, but I am certainly
thankful. I look at his limitations and all that has
changed because of the strokes..and I am broken hearted.
I so badly want his right side back, I so badly want
his vision back, I so badly want him to hear, and I
so badly want his mind to connect...
But, he is here and in my eyes and God's eyes...
He is perfect.
I am very greatful for the gift of time. It can never
be enough...but I understand what I have been given.

This being the first week of Advent, I have lots of
mixed emotions. I am not sure how or what but Christmas
will arrive on December 25. Christmas was a difficult
time for all of us. I know, that I am going to keep it
simple and remember what we are celebrating!

Hollister is doing OK this week. He tolerated the
trip and car ride well. He looks good. He is tired
but OK. I weighed him today, he is down to 105 pounds.
That is down from his all time high of 119 pounds.
Hopefully, he will gain the 5-10 pounds this Holiday
season that the rest of us will...haha

Your thoughts and prayers attribute to Hollister's
being here this year. I am thankful to all who think
and pray for him.

As we head into the Holiday season let us remember

"Jesus is the reason for the season!"

Thursday, November 24, 2005 1200 PM CST

Happy Thanksgiving!!!

Many of you are sitting down to a table worthy
of thanks...

We are headed over to Texas Stadium for the Dallas
Cowboy game..We made it to Dallas about 8:30 Wednesday
morning..It wasn't a bad drive. We left Des Moines around
10pm on Tuesday...

Last night we enjoyed a great Texas Stars game. We had
awesome seats, thanks to the owners of the Stars..It was
great fun...

Hollister has dreamed of going to the Dallas Cowboys
Thanksgiving day game since he was a little boy. Last
year, it was an impossible dream...This year thanks to
Julie, it was a great Graduation gift.

It has been a rough year...and we are here...That in
itself is enough to be thankful for!

Hollister's caringbridge page has been up an running for
a year. I am so touched by all who have visited and
those who have left notes...
I never thought, we would need it so much...

Thanks to all...

Happy Thanksgiving...

Friday, November 18, 2005 1:35 PM CST

Happy Friday...

Today is the day we have been waiting for...
Harry Potter "Goblet of Fire" opens in the
theaters today!!

Hollister and I started reading those books together
when he was in the 7th grade...Seems like it was
yesterday, we were fighting over the 1st book. Now
Hollister listens to them on Cd and Harrison and I
continue to enjoy the books.
We are looking forward to this movie as we have the
previous 3!

Hollister had a very "rough" week. He has been fighting
a cold the last 10 days or so...and on Tuesday night,
I finally convinced him that an IV would help...
and so I started one on Tuesday night,
Wednesday morning...it came out. This was a perfect opportunity
for a hot steamy shower, trying to loosen
up the "Crud"....Makes me nervous, after the pnemonia
last year...His lungs are very fragile! I was lucky
again and was able to start an IV again..Sometimes,
those IV starts are a gift from God! haha

He looked bad on Wednesday, and slept most of the day.
I kept asking him, if he wanted anything to eat or
lunch brought in....
He is so funny, typical Hollister...Lying on the couch..
Coughing...spitting up, and sick...at 2:30, he said...
"Mom, I think I can eat some McNuggets for lunch..Call
Aunt Jerri"...so I did, and she brought him "lunch"!
He ate 10 Nuggets, fries, and a Coke(no ice)...
That was more than he had eaten in days....He makes me
laugh! His personality is always intact.

It has been a rough few days here. He has been house
bound..No school, no therapy...no lunches out...HOME!
Today he looks better, the IV came out yesterday.
I told him, we would see how he does without it. He is
still tired and not a lot of energy...but I feel lucky
he didn't have to be hospitalized.
I am thankful, we have the ability to start an IV
and care for him at home.

Here's to the weekend and all the activities that
it brings...
For us... The Harry Potter Movie!!!!

Tuesday, November 15, 2005 1245PM CST

The word of the day is WEATHER....

Last Saturday night there were tornados in central Iowa.
That added a lot of excitement to the Iowa State game.
There was a weather delay...Tornados in November....
We waited until the last possible moment to head to Ames.
It was worth the wait..ISU beat Colorado....
It was an important game to Hollister...His buddy,
Ben Carpenter(ex-Dowling quarterback)...plays for
Colorado. He kept asking during the game, what's the
score, and...Ben is still playing good....right!
Hollister is very proud to call Ben his friend, and
wants everyone to know how well he is doing!

As I write this, it is raining, mixed with snow...
Too early for this mess. I guess Fall is over and
winter is here.

Harrison has been feeling poorly for sometime...I finally
got him to the Doctor yesterday...Poor little guy is
having an asthma attack...Most likely, allergy related...
He is on lots of medications...hopefully, only
a month or so.

Hollister and our friend Julie went to a sports bar
to watch the Dallas Cowboy game. He was pretty excited
to see it on the big screen. A man in the establishment,
moved so Hollister could have the table right in front of the big screen.
Later, he asked Julie a little about
Hollister, and said..."It feels good to make a
difference!" Thank you..stranger for making a difference
for Julie and Hollister. Every good deed can be accounted
for! It was a nice outing for him. He was pumped, the Cowboys won!

Hollister continues to have some good and bad days.
He is tired after therapy today and is sleeping
on the couch... The fire is on in the back porch..He
is warm and cozy!

Last night, right before bed.. I did something, I never
allow myself to do. Hillaree was looking for pictures
for a school project. She wanted me to look at the
albums with her. I saw entirely too much. It is still so
hard to look back, not just at Hollister, but at Hillaree
and Harrison also. Every picture of Hollister was
either before or after he got sick. He was such a happy
healthy child, it is hard for me to look back and see
that, knowing what lies ahead for him! It is the same
for Hillaree and Harrison, so much has changed...
Childhood's gone and changed forever.

We live a a life in this house, so different than
I ever dreamed. Many ways it is not better...We don't
get our projects done, something is always waiting to
be fixed or put a way, and don't mention the laundry....haha....but...
we have learned to live today..don't wait too long to
do what is important.. We watch movies, we take trips,
we go to football and hockey games, we play cards and
dice...We like to be with friends and family..
we spend our time as a family...intact and whole. We
laugh, we cry, and we thank God for what we have. It may
not seem like much on the outside....but inside......
It is more than I ever hoped.

For now the pictures and home videos stay on the shelf.
Someday there will be time to look back and remember.
Today, we are very much in the present.

The present has big wet snowflakes.....

!!!!WEATHER!!!!

Wednesday, November 9, 2005 12:41 AM CST

The weather is taking a turn...It is cold and
windy.. Very Fall! I fear, the leaves from up the
street are blowing into out yard.

Hollister has had some ups and downs in the past week.

He got his flu shot last week. That is always a very
stressful time. He survived. So did Hillaree and Harrison!
He is wearing down. He is sleeping a lot. Last week his
myoclonic jerks were out of control. He fell twice and got
lucky on the steps a couple of times that I was behind him!

His headache continues, somedays to the point of
not being able to get out of bed. I feel so bad.

We continue to fight to get his meds. I fear some of his
lastest difficulties may be from not getting his meds...
We continue to have problems with our insurance and the
Mayo Clinic pharmacy....If we can't get the meds we
can't give them. Some meds he gets weaned off before
we can get it re-filled. It is crazy!
I would hate to have to listen to some of the
conversations I have had with the Mayo Pharmacy techs...
One conversation consited of me saying..."I Don't Understand!!!!!"
Since July, when Dr. Whiteman left...we have had lots
of problems...Doctors who don't understand MELAS( I
seriously doubt they can pronounce it)...are making
changes in his drugs...CRAZY!!!!!!
I wish this nightmare on no one!

We have been following the Dowling Catholic Football
team all fall. It has been a lot of fun. It has been
a great way to get Hollister out of the house. He likes
to see the people and the games. The Coaches continue
to treat Hollister like "Gold". Makes me so proud!
This week has been a little bittersweet for Hollister.

The Team made it back to play in the UNI-dome on Friday.
We are proud. Hollister is very proud of "his" team.
Monday night after the game...when we knew we were headed
to the semi-finals....Hollister said...I wish I hadn't
done that thing in May(graduated)....I wish I was still with the team.
He said remember, when I was a freshman....
I didn't get to go with my team...I was in the hospital...
I missed it all he said!
My heart broke....
He has been remembering a lot about when he got sick..
He knew it was 4 years ago. He has been talking a lot
about all that he has missed and given up. Now this week,
he is excited for the football team...
but knows what he gave up.
He has been talking a lot of playing hockey...and
why he can't play now. He sometimes gets mad at
Harrison who is still playing. He doesn't understand
why he can't play broomball with Dick...He reminded him
he was 18, old enough to play!

I try to "justify" in my mind how or why...but when
Hollister remembers...it is almost unbearable....

Friday...we will be heading over to Cedar Falls to watch
Hollister's Dowling Maroons play The Valley Tigers....
It will be a moment to remember!

GO MAROON'S

Sunday, October 30, 2005 1:20 PM CST

Happy Halloween!!

Tonight is begger's night in Des Moines...
Can't wait for Gobblins and Witches to come
calling!

A week ago, Hollister and our friend Julie had
lunch at Hooter's. Julie lost a bet...She payed up!
It was a fun lunch...but....Hollister got very bad
news...His very favorite waitress Carrie is moving
to California...He is very sad, and he remembered that
last night was her going away party...We forgot...
He is sad all around..(haha)...So here's to Carrie...
(She is the girl in the picture at the top!)
Linda...He is coming for you next....I believe you
owe him wings.....

Football season is over...Yeah..on to the Playoffs.
Dowling finished with a record of 8-1..Not bad.
Hollister is very proud. I know he wishes he were
still part of the team..He missed so much last year.
Dowling plays Ames on Wednesday.. Should be a good
game. Hopefully, the weather will allow us to go!

Fall is definetly moving forward. Lots of yard work to
be done. The leaves have been very pretty this year.
I think I am appreciating them more this year, as we
missed them all last year.

It is four years ago this week that Hollister first
got sick. Not sure how four years can pass so quickly.
It seems like yesterday, that he was at the Iowa State/
Missouri game with Harrison. He rode home with some
friends of ours, and was already seizing. That was
a tough night..Followed by early Sunday morning that
he couldn't see. We took him to the ER and the rest is
history... The Doctors knew he was very sick, they didn't
know with what...It all seems so surreal now.
I couldn't believe that he had had a stoke. He was
only 14...how could that be.
That Tuesday morning when they life-flighted him to
Rochester...That was the sickest feeling I have
ever had! I had no idea how sick he truly was. I
don't think any of us could have. It truly is by
the grace of God that he didn't die. Dr. Whiteman
has told several times, that he never thought he would
make it home, he was very sick and metabolically unstable.
And here we are 4 years later...4 strokes...and countless
life changing events.

What I have learned in the last years...I do truly
believe that there are a lot of generally good folks
out there..Some known and some unknown...Families are
what they are...some will draw closer...and some will
back totally away, not seeing us at all.
I am saddened generally by people...The people who
don't understand...that there are "other" terminal
illnesses beside Cancer..(Which is Horrible)..I have
tried my best to educate these folks.
I now have more friends with "sick" kids than not
and I am comfortable with that.
I have also learned to value my time. I appreciate
my time with my family still intact. Nothing gets
better than that.
I have learned not to look to far ahead. When your
looking ahead somedays..you forget what is happening
right now in your life. I guess that is why they
call it the "present".
I have also learned that we have pretty amazing health
care right here in Des Moines. I am thankful that we
have a Children's Hospital....and that the Mayo Clinic
is only 3 hours away..when the need arises.
I have learned that my Faith will continue to be tested.
I know, that we wouldn't be where we are without our
faith. Hollister has great personal faith...and he
shows us time and again. Dick and I continue to rely
on and trust ours..

It has been quite a journey for the last 4 years....

A little fellow who I have followed on his page for the
last year or so...and he was in Rochester last Christmas
when we were...He was only six...He won his battle with
Cancer last night and is playing in the heavenly
playground. Pray for Brant's family...
Let the Perpetual light shine upon him!

Here's to a Happy Halloween and lots of good Candy!
May your treat bags be full!!!!

Monday, October 17, 2005 8:19 AM CDT

Happy Monday!!

It was a year ago today, that Hollister had his
3rd stroke...It was part of the long process of last
year...It was a tough time....

This morning Hollister still sleeps..He has class at
10:10....

Hollister had a good week last week. He looked good
and felt pretty good..It was a good week for all.

Dowling Catholic won against...Ankeny on
Friday night...It was a beautiful night for a game!
The officiating was bad...so winning inspite of
the officials...is all the sweeter!

We took Hollister to the Iowa Stars Hockey game last
night...First win...against San Antonio...Bittersweet
for Hollister..Hollister loves to watch Hockey, and
having the Iowa Stars so close has been a gift. He
loves it!

He continues to have difficulty getting and
keeping his food down. We continue to "brainstorm"
on getting enough calories and medications.
Hollister and I have talked about a permanent feeding
tube...at this time..he doesn't want one..(and I don't
blame him!) so...we will continue to be creative..
It is the disease progressing...and a feeding tube
will not stop the disease!

Here is to another great fall week. Hockey has started
for Harrison..Wrestling and Swim Team (for Hillaree) are
on the horizon...Winter is on the way!! YUK

Hollister continues to work hard. Rightie continues
to be non-functioning, (NUMB)..I really hoped it
would be working by now..His vision and hearing
fluctuate...Depends on the day. His energy level is
very low. We are all learning to adjust to what
the normals of our lives are now.

It has been an unwanted and uninvited journey...
but yet a journey we have been on for a long 4 years.
It has been very hard watching him stuggle and seeing
the disease march on.
It continues to be Hollister's Journey..and the
rest of us, if we are lucky will learn and take
something powerful away from it all.

Here's to another "good" week at Home...

There is no place like home.

Monday, October 10, 2005 8:29 PM CDT

The big weekend took a toll on Hollister yesterday!

Dowling won, Iowa State choked....
Iowa Stars lost...
The Chiefs...(Harrison's team) had a BIG win..
Last game...first win...
It was a weekend of Bleacher Butt!

Hollister made it to everything except Harrison's
game, Sunday afternoon. He was exhausted..His head
was hurting...in the back..makes me nervous. He was
a little "wacky" at supper last night also..
Didn't keep any food down yesterday at all. Was a
tough day to be Hollister.

I was a little nervous getting him up for school today.
He got right up and I helped him get a shower and he
looked pretty good. I am amazed! He made it to school
and out to lunch. Then home for a nap. I insisted it
would be OK if he helped me with the laundry...but he
thought a nap sounded better! haha

We continue to live in a paper trail to "hell"!
We have insurance difficulties that have followed us
for the last 4 years.
Again we are struggling with our insurance to pay
for Hollister's medications. It is crazy..Our insurance
hasn't changed...but this year, they have decided not
to pay for his Cocktail...It is a big stress and
inconvience for us. It takes a lot of energy to
continue to argue with the insurance companies...
It seems so crazy...that they don't want to pay for the
prescribed care he needs.
It amazes me that the people making decisions have such
a limited understanding of Mitochondrial disease, and
they can decide what he needs. It all seems very strange
to me. If I could find a way to personally meet with the
CIGNA people face to face..I might. The worst part is
that TPC is self insured and the insurance commisioner
has no recourse...It seems so wrong to me!

Enough......

This is a slow week for us, we are in between sports
for a week or so. That never happens. The weather is
suppose to be nice most of the week. Yeah!

I continue to marvel at Hollister. He is somebody...
I am surprised by his spirit and his courage. His
sense of humor is very much intact!
Hillaree and Harrison amaze me also. I can see them
changing daily. They know so much at such a young
age. I admire them also.
The three of them continue to drag Dick and I along!

The real issue in life is not how many
blessings we have, but what we do with our
blessings. Some people have many blessings
and hoard them. Some have few and give
everything away. Mister Fred Rogers!!!

Here's to our Blessings!

Thursday, October 6, 2005 10:53 PM CDT

Color Change....Cardinal Red and Gold..
Go ISU...Home game on Saturday..Hollister
will be there!

Today was a busy day...
Hillaree and the 8th grade class had a "retreat"
at St. Thomas Moore Center at Lake Panorama...
I was lucky enough to go.(Hillaree even asked me to go along!)
That is about an hour bus ride from Des Moines..
It was a nice day and I think the kids had a lot of fun!
I was once again reminded...why I am not a teacher.

Hollister had therapy this morning, Thanks to Gayle
for driving him for me...this allowed me to a go on
the field trip. She also took him to lunch..That was
above and beyond..but I know he was thankful!

Lunch is one of our favorite things to do.

Tonight, we took the kids to the Iowa Stars Hockey
game. It was a lot of fun. It was the first
regular season game in the new events center. What
a nice facility..Hard to believe it is in Des Moines.
We have tickets to go again Saturday night. They lost
tonight...but it was great fun.

Life is about all the things we take for granted...
and then one day...all those things are taken away from
us..
In my weakness, I continue to reflect on what used to
be. What I took for granted..
Sitting at that Hockey game tonight..left a huge whole
in my heart. Sitting next to Hollister..and I had to
tell him what was going on...We got hooked on Hockey
when he was 4 years old...His first year he played on
the North Stars...(before Minnesota sold them to Dallas).
Hillaree was only a tiny baby when he started to
skate with a folding chair..Hillaree and Harrison
both grew up at the Ice arena, we spent so much time
there. Hillaree did the learn to skate program at 3,
she walked off the ice and up the stairs in her
skates, to tell us the teacher didn't like her Hockey
skates. Harrison also started Hockey at 4. Hollister
helped coach him in the polar program..He was in the
8th grade...that was his last year to play hockey.
Harrison finished his hockey tryouts this week...

Tonight, it took all of Hollister's energy to get to
his seat..He was tired. The walk from the parking lot
and walking around the arena and the the stairs to
our seats...It was exhausting for him and a hard slap
in the face for us.

What we think we know.. is changed and gone forever.

We will take
the kids again...Hollister said when the game was over
that he had a good time. It was fun to "watch" hockey
again! I guess that is what is important!!

Dowling Catholic plays Indianola Friday night.
Weather permitting, Hollister will be there..
ISU game on Saturday afternoon...
Iowa Stars game on Saturday night...
Sunday is Harrison's last Football game...
Sounds like a weekend to take nothing for GRANTED!

I keep reminding myself..."A Child will lead them!"

Sunday, October 2, 2005 10:28 PM CDT

Happy Birthday Hillaree...14 today!!
14 years ago, Hollister was jumping up
and down so proud and excited that he
had a sister, and he was finally the
big brother!
I am so proud of who Hillaree is becoming!
I like her more each day. She is on her
way to becoming such an incredible person.
Happy Birthday Hillaree...
She and Harrison went Ice skating today, and she
fell on her wrist...Made a trip to the ER...Not
broken, badly sprained...Hurts a lot..Hard to spend
your birthday hurting...

Oh what a week it has been.

Hollister has been fighting a bug all week.
It was a tough week for him. Finally on
Wednesday, I started an IV..He got a lot of fluid.
I ran it continuously until Friday evening. I
disconnected it so he could go to the Dowling football
game. I hooked it back up, and when he fell on the
steps on Saturday afternoon, he pulled it out...
Not good. I think he felt a little better.. at least
he was hydrated.
Not sure what to do about his appetite. He had
a hard time keeping anything down last week.
Lots to worry about!
He felt bad Saturday afternoon when ISU lost to
Nebraska in double overtime..How sad!

These have been some difficult days! I have spent the
last few weeks thinking entirely too much. I have
learned that when you sit in my shoes, thinking too
much can be very dangerous. I have also learned that
thinking and crying generally go hand in hand.

I read tonight about a little boy that I follow his
caringbridge page...he is from the Des Moines area..
(a friend of a friend) I don't think he is 2....
He died of brain Cancer...He and his family had fought
a very hard battle since March...He was also in Rochester
when we were there. I know how happy he made his
family and how much he will be missed! Please keep
little Alex and his family in your thoughts!

In the last 4 years, I have met more people with sick
kids...than without. It is hard to imagine all the
changes in our lives.

My faith is intact tonight, but it is bruised.

I have often wondered when people tell you that God
doesn't give you more than you can handle...
(really, there is no choice..you do what you have
to do!!!)
BUT.....
If at some point you have the opportunity to tell God,
it might be too much!
If it is too much to "handle"..
if he would change it all back, make it right,
and find the real person to "handle" it!
Just a thought...

Please pray for Alex and his family!
Let the perpetual light shine upon him!

Thursday, September 22, 2005 3:23 PM CDT

New Pictures...
Pictures from Alaska...
The group photo is right before we got on the
boat in Van Couver...We had matching orange t-shirts..
No one on the boat missed us! It truly was a trip of a life time
and we had a great time. So many good memories
from this trip!

Hollister had a lunch date at Hooter's with
Dr. Flores..(Dr. Valley)..Hollister had a football
bet with him from the Dowling/Valley game. Hollister
had to buy him 20 wings...It was a fun lunch and an
OK way to lose a bet..

Hollister continues with school and therapy.
He fell at DMACC on Tuesday. Not sure what happened..
but his legs are skinned up and bruised. Not sure how
he didn't really get hurt!

He continues with his eating difficulties...He was
only able to eat 4 wings at Hooter's..A long way from
his record eating days.

Hollister continues on.. He is brave and tries so hard.
Many days, I would have stayed in bed...But he gets up
and moves..headache, discomforts, and pains...
He keeps on keeping on!

Monday, September 19, 2005 10:24 AM CDT

Another Monday...

Hollister is in class now. He goes for an hour on Monday
and Wednesday and 2 hours on Tuesday, for now. He is
tolerating school..so so.

He continues with his therapy, his hours have been
lessoned because of school. We are trying to get him
moving at home more, this has been very unsuccessful
so far. He is tired. I keep reminding him...
USE IT OR LOSE IT!!!!!

He is having a more problems with eating and getting
his 100 pills down. He is very thin. I continue to
brainstorm and I am trying hard to get calories in.
(not a problem at all for myself!!!hahaha)

We have had some busy days since my last note..
Dowling didn't beat Valley...It was tied with 3 minutes
left..A moral victory for us!!! A note to the Valley
student who "streaked" on to the field and was finally
arrested....Streakers..are generally NAKED!!!
Iowa State...beat Iowa...Big!!! It was a great game
and lots of fun!!! Hollister and I were the ones
tailgaiting..doing HOMEWORK!!! He is a little obsessed
with the homework thing!
Dallas won last Sunday..and play the Redskins tonight!
Go Cowboys!
It was a big weekend for us.

Last Friday, we drove over to Newton. Dowling won, we
are trying to take him to the games while the weather is
good. He his having a good time, lots of people stop and
talk to him. The cheerleaders game up to see him. He was
smiling from ear to ear! He got to talk to some of the
coaches and players after the game. He was happy!

This past weekend was also the Beaverdale Fall Festival.
Hollister got up and went to the parade with us on
Saturday morning. Everyone knows it is the world's
greatest parade. It was great fun. Saturday night,
we went up to the "party"... Hollister went along.
We pushed him up in the wheelchair, we all had fun.
There were lots of people to talk with. The highlight
of the night was Linda(Dick's Cousin) taking Hollister
down the big slide..Thanks Linda...you are the best.
He was still talking about you and that slide on Sunday.
Most importantly, we were there..all of us together.
Last year, we were in the Hospital...and Hollister was
very sick. I never dreamed we would make it home...let
alone to the party! It was truly a remarkable night!

The reality of what is to come, is with us everyday.
Dick and I are trying to enjoy our minutes. We are
trying to help Hillaree and Harrison to take advantage
of "our" time. We are trying to provide as many happy
thoughts and memories of our family for all of us.
It is never far from my thoughts..that this might be or
could be the last time we are all able to "do" this.
Hollister's health continues to change before my eyes.
I know how fragile his life is...Even during the
happiest times, sometimes I am quiet or lost in a
thought...This is when I am trying so hard to remember
their laughter or the look on their faces together
or how with the blink of an eye..everything will change,
and not for the better. It is still so overwhelming some
days.
So Another Monday roles along. We are home and we
are happy to be here, no matter what difficulties lie
ahead...

A Quote from Mr. Rogers book...
The World according to Mister Rogers......

Part of the problem with the word "disabilities" is that it immediately suggests an inability to see or hear or walk or do the things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in a constuctive ways? What of people who aren't able to form close and strong relationships? And people who cannot find fullfillment in their lives, or those who have lost hope, who live in dissappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilites.
Mr. Fred Rogers......

Thursday, September 8, 2005 5:07 PM CDT

We did survive the last summer holiday..

Monday Hollister did have a seizure. Not sure why or
where it came from. It was long enough for all of us
to go....ohhhhhh!!
It was enough to put fear into everyone's heart!

He did make it to school and therapy on Tuesday and
Wednesday. He is very worried about the homework...
He reminds me constantly...that we have work to do!

The past few days..he has been telling me, that he
doesn't feel good. He has a headache, his stomach
hurts..and I just don't feel good...
Last night, enough is enough....I started an IV and
have been running it since. He didn't go to therpay
this morning. He needed to rest.
He is now watching that "70's show" and laughing.
He loves, that show!

This will be a big weekend for Hollister...
Friday night is the Dowling Catholic Football
game against....West Des Moines Valley Tigers...
What do we eat...."Tiger Meat!!!" We will be at the
game on Friday night. Hollister as an Alumni of good
ole...DCHS!!!!
Saturday is the Iowa State/Iowa game...The game is in
Ames...Hollister will be at that game also...Go State!
He will be poudly wearing his Cardnial red and gold!
Sunday... The Dallas Cowboys play...Big weekend for
Hollister!

Hollister missed both of those games last year..
It will be great fun for him to participate this year!!!

We continue to take each day as it comes..Fall sports
are all around, and it won't be long before the leaves
fall.

Thanks to all who continue to keep Hollister in your
thoughts and prayers...He continues to amaze us with
his integrity and spirit.

Here's to a great "football' weekend!

Saturday, September 3, 2005 10:11 AM CDT

Labor Day weekend...

A hard weekend not to look back...

Harrison had football practice this morning at 7:30...
clear across town. We had to leave at 7:00 to be on
time.
Hillaree had to get up so she could keep an eye on
Hollister sleeping. (Dick is in Algona)....
I was a wreck, leaving the house.

Last year on this Saturday...Hollister had that
seizure with the almost deadly aspirtion.
Friday night, he was on the sidelines with his
Dowling Team. he worked very hard..He looked great..
That seizure... It was horrible. I can't help
but remember that day and all of the situations
that occured. I remember that day like it
happened yesterday.
I remember him being intubated and his oxygen
being in the 50's...(knowing how bad that is)
I can still see the "stuff" being suctioned from
his lungs..He looked so fragile.I remember the
look on Dr. Karen's face in the PICU and how worried
she was. I remember Father Kirby giving him the
anoiting and praying.. Praying for God to be kind
and merciful..but mostly to be selfish and keep
Hollister with me...and I remember being scared!
The therapists were all there with us, and they
were so sad. That is what I remember most, is that
eveyone who works there was so sad...
This was Hollister, everyone at Blank knows him
and cares! It was a very hard time.
It was the beginning of some very intense months
for Hollister and us.

Today, I can't help but feel thankful that Hollister
is home. He is making progress and hopefully, putting
some of last year behind us.
There are days that stick in my mind like D-day...
Every day, that Hollister has had a major event..
I wait for the anniversary of that day...to reflect and
put some distance between the event and life.
I think back, I look ahead, and mostly I try to stay
grounded with what is happening today...
And today, we had football practice, Hillaree is
babysitting, Dick is out of town, and Hollister just
yelled "Mom"...he is ready to get up.(music to my ears)
No seizures today, no trips in the ambulance,
no annointing of the sick....
Today, we are living..doing yardwork and spending time
together!!!

Life is Good...

Happy Labor day to all!

Wednesday, August 31, 2005 5:20 PM CDT

Wow, the end of August..
Will be fall before we know it.

Hollister started "college" this week. This was a
bittersweet moment for us...me.
He was signed up to take a Biology class with a lab,
and two college orientation classes. It was a total of
6 hours..
Two weeks ago we had an appointment with the counselors
and Disability coordinator for DMACC. We met with them
early in the summer, also. Unfortunately for Hollister,
he is "sick" and not disabled...He doesn't fit into the
black or white..too bad for him he is gray....
They were as helpful as they could be, but I left the
meeting not feeling very good. It was a long week
deciding...what Hollister should do..I was worried that
the Biology with the lab would be too much...
I mentioned my concerns to him, and he immediatly thought,
I think he is too stupid to go to college..My heart was
broken along with his!
Hollister and I had several long discussions about that
class. In the end, "we" decided not to take it. I want
him to have a success in his classes.
I don't want him to have so much worry and stress that
it is hard for him.
He will continue with therapy and volunteering at the
Hospital. These are very important. I want him to
have a chance to get stronger!
The last 4 years we haven't done much living. We have
been trying to get through things..Keeping him healthy
long enough to accomplish small goals...
Now is the time to live! If for some amazing mircle he
gets better, he can go to college full time. If not, I am
not wasting another minute of his time "getting through!"
I have assured him, we will spend our time going to
movies, out to lunch, and just goofing off!
I now wish, I had spent more of my time goofing off.
It is never too late!

Once again, life goes on. Hollister started college...
He is nervous and excited about being there. He is
very anxious about his limitations. It was difficult
for me, but "we" made the decision that we would not
sit in on the classes with him. When the door shuts he
is on his own..This may have been more difficult than the
first day of Kindergarten! haha

We are all trying to adjust to the new schedules of Fall.
The kids have lots of activities...Hollister wants to
make it to the Iowa State and Dowling Catholic High
school football games. Busy, Busy, Busy...

From the seat we had last fall, it is great to be
BUSY!!

To all our friends and my family who continue to check
on us. Thank you. It has been very difficult. If you
all hadn't been there for us, it would be impossible.
The support of all of you on this page is a real
gift from God...Thank you!!!!

Tuesday, August 23, 2005 4:15 PM CDT

Summer is offically over.

Hillaree and Harrison had there first day of
school today. I am struggling a little with the
thought of Harrison in 5th grade, he is in his last
year of elementary school. Hillaree is in the 8th grade
and in her last year of middle school. I can't believe
it. Hollister is out of school and should be on his way
to a Univeristy....

Today was a busy day, with the kids going to school.
Started as we have for the last 14 years...Heading out
to breakfast. This may have been the first year, that we
weren't late to school. I guess it helped only having
2 to drop off!
There arms were full of school supplies and all that is
now needed to start the year. I was allowed to take a
couple pictures at home...No pictures at school. How
times have changed. The day was success...I am hopeful
it will be a good year for both of them. Keep good
thoughts for both of them....sometimes life is hard
for them and classmates can be cruel.....

It has been a busy time at our house. Hillaree is playing
on 2 softball teams this fall...mostly for fun!
Harrison is playing tackle football. This is his first
year. I have to say that it is awesome to see him so
excited about it. It is funny to see him in his "full"
pads...He is tough...all 77 pounds...
Hollister made it out to Dowling last week to watch a
practice. The boys came to see him and huddled around
him. He also had the opportunity to meet the new
Coach..He was pumped about Football. It was fun to
see some excitement!

Hollister looks pretty good today. He had therapy and
worked very hard. He is talking a lot..mostly cracking
us all up. His dry humor is even drier with his word
finding difficulties...

Sarah Kiener, a classmate of Hollister's stopped to see
him yesterday. That was a nice visit. She is a delightful
person. We appreciate her stopping by. Hollister
truly enjoyed that. She is headed to Washington DC today.
She is going to school there. Good luck to Sarah and
we will see you at Christmas!

This has been a year of adjustments for us. Last year
when we were starting his senior year...We had no idea
what we were in for. Little did we know, that was as
good as it gets! We were talking driver's license
and college...From August 14, 2004 to May 2005, he has
spent 27 weeks in the hospital...and the rest of the
time recovering..It has been a rough year for him and
us. I am not quite sure how we got to this point!

But, we are here now! Hollister continues to amaze us
all. Someday's, it is easy to see his disappointments
with life. The more verbal he gets the more apparent it
is that he realizes what he is missing. That is hard.
It is hard to explain "why", when I don't know.
The fact that he gets up everyday and lives his life..
amazes me..He is tired with a headache and lots of
obstacles to face...but...he does it..

Thanks to everyone who continues to support us.
These have not been the easiest of times. We are
blessed by all of you.
God is Good...All of the time!

Thursday, August 18, 2005 10:12 PM CDT

Dick and I took the kids to the Iowa State Fair
today..the greatest state fair!!
We have been taking the kids to the fair since they
were little.
Last year Hollister and I didn't make it, he was
spending the week in the hospital.. His trouble of
last year had only just began...he had a seizure and
aspiration on August 14...Day 3 of the fair!!!

Our week, continues to be one big roller coaster ride!
There has been a lot of ups and downs!
Sunday, I started an IV...he has gotten a lot of
fluid this week.
Hillaree and Harrison spent Sunday at the fair with
my cousin Laura...It was a nice distraction for
them. They had a great time.
Monday night, David Weber..came and took Hollister
to Hooters and a Movie...He was driving a 1966
Thunderbird...how cool is that. Hollister had a great
time. Thank-you David...
Tuesday afternoon, the kids all had Dentist appointments.
No Cavities...Yeah..How great is that. The kids
have an awesome Dentist, Dr. Tom Wilson.
He takes great care of them. He has been
very accomidating to us. I appreciate his
kindness and generosity.
Tuesday night, our friend Julie..came over with
Deli-sandwiches for supper...(a big plus...not eating my cooking!!haha)
She surprised Hollister with his graduation gift....
Tickets to the Thanksgiving day...Dallas game...She
tried last year..but he was too sick...He was so excited.
She told him..she wanted to do something really special..
So, we will be in Dallas on Turkey Day...I guess we
will watch "God's Team"....haha
Wednesday, was a quiet day...No therapy..no appointments..
no nothing...He rested and got continuos IV's...
He was sick and couldn't keep any food down..Not sure
what is going on! I am starting to worry about his
intake..He can't keep much down.
Today..the fair...Lots eaten...A Turkey leg, a
tenderloin, 4 corndogs, a popcorn chicken, cheesecake
on a stick, 2 monkeytails, 42 mini doughtnuts,
crabragoons,a fried twinkie on a stick, a smoothie,
lemonade, and water...lots of water!
It was bittersweet taking the kids today. We have had
so much fun there throughout the years...Today was
different...Hollister is weak and in the Wheelchair,
it is a different Fair pushing a wheelchair and not
a stroller! Brings tears and heartache, to
remember Hollister as a happy go lucky child. He couldn't
wait to see, do and experience all of the fair.
Dick and I are trying as a family to give Hollister
and especially Hillaree and Harrison happy memories.
Nothing spectacular...precious family time. Somedays,
it is very difficult to do...Unfortunately for Dick and
I, we wonder....is this the last Fair we get as a
family...Lately, that is how I approach everything...
This roller coaster is wicked..unlike any ride we
have ever been on.

Saturday...Hollister may actually get his Graduation
pictures taken...yeah..Better late than never!
Hopefully, it will be a good day..Thanks to my friend
Julie and her Cousin Jill for offering to take the
pictures...Should make it a little easier!

I am thankful tonight for another day with my family.
I know, that I truly cherish the time and laughter.
I relive the moments over and over. I want to remember
everything! Sometimes, I want this to be a dream, and to
have the opportunity to wake up and say, I get it...
I get the lesson, Hollister would be whole again...
and we would have a second chance..
This is no dream, this is life...
and the roller coaster goes on!

Friday, August 12, 2005 11:33 PM CDT

Happy Birthday Harrison..
He is now officially 11!
How cool is that.

We meet Aunt Judy for lunch in Webster City...
and picked up Hillaree. I am happy to have her
home. I like having my kids with me.

Harrison had a nice birthday..I think..

Hillaree and Harrison went to a movie. Hollister
stayed home and rested. He still isn't feeling the
best.

We decided to have a nice dinner out. The kids all
like to eat at Christopher's. Hollister really didn't
want to go, but we remined him it was his brother's
birthday. We went just the 5 of us. It is a lot of
work eating out with Hollister. We are never certain
how it will go. (Many night he throws-up in the
middle of a meal.) We really haven't been too many
places since Hollister got so sick...So...tonight was
a trial run. He did OK. He still requires a lot of
assistance during a meal. But we all did OK...
We thought it would be easier just us...we are used
to lots of interruptions!
Thanks to BJ(at Christophers) he bought us our meals
tonight...Thank you, that was very kind and thoughtful.
Hollister ate well!
We came home for an ice cream cake and Pupcakes....
(Thanks to Cindy and Steve!) Harrison had a good time
with Aunt Jerri, Gayle, Julie and Beth...His gifts
were "awesome"!!
All in all, it is great to be 11! He and Hillaree are
watching a new movie!

If Hollister continues to feel bad in the morning, I
will have to start an IV. We are trying to stay
ahead of what is going on.

Tonight, we give thanks for a Birthday...and the
fact, that we are all still together!!

Thanks to everyone who sent him emails...
He was very happy!
Happy Birthday Harrison Patrick Farrell

Thursday, August 11, 2005 9:15 PM CDT

Less than three hours and it will be Harrison's
birthday. It is hard for me to believe that my
baby will be 11. He is an amazing child with an
abundance of gifts. He gives us all so much. He
truly appreciates his time with Hollister. I admire
his patience.
If you have time, email Harrison with a birthday
wish...HPFarrell@aol.com
That will make his day. He checks everyday for
birthday mail!

Harrison had a football camp three nights this week.
He is so excited. This is his first year playing
tackle. He worked very hard at the sessions.
It will be fun to see how he does.

Hillaree spent a few days with Aunt Judy. I think
it was a chance for her to get a way from the maddness
in this house. It sounded like she had a good time.
Uncle Tom "let" her mow the lawn...on the riding
mower...Oh boy, wasn't that nice of Uncle Tom!haha

Hollister has had a quiet week. Less therapy this week,
(Karen and Allison are on Vacation)..He has spent his
mornings sleeping.haha

Hollister had an awesome visit with Mrs. Thierer
(Religion teaching at Dowling) and her daughter
Stephanie last night. He was very animated when they
were here. It is always fun to see him excited.
She brought the kids awesome Notre Dame T-shirts..
Thank you very much...

The rest of the week, he has been struggling with
some nausea and unexpected vomitting. Not sure
what is going on. He continues to say that he isn't
felling very good...He has slept a lot. I am keeping
a watchful eye...

Not much else.... We continue this journey...
somedays tired and sad...but we continue.

I read what Max Lucado wrote about Faith...
It reminds me that Faith is
everything!!!!

A person is made right with
God through faith.
Romans 3:28

"Dare you stand before God and ask him
to save you because of your suffering or
your sacrifice or your tears or your study?...

Nor did Paul. It took him decades to
discover what he wrote in only one sentence.

"A person is made right with God through
faith" Not through good works, suffering,
or study. All those may be the result of
salvation, but they are not the cause of it."

Happy Friday...
And Happy Birthday to my Beloved Harrison!!!!

Sunday, August 7, 2005 11:43 AM CDT

Happy Sunday....

The Temperature is rising..and so is the Humidity!!!

Hollister is up and moving already.. Before Noon!

He is having a much better week.

It has been kind of crazy as something is reconnecting
in his brain. He is talking non-stop. Sometimes you
can follow him...and sometmes..NOT
It has been kind of crazy!

He is wearing us out. The other night, Harrison and
Hollister were eating supper on the back porch.. I
chose to eat away from him....When they finished
Harrison brought the plates back in...he was
pulling at his hair...and said enough..Hollister
was rambling about something...I laughed and said..
I knew how he felt, that had been my entire day!!!
Hollister could come by this talking and rambling naturally!!hahaha
Hollister volunteered at Blank on Friday. Thanks to
Julie he got to eat there, and used his $5.00 in the
cafeteria. This is very important ot him. That is
the only pay! Thanks to Sara for letting him spend
time with her there. It truly makes him feel he belongs
somewhere. I am sure he talked non stop. Friday night
he had "work" stories! He was proud.

Yesterday, Uncle Tom brought a boat to Saylorville
and took us boating. Hollister had a grin a mile
wide on his face. Hillaree and Harrison had a great
time tubing. It was a treat. They are both sore today!!
(Not sure how Hillaree will play softball!)
Hollister asked if he got to go tubing...we said no, I don't think so..
It would be a lot of work,
getting him in and out of the boat..and the
physical limitations are great!
He immediatly got SAD!...So, "we" decided it would be
worth a try....with much effort, we got him on the tube!
He was a smiling fool! It is a moment, that will never
be forgotten. He was happy. He kept wanting to go faster!
He held on a long time. Not bad for a kid with no feeling
in his right side, deaf(without his hearing aids...)..and
almost Blind....Not bad.....
With out a doubt...a moment that will live in our hearts
for along time!
The effort it to get him and out of the boat...the
worry of him out there...The nerves of the 4 adults in
the boat...
The smile on his face.....Priceless!
He was tired after his time on the lake...I wasn't sure
how he would recover..But today, he looks good...

On this Sunday...We smile and say thank you..Thank you to
to all that is good and right with this crazy world!

Tuesday, August 2, 2005 9:26 PM CDT

Happy August!!!

Hard to believe it is August..until you go outside,
the heat, humidty, and chance of rain...
seem very August like!

Sweetcorn, tomatoes, and cucumbers...
gets no better in Iowa!

Last week was a rough one. Hollister looked tough!
The IV stayed in until Sunday afternoon. He got a lot
of fluid. It really let him rest, and that is what
he needed.

He is still tired, but looks better. He made it to
therapy yesterday and today. He continues to work
hard. He is talking non-stop these days. Lots of
stories about Alaska. It is great. He is funny to
listen to!

His cousin Jamie came over on Saturday and took him
and Hillaree and Harrison to a movie. That really
cheered him up. It was good to get him out of the
house..He loves Movies...he was happy!

Thanks for all the inquiries about Hooch. He has had
a hard time adjusting after vacation. He misses the
girl dog at Tammy's house. He is back to eating dog
food. He even turned up his nose at his "dog" treats.
He stares out the windows hoping Tammy will rescue
him from the nightmare!...Today the kids had McDonald's
for lunch...(Hollister has a thing for McNuggets...
this happened about a month ago..I guess taking a
break from the #7...Not sure what part of the chicken
is the McNugget!!!!) Hooch waited and waited for his
order to appear from the bag...He was very sad!!!
Tammy did a great job taking care of our furry family
member. Thank You!!!!

We continue to get up each morning and Hope for the
best. We continue to have Hope..Hollister's smile
and laugh gives us the Hope that we need to keep
fighting this disease. Hollister's strength is
amazing. This is the kid with the debilitating
muscle disease...
We continue as a family to have Faith. I am very
proud of my Children and the Faith that they have.
Hollister has always been very public with his Faith.
He likes to discuss it with anyone.
I have been angry at God, I have begged bartered and
promised God...I have yelled, I have cried, and I have
whispered my deepest thoughts and prayers..Through all
of that, my faith has never waivered. I have the same
Faith that brought me as a small child...to learn and
pray for my very sick mother...the same faith as a
teenager to pray for my Grandpa as he died, the same
faith as a mother to pray for the births of her healthly
children, this is the same faith, that helped Dick
grieve at the death of his father.
Never before has my faith been more tested...and
never before I have felt so strongly that my Faith
is very much intact. I feel very fortunate to see the
works of God everyday in my life...

Hollister rests comfortably tonight, knowing that
God truly holds him in the palm of his hand.

Thursday, July 28, 2005 12:29 AM CDT

Finally, a chance to sit a write a note. I needed
a couple days to collect my thoughts. When I stop to
think, I don't know if I have had my thoughts collected!!!

Hollister is tired and struggling. I guess we all
expected it. Even when we expect it, it is still very
disappointing.

When we got home from Rochester on Monday, he was tired
and kept saying...I don't feel good. I tried to start
an IV...but I wasn't able to get one, after many
unsuccessful attempts. He was very dry...his veins
were no where to be found.. Finally, at midnight he
had to go to bed.

Tuesday, he slept and slept...Finally at 5pm we got him
up. He looked rough. He was able to keep down some of
his medications. We decided to get him out of the house.
We went up to the Beaverdale Masonic lodge for Chicken
and corn. Anything not to cook! He surprised us all
and ate a leg and an ear of corn. He never eats corn..
He did surprisingly well holding the ear with
his left hand and balancing it with his numb right
hand. I was very impressed. I sat across the table and
thought this is a great kid!

Tuesday night, God is good. With a warm pack, 1 IV needle
left...I got an IV started. I have been running fluid
ever since.

He did make it to an hour of therpay with Karen today.
I always feel better when she sees him. She knows his
muscles so well. He is very tired and his headache is
severe. Today he sleeps. He did listen to the Price is
Right...

Our visit to Rochester was not fun. Dr. Whiteman...
our geneticist is moving..to Maine...His family lives
there. His children need him at home. What I
wanted to tell him was, you are a Doctor...
get a new wife and kids in Minnesota..HAHA
He was very sad to say good-bye. He truly
saved Hollister's life. It will take over
6 months to get his license there..but he
is going now. He will be doing research for
a company..He said it may help patients like Hollister..
Good luck...bad luck... who knows......
Hopefully, within in a year he will be in practice
in the Boston area..He assured
us he would stay in contact with us. We feel
fortunate that we know all of geneticists at Mayo.
There are other Mito doctors there. Hollister will
continue to get great care.
Dr. El-Yuseff said we could keep things as they are!
I think he waiting for me to say a G-tube is OK..I really
like him also!
Dr. Mack, was very attentive. He was very concerned for
Hollister's treatment this spring at St. Mary's. He
wasn't very happy about it. He reviewed all of the MRI's
from the last year. He said the right side continues the
numbness from the stroke involving the Hypo-thamus in
December. He said, he doubts it that will come back.
He also asked Dick and I if we had made arrangements
for end of life care..Wow, that hit us hard. We have
thought about it, but have taken no steps. He was
reminding us that decisions are easier made, when there
is no crisis...We agreed.....But no decisions were made.
He was very kind and talked openly to us. He took Hollister
out of the room..(Where he talked with Dr. Mack's
Nurse..and told her about Alaska..and how much beer we
drank..his Aunt Judy liked a 1:00...she was laughing
so hard when we walked in!!!!)
He reminded us how lucky we were that he made it
through all that he has. He said they, thought he
wouldn't make it, several times.. I told him that Dick
and I were very aware of that. We live today, as there is
no tomorrow with him. He said that was good!
He also told us, that he has done so well because I am
a nurse and I have made it my priority to care for him.
Dick and I decided it was easier to laugh than cry when
he told us that!
What I wanted to tell him, was I am his Mother..my
God given job is to care for him. We as a family
have made huge sacrifices to give him the best. Would
we have done things differently...If you ask Hillaree
and Harrison..probably..I am sure they are very aware
of the changes in their lives...Their lives are very
different from Classmates.. But they are happy, and
I think they get it! Dick and I are content with the
decisions we have made...so far..I fear the questions
maybe getting harder!!!!

It has been a difficult week, with a lot to think about.
We will continue to help Hollister work hard. I believe
that he can make improvements. We continue to remind
ourselves that we are on God's time..it may be borrowed,
but it is God's time!

To End with a Happy Alaksa thought....

We drove up to Moose Pass, outside of Seward...We
went for a little lunch and a cold beverage. We had
a great time and good food. It was a very relaxing
stop. For us in the midwest, it was much like a
lodge in Minnesota...Minus the Hamms and grainbelt
beer signs. Hillaree and Harrison entertained
themselves playing pool...It got good,
when Hollister decided he needed to play
the winner. Wow, basically a Blind boy playing pool. (Hillaree helped him..)
It was a riot!
That may be something I never forget!

Monday, July 25, 2005 0:32 AM CDT

We did indeed make it home from Alaska. We got home
around midnight on Thursday. We walked out of the
airport and almost died. It was so hot and humid...
Very unlike Alaska.

Appartenly, this is the hotest stretch of heat
in 6 years..We have not done much since we got home.

Hillaree and Harrison had their conference swim
meets on Friday night and Saturday morning..Did
I mention that an indoor pool, the air in the
building is like a 1000 degrees...It was tough.

Hollister has not left the building. It is way to
hot for him. This is the kind of weather that sends
him to the hospital!

I will try not to bore you all to death with vacation
stories...and pictures..I am going to try and share
some highlights for the next few days.

We had a great time. It was better than any of us could
have hoped for. We have some great family memories..
They are nice to have, but I fear in the future they
may become truly priceless.

It was a big trip. We agonized over taking it or not.
It was a graduation promise and he made it. Before
we left...none of us were sure how he would do. He has
been so weak. We decided on the wheelchair. That was
a great idea. This enabled him to reserve his energies.
We were able to take him everywhere. We did get in over
our heads at Exit Glacier in Seward...Hollister actually
hiked his way up and down a mountain side...Poor Dick
had to carry the wheel chair..It was hot, the flies
were swarming and biting..It was tough..Hollister kept
telling me that Karen(his PT) would be so mad! Harrison
got stung by a bee..in the back of the leg..We were
in way over our heads...Hollister survived..somehow!
(it appeared that the adults making the decisions were
a little slow that day!!!!!)

We made it to Denali National park and preserves..
What a place..6.2 million acres..We saw Mt.McKinnely
(The native Alaskans call it Mt. Denali) It was a
perfect clear day..It was truly breathtaking.
We rode the bus for 8 hours in the park. We saw
Moose, bears and bear cubs. It was awesome...We also
saw birds...Just ask Hollister! He was so funny on the
bus talking about the birds....He had seen enough!

On our trip we saw so many wonderfully beautiful
places.. We would all smile in amazement.
I found my self saying that only God could create
such a magnificant place. I feel sorry for the people
who are lucky enough to see it and not believe.
I guess, I feel that way in my own life. I feel sorry
for the people who haven't taken the time to know
Hollister. He is a gift from God. I feel lucky enough
to wake each morning and see him. I know only God can
create such masterpieces!

Oh yeah, the crazy Taxi cab driver in Vancouver..Who
got lost driving 1 mile from the airport to the Hotel.
(he has driven a taxi there for 20 years!!)
He promised Dick and I we were going to Heaven..
Taking care of Hollister was our ticket to heaven...
I know he was just the crazy taxi driver...But do you
think...hahaha

Hollister is doing OK. He looks better than I ever
imagined. His sense of humor has been very much intact.
He kept us laughing on the trip. He made it fun for
all of us.

Tomorrow we go to Rochester. We have appointments at
the Mayo Clinic. He will see Dr. Whiteman, Dr. Mack, and
Dr. El Yuseff. Hopefully, we will get some answers...
I would like to know about the numbness on the right side.
I have been thinking all day what I might ask. I also
am going to talk about our bad care...Hopefully, some
answers!!

Tonight I am thankful for the gifts from God, and that
my eyes are open to see.

Wednesday, July 20, 2005 1:10 AM CDT

Another Successful day in Alaska!

(Happy Birthday Kathy.....)

As I write this note, it continues to be daylight.
It was in the 70's today and very pretty. Much like
a late spring day at home. Very enjoyable.

We slept in and lazed around most of the day. This
morning we headed to the North Pole. What a great
town about 15 mile froms Fairbanks. Santa was out of
town today...but we saw his house. What a great place!
Lots of Christmas music and decorations, Even the
light poles looked like candycanes..The reindeer were
in a pen..

We then drove another 20 miles to a place called
"Skinny Dick's"....need I say more. Hollister was
ready to head back to town..He had seen enough
scenery! He was making fun of Dick's driving.

We had a lot of fun just being tourists today.
No big agenda. Kids liked swimming in the pool
tonight..Had a great dinner at a local Mexican
restaurant...(I have never been in a Mexican
Place without a Beer or a Margaurita...)Dick, Jerri
and I laughed...our bill was considerable less! haha

Hollister continues to amaze us. He is trying so hard
to stay with us. One time yesterday...We told him
during our travles he should take a nap...But he told us,
"that would be silly, we were in Alaska, renting a car,
paying for gas..that would be an expensive nap!!!""
Only Hollister's logic could make sense of that to us!
HAHAHA

Tomorrow we are getting up early and heading back
to Denali National park. That is 2 1/2 hours south
of here. We are taking an 8 hour bus ride through
the park. Mount Mc Kinnely is there. We should
also see bear, moose, and much more. Hollister isn't
very excited about this. But I am hopeful that he
will enjoy this.

After 8 hours on the bus, we will then drive 4
hours to Anchorage..Will be quite the day.
The weather is suppose to be great. Seeing
Mt. McKinnely shouldn't be difficult.

We fly home on Thursday at 1pm...Can't believe
2 weeks has passed. It truly has been the trip
of a lifetime.

I am happy that my sister Judy was here for 10 days.
We enjoyed our time with the world traveler..We miss
her. Hollister keeps reminding us to have a beer
around 1...even when she is gone.

My sister Jerri has been tough enough to stick out
the whole 2 weeks with us. She is apparently tougher
than Judy..haha
Judy and Jerri both were lucky enough to celebrate
their birthday's in Alaska!

This will be my last note from Alaska.. I will have
lots to share about this trip. It has been a good time.
Hollister is amazing and continues to impress all
of us, with his desire to live!

Please continue to think happy thoughts about
Hollister and us. We have a long way to go to
get home...

Hooch we miss you...come home!

Tuesday, July 19, 2005 2:03 AM CDT

Wow...Alaska ia Hooterific!!!

So much has happened since I last wrote.This is the
first night there has been a computer available.

We are in Fairbanks tonight. It is 6 hours from
Anchorage. I had no idea how far it was.

The Cruise was incredible. The kids had the time of
their lives. Hillaree and Harrison made all kinds of
friends. When we were on the boat, we never saw them.
It was so fun to see them so carefree and acting
like kids without a worry.

Hollister is doing well. He had fun on the cruise
also. I have never seen him eat so well. He actually
tried lots of new foods. His sense of humor is
intact. He makes us all laugh. He ate the cold fruit
soup each night...and each night he would say...it is
cold..why don't they make a Hot soup. On the night they
served lobster, he ate two...

Our first stop was Ketchican...We went on a Jet boat
ride..It was great..We saw Eagles, Black tailed deer,
Jelly fish and we held one..(it felt a lot like the
gummy bears), jumping salmon, star fish, and a seal.
It was a great boat ride. We all loved it.

Our Second stop was Skagway, an old mining town.
We went to a Saloon and Brothel and a very fun little
local bar called Moes..(for those of you from Algona,
it may have been the cousin bar of Joe's Place!!!!)
We went on the Skagway train. That is very neat.
Hollister wasn't very impressed..

Third Stop was Juneau..State Capitol. It was a quiet
day for us, and we went on a Tram..That gave us an
incredible view. It was like riding in a cloud. We
watched a Tribal story of the Orca's.

Fourth Stop...Icy Point Straight. The boys went Whale
watching... No Orca's, but lots of humpbacks...They even
saw them Breach...How lucky is that.
Hillaree stayed on the boat. The girls went
shopping and a walk through the rain forest. We saw
a seal swimming..and eagles flying..Very nice.

On the boat there were several nights we saw whales.
At Dinner, a pod of whales interupted the entire
dining room. The first to spot them and scream was
of course a person seated at table 24...our table.

Another night, Hollister was already in bed..And the
Captian announced a herd of seals were on shore..We
got to Hollister as quick as we could..We wrapped him
in his blanket, threw him in his wheelchair and away
we went. We weren't sure he was seeing him...until he
started laughing that he could see them playing..and
he thought the noises they made sounded like his Dad.
I am sure he did see and hear them.

Hollister is tolerating the trip better than I ever
hoped. He looks good. He is tired and complains of
the headache. He is trying his hardest to keep up.

We did not get to whale watch in Seward. It was rough
and rainy. I was quite impressed, they gave us our
money back. It was very dissappointing to all.
We had a good time inspite of the plan changes..

In Seward, we saw an Otter swimming in the Bay.
Everyone was quite excited by that.

The big excitement in Seward was a Moose and her
calf that walked into town. It was less than a block
from where we were staying..It was incredible.
The kids were pretty excited. Heck, we were all excited!

We have seen so much. It is truly a trip of his
lifetime.

Sunday night brought big smile to Hollister. There
is a Hooter's in Anchorage. Hollister was treated like
royality there. He loved every minute of it. The
girls were all over him. I have only seen that big
smile a few times. He decided that Alaska really is
Hooterific...He still claims it is the Chicken and
not the girls...hahahaha

I will write more when I can. I am sure that I have
so much more to say on this adventure....

Tonight from Alaska, all is right with the World.....

Thursday, July 7, 2005 10:40 PM

We made it to Canada...

7 people
11 bags
4 backpacks
3 carry on bags
3 purses...
1 wheelchair
Minus one blue hat(I am very sad about the hat)

All are in Vancouver in one piece.
Our trip was realitively uneventful.
The medical supplies made it without question.
We made it through customs....It was so easy. I am
very thankful for that.
Our passports are stamped..(all except Jerri's)
My sister Judy wants to be remembered as a World
Travelor now...that her passport is stamped..hahaha

The kids are good at traveling and love to go. Both
Hillaree and Harrison do a very good job looking
out for Hollister. I am amazed at there attention to detail.
They are the first to notice when someone
is rude or staring at him. It really bothers them
to know that people are noticing their brother in a wheelchair.
We had a long discussion tonight, that sometimes there
is a difference between a handicap person and a
person who is sick. I reminded them that both are
equally horrible. The general public see's all kids
in wheelchairs or with limitations as handicap..For
us there is a big difference. We haven't had 18 years to
get used to Hollister not walking. It is very new to us
and it makes us uncomfortable also. Through the eyes of
my children I learn and become so much wiser.

We were within walking distances to lots of great
restaurants tonight...But...thankfully, we could also
walk to a McDonald's....The kids were very happy they
didn't have to try new foods tonight...on the first
night of vacation...They are worried about what they
will "have to eat" on the cruise! Hollister ate 10
Chicken McNuggets (who knows what part of the chicken
that is)....He thinks he is only eating 6...Lots of
fat and calories...

He was very tired..It was a long day. He likes to keep
track of the time change..So He knew it was way past
midnight...He was so tired he could only take a few of
his pills...He promised tomorrow he would "try" to take
all of them.

Harrison was very excited to see different money..
A five dollar bill, turns into $5.60 Canadian money..
(for the pop machine)
He was thinking of exchanging all of his yard mowing
money...He was firguring the math pretty fast..

Hillaree and Harrison are getting out of the pool and
heading to bed...It has been a long day..

Tomorrow we leave for the Cruise ship around 11:30..
So far so good. Hollister tolerated today...

Tonight, we have so many reasons to say... God is Good.
Thanks for all the encouraging words...To all of you
who continue to think and pray for Hollister...You are
a powerful group.

We are a tired happy group...minus the blue hat!

July 8th is Aunt Judy's Birthday...Happy Birthday
to Aunt Judy...

Wednesday, July 6, 2005 7:35 PM CDT

07-06-05

Time has passed since my last note.
The Fourth of July, was here and gone. Too bad
for me, I had the FLU!!! Not any Flu but the good
ole Fourth of July American FLU... I woke up about
5 am...sicker than I can remember...(Harrison had it
on Friday.....) Dick was busy around the house
spraying lysol...He also had to take care of Hollister.

Dick and the kids did indeed go to the picnic, and
the Iowa Cubs game...great fireworks as usual...Hillaree
was feeling poorly and didn't make the game..She slept
off her bout of the Fourth of July FLU...

I still feel a little off the feed bag, yet today..haha
I have been trying very hard not to let Hollister get
to close. He told me he missed me, when I was sick!
I am disappointed, I can usually avoid the FLU!! I am
sturdy stock...but, I fear my defenses have been
weakened this last year!

Hollister had a rough day yesterday. His legs didn't
want to work. He was walking like he was failing some
horrible sobriety test. It was bad..My nieces Jamie
and Nikki came and took him to the Hollister store at
the new Mall. Unfortunately, he was having such a hard
time, they had to use the wheelchair. He was tired
last night..More IV fluids...

This is an exciting week at the Farrell residence..
Tomorrow is Vacation. Some of you may remember that
2 years ago, Hollister had a Make-A-Wish trip to Alaska.
It was truly a trip of a life time.. We promised
Hollister, if he could graduate with his class at
DCHS...We would take him back to Alaska...

Well, the time has come.. It has been a very difficult
decision if and how we would go. This past year
hasn't been very kind to Hollister or us. His health has
deteriorated so much in two short years.
A goal is a goal....We put it out there...
Hillaree likes to tell her softball team..."You can
talk the talk...but can you walk the walk"!
We decided we had to walk the walk...

We invited family and friends to come..

Tomorrow, at 2:30(or so...) we head to Vancouver, B.C.
Friday we set sail on the Vison of the Seas..for 7 days...
Up the inside passage of Alaska...Then we are spending
another week....Whale watching and site seeing.
It will be an incredible trip for our "boy" who
wanted nothing more than to spend his life as a marine
biologist...He has loved the Orca's since he was 2 years
old and saw them at Sea World...This is a dream for
him. We saw humpback whales last time...this time
the mission of the trip is to see the "Killer
Whales"...Orca's!!They are his passion!

The past couple days have been so worrisome with
the FLU bug in the house..Our trip could be cancelled
at any moment. The Flu could be devastating to him.
We decided to take his wheelchair with us. We are taking
a suitcase of IV Fluid...(thanks to all who helped
organize that...and to Deb and Dr. Rhonda..for the note)
I can only imagine the airport security when they find
a mini Hospital in our suitcases...

The kids are very excited! I don't know if it has hit
Hollister yet...He knows that he isn't where he was
before...I think he is a little scared..

Tonight, as we finish packing, checking lists,
medications...and clothing, we are thankful that
we made it this far..The last year has been so
darn hard. I can't imagine when I stop to think!
I never thought I would have the opporitunity
to take him back to Alaska...God is good.

My sister's Jerri and Judy will be joining our
family on our
"Hollister's Celebration....Alaska 2005"
It will be a trip to remember!

I will try to journal on our adventure..I am sure
their will be much to share...Please continue
to keep the good thoughts about Hollister. He will
need lots of extra prayers!

Sunday, July 3, 2005 11:04 PM CDT

Happy Fourth of July..

They say the corn should be knee high
by the Fourth of July...We passed a field and
some of it is way higher...We even had fresh,
picked today sweet corn..I love summer!

It has been a couple of uneventful days.
Hillaree played in her last softball tournament
this weekend. We finished today. Summer is
going by so fast.

Hollister went a couple days without IV fluids.
He was pretty tired today. Started a new site
this afternoon. He perked up a bit. Not sure why
he continues to feel so awful.He has very little
energy. This morning, he couldn't harldy make it
out of the car at softball. We watched from the
outfield. I was helping him to the car after the
game, and he sat on the ground..I tried not to laugh,
he was just to tired and it was too hard to get in
the car.

Tomorrow, we are hoping to go to picnic at some
friends and then an I-Cubs game. Should be a fun
day. I hope Hollister will be up to it!

Not much else, I continue to soul search. I fear my
soul may not have a lot to search. But I keep looking
for understanding of my world.

A wise friend of mine told me that God doens't waste
pain. I am assuming that suffering then also is not
wasted. I can only imagine that the pain and suffering
that Hollister is doing will bring some good.

Happy Fourth of July...
God Bless America

Wednesday, June 29, 2005 10:00 PM CDT

I have been waiting to write a journal because, I
am not sure what to write. I am not sure what I think
or feel these days...Lots of confusion.

Life is so hard to explain. One thing for sure
life certainly goes on.

Hollister continues with the ups and downs...
Last Friday night we got home from Ames, Hillaree
was playing softball there. He said he felt awful,
his head hurt, he was nauseous...awfull. I asked if
he thought and IV would help. He said YES!
God is good. I was able to get a great sight. I
ran two bags of fluid on Friday night. I have done
that everynight since. I am doing that again tonight,
and I will see what tomorrow brings..

We made to the St. Benedict summer Festival on
Sunday. We had to drive up Sunday morning after
softball. Harrison had spent the weekend with my
sister Judy.. Hollister didn't feel the best and
kind of struggled. He enjoyed his time with
Grandpa watching baseball and eating popcorn in
the air conditioning. Harrison won $10.00 playing
Bingo and was feeling pretty lucky. We all felt
pretty lucky to eat the Homemade pies from the
parish ladies..
Sometimes it is comforting to go back to what you
know. It is a small parish in the country. It is
nice to recognize so many faces. We have been taking
the kids there since Hollister was small. Almost
everyone there knows that he is very ill. Most are
happy just to see him up and about.

Monday and Tuesday were work days..Therapy.. No matter
how bad or rough he feels he continues to work hard.
I am very proud of him. Sometimes, him and I argue..
But he is 18!!! and he is able to think on his own!!!

Today was a day of rest..He had to get up early for the
visiting nurse to come at 9am...way to early! She
wasn't out the door and he was on the couch! haha
Cara, our case manager was here today also. She has
been working very hard to get his drugs covered by
insurance..It is a never ending battle, this is very
time consuming and expensive. Turns out, today was
a busy day for Hollister. He did nap a lot.

Last night Dick Hollister and I went to
Dr. Breedlove's visitation. It was important for us
to go, and take Hollister. Hollister wasn't quite
sure he wanted to go. He ask a lot of questions about
how he died, why, and what we thought. It was quite
emotional for us, when Bill(Dr. Breedloves son) hugged
Hollister and said he was so happy to see him. He wanted
to talk about Hollister. He reminded Hollister that
no matter how hard life gets to remember the good times
and smile each day...Life is very precious...and he
hugged Dick and I...knowing that we already know that.

Life continues to be full of so many lessons. Some are
much more painful than others. I have always feared I
was a slow learner..Sometimes, I have to be slapped in
the face several times before I get it! I continue to
look for the lessons in all of this. Again, I fear I
may not be learning fast enough! I pray and I ask God
for the patience and guidance that is needed to continue
on the journey.

As the storms continue to roll in, I will ponder all
that my little brain can hold!

May God continue to give us the strenght and courage
we need to answer the difficult questions!!!or at
least try!

Friday, June 24, 2005 11:38 AM CDT

Friday....

It has been a couple of Hot days. Hollister doesn't
tolerate the heat very well. Makes it hard to get
him outside.
He has been a lot weaker this week. Not sure what is
going on. The IV fluid made a difference for him. Not
sure I understand all of the bio-chemisty...I know
just enough to be dangerous...hahaha

Hollister is on his way as I write this to Hooter's..
Gift Cards in wallet. He is ready to go. His cousin
Jamie is here today and is taking him to lunch. He
is buying her lunch.. I hope I can remember always the
big smile on his face as they drove away..

Hillaree is at the Nursing home today..She loves to
volunteer there. She has been doing that since she
was 10. It is a win win situation..I am very proud of
her and her volunteer work. Her gifts are easy to see
for anyone who knows her!

Hollister continues with the Headache. I don't think
the heat and humidity help. He has been very tired.
He hasn't even been interested in watching movies..
When he has rough times it is rough on everyone. We
all see him changing and everyone gets a little nervous.
I know Hillaree and Harrison live in wonder when he
will be hospitalized again..throwing another knot into
thier lives...Dick and I live in fear that today will
be the day, that his brain will take no more. Somedays
there is a lot of awkward silence...Everyone tries to
keep their scary thoughts to themselves...
We continue to pray...pray...pray...I continue to ask
God for time..with time...we may find some answers to
all of the unknowns about this disease..

Yesterday, I learned that Dr. R. Breedlove was killed
in a bicycle accident. He was riding the Ride Across
America. He was 53, and the picture of health..I have
worked with him for many years in surgery. He was also
a friend to our family...His son Bill graduated from
Dowling when Hollister was a sophomore. He was a member
of the Football team. Bill be-friended Hollister and
treated him like Gold. Dr. Breedlove never missed an
opporitunity to ask about Hollister. His concern for him
and us was very genuine. It didn't matter if it was at
work or a Dowling activity, he was always friendly and
nice. He will be missed by many...The Farrell's included!

Today, as I think...I know I don't have any answers,
just questions.

Let the perpetual light shine upon
Dr. Robert Breedlove.

Tuesday, June 21, 2005 9:55 PM CDT

Happy First day of summer...
The longest day of the year.
This time of year that means longer for
the mosquitos to eat you alive...

Hollister has had some ups and downs..Good
days and some not so good days.

The weekend was OK. He even made it to 07:30 church
on Sunday. He did nap after that. We took Dick out
for dinner on Father's day..That was a fun thing to
do as a family. Hollister enjoyed himself...

Monday he worked very hard at therapy. He was so
tired when he got home...He couldn't make it in the
house. He napped on the glider on the front porch.
Went to bed last night with the killer headache.

Today was a down day..He didn't look good when he
got up. He was having trouble with his balance before
we left the house.He complained of a big headache
first thing this morning.Therapy was a struggle.
Getting to the car and home was a stuggle. He went
right to the couch..He slept it off. 2:00 he got up,
tried to eat and take some pills...came out as fast
as it went in!

Around 4pm, I decided he needed an IV..I was thankful
that his supplies came late last week. Hoping I wouldn't
need them..It is amazing what can be sent to the house!
I was lucky to get one started. He is on his second bag
now, and I will run it through the night. The idea is
to give the mitochondria some quick energy, so they
leave the vital organ(the brain) alone!!!!!

I think the fluid is helping, we were able to get
him to eat 6 chicken McNuggets...it is a start.
I can never understand the hold McDonald's and Wendy's
have on this child...No matter how sick he has been
he can almost aways eat something from there...It
amazes me...ha

Tonight as I write...I look forward to the good things
that will come. Hollister is an amazing child with
amazing gifts. I have come to realize maybe they weren't
the gifts I wanted for him...But none the less...They
are gifts. Even with all of his setbacks and limitations
I think he knows exactly how to use them.
He continues to be a joy to so many. He is so lighthearted
and funny so much of the time. Time is what we pray for,
and we have learned to enjoy it so much.. I hate to waste
even a second that we can all be together. If we are
at home doing nothing, watching Hillaree and Harrison
in there sports or events, or maybe going to a movie...
I now remember to thank God for each and every second!

Thursday, June 16, 2005 11:52 PM CDT

Another week has passed...

Yesterday was Hooters Wednesday for Hollister.
We met Karen(his PT), and her children Kassi
and Cole for lunch. It was grest fun. Hollister
ate 15 wings for lunch. He was very happy. Carrie
was our waitress...All seemed right with the
world..haha

We had our meeting with DMACC(Des Moines Area
Community College)...the disability coordinator.
She reassurred Dick and I...we never thought we would
be meeting with a disability coordinator...
She was very kind. She thought DMACC would be able
to make the necessary accomidations for Hollister
to attend this fall. We then went to see and advisor
and got his schedule filled out. He is taking 6 hours..
3 classes...He is very excited.

Today was his early therapy..Michelle and Karen and
Linse worked him very hard. He came home and went
straight to the couch for a nap...He never would eat
anything..His headache continues to plague him..
His eating has been a little slow...He is down to 113
pounds...
Tonight Dick, Hollister, and Harrison went to see the
Hockey tryouts...Many of the kids Hollister grew up
playing with are trying out for the Des Moines Bucs...
He hadn't eaten all day...and he tried to eat a
Hot dog..and of course Threw up...
This disease is so unpredictable...
He was worn out when they made it home. He took 1/2 of
his pills and went to bed...

Tomorrow is another busy day...He has therapy at 9am...
"His Boss" Sara.(from child life) asked Hollister if
he wanted to volunteer with her...He did this all last
summer. He "works" in the Children's Clinic...It was
a blessing last summer...It gave him somewhere to go!
He is very excited to spend a few hours with Sara and
eat for free in the cafateria...haha

Even after 3 1/2 years..It is hard for me to believe
this is all real. I half expect to wake up..the kids
will be small, I will be working at Mercy with my
friends, and life will be busy and hectic as usual...
Then, reality hits and Hollister needs help with his
activities of daily living...He needs his meds...He
can't make it in and out of the car without help..
We have a handicap parking pass...It all seems so
surreal.
It never ceases to amaze me how fast life changes...

Somedays are easier than others..

My Friend Chris always says....
"Somedays you eat the Bear, and somedays the
Bear eats you...."

Monday, June 13, 2005 10:54 PM CDT

NEW PHOTO'S
of Graduation...Yeah...
That was a great moment in his life!

Hollister made it through the weekend. We
were able to make to a couple of the softball
games...It is good to get him out. I think he slept
through one game on Sunday. He swears he was awake
and paying attention....haha
Sunday night he was so tired and felt awful..he
couldn't even sit at the table to eat..He headed to
to bed early.

He looked pretty good today. He made it to therapy
without any problems...He came home and slept it off.
He is so tired from the hard work.. He did make it
the block this afternoon...before the storms. He did
OK..He was very tired when we got home..He layed on
the couch....
He ate a small supper and headed to bed shortly after
nine...
Tomorrow is another day of therapy!!!!

Hollister's headache continues. I think, there are
times when it seems less intense. I am hopefull.
I have had lots of questions about his headache...
His headache, more than likely is from his brain
being so swollen, after his strokes in OCT and DEC.
Unfortunately, for Hollister he has suffered from
headaches since this all began...

He can take tylenol and advil...but not much else..
The MELAS makes Hollister's Metabolism different from
yours and mine...Steriods are a big NO..Steriods are
used to take the swelling down...so it would make
sense to use them for his swollen brain....
Dr. Whiteman and Dr. Mack are insistent that he
can never have them. MELAS patients can become
catabolic with steriods..The swelling must resolve
on it owns...That is why the brain still has so much
swelling and he continues with the headache....

This all has been hard on us. Summer is a busy
time, seems there is so much to do. Today, the kids
and I were headed out the door to go to the pool...
and it was brought to my attention that Hollister was
asleep on the couch....I couldn't go. He can't be
left home alone...adjustments have to be made for our
everyday life...It is hard.

I find myself with too much time to think. I ponder
and wonder.....I have no answers.. I continue to ask
God to be sure of his plan...How much more can this
child take...He has incredible strength and wisdom. I
am in awe of him.
I think about Hillaree and Harrison and how they have
had to grow up so fast. Nothing is easy for Hillaree
and she carries the weight of world on her shoulders.
That is a lot of responsibility for a 13 year old.
She isolates herself from others her age...I think it
is to difficult to explain about Hollister..It is
easier to be a lone...And unfortunately, 13 year
old girls can be mean...
Harrison has his own way of dealing and coping. It is
very difficult for him also.

It is hard to understand how God's plan for Hollister
has affected all of us. I am not so sure I am loving
the plan.....The big picture is very hard to look at sometimes...

Friday, June 10, 2005 11:21 AM CDT

TGIF...

This was a fast week...First week of Summer Vaction..
To be a kid again..

Hillaree is voluntering at the Nursing Home today.
That is fun for her. She does a great job with the
residents..I think a trip to Baker's Square was
in the works...

Hollister had a good day yesterday..He tolerated
therapy and a walk in the afternoon. I know it
doesn't sound like much....but he made it around
our block...It is a big block...I am so proud..He
was tired and needed a nap..But this was huge!That
is the most he has done outside of therapy since last
August!

Hollister continues to work hard and try and move
forward. This dumb disease can change so fast.
Progressive is horrible word, when you are talking
about illness.

I was reading in the Mitochondrial News(Volume 10)...
a mailer I get from the UMDF...It talks about Therapy...
I thought I would write some of what it says..So you
can understand why Hollister has to have so much
therapy and why it is so important!
Written by Tracey J. Millhouse-flourie:
"Despite years of study, the current medical and
surgical approaches to the treatment of the
mitochondrial disease are limited. Treatments are
generally symptomatic or geared toward slowing the
progression of the disease process.
PT OT SPT...In Truth , there is no scientic proof
that these therapies can be efficacious in
treating the symptoms of mitochondrial disease. In
this way, they join the ranks of the other commonly
used empirical treatments. But the multisystemic
nature of mitochondrial disease surely deserves the
efforts of a multidisciplinary team whose goals are the
preservation, and if possible, the improvement of an
individual's existing strength, mobility and functioning.
These therapeutic interventions will not change the
underlying mitochondrial problem...but rather assist
in the adaptation to the condition..."

I know that sounds like a lot...but I like how it
stated it. Hollister has been doing therapy the entire
time, he has been sick. It is so important. It truly
keeps him going..

We are very lucky that Blank has such an awesome
therapy department. Hollister has the best therapists..
and speech pathologists...He is lucky. The have all
tried to learn about mitochondrial disease, I think he
was their first patient....They assess him daily and
have ideas on how he can get stronger...It is a great
team effort! I am thankful for the entire group!

Hollister still sleeps this morning...He has to get
up soon. Therapy at 1:00!!

It is a busy weekend here...Hillaree has a Softball
tournament...9 games.....Hopefully no rain...

Harrison is in the...I want to be a kid mode..He turned
down a chance to playball on an AAU team... He likes
hanging around the house and going to the pool.
I don't blame him..You are only 10 once..Who needs
to be in something organized all the time!

I am hoping that Hollister can have another good day
today...The headache continues...But, somedays it is
easier to cope!

Happy Friday...

Thanks for your continued thoughts and prayers..
He continues to need them!

Wednesday, June 8, 2005 10:27 PM CDT

We made it home tonight...
We did a lot of driving..
Yesterday, we were in four states...
Iowa, Illinois, Wisconsin, and Minnesota..
Harrison thought that was pretty cool.

The Funeral for my Uncle Paul was very nice.
It was a traditional Catholic Funeral with a
bag pipe and everything. My cousin Laura(Paul's
Daughter) gave a very nice heart warming Eulogy.
It truly was a celebration of his life.
May he always know eternal happiness.

Hollister tolerated the long days quite well.
Apparently our heart to heart talk last week,
has made a difference. He seems to be trying very
very hard.
His appointments today at Rochester were OK.
We met with Dr. Driscoll(Physical Medicine), she
has followed Hollister since he was first diagnosed.
She is very smart and we like her a lot. She said
that she is unsure of "Rightie"...it may still come
back. There is no way to know. Hollister has a long
way to go with his therapies and Rehab. He has been
sick for so long, that he hasn't had much chance to
get better.
We then saw Dr. El Yuseff(Gastroenterologist)....
He has been following Hollister for over a year now.
His stomach problems came to a head about a year ago.
I trust him. He is so smart. I like him a lot. He is
very interested in learning. He talks to us like we are
smart. I like that.(even when we aren't...ha) He did
bring up the permanent G-Tube..He said we have to talk
about it... I of course sat up a little straighter...and
said...Well, I don't think we need it yet. We continue
to try new things at home. He kind of laughed as he
knew my answer...
Hollister has done well to not have one..When the time
is right...But not yet!!!
Dr. Whiteman(Genetists) called us this morning and said
he was sick. He said he was in the office seeing a few
less compromised kids...but he wouldn't see Hollister. He
didn't want to expose him to what he had. I appreciate
his honesty. He has taken such good care of Hollister.
He is so proud of him. He sent him the nicest letter for
his graduation. We are very lucky to have found such
a knowledgeable, caring Doctor. For Dr. Whiteman it is
nice to have Hollister, he tries so hard to do what is
needed. The MELAS is easy to diagnosis because of the
genetic marker..It is rare, but easy to find. A blood
test or a muscle biopsy will give a diagnosis..There is
no maybes...unfortunately...I remember the day we got the
news...I had no idea what was ahead...

Hollister will see Dr. Mack(neurologist) and Dr.
Whiteman in July. Hopefully, we will get some
answers about the headaches then...

Hollister recieved a T-shirt in the mail today from
one of my High School friends..He ran a Marathon in
Nashville on April 30th. He wore Hollister's name on
his shirt..He said Hollister inspired him to run harder.
He took an hour off his time since his last marathon.
He sent him a Finisher's shirt..What an honor..Hollister
will wear it proudly...Thank you Todd Miller.

Hollister is already asleep. He is tired from the
last three days. He has therapy tomorrow. They lightened
his load on Thursday...(9am instead of 8)..That is a
gift for him..

Sitting in that Church yesterday, during that funeral
I couldn't help but think...what lies a head.
How emotional the songs are...but yet strangely
comforting...The smell of the insence... the readings
and then it hit me...my heart ached and my eyes filled
with tears and I asked God for Time....
nothing more than time.

Monday, June 6, 2005 7:47 AM CDT

Another weekend has passed..

Friday night, Harrison had a baseball game,
and Hollister went along. It was a nice night
to sit out.....until the mosquitos...

Saturday, Hollister slept until after 2pm..He
was tired..He looked good after he got up. He
ate and we went to Hillaree's last two softball
games..She had four on Saturday and 1 one Sunday..

Saturday afternoon brought some sad news..Dick
recieved a call from my cousin Laura that her
Dad had just died from a Heart Attack..That is the
kind of news that takes you back for a moment...
He was an attorney. He worked in the morning, yard
work after lunch...getting ready to go out
to the "town" party...and had a heart attack..He
was only 62...Life can end at any moment..no warning,
no good-byes...just gone...

Sunday, Hollister did not feel well. He slept most
of the day. He finally ate a small dinner sat up a
short time and headed back to bed. The headache is
too much...He is struggling.

We have a busy week. Today we are heading to Clinton
for the Wake and Funeral tomorrow...
Hollister has appointments in Rochester on Wednesday.
I am hopeful, there will be new insight to what has
happened and what is going on. We have great Doctors
who care a lot about Hollister.

I had to give Hollister the motivational speech last
night. He is tired of being sick and he is tired of
taking so many pills. He reminded me how his life sucks...
I couldn't agree more. I also told him to quit now,
would be unfair. He needs to keep moving, or he will
lose so much. I asked him if he were ready to quit
walking and use a wheelchair now..NO, I am not..
Then I reminded him that he knows what he has to do.
He feels so cheated..I feel cheated...I remember the
boy who would play hockey and skate so hard..that he
would throw up..(knowing now, it was his lactic acid)
He never once wanted to quite!
We also talked about how unfortunately this is the
life that God has given him. God's plans for him are
great. He needs to do all he can in honor of him. He
knew that. Hollister is very wise.
He just needed to let me know that all this SUCKS!
I hate having to be the tough guy...But sometimes,
he needs to be reminded why he works so hard. That is
why we are TEAM TOUGH!!!

That is a lot of activity this week. He will be worn
out when we get back from Rochester.
Please continue to carry Hollister with you. This is
some days more than we need.

Let the perpetual light shine upon my
Uncle Paul.

Monday, June 6, 2005 7:47 AM CDT

Another weekend has passed..

Friday night, Harrison had a baseball game,
and Hollister went along. It was a nice night
to sit out.....until the mosquitos...

Saturday, Hollister slept until after 2pm..He
was tired..He looked good after he got up. He
ate and we went to Hillaree's last two softball
games..She had four on Saturday and 1 one Sunday..

Saturday afternoon brought some sad news..Dick
recieved a call from my cousin Laura that her
Dad had just died from a Heart Attack..That is the
kind of news that takes you back for a moment...
He was an attorney. He worked in the morning, yard
work after lunch...getting ready to go out
to the "town" party...and had a heart attack..He
was only 63...Life can end at any moment..no warning,
no good-byes...just gone...

Sunday, Hollister did not feel well. He slept most
of the day. He finally ate a small dinner sat up a
short time and headed back to bed. The headache is
too much...He is struggling.

We have a busy week. Today we are heading to Clinton
for the Wake and Funeral tomorrow...
Hollister has appointments in Rochester on Wednesday.
I am hopeful, there will be new insight to what has
happened and what is going on. We have great Doctors
who care a lot about Hollister.

I had to give Hollister the motivational speech last
night. He is tired of being sick and he is tired of
taking so many pills. He reminded me how his life sucks...
I couldn't agree more. I also told him to quit now,
would be unfair. He needs to keep moving, or he will
lose so much. I asked him if he were ready to quit
walking and use a wheelchair now..NO, I am not..
Then I reminded him that he knows what he has to do.
He feels so cheated..I feel cheated...I remember the
boy who would play hockey and skate so hard..that he
would throw up..(knowing now, it was his lactic acid)
He never once wanted to quite!
We also talked about how unfortunately this is the
life that God has given him. God's plans for him are
great. He needs to do all he can in honor of him. He
knew that. Hollister is very wise.
He just needed to let me know that all this SUCKS!
I hate having to be the tough guy...But sometimes,
he needs to be reminded why he works so hard. That is
why we are TEAM TOUGH!!!

That is a lot of activity this week. He will be worn
out when we get back from Rochester.
Please continue to carry Hollister with you. This is
some days more than we need.

Let the perpetual light shine upon my
Uncle Paul.

Thursday, June 2, 2005 11:31 PM CDT

Finally, I haven't been able to get in to write a
journal...Thank you Chad for updating my computer!
That is what happens when you are as computer ignornant
as I am...

I kept trying to get in to write a note...I had so much
to say..haha

Hollister has been in a resting mode this week. He
is tired..

Tuesday, Hollister was invited to a luncheon at the
Des Moines Golf and Country Club. He even ate part of
a Chef's Salad...Shocking. The lunch was with the
West Des Moines Rotary Club. They invited all the
kids that recieved a Scholarship..Hollister did indeed
recieve one. Awesome!! Dick and I both went, and we
were very proud that they picked Hollister...We listened
to the qualifications of the other kids...What an
impressive group..Hard to imagine Hollister...recieving
one. They said some very nice things about Hollister.
It always does a Mother's heart good to hear such
wonderful things about her child...
Thanks to Judy Stillwell at DCHS..She did a wonderful
thing by filling out the appilication for Hollister.
He was very proud...Thank you Judy...You have been
one of Hollister's biggest supporters...
Remember the Rotary Club in your kindnesses....

Wednesday was a quiet day..He rested most of the day.
He has had a rough couple of nights..Not sure why
he is having such a hard time sleeping..He is exhausted!
He did make it to Harrison's baseball game..It was good
for him to get out of the house...

Tonight was of course...June second....Bikini night at
Hooter's...This was the night he has waited for..He
was pretty excited to go...Thanks to Ben and Bryan for
taking him..It was a good thing..He didn't have to go
there with his Dad...He enjoyed 15 Hooter's wings and
girls in Bikini's and friends....It doesn't get any
better than that for this 18 year old....
He is sleeping with a huge smile on his face...

Graduation is not far from the minds of many of us..
I feel good about it and sometimes I am sad...When I
think of how hard he has worked and all that he over
came..The diploma from Dowling was the prize he so
badly wanted...I feel relief that he made it, and it
is all in the past. I can't imagine that I could ever
be prouder of him.

It has been an emotional time for us...

Tonight I am thankful to be able to read and write on
this page. Dick and I are continually lifted by your
thoughts...We appreciate all who check on us...

Hillaree and Harrison are also sleeping with smiles on
their faces...a half day of school tomorrow...and
SCHOOL'S OUT FOR SUMMER!!!!!!
It would be great to be 10 and 13 again...No Worries....

Sunday, May 29, 2005 12:10 AM CDT

Hollister's Celebration was a big success.

I think he even had a good time! He said this
morning when he got up, that he needed new hearing
aid batteries..He said there was way too much
talking and listening! They wore his batteries down!

Saturday he woke up on his own about 10:30. He was in
better shape than I had hoped. He was tired, but
looked pretty good!

His Celebration started at 1pm. He was still trying to
get out of it on the way. Hollister and went exactly at
1, not a minute early!

It was a great Celebration. Thank you to Dick's cousin
Linda and her friends...especially Terri..They planned
and prepared the entire party. I didn't help with one
thing. They did it all. Hollister and I showed up!
The food was incredible. Thanks to all who helped and
brought salads, veggie trays...chips..and all the
goodies! I was very impressed with all the good food!
I didn't know you were all so talented! It would be
very difficult to repay all of you!! All I can do is
humbly say.... Thank you, Thank you, Thank you!
I have to say I told you so...My Mom's potatoe salad is
truly the best!!! Recipe..unknown!

I was shocked to see how many of you came to see
Hollister. I am touched and overwhelmed. I truly
was reminded how many lives this little man has touched.
Thank you so much to all of you for giving up part of
your long weekend to spend time with him and us. I
never expected to have a Celebration like this. Every
one of you is important to us, as you continue to
support us on his journey.

This was an important weekend for him. He was exhausted
last night. I think he was a sleep before his head hit
his pillow. He did tell me, that a Celebration and a
party seemed to be the same thing...ha

He is tired today, with nothing on the agenda...Rest!

Thank you to all who have helped us...It was a great
"Party"!!

It will take Hollister days to open all of the cards!

Have a safe Memorial Day..

PS...Last Thursday was my parents 49th Wedding Anniversay!
That is quite an accomplishment. We are all proud of them.
Here's to Jerry and JoAnne!

Saturday, May 28, 2005 0:13 AM CDT

HE MADE IT!!!!!

What more can be said tonight. It was one of the
most incredible things I have experienced.

Hollister Richard Farrell 2005 Dowling Catholic
High School Graduate. I am so proud!

I have never had my heart as full as it was tonight.
There are so many people who made this dream a reality..
(I sound like I am writing an Oscar speech..haha)
And many of those people cared enough about Hollister
to attend the graduation. I am so impressed.
Hollister may have had the largest cheering section.
His therapist were there, his school teachers were
there, his friends...and lots of family..cousins,
Aunts and Uncles...and Grandpa and Grandma..It was
overwhelming..
They had practice at 12:00 today..Dick and I
practiced with Hollister a few times...4 I believe
that is what Hollister said. We all felt OK when we
left!

By the time 7:30 rolled around. Hollister was pretty
tired. He looked great in his Maroon Cap and Gown.
I promised him I wouldn't cry and I didn't..
His friend Ben...did a great job helping Hollister
the whole night..He marched him in...He helped him
walk across the stage..He was awesome..Thank you Ben!

I knew it would catch a few people when Hollister
walked across the stage...He made it to shake hands with
the Bishop..I wasn't prepared for a Standing Ovation.
That is the kind of moment that takes your breath
away..I think it took the breath away for a lot of
people..It was a moment of glory..Hollister even smiled
when his hat fell off. He looked good.

The actual ceremony was very nice. I would expect
nothing less from DCHS.

The spot on channel 13 was good. I am remind not only
has Hollister has suffered...But Dick and I have aged a
lot in the last 4 years...ha ha ha

Hollister was tired when we got home..He took his pills
ate a few chips and headed to bed...

I feel like a weight has been lifted. He wanted so
badly to graduate..He did it, he earned it...he owns it..

So, tonight from my little tiny corner of the world..
All is right!!

Congratulations Hollister!

Thursday, May 26, 2005 10:42 PM CDT

Wow, another busy day...

Therapy..changed to 0900...It was a little more exciting
today..A Channel 13 News Guy(Mark)...followed Hollister,
Karen and Michelle through his therapies..Not sure
why..He is doing a story on Hollister and all his hard
work to get to graduation...He noticed some kids at
school, a while back, wearing Hollister T-shirts..
He thought there must be a story there...He will be
at Graduation tomorrow night and get him walking
across the stage...It should air Friday night at 10pm.
He also talked to Dick and I..as usual we looked like
idiots...Then this afternoon they came to the house
and talked to Hollister's friend Ben. That was a nice
surprise for Hollister. That was enough excitement
for the day!!

We just got home from the Baccalureate Mass about 9:30.
Hollister ate a Pot Pie and went to bed. He was tired!
It was a very nice service. It was neat to see the kids
all dressed up. Fun to see the whole class together.

The Bishop was at the Mass. He is a great speaker.
He talked about a person's gifts and how they use them.
He talked about how God know's us before we are born
and knows what gifts you will recieve. (I turned to Dick
and said Hollister must have gotten in the wrong gift
line!)
What the Bishop said, always makes me stop to think.
I have always said, I haven't truly found my gifts.
Many people I know, there gifts are very apparent, and
they know how to use them..Me, not so much..

When I look at Hollister's gifts..I really try hard to
see what might be a gift here...I am hoping we can
find at least one gift.

Hollister did a great job tonight. He looked very
handsome. He really had a good time tonight. He was
a normal kid...doing a normal thing.

Graduation Day is upon us!!!!!

Wednesday, May 25, 2005 10:51 AM CDT

Two days until Graduation!!!

Wow, I can't believe it.

Yesterday was a good day. We went to the noon game of
the Iowa Cubs.(no therapy again!) Harrison's class went
on a field trip. We got to tag a long. It was a perfect
day to sit at an afternoon game. Hollister had a good
time. He ate well and enjoyed the game. CUBS WIN...
CUBS WIN!!!!!

He was tired when we got home. He napped for a couple of
hours. He then went to Harrison's 6pm game. It was
a lot of baseball for him. He ate a big sandwich last
night and kept the whole thing down. That is very
exciting.

Today is Hooter's Wednesday. He is excited to go.
We will be heading to Hooter's. He insists it is
the food, some of us are beginning to wonder. HA

He has done well this week. He has a couple of big
days ahead of him. I hate to look to far ahead..but
I am hopeful he will walk across the stage!

I am trying to keep him resting. It is cloudy and looks
like rain today..This will be a good day to rest.
(of course this is after lunch at Hooter's) His
headache continues and he is having some sinus trouble.
No big deal for me and you...but Hollister, everything
is a big deal!!haha

As the day of graduation gets closer, the closer I
get to shutting the door. I can't say that I am looking forward to it.
It will be extremely difficult. Somehow
this is not the day I planned on 18 years ago. This is
not the boy that I raised, that wanted nothing more
than to be a Marine Biologist. This is not at all how I
thought things would turn out.
I can't bring myself to go through his things and find
the pictures and art work for a party. It is
hard to imagine what a happy healthy child he was.
I haven't had the courage needed to do that. I try
to stay in the present everyday, if I start looking back...I will get sad.

Graduation from High school is also a new beginning.
I know at this point I can't look into the future.
He is not going away to college, he is not making plans,
he is struggling just to make it to Friday. That is
where I have to stay!
It would be much easier to close the door,and miss the
whole weekend!

But, life unfortunately goes on. The rest of the Class of
2005 are ready to move forward.

Monday, May 23, 2005 9:40 PM CDT

The weekend started out rough. I wasn't sure where
he was headed on Friday..Hollister and I were on
our way to therapy...and by the time I got him there..
He was unresponsive..The drive isn't that far! Michelle
and Robin came to the car, and he wouldn't budge.
I called Dick and he met me at home. He had to lift him
out of the car. He is too long for me to carry. Dick
did the fireman like an expert. He landed safely on
the couch! He got some IV fluid and woke up around 4:15.
Aunt Terry was promising him, she would watch all of
the Matrix movies.

The rest of the weekend was pretty uneventful. He is
tired and did his fair share of sleeping.
Saturday, he made it to Harrison's basseball game.
He seemed to enjoy himself. He didn't make it to any
of Hillaree's games. The weather was actually nice
enough for him to be out.
Saturday night was St. Theresa's at the Iowa Cubs.
That was fun. He made it to that. I am not sure how
much of the game he saw, but it was a great night at
the ball park. Hillaree and Harrison each got a foul
ball. Doesn't get any better than that!

He did sleep most of Sunday. He was pretty tired.
About 4pm, I made him sit outside in the sun, while
I did some yard work. He enjoyed that. He even threw
the ball for Hooch. It was nice for him to get some
fresh air.
Monday is a work day for Hollister. No school, just
therapy. He worked hard and was ready for a nap.
After his nap and lunch, he headed out to sit and
play catch with the dog. Does out hearts good to see
him outside, even sitting.

Hollister is trying to conserve his energy for Graduation.
Four days and counting. He doesn't say much about it.
He is still doesn't want a party... So, a celebration
is being planned instead...Much different than a party!
HAHA

Here is to the end of a pretty good Monday. I like to
enjoy the good times as much as possible. The roller
coaster that we ride has some wicked turns. Today was
a smooth ride!

4 DAYS UNTIL GRADUATION!!!!!!!

Friday, May 20, 2005 9:16 AM CDT

Friday already...
Times continues to move..ready or not..

Good news....
Harrison was released from the Doctor..
He can now participate in gym..baseball..and
soccer.ha He was excited..He said it felt great
to be a normal kid.

I think it hard to imagine how Hollister truly
feels. Harrison has had a broken finger for 8 weeks,
with limitations. Harrison felt free of his burden
yesterday..and felt "normal"
I suppose that Hollister doesn't have any idea what
"normal" is for him.
A year ago, Hollisters normal was different than
his normal today.. A year ago, he was a kid with a
horrible disease..but he coud walk and talk and
read..do homework..watch movies..play outside..
walk the dog..EAT...Stay home alone..Go to movies
with friends..We were even pondering a drivers permit..
His "normal" a year ago was therapy OT,PT,SPT each once
a week. He went to school. He knew his limitations..
He took his meds..He was a kid with a disease...but living.

August 16...things changed slowly...Sept 4..things
changed drastically...October 17...Would things
ever be the same...December 7...
Today, it seems the disease owns the boy.. He continues
to struggle. It has been a tough couple of days. He
continues to feel awful. He is so weak at times,that
his legs can't support him. He fell on the stairs...
fortunately, Dick was with him and supported him.
He takes so much medication that it is hard to get it
down. He eats very little..He can't be home alone..
He is weak and doesn't see very good. He has OT, PT,
SPT each four times a week.
Who knows what "normal" is to Hollister. I suspect it
would be a day with a small headache, and lunch at
Hooters!

Here's to a great weekend..Softball, soccer, and baseball..

1 week until Graduation..and counting!!!!

Wednesday, May 18, 2005 5:37 PM CDT

Hollister's last day of high school was today.
For most this would be a day of celebration.
For us it is bittersweet.

Hollister did make it to Dowling all three days
this week. Yesterday and today, he hasn't felt very
good. He say he feels awful. His appetite is very
poor.If he isn't at therapy, school, or an appointment
he is sleeping...He is tired.
His headache is wearing him down. He complains of pain
in his whole body, especially his arms.

His sense of humor is intact. He continues to make us
and his Therapists laugh. He is so funny. Even when he
isn't trying to be funny..he is..
Yesterday, during Speech Therapy, he was supposed to
be listing 5 place to eat...
Wendy's
McDonalds
Mexican
Chinese
The Bee's...Applebees
Michele overheard his list..and she came in and
busted him...No Hooters..She told him, he really
goes there for the girls and not the food....
I guess they laughed and laughed! He continued on
with the idea he likes the food!ha

Today is bittersweet as Hollister finished his
high school days. Thirteen years ago, when he started
kindergarten as a bright eyed 5 year old...I never
imagined he would finish like this. I am sad to think
of all the changes in his life. None of them good. I
am trying so hard not to reflect on how he was, but
to appreciate who is he now. The next week will be filled
with thoughts of what the last four years have brought.
Unfortunately, for Hollister the last four years have
been filled with a lot of pain, suffering, and
continued hard work. He hasn't had much time to be
a kid.

Graduation has been our lofty goal. I have used
this date in time to keep him motivated and going. This
truly be his greatest success. Now, another loft goal
will be set..

We are moving on to Graduation. Yeah...Hollister
will continue with his therapies and working hard.
He has already told me, next week we need to stop
out at Dowling to see his friends in the office!

Thanks for your continued thoughts and prayers.
We continue to need them...

Monday, May 16, 2005 10:31 PM CDT

This is the last Monday, that Hollister is a
high school student. Seems weird.

Hollister had a rough Saturday night. He had
another unresponsive episode. He seized quite
a bit. I had to start an IV...in his finger!
Worked great. The episode lasted over 6 hours..
unitl 2 am. He then slept unitl 4pm. He was
tired! It was a rough weekend. Hollsiter and
I didn't do much! We stayed at home.

Hollister had a better day today, than he has had
in weeks. He looked pretty good. He made it to
therapy and worked hard. I think!
He also made it to Dowling. That was a lot of
activity for someone who has slept or seized the
last week and a half!

He was laughing and joking with his therapists
today. It was awesome. He was animated at the
supper table tonight. He even fed himself. This
is a good sign.

Tonight, he is going without an IV. I will see how
he does. If he needs one tomorrow, I can start one.
I am hopeful, that he is on his way! Finally going
to turn this around. He deserves a break!

I am so thankful for all the nice things that everyone
says about us. We are all just trying to get by.
Obviously you are our friends..We have good taste!

Hillaree and Harrison found success in their
weekend tournaments.
Harrison's team got a 2nd place..they were playing up.
They were playing 12 year olds..They did well! Harrison
scored several goals!
Hillaree's team won the consolation bracket. That was
very good. She played well.

Here's to better days a coming!

Saturday, May 14, 2005 9:48 AM CDT

Wow, Saturday..
The sun is shining and the rain has stopped.
The winds are here to dry the mud..Life goes on!

Friday the 13, was a somewhat better day.
Fluids through the night had given him a boost.
He showered and dressed, took his pills, spilled
his pop and dressed again..He was tired before the
day started!

He did make it out to Dowling at 11:00. It was the
Senior mass and banquet. He stayed out there until
2:30. Thanks to Father Kirby, Nancy Austin and all
the kids who helped him to be there. I know it wasn't
easy. It wasn't easy for me to leave, but I knew I
had too. He needed to be with his class without me.

He was exhausted when he got home. He went straight
to the couch. He has moved to the couch on the back
porch..This couch,I believe is not the death couch!ha
He ate a snack and took his 4 o'clock meds and napped.

At 6:30, he started coughing, this got our attention...
We checked on him and he was unresponsive, he was
having some seizure activity.
I had to restart his IV, of course it had come out in
the morning. I again was lucky, and got it on the first
try..God is good. Hollister is a difficult stick, his
veins are wearing out. It is also not easy, to do this
on your own child. It is nice, that I can do this and
not have to have the visiting nurses...yet..It is a
real time saver! I know I know a port is coming!
We waited and watched. He finally woke up about 11:00.
It was a very long night!
Hollister sleeps this morning. IV intact!!ha

Harrison is playing in a soccer tournament this
weekend. Hillaree is playing in a softball tournament
in Winterset. They are busy kids..

Anyone who has known me a long time, knows what a
worrier I am. Dick has always teased me, that I make
up things to worry about.
That is why, Hollister being so ill..doens't fit the
God doesn't give you more than you can handle..
Harrison when he was 3 had to have his front teeth
pulled.(accident..jumping in the bath tub..under
Hollister's watch)..I missed 3 days of work and had
a rash..Was the worst thing I could have ever imagined!
I have always said, I have no coping skills and
can't handle anything! God truly has some sense of
humor!

This hangs in the kitchen..to remind me..

You cannot add any time to your life by worrying
about it...Matthew 6:27

Max Lucado(one of my personal favorites)
writes about what Matthew said...

Anxiety is an expensive habit. Of course, it
might be worth the cost if it worked. But it
doesn't. Our frets are futile.

Worry has never brightened a day, solved a
problem, or cured a disease.

God leads us. God will do the right thing
at the right time. And what a difference
that makes!

I try very hard not to worry, it is very difficult
for me. I am trying to let my faith guide me on
Hollister's journey. Not bad for someone who got
a rash over baby teeth! haha

Friday, May 13, 2005 2:46 AM CDT

Friday the 13.....

Thursday the 12th was a toughie.
Hollister did not make it to therapy or school.

The IV's ran until about noon. That is when he
decided to get up. He was tired all day. Layed on
the couch for most of it.

He was able to get a haircut. Thanks to Mary, she
came to the house to do this. He needed one in the
worst way. I know that will help him feel better.
He smiled and said, it was long enough to get a JUG
(Justice Under God) detention at school. But he knows
Mrs. Austin would never give him one..haha

He complained of his whole body hurting today.
couldn't touch him at all today. It hurt to bad.
He didn't even want rightie touched. He couldn't
feel it but knew it hurt..The pain he is in, would
be intolerable by most of us. He is tough!

He is getting IV fluid again tonight..Another long
night at our house!

I have decided that he has a bug his complaints
and how he looks are different than before. He is
hot, instead of freezing. It is not longer a headache,
but whole body pain..He even cries in his sleep.
He is weak and having trouble coordinating any of his
movements...Strange..
That is why I think he has a flu-like bug..Rest and
fluids should help. I am going to call Rochester
this morning...looking for any advice and or comfort!

Hillaree had her program at school. Dick stayed with
Hollister so Harrison and I could go. It is so nice to
see so many familiar faces. I commented to the kids on
the way home, that I am having a hard time knowing what
to say to folks...I never know what or how much people
want to know about Hollister..

Harrison who is 10, and wants to be writer..I believe
he may be wise beyond his years..He said,.."Mom, I
always say, He is fighting a good fight."
I think tonight there are no better words than that.

Hollister is fighting a good fight!

Happy Friday the 13th!!!

Wednesday, May 11, 2005 9:54 PM CDT

No Hooter's today...Hollister isn't quite himself.
Karen and Cole he is taking a rain check..Maybe one
day next week..He had his heart set on them.

Hollister felt "odd" most of the day, and never
got off the couch.

Harrison and the entire cast of 4th graders put on a
very delightful play today. It was awesome. It was
about tongue twisters. Harrison played a game show
host..His name was Wink Hughbett. I was glad I could
make it. There are some talented actors in the 4th
grade. A job well done.

Tonight, Hollister, Dick and I drove up to Perry.
Early April, I wrote of a young man Trent who had died
from a brain tumor. His mom Joelle and I have become
e-mail friends. God truly has a plan..when we listen
or not...
Tonight in Perry, they had a benefit for the family.
It was the perfect opportunity to meet. The event was
very nice. Joelle and her daughter Mindy were as I
expected, humble, caring, and delightful. We were lucky
enough to meet Trent's Grandma and Aunt. I am amazed by
this family. I feel very blessed to have made the
connection with Joelle. I am very sorry I never got
to meet Trent. I do feel like I know him, and his death
at 19 is very personal for me.
It was fun to meet them. I am glad they got to meet
Hollister...Next time, Hollister will be feeling a
little better.
Hollister wanted to go. He knew it was important for
me. He tried his best. Unfortunately, he isn't
feeling up to his old self yet...We did make it home
and got him into bed. He was exhausted. He said his
whole body hurts..He is getting some IV fluids tonight.
Hopefully, this will help him feel better. He is sleeping
already..Looks very peaceful.

Hopefully, the IV's will do there magic, and he can
make it to therapy at 8am!!!

It was great to meet Trent's family. I can't imagine
the hurt in their hearts. Time will pass and the empty
whole of losing their child will always be. We ask
that God continues to hold them in the palm of his hand.

Tuesday, May 10, 2005 11:15 PM CDT

We are home!!

Thanks to everyone at Blank who provided
Hollister with great care. It is nice to be
at a place that we feel so comfortable at!

The seizures have lessened. I promised I would
bring him back to the hospital in a timely manner
if Hollister started having increased difficulties.
Not sure what that means..ha

He is very weak and tired. His headache is bad. He was
very quite and crabby tonight. I think he is afraid of
having to go back to the hospital. He slept on the
couch, ate dinner and headed to bed. Hopefully,
a good nights sleep will make a difference
for him.

Hollister continues to challenge all of us. His
medical conditions proves to be quite difficult.
I have decided that I really don't know very much!
I know that I hate this stupid disease....

I do know that this is the most difficult job, I hate
to see him in so much pain. He is miserable with
the headaches and continues to say that he feels
"odd". I continue to feel helpless.
I am reminded daily how stressful this is on
everyone. Harrison and Hillaree are also dealing
with the tough days. I can see the continued hurt
and worry in their little faces. This is way too
big for all of us.
Harrison fears that God has forgotten us. He has a
sense that his friends lives are better. Our lives
have changed so much, and none of it seems good to him.
I try and remind him, that God does truly loves all
of us. Especially Hollister. I remind him that God
hasn't forgotten about us and he is on this journey
with us. We are not alone. He is comforting Hollister
and giving him the strength to get up each day.
It is hard when you are 10 and your big brother is
so sick. It must be so painful. Somedays, I feel
helpless that I can't take the pain away from any of my
children. I don't know how to fix a broken heart.

Hollister needs your continued thoughts and prayers.
He has many difficult days ahead of him. He is tough
and willing. He will have a light day tomorrow and
off to therapy on Thursday...Tomorrow is Hooter's
Wednesday... I hope he is up to it!!

Here's to better days ahead!!!

Monday, May 9, 2005 11:39 PM CDT

Another day ends...at Blank Children's Hospital..

The weekend was a tough one. Hollister was having
seizures almost continually on Saturday and Sunday.
It is very difficult to watch him struggle.
He slept very well last night...finally.

Today was a much better day. He looked great this
morning. I am very encouraged by his improvement.

This afternoon, he was tired and felt "odd". He had
several seizures again..and unresponsive episodes..
He had another one before bedtime. He is resting
well now with the help of Ativan.

Good news...the amitriptylin is being stopped.
It will take a few days to drop the dose off.
Many of Hollister's current situations started
when he started the amitriptylin.(remember this was
started to help control the headaches..) We are
removing one of the variables hoping this will
get Hollister back on track!
We will have to address the headache.

Hollister continues to have his sense of humor
intact. When he is awake and feeling good, he is
joking with all his "regulars". He is very comfortable
here and we are lucky to know how much people care
for him.

I believe Hollister is struggling with all that is
going on with him. His faith is never waivering..but
he has asked a few times WHY...those are very difficult
questions this weekend..Thanks to Father Kirby for
coming and talking with Hollister. I know it made a
difference for him.

Not sure what tomorrow will bring..Hopefully home..

to Peggy's husband Duane..LUCKY Dog...A new car..

Thanks to all who continue to check on Hollister.
He continues to need all your thoughts and prayers...

Sunday, May 8, 2005 2:25 PM CDT

Happy Mother's day!!!

Thanks for all the great messages..Not sure I can
live up to all the kind words.

A lot has happened since Cinco de Mayo....
Hollister made it to therapy and had a great day.
He worked very hard. He was animated, argumenitive, and
opinionated. He was Hollister. Everyone who saw him,
thougth he looked great.
We went home and he continued to be spunky all day.
He told me I talk too much, use the computer too much,
talk on my cell phone too much. It was a great afternoon.
I told him I wouldn't talk, so I locked my lips..
It made him crazy. He told me I should still talk to him..
He walked around the house after me with his eyes
closed and said he was blind...so, I had to talk to him..
When I did..he laughed and told me, I knew you couldn't
do it very long... It was an awsome afternoon with him.

All good things come to an end...

About 5pm I noticed him lying on the couch. He was
pale and grabbing him his head. He had changed and the
headache was winning yet again..
He started with some seizures so I started an IV..hoping
that the fluids would buy some time..
8:30 he was unresponsive and the seizures continued.
At 9:30..I gave some Diastat(valium)..Didn't help..
Seizures and unresponsiveness lasted all night..Very
long night..I hesitated to take him to the Hospital after having my intelligence insulted by the Residents at Rochester..
Finally, at 6:30am...he woke up..For a short time and
the seizures continued..
After talking to The Geneticist(at Mayo)and our Nurse
Deb at Blank...It was time to bring him in..

He has seized and seized..
When he wakes up he is oriented and Hollister.
This is good.

He did miss the Prom..It was nice that some of his
classmates stopped by. They all looked great. I was
sad to think it was another milestone missed..

A lot has happened in the past few days. I will
write more later...

The good news...I went two days without touching a
computer..I told Hollister..It was more than he could
hope for.

Hollister is awake now...for how long..we don't know...

Happy Mother's day!!!

Keep the good thoughts..We continue to need them!

Wednesday, May 4, 2005 10:52 PM CDT

Today was a much brighter day than yesterday.
We all are up and out of our pajama's today.

Hollister got up around 10, in time to shower
and make his 11:30 appointment. He looked much
better today. Still got the blasted headache,
but able to move.

He did make it to school today. He is always happy
to go there. Some of his favorite people hang out
there. He will miss it when school is out.

After school, he went with his Aunt Terry to the
middle school track meet. It was a nice sunny day
to sit outside. It was at Dowling. He didn't get home
until 8:30. He was barely able to stay
awake until 10pm..He couldn't get all his pills down.
All that fresh air really tired him out. I think he
was asleep before his head hit his pillow.

Tomorrow will come early for him..8AM...THERAPY!!!!

I feel like Carol Burnette, I am going to turn up
the lights and answer a few questions...(Don't ask
me who Carol Burnette is.....)

To the Students in Mrs. Johnson's class..Make
sure to do your homework..Good things happen when
your work is done!!!

Jolene asked if Hollister ever tired of Wings...
The answer is NO!!!!!

Does he still have the headache....YES

Yes he does take over 100 pills a day!!!

No he doesn't have a date for Prom.

Yes, Hollister has always had great Faith. I feel he is the glue holding us
all together.

No, we are not super parents. We are
doing what each and everyone of you would do if you sat in our chair...

Yes, our dog is still the boss of the
house...yes, he does need a bath..any
volunteers..

Any others...

My time spent in South Texas and
San Antonio...I am reminded that
May 5th is......

Happy Cino de Mayo!!!

Tuesday, May 3, 2005 10:14 PM CDT

Today, the headache wins...

Hollister was down today with the headache.
No therapy, no lunch, no nothing. He was nauseous
and weak. He layed in bed most of the day.
He got up around 4:30...Just in time for his
4:00 meds...
I stayed in my pajamas all day.. I put a sweatshirt on
this morning, I was chillly. I noticed about 6:30
tonight I was still in my PJ's..not good...

Around 6pm, we noticed that Hollister had fallen
asleep on the couch. He didn't look very comfortable,
but looked peaceful..About 8:30 we noticed he hadn't
moved and he didn't even wake up from the noise of
supper..When I tried to wake him, he was unresponsive..
We couldn't arouse him. It seems we were torturing
him..Poor Harrison takes it all so personally..
I am just not that comfortable..I worry that his
airway will change or not be protected..(I have
been an OR nurse too long)..I called our friend Deb...
Blank Nurse extraodinaire..She stayed on the phone
a long time with me...then I called Aunt Gayle to
come check his Blood sugar...79..OK
He finally aroused at 9:40..That was a long 3 hours
and 40 minutes...
He continues with the Headache, he is tired, weak and
shaky...
We have to figure out what is happening... I continue
to pray for the Doctors and Nurses to be SMART!!!

The t-shirts are very cute. It is a nice idea..
Some of the kids have worked very hard to get them
done. We are touched.

No therapy tomorrow. Will be good to have a day
off. I am optimistic that tomorrow will be a better
day. I am going to get dressed! haha
He needs to eat, drink and be merry!!!

Here's to Hollister...
The UMDF...says...Energy For Life!!!
That's what Hollister needs....

Sunday, May 1, 2005 9:29 PM CDT

Hooray Hooray
The first of May...

Doesn't seem like it. Harrison played soccer
today and there were snow flakes..Something
wrong with this picture!

Hillaree played two softball games yesterday..
and it was freezing. Hollister did make it to
both games. He was quite chilly. He was a trooper
and didn't complain much.....
We did make it to Hickory Park...Hollister ate well!
(Something other than wings...Turkey!)

He is still very tired. That headache continues to
wear him out. That fresh air on Saturday made him
very tired. He slept until almost 1pm today.
He ate some cereal and went right to the couch..
He slept again until we made him get up and go to
a movie.
After the movie, we went to a Bell concert.
Our friend Julie plays at her church. Harrison being
the good little Catholic boy that he is, genuflected
before he sat down. He then asked where the kneeler
was.. I tired to explain to him it was a Methodist
church..
It was fun to hear the music. We tried several times
to explain it to Hollister. I am not sure he got where
we were. He seemed to enjoy what he could.

I am always amazed at God's work in my humble life.
My life has been full of so many moments when you
have to stop and say..This isn't a coincidence.
A perfect example of this is..
6 years ago when
Hollister had his first seizure...We had left the
kids home alone..for the first time ever..Dick and
I had gone to friends for dinner. We leave, stop
at Walmart..to get Valentines..It was only 10:30..
We get our treats and get in line..Walmart..11pm..
only 1 checker...Dick wants leave..I made fun of him
and we stand line...3 people from the front and I say..
Let's go..I wasn't in a hurry, I was ready to go...
Dick now thinks I am a crazy woman. We leave..
We get home..everything seems Ok..Hillaree is getting
out of our bed and said.."Some one has thrown up"..
I go in Hollister is face down, blue, not breathing,
jaws clenched..vomit coming from everywhere..and
apparently seizing..(I had never seen anything like it!)
When I think of this night I amazed that we got
out of that Walmart line in time! God is Good!!

I am humbled again this weekend. The mother of the
young man(Trent)who passed away in April, contacted
me. It seems our paths have crossed on several
occassions. I am very touched by her words and the
words of her friends. The prayers and support are
greatly appreciated. It is very humbling, when you
consider all they are living with and they still
care so much.. Truly God is at work here...

Happy May Day!!!

Friday, April 29, 2005 8:32 AM CDT

Finally Friday.
This has been a tough week.

Harrison did get his cast off..Yeah..But...The
joint is just starting to grow new bone. The fingers
are now taped..No running or jumping for three weeks!!!
No gym, no soccer, or baseball..That was a tough blow!!
(we may find a way to play soccer!!!!)

Hollister's lunch at Hooter's was especially fun..
Carrie (his favorite) was our waitress. She is so
nice. She is in the picture on the front of this page!
Hollister was able to eat 14 wings..He was still
hungry, but had to get to his Dr's appointment.
My friend Peggy (from Spencer) was able to join in
the wing fest. It was great fun to see her. She also
enjoyed her time with Hollister!

Hollister's appointment with Dr. Mooradian went well.
He said that his heart is still very strong and
healthy. No evidence of the cardiomyopathy..That is
what we continue to watch for. The heart of course is
a big user of energy..the mitochondria will eventually
cause his heart big problems...

He also had his hearing tested yesterday. Diana Hanson
at Blank is the Best Audiologist. She takes great
care of Hollister. His hearing is about the same....
Except there is some changes to the right side..again..
Seems what ever is causing the numbness on the right
side has also affected his hearing..No fun..

Hollister is tired and lays on the couch most of the
time. He doesn't have much energy...He appears to be
kind of sad. He has talked of "not being here"..causing
too much trouble and financial burden..ruining my
life....it would be better if I weren't here..Everyone
else would be normal if he hadn't gotten sick...
He went as far as to say he was ready to die...No one
would even notice...He called the couch his Death Couch!

Well, I told him otherwise.. I told him, I wouldn't
be normal no matter what happened! Who was he to think
he had some control over my life to say whether or not
he had ruined it! I reminded him proudly, I had been
a loser long before I met him!!!! I told him to move
over and make room for 2..I would put my big butt on
the death couch and go before him.. He finally
smiled and realized just how silly that was..I
continued to lay on the couch and "bug" him for
about 45 minutes..until Dick and the kids got home!

I am thankful that he will tell me what he is thinking.
This is not the first time and this will not be
the last..that Death crosses Hollister's mind...
I am sure from his perspective that he is tired of
the constant pain, he is lonely, and has to much time
to think...
Fortunately, I know him well enough to know when he
needs to be lifted...I have my ways!!!!

The weekend brings Softball in Ames...Yeah maybe
dinner at the Hickory Park..(My personal favorite)
Harrison hopefully will get to play soccer..
We will involve Hollister in as many of these
activities as we can!

We continue to draw great energy from this page.
It is a great resource for Hollister(and me) on our
low days..Just knowing how many people read this,
amazes us all..You all continue to help us....
"Re-define Hope!!!"

Wednesday, April 27, 2005 8:24 AM CDT

This has been a busy week, not sure why the time
goes so fast!

Monday, Hollister saw Dr. Spencer. She is the pediatric
opthamolgist. We are very lucky to have such a qualified
specialist in our "small town". She has taken care
of Hollister since his first stroke. She is learning
about this disease as we go. Fortunatley, her husband is
a neurologist in Ames. He has vision. It is hard to
say where and how much. The testisng was very difficult
for him. She was very patient and tired to be as
thorough as possible. His retina and optic nerve still
look helathy! That is always good news.

Today he is seeing Dr. Mooradian, the pediatric
cadiologist. Again, very lucky to have his caliber
of care here. Hollister sees him once or twice a
year.Depends...Hollister had a lot of the testing done
as St. Mary's during his stay. I will be curious to
see what changes have occured.

Tomorrow, he will see Diana Hanson, his Audiologist.
She has been awesome in keeping up with his hearing
loss.
Tomorrow also, Harrison is supposed to get the cast
off. He is very ready. He has missed playing baseball
this spring.. He already reminded us, that he has a
game or practice on Thursday night!!!

We continue on our quest for answers..Not sure any will
come.I have been having nightmares all week about the
events of the unknown.. I have argued with hospital
personel all week in my dreams!!

Today will be his Wednesday lunch at Hooters. That
should get his heart racing before the appointment.
He is looking forward to it. Remember he goes there
for the food!

Busy week with appointments. Therapy continues..He is
working hard. He is also trying to make it to Dowling
as often as possible. He will miss going there after
graduation.

We are trying to survive. Somedays days are easier than
others...

Sunday, April 24, 2005 9:59 PM CDT

A weekend at home is always a good thing..

Saturday was chilly. This allowed us to work
on projects inside all day. Many started, many
unfinished!

Hollister got out of the house to a movie with his
Aunt Gayle... He said it felt great to be out of
the house. There is still a movie by us with the
big screen, easier for him to see!

Hillaree and Harrison both made it to fun night
at the school. They had a great time. I love when
they can be normal kids...

Today brought a little heat from the sun. Yard work
was on the agenda today! So much to catch up on from
last fall, that didn't get done. Some days I feel like
we are sinking!!ha
House and yard...1
Dick and Jan.....0!!!

Hollister slept a lot this weekend. His energy level
is very low.. He keeps saying he doesn't feel well.
He slept a lot on the couch.. He hasn't been up before
12:30-1:00 any day...
The medicine for the headache should start to show
some relief..it has been 6 weeks...The Magic time..
He keeps patiently waiting.

Hollister has deteriorated before our eyes, that last
6 months.. I am anxious for some recovery time now..
It is time for him to make some improvements...I keep
reminding him, that he needs to be in control of the
disease...(easy for someone to say...who isn't sick!)

I watch him and see him stuggle. It is harder for him
to take his pills..Harder to walk...Harder to do many
things...He could do, a few months ago. My heart
continues to break..

I continue to ask God to provide Hollister dignity.
To help him maintain his abilities as long as possible.
He is truly an innocent child, who should do as much
as he can. He should be allowed to enjoy life.

A favorite saying of Hollister's when he doesn't know
what to say, or what your talking about...

"What's the point!"

He is so right..what is the point..Worry is wasted
enery!

Thursday, April 21, 2005 10:59 PM CDT

Today was quite the day...

Dowling had its Academic Assembly today at 10:10..
We were very happy that we were home and able to
attend. Hollsiter has missed so much this year, that
it was important to be at the assembly.

He recieved an academic letter and an academic medal
of excellence.It was an awesome moment. When his name
was announced, another student helped him walk to
recieve his awards..It was an incredible moment. The
whole crowd was clapping for him. It was one of the
most emotional moments of my life.

Because of his illness during high school, his
participation has been limited. His social activities
have been limited also. Academically, he has worked
very hard. He has taken some of his classes, through
the hospital program at Blank. He doesn't have the
energy to go to school a whole day, and do therapy.
The hospital school was a great way for him to catch
up and take lots of classes. Hollister worked very
hard the last couple of years and was able to get
a lot his credits finished.
So, today when he was honored with the rest of his
class...it was like he belonged.
He didn't get to play baseball like he dreamed..but
he will be remembered for working hard and being smart...

He went to therapy after lunch. He met with Karen and
Amy who gave him a thorough once over! As usual everyone
came to check on him. I feel blessed that we have the
very best team of therapists. I think Hollister truly
has the A team...Thank you to all of them who care
so much!

He slept all afternoon on the couch. He was exhausted
from the morning. He continues with the headache.
Hopefully, the medicine will start to help soon!

Tonight brings thunderstorms..which means good sleeping.

I just want to say thank you to everyone who continues
to check on Hollister. I am amazed by the power of your
written words to us. Some make me laugh, cry and think..
I am overwhelmed by the outpouring of love that one
child has started...

I keep reminding myself, that this too will pass..

And that is truly what scares me!

Wednesday, April 20, 2005 10:14 PM CDT

Home again Home again.....

We made it to Des Moines about 4pm this afternoon.
The sun was shining and the flowers and trees look
great. Even poor old Hooch Dog was happy to see us.

This was a short stay..12days...this was like an
oil and lube...ha

Hollister's journey is getting a little more
interesting all the time.

The top 10 things I have learned in the last
12 days:

10: 3 hours in a car, waiting to see your child who
has been lifeflighted is an eternity!

9: How unpredictable seizures can be!

8: The thoughts and prayers from so many give
us great comfort. We are never a lone!

7: That metal bedpans are still used....

6: How tough Hollister is..how bad a head can hurt...

5: How hard it is for Doctors to say...I don't Know!!

4: Hospital food can be good!

3. That the Pope can interrupt the Price is Right..
2 days in a row! Not good for Hollister....

2. That Hollister smiles in his sleep!

1. The greatest place to be is at home with your
whole family!!!

Unfortunately for Hollister we came home with no
answers. Time will tell. He is weaker and unconditioned.
It will take some work to get back to where he had
been. Hollister's therapists are on standby..ha

He is up to 43 pills tonight. He did get them all
down. I eliminated a couple xtra's. The 15 new ones
are quite big..YUK

Thanks to my Dad, who could stay with me. He drove us
back to Des Moines... Made it easier for Dick to be
at home.

God works in mysterious ways. I am sure there is
a reason that Hollister went through all of this.
As usual with Faith, the outcomes may not be for
us to know! Faith and a dry sense of humor that is
what continues to get Hollister through this..

We are happy to be home, sleeping in our own beds..

Tuesday, April 19, 2005 11:38 PM CDT

Still no news...Hollister continues with the EEG
today.

He has a horrible headache. About 6:15 he grabbed his
head. He had a very bad headache. I could see it in his
eyes. He chose not to take a tylenol.
He finally ate some jello and a piece of pie around 9pm..
He looked kind of rough today.

Today was a quiet day for us. Hollister had no
unresponsive episodes. We had no need for the residents
to visit us without the attendings...

I will be very glad to take my boy home...

I really hate that he has a disease that has so little
information. 20 years from now, what is happening to
Hollister today, may be a well know problem of the
MELAS..but for today there is no information.

Hopefully, tomorrow will bring news. I am hoping that
someone will be able to give me even a little information
about what is going on.

We are keeping our "Chins" up!

Monday, April 18, 2005 9:13 PM CDT

Hollister is in his fourth room here. He moved yesterday
to the pediatric floor. Thank goodness we don't have
much stuff here!

He had a good day yesterday..He was more awake. He is
getting stronger. Last night at 8:55...just as Desperate
Housewives was ending. I was laying in bed with him...
he had been sleeping, but hadn't moved..Seemed odd...
We tried to wake him for his pills and he was..again...
unresponsive...The nurse called the residents...
2 residents and a med student came..They thought it was
funny..One of them dropped, a mental bedpan..Hollister
didn't move, but I almost had a heart attack...
Needless to say, I didn't think it was funny..

I talked with the Neurologist this morning, she
thought a continued EEG would be a good idea..I told
the Neuro Resident, that I didn't appreciate that
everyone thinks this is so funny......
Of course, he hasn't had any seizures or episodes
of unresponsiveness.
I am running out of patience and would like to
come home.
Hollister is feeling poorly tonight. He said he
was hot, and threw-up all over his sheets....
He is listening to a twins game with Grandpa...
I keep reminding myself, that this will make a great
chapter in my book...that of course will help me
get on the Oprah show!

I am very proud of Hillaree tonight. She recieved an
award tonight at a United Way Banquet for her
volunteer efforts at the NBA Ramsey Home...She
has been volunteering there since she was 10 years old.
She is amazing..

I keep praying to God, that these "episodes" will
reveal themselves and the cause be known....

Sunday, April 17, 2005 12:29 AM CDT

It is a beautiful day in Rochester, after a day
of nice rain yesterday.

Hollister got a shower yesterday. It took both
Dick and I. It was a very difficult process. He
is weak and has poor head control. He headbutted
me once, so hard it rattled my teeth. I am the
one who was complaining about the headache!
I am greatful that all of my teeth are still intact..HAHA

He ate well yesterday, and even ate his supper in
a chair. He was tired out after all of the activity.
He is tolerating the new pills..It is a lot to take.
He assured me, we wouldn't be taking them at home!

He was talkative, smiling and antimated for much of
the afternoon. He looked great and smelled great!

He had an "episode" of unresponsiveness again last
night. This time it last about an hour. Everyone is
puzzled about what is causing them.

One of the residents insulted my intelligence in the
morning, insisting that Hollister was doing them
on purpose. I didn't know what to say....for once...

I am disgusted with the fact, that when "we" don't
know or understand Hollister's illness..that nothing
is wrong. I would think as a resident in a great
learing facility, that "they" would take the opporitunity
to do a little research and learn about MELAS!

Hollister is resting today with a continued Headache...

I am anxious to come home. I feel very defeated....

I am considering contacting Jerry Lewis...To let him
know that some of his Muscular Dystrophy kids have
the ability to "fake" unresponsiveness...haha
That is a rare talent!

I still like our Doctors here and the nursing care
has been great. The attending Doctors who know him
are very concerned....that this is the illness
advancing...

Hillaree played a double header yesterday, and
Harrison is playing soccer today..Dick went home
this morning...

Life goes on.......

Friday, April 15, 2005 12:18 AM CDT

Happy Tax day..As our friend Steve, the IRS man said
to Hollister..."The tax man cometh..oh ye oh..."

We moved to new room. The pediatrics floors were full,
so Hollister is on a Neuro Floor. That was an adjustment
for us. The pediatricians and neurologists that know
him continue to follow.

Yesterday was filled will good news and no news.
The Good news!!!
The MRI didn't show any evidence of a new stroke.
It looked like some of the old has resolved a bit...
The EEG only showed a few "episodes" of something....
We have seen no new seizures...
But, we all knew there would be a but,
He is stilling having the unresponsive episodes, and
his headache is "AWFUL", he is very weak and tired...
His vision remains questionable. He has had episodes
nausea...Answers are slow coming if ever!
He has slept a big part of yesterday...
His blood sugar was 60 in the afternoon. We asked if
he could eat, and he said..."a #7!" Dick went to get
it and he did eat almost a whole sandwich.. That was
the first he had eaten..
This morning when we woke him up, he had no idea
where he was... He knew he wanted to go home..He did
eat 5 pieces of bacon...
The Geneticists started him on the new medication.
His blood levels have been OK, so they started it
orally...The amount is 15 pills twice a day... They
are big tablets, so with what he already takes, his
meds are considered breakfast and supper..ha

We were lucky enough to get a room at the RMH..We love
this place..remember to save your pop tabs..We have
showers and laundry here..those conviences are not
available on the adult side of the hospital...

The UMDF(united mitochondrial disease foundation)
Motto is...
Re-defining Hope!
All of you continue to help us have strength and hope!

Wednesday, April 13, 2005 10:53 PM CDT

Wednesday, every other Wednesday is supposed to be
a Hooter's lunch day. There was no Hooter's for lunch.

Instead, today...I had to do one of the most difficult
things I have had to do as a parent. I stood in the
the Blank Parking lot as Hollister flew over in the
helicopter being flown to Rochester. My heart was broken
knowing that he was going without me, and he would be alone
until I could get there. Driving there was the longest
three hours of my life...

It appeared to be a beautiful day for flying. He left
Des Moines about 1:30. He hasn't been able to say
much about the trip. I am not sure he knows
he is here.

Hollister made it to the floor...after being evaluated
in the ER where he was funny, talkative and animated...
His arrival to the floor he was unresponsive...He was
transfered to the PICU.

Dick and I arrived about 5pm, he was getting ready to
go for a CT of his head..they checked his Blood Sugar
and it was 30..they gave him some Glucose and he
had the CT.
Continuous EEG monoriting is being done. Seizures and
any other strange brain activity is being monitored for.
A lot of tests have been done. Information is being
gathered, hopefully tomorrow we will know something.

He is very sleepy, disoriented, goofy, and funny. His
mental status is altered. I didn't want to point it
out, but mine is also.

I am certain, that our stay will be short. I am
optimistic that Hollister will move to a regular
room tomorrow.

Thanks to all who are thinking and prayig for
Hollister. I know that God does hear and answer..

Wednesday, April 13, 2005 0:22 AM CDT

Another year older..Time certainly marches on.

Thank you to everyone who made my day very special.
We had lots of visitors..That is always a great
distraction..The phone calls and emails were appreciated.

I feel very fortunate to have so many great friends here
at the hospital. I had lots of wonderful surprises.
I celebrated my birthday here 3 years ago, I never
dreamed I would be here this year also....Everyone here made it fun...
I felt like I was with family...

Hollister did get out of the PICU..He made it to his
room..308! It is a very familiar comfortable room.
He had some very lighthearted moments today. It was
Turkey Tuesday, meaning he got to have turkey for lunch..
He ate it all. He decided that he would like to have
the fruit cocktail at EVERY meal...
With the help of his Singing OT Angela...He sang
Happy birthday. It was an awesome gift..He also lifted
his head and gave me a kiss. That is a moment I will
never forget...

Hollister continues with the episodes of numbness in his
leftie..this scares him as the rightie is still numb..
He was lighthearted today, and humorous as always....

He had another unresponsive episode around 8pm tonight.
He had just finished petting Ranger the pet therapy dog,
and he fell asleep. His nurse Bonnie came in to give him
some medications a few minutes later and we were unable
to arouse him. He didn't wake up from painful stimuli...
It was just like Sunday..It lasted 2+hours..The doctors
and nurses took excellent care of him. He is very sleepy
from all the medications and is sleeping.

Tonight, we pray for comfort for Hollister and answers.
Hopefully, tomorrow there will be some information on
the tests that have been run.

Team tough continues to another day....

Monday, April 11, 2005 10:39 PM CDT

It is quiet here and Hollister is sleeping. About and
a half an hour ago, we were talking with Hollister and
he took his hearing aids out and he was ready for bed.
It couldn't have been funnier.

Hollister remains in the PICU tonight. He did have a
MRI this morning, the results were inconclusive. The
EEG results weren't available. We did send some labs
today, some of the labs take several days to get the
results.
I am hopeful that tomorrow will bring some answers.
When the information has been gathered, Dr. Mack at the
Mao clinic will be called..

Hollister has had periods of vision today. It comes and
goes. The numbness in leftie has done the same thing.
His headache continues, and he states that he feels
AWFUL!!!!

Hollister is very weak. I was able to get a shower
chair and get him a shower. He was exhausted after
that,so was I. He slept for hours after that.
9:30pm, I woke him up to take his pills. He drank half
a coke and ate a rice cake...That is his new snack
of choice. 45 whole calories.....
That was his supper!

Hollister when he has been awake continues with his
great sense of humor. He appropriately gave each of
his therapists a hard time today, Even arguing with
Amy!!!ha

Tomorrow will bring some answers and a move from the
PICU. I hope!

Thanks to all who continue to think and Pray
for Hollister....

Sunday, April 10, 2005 10:49 PM CDT

It has been quite a weekend!!

Hollister did improve yesterday, and we headed out
to the floor. We did get a nice big room, but it wasn't
Hollister's "room". He was bright and talkative at times.

He had started to have periods of numbness to leftie.
Hollister is very scared about this. Through the night,
these "episodes" became more frequent and were lasting
longer.
Last night we tried some tylenol three and morphine for
the headaches...No help.

This morning, Hollister woke up talking about bacon..
It was a good thing breakfast came and he got 4 pieces..
He ate well, complained that he didn't feel well.

The wierd episodes, that were numbing leftie continued
today. I couldn't put my finger on it but something
wasn't right.
He was very unsteady, but I got him into the bathroom.
He was wobbly.... he got back to bed and had a snack
of wheat thins and a pepsi...He appeared to be napping..

Hollister's buddy, Dr. Dodge came in to check on him
and have a game of thumb wars...I swear when she came
in that he started smiling when he heard his voice.
We talked for a while and he appeared to be sound a
sleep. She tried very hard to arouse him and he was
very unresponsive...She checked his pupils and he
still didn't respond..She ordered 6mgs of Ativan...
made, no difference..The transferred him back to the
PICU. He did finally arouse about 2 hours later...
Much to our Hollister...He wanted to make sure no one
had eaten his wheat thins...
That loss of the ability to respond was a very
frightening time..
He is very sick tonight in the PICU..
He is hooked up to video EEG..Hopefully, this will give
us a hint of what is going on.
He is in a lot pain.
He is complaining of chest pain and difficulty breathing.
He is blind tonight..
Tomorrow morning he will get a MRI.
The information will then be shared with our Dr. Mack
at the Mayo Clinic.

Tonight, I pray for answers to what and why....

We have had awesome care. There isn't a nurse who
doesn't go out of her way to talk to or check on
Hollister. They make sure to take care of the entire family!
Everyone is very sad Hollister is here. It is very heartwarming for
us to have the support of so many in this hospital. Hollister has awesome
therapists who come in on their time off to make sure he gets what he

needs. That is a lot to
be thankful for.

P.S.

Saturday Hillaree had two softball games. I heard that
she played very well, and they won both games.

Harrison had soccer game today. He scored 3!!! goals
today, he played with a towel on his cast.

I am very proud of both of them. They are great kids.
This is very hard on them. I wish for them a normal
childhood. I know that they have extremely tough
days a head of them.

Saturday, April 9, 2005 11:36 AM CDT

I hate that I was right, that Hollister wasn't himself
the past couple weeks. His therapist and I have been
very concerned with his deteriorating changes...

Last night he started seizing and was brought to the
hospital by ambulance..about 6:30. I have to say that
he recieved first class treatment and care in the ER.
I am very impressed.
He seized for a long time. We got here earlier than
we normally do, so he is in much better shape!!!
No aspiration....
He spent the night in the PICU. He continued to have
small seizures most of the night. His lactic acid was
greater than 9 last night.(normal is like 1). That
tells me, that he has been sick and seized for a
long time.
He got lots of fluids last night and his lactic acid
was only 2+ this morning..YEAH!!!!
Hollister will be moving to the third floor soon.Yeah...
Not sure what is going on and why...

More later....

No yard work for me today....

Thursday, April 7, 2005 10:34 PM CDT

It is hard to believe a week has passed since I wrote a
journal entry. Time is quick.

It has been an emotionally hard week for us. We had to go
to a funeral on Monday for a woman, I have known my
whole life. She was an important part of my childhood.
I was very sad to learn she had died. She was a neighbor
to my parents in the country and a very good friend to our family.
She will be missed by many, especially her children
and grandchildren. It is hard to imagine the people
of my life dying. I don't feel old enough or responsible enough for this
to happen. I fear, when this generation goes,
we will all be left with no one who know how to do anything!

On Tuesday mornig a young man (19 years old) from Perry
died from a brain cancer. This young person had connected
with a lot of people. He was in the news a year or so
ago....and in February, he had a re-occurance and they
set up a caringbrdge page. I felt lucky to have the site,
so I could know him and his family. I felt very attached
to this young man, I had never met. The roller coaster
ride for them ended abruptly.

Another friend of mine, had his third brain surgery in
as many years. He had it today in Iowa City. He is 16
years old. The roller coaster for them is a wicked
ride also. He is doing surprising well at this time.
God is Good...All of the time.

Hollister continues to struggle. He went to school today,
first time all week. He is tired and keeps telling me
that he doesn't feel right. He is complaining that the
left side of his head is really hurting..His quality of
life has changed. He goes to therapy and sometimes school
and sleeps on the couch. I have been content knowing
his quality of life was good. I know the quanity will be
cut short, now his quality is affected. I am not sure
what to think at all.

I have had a hard time writing a note. I am very thankful
for everyone who continues to check on us daily. It means
a lot to us, to know that we are not alone.

I carry a very heavy heart this week. I feel like the
ride we are on is very rough. I am reminded that we
are still riding as we pass the ticket taker one more
time. I know God has a plan, and will stop our ride on
the day and time of his choosing.
I wonder if it is OK to question the plan...I think and
think.. about how this plan can be God's work, and
this week I am lost.

Tonight, as I helped Hollister and tucked him into bed,
and he hugged me and told me how much he loved me...
I felt Lucky! I still have him to love and hug. He is
still very much with me.
I am reminded tonight this might be the plan. To
learn something from all the pain, suffering, and deaths
of those around us.
I have learned that I am thankful for one more...
minute, hour, day, week, month, or year!

Life is uncertain and maybe short..Don't Waste it!!!

To the Beloved Pope John Paul the II
and to our young friend Trent...
Let the Perpetual light shine upon them...

Friday, April 1, 2005 3:36 PM CST

Happy April Fool's Day!!!

The computer has been playing a joke on me all day.
I have been trying since 8:12 this am to get a new
journal posted. The web browser doesn't want to
respond. I am trying again..I guess I am the fool.

For most people this probably isn't a big day...
But, when you live in the house with a 10 year old boy..
This is a holiday and a big deal. It is like living in
a giant whoopie cushion. I sit now with marker on my
face..from the roll a nickle down you nose straight
trick..Yes he rolled it in permanet stamper ink...
Lucky..STUPID me.

My very special friends at Blank Hospital got me
good today also. The Child life department. Fixed the
corner of the lobby that I sit in everyday..The same
couch...It is my spot...squatters rights! Today, it was
a crime scene area..chairs overturned.."my" lamp knocked
over..Crime Scene tape..A tape outline of a little
body on "my"couch!!!It was very funny. They were
waiting for me to come in at 1pm with Hollister. The
girls were hiding. I was shocked to see it. Hollister
thought it was so funny. He kept saying "you can't
sit there today...something happened" I needed a little
boost today, and they provided it. It was great to
laugh..Thank you!

Hollister and I had a long talk last night. I really
want him to get better. It is a new month..Time for
improvements. I miss the old Hollister.(When I had the
old Hollister, I wanted the Healthy Hollister!..
I am very greedy and never Happy!)
Hollister explained that he is working very hard, and
maybe rightie will never come back. Maybe this is
all he gets.I reminded him we are not quitters. He
thought for a while and said, "Maybe the therapists
are working me to hard already..." He was very
serious...I had a good laugh!

I realize the danger of Hollister not feeling anything
on his right side. He smashed his right hand/fingers at
school. He doesn't have a clue what happend. Because he
has no feeling, he had no pain! This was a warning to
me, he could really hurt himself. I need to keep a
watchful eye on rightie! I guess, this will keep him
from learning to cook for a while!

Hollister has had a difficult week with the seizure,
smashed hand, and headache. He has been exhausted. When
he got up this morning he had a big episode. I was
trying to get him to the shower. He was shaking and
jerking all over. He wouldn't respond to my questions
and his eyes were fixed to the right..I was nervous as,
he is just tall enough that it is difficult
for me to lift or move him. I did keep him safe until
I could get him back to bed. Not sure what happened.
Seemed like seizure activity. I think it scared him
also. He slept for about an hour afterward..I asked him
what he thought happened.. He said he has no idea.
I am thankful he didn't fall.

He made it to therapy and seems OK now..As usual
we will wait to see how it all turns out!!

Julie(our very own child life specialist) was with
Harrison in the ER when he broke his finger. She
brought him an autographed picture of the Harlem
Globetrotters. Harrison with his teary baby blues
looked at Julie at said, "Will You take me to the game?"
How could she resist. Tonight we are going to see
the game!

Happy April..Spring is officially here!

Remember...April Showers..bring May Flowers!!!

Tuesday, March 29, 2005 8:43PM CST

NEW BIRTHDAY PHOTOS!!!!!!
How exciting!!!!

Hollister had therapy this morning. He continues to work
hard. He is having some trouble with his words and groups.
I know everyone is thinking, no it can't be...a child who
is Ferstl/Farrell having trouble speaking..That is just wrong..
These kids have been talking since they were born!!
He couldn't name a group of movies today. I knew something
wasn't right. He has been a movie critic since he was 2 years old
when he saw the Teenage Mutant Ninja Turtle Movie.

He did not make it to Dowling this afternoon. He just
didn't feel good. Again, I knew something wasn't right.
Going to Dowling is his social time. He hasn't seen
any of his classmantes since before spring break.
I figured he would try and run from the car to get away
from me!!!! He laid on the couch all afternoon. Even when
he was sleeping he was still grimicing with pain from
that HEADACHE!!!

He is probably over tired fromt the increase in the medication.
It will take a few days to adjust to the new
dose. I am still very optimistic that it will work.
So far nothing....I guess all good things are worth
waiting for..

He is down for the night. He had a seizure before he went
to bed. He didn't look or feel very good. He couldn't
see anything and his eyes hurt so bad. I really think it
is time it all starts to get better. We have been patient!!
Again..Spring is the time of renewal..It is his turn!

Harrison is adjusting to his green cast. He has a lot
of unused energy at the end of the day!!!HA

The pictures are from his Birthday.
A recap of the event!!!
Yes, that is Hollister smiling in the middle of the
Hooter's girls.. Yes he had that smile on his face for
days!!!
Yes, we ordered 180 wings...
5 pitiful wings were not eaten!!!
Hollister ate 23 wings..Broke personal Record!!!!
What happened to the other 152 wings?
Not one memeber of the party mentioned a new personal
record!!!(Except Maybe Aunt Terry?)
Will we ever know????

Monday, March 28, 2005 8:25 PM CST

This was a hard Monday for the kids to go to school, after
an entire week off. Hollister didn't have school today..
Dowling kids got the day off, they earned it selling pancake
breakfast tickets...Hollister still had therapy, but had
time for a long nap this afternoon.

Harrison went back to the Doctor this morning for his
broken finger. I am very happy to report that he doesn't
need surgery. The bone and joint are still aligned.
Harrison was pretty worried this morning. When they took
the splint off, it looked pretty rough..Bruised and still
swollen..Harrison said, "I think we should pray NOW!" I
told him I had been praying all weekend.. The Doctor was
happy with the x-ray, and hopefully in 4 weeks it will be
as good as new. He is sporting a very green cast!

The swimming awards party was tonight for Miss Hillaree.
This is the first year she swam with a team..She received
a most improved metal. We are very proud of her. She
improved by 44 seconds. We are most impressed!

The amitriptylin, the new medicine for the headaches..
(This is medication I didn't want to give, but I am
reluctantly!!!) The dose is doubling tonight. He has been
on it 2 weeks and we are trying to get a blood level that
hopefully will be therapeutic pain control. I hate adjusting meds,
I worry about all the things that can happen! The headaches have
not improved one bit. I fear the headaches will continue
until the swelling in his brain goes away!

Spring has sprung the robins are here..

Sunday, March 27, 2005 7:43 PM CST

CHRIST HAS RISEN!!!!!

HAPPY EASTER!!!!!

We had a very nice day. The weather was great. It seems
spring may be nearing!

We were lucky this morning to attend Mass as a family.
The service was great. We sang all the songs that
everyone knows..I am sure the people around me, were
thinking...stop singing...But I was a glad voice...
Off key... but glad!ha It was great being there and
not in the Hospital..There is no place like a Holiday
at home with Family..
My Mom and Dad stayed until after dinner today, and my
sister Jerri came over. My Mom, bless her heart...cooked
everything I asked for. She spent most of yesterday in
the kitchen...Last night there was a heated game of
Dominos and Harrison(the Club) was the big winner!!!

The Easter Bunny did indeed make it to our house..
He left lots of candy, and hid all the eggs that we
colored..I believe,that there are 7 eggs
that were not found..(YUK)I have a feeling they will start
to stink and show up this summer. Hopefully, the dog will find them..ha

Hollister had a good time with Grandpa. They were
comparing the retired life. It was good to see both
of them laughing...Not sure who likes to nap more!!
Hollister was asleep on the couch before Grandpa was
out of the drive way..I think Hollister is the winner!!!

Easter is such a great time....We hope you all had
an enjoyable day with your loved ones...

Hippity Hoppity Happy Easter Day!!!

Saturday, March 26, 2005 6:12 AM CST

Happy Holy Saturday!!!

We survived Good Friday. I have always loved Good
Friday and the Service. If that doesn't take you back,
I doubt anything ever will..

When they sing the songs... like Were you there when
they crucified my lord...and the sound of the cross
being HIT three times...it is very hard for me to keep
a dry eye. I have wondered and reflected every Good
Friday I can remember. What side would I have been on.
Would I have stood by Christ or betrayed him....
Would I have accepted him as the Son of God....
Knowing what had to be done to fulfull scripture...
Wow...Makes you think....God Truly has a plan for
All of us...

I have tried to make sense of the fact that Hollister
suffers so much. Hollister is not alone. He has the love
of Christ surrounding him... He also has all of you...
Wow, how lucky is he..He has so many prayers and good
thoughts to help... We know that Christ suffered for us...
Who is Hollister suffering for...I wish I knew..I have
said, I believe there is a lesson here...I keep trying
to find it. Then, I am reminded that the lesson may not
be for me...That is the hardest part....

Enough Preaching...HAHA

Hollister made it to both Holy Thursday and Good Friday
services...That is awesome..He wanted to go.
He did well both days in Church...
He was tired and shaky when we got home...

The headaches continue..He is starting to worry they
many never go away. He was asking last night what
happens if the medicine doesn't work..What happens
if my right side doesn't come back...Now those are
questions I cannot answer!!!

Harrison is surviving the broken finger and splint.
He slept Thursday from 4pm until Friday 7am..
He was worn out...I had to mention to Dick, that my
patient load has doubled...I am not used to 2 needy
patients..( I put Hillareee in bubble so it is
impossible for her to get hurt...haha) I am passing
out way too many pills..I told him I needed a raise
and benefits...He told me to call Human Resources....

My Mom and Dad are back form Arizona..They stopped in
last night..It is good to have them back..The kids.
have missed seeing them..I know it was hard for them
to be away from Hollister..But it sounds like they
had a great time...Good for them...

I have lots to do today...The Bunny needs some
help dying those eggs...

Here comes Peter Cottontail,
Hopping down the Bunny Trail.....

Thursday, March 24, 2005 10:43 AM CST

Holy Thursday.....The next few days are truly days to
reflect.
I have more time to reflect than most people. I know
that I still don't have any of it figured out!

Hollister continues with the headaches, he said this
morning that he really hopes the new medicine works..
He looks tired and pale..He had a shortened therapy
day today... He is napping right now.. He is very
excited...Nurse Bonnie is coming to visit this afternoon.

Yesterday was quite an eventful day for us, especially
Harrison. He had his soccer in the morning..lunch and
his friend Brody came to play..They weren't outside
10 minutes and he came in crying. He had slipped and
landed on his right ring finger...
Being the tough love kind of mom that I am...ha
I gave him and ice bag and an advil...He came back about
10 minutes later...he was still sobbing..I took a closer
look at the finger..It didn't look good. It was going
in a different direction than the rest..This was around
4pm..Dick Brody(the friend) and I took poor little
Harrison to the ER...
As usual He was a dirty little pig from soccer camp and
playing outdoors...My new moto is to have everyone
dressed and cleaned perfectly at all times..We have
never been to the ER when were looked good! hahaha

An Orthopedic surgeon, (that unfortunately...I didn't
know) came to see the finger.. It was broken through the
joint and growth plate..Not a good thing..So, poor little
Harrison got a digital block..which I must say HURT!!!!
and the Doctor set the finger and put a large splint on
it...Wow, that was a tough couple of hours for Harrison..
He was very teary through the night.. He had a lot of
pain..I hate to imagine how bad it hurts..Tylenol #3 is
a good thing.He is afraid he is going miss all of
baseball and soccer...I am sure it feels like the end
of the world when one is 10!
He asked my why God hated us so much...(This was about
1AM this morning...must mention not my best time to
problem solve..)Why would God let all these horrible
things continue to happen to us..Hollister is sick,
Hillaree broke her arm last year, and now I have this!!

WOW pretty deep for a 10 year old. I reassured him that
because he broke his finger, this was not a sign that
God hated us. Instead, it was an accident that happened
while he was playing. I reminded him that God was there
with him...the whole time. Because of God's good works
there are smart people who can provide comfort and
help you feel better...That we have the ability to pray
and ask God for healing...
The tylenol three was making him drowsy..But now I was
wide awake, left to relect on the questions of the
child!

Tuesday, March 22, 2005 3:12 PM CST

SPRING BREAK!!!!!

No School. How much better can that be. No sleeping
in for us. Hollister continues with therapy rain or
shine. Harrison is doing a soccer camp in the mornings
and Hillaree is volunteeing at the Ramsey Home. Everyone
seems so busy...

Hollister is struggling with Headaches. He even asked for
tylenol on Sunday...nothing seems to help.. It has
started to mess up his sleeping at night. This makes him
even more tired. We continue live between that rock
and hard place...that we know as home...

Today, on the way out of Blank from therapy...
Hollister fell! He fell hard and hit his head
very hard on a concrete pole. He started crying...
he never cries...He said it really hurt bad! I got him
to the car and got him home, in bed.. He isn't sleeping
just resting. He said his headache is really bad!
I am hopeful, he can get some rest. He is exhausted!
I really want this headache to start to lesson. It is
time. He has had it since August...too long.

I will have to wait and see what the rest of the day
will bring...Never a dull moment..

On the upside...Hollister is trying very hard. He
works very hard during therapy. Even on days when
he struggles to find words or the energy to work out..
He continues to be creative and argumenitive with the
therapists.. That is all good. He likes to make each of
their jobs a little more difficult..He continues to be
a challenge..Remember, anyone can work with the easy
patients!!!

We are looking forward to Easter. A holiday at home..
that will be awesome...There is no greater place
to celebrate than in your own home with loved ones and
chocolate bunnies..Not to mention colored eggs and
Marshmallow rabbits!

Sunday, March 20, 2005 2:35 PM CST

!!!!!!!!!!SPRING HAS SPRUNG!!!!!!!!!!

That is music to our ears..Winter is now over. I
hope mother nature hears that. The tulips are up
and wanting warmth and sunshine...so do I

We surived another week. The new medicine is
making Hollister very tired..We will have to wait 4-6
weeks to know if it is enough to help with the headaches!
Keep your fingers crossed.

No seizures this week.yeah!!! Still working on the
right side..Keep praying that Rightie will feel again..
I keep telling him it will happen. Spring is the
season of renewal...

We have watched a lot of Basketball since Thursday.
It is MAD...The Cyclones looked awesome of Friday as
they beat the Gophers from up north.. Hollister
was almost animated he was so excited. His therapy was
watching the game in the cafeteria at Methodist...
Doesn't look good for the Cyclones against NC....
As Hollister would say, "that's all I have to say
about that..."

Hollister was up early to go to 7:30 Mass..He did
better than I hoped.. He stayed awake the whole time.
But...He was back asleep in bed 2 minutes after we got home..
He got up again at 11:00...He does remember going to Mass...

During this week of Holy week, I am reminded of all
that Jesus went through for us. I am so grateful to have
my faith to help me on this unchosen journey. There are
times of saddness and self pity.(mine)..There are also
times when I am overwhelmed with all that is good and
right in the world..I watch Hollister and I am so touched
by his efforts.. He told me today at lunch he is
thankful that I am such a good sandwich maker..(Hard
salami and pepperoni...Dry)...and I take such good care
of him..He knows that he is here because I take care of
him...He then put his dish in the dishwasher with
minimal assistance...Wow....That may be some kind of
record an 18 year old MALE knew where the dishwasher was,
and what to do!!haha

On this Palm Sunday, I am thankful for the support that
we recieve from all of you.. You are all very good at
renewing us in everyway that is good and right!

Thursday, March 17, 2005 10:36 AM CST

Happy St.Patrick's Day....To all my Irish Brothers....
Today, more than any day Dick's Dad is missed. He
loved his parade in Algona. Hollister loved marching
in it. He has had the honor of carrying his Grandpa
Ed's Irish Flag the last few years..This year it
didn't work out. He is disappointed not to be in
Algona going down mainstreet with the flag!
Today instead, he got to do therapy..It is Thursday,
it started at 8 am sharp!!!!
Tonight is the Science Fair at school....No Green
beer for us...

Our trip to Rochester yesterday was about the
same as our trip on Friday. Not exactly the news
we were looking for. It is hard to see Hollister's
Doctors look so sad. We had time to stop at St.Mary's
to see some of the folks that took such good care of
Hollister. We stopped by the PICU, it was nice
to see some of the nurse's that we spent 12 long
days with us. They were very happy to see Hollister.
They had never seen him looking so good. They have
taken care of him when he has been so sick....and
asleep!
We also stopped in at the Rehab unit...We got to
see Deb and Michelle..They were happy also..Wanted
Hollister to do a little therapy while he was there...
We also got to see Marcia and Jack(the therapy dog)..
Hollister loved Jack..Maryanne assured Hollister
she could find enough snow to put down his shirt!
He laughed at the thought of the day she brought
snow into his room!
We headed to the floor to see the Child life team and
Stacy and Warren the wonderful pediatric Chaplins that
spent so much time with me..They had such an impact
on our stay there...Happy to visit..Glad to come
home!

Hollister is so tired from the new medicine started
this week for his headaches.. He has no energy. He
wants to sleep all the time. No one has any idea
if and when the right side will come back. It is
assumed that the brain still has swelling and is part
of the problem. He takes so much medicaiton, I wish
there were a magic potion to reduce brain swelling..
(I thought I saw that pill at Walgreens once..haha)
We are trying to figure it all out. Unfortunetly for Hollister,
everyone is trying to figure it out.
He has the best Doctors..I feel very fortunate about
that. I can tell how much it bothers them to see him deteriorate..
I really hate that word...
No one has any answers on what lies ahead. I depend on
what they know. When they are puzzled, I feel
helpless. I don't know much about his illness at the
cellular/bichemical level....
BUT, I know Hollister!
I am very lucky!!I get to spend so much time with him!
I see the progress and the good things everyday.
I see how hard he works to accomplish the
smallest things. He is proud and happy. I see his
beautiful smile and hear his contagious laugh even
when I don't think it is funny..I get to be reminded
by his actions all day, that he truly is 18. He is an
18 year old with a head injury....nothing escapes...HAHA

I am very lucky, I have been given the gift of time!

Happy St.Patricks day from the O'Farrells...

Hopefully, tomorrow none of you will have the
dreaded Shamrock shake FLU!!!!

Tomorrow...Go Cyclones.....

Monday, March 14, 2005 9:51 PM CST

A lot has happend since Hollister's appointment
in Rochester.. We made it up and back without
any difficulty.. When we were leaving Rochester
at 5pm on Friday. It was snowing those gigantic
snowflakes. They were so beautiful..I was very
happy that we drove out of the snow by the time
we got to Austin..

The appointments in Rochester did not go exactly
how I had hoped.. We continue to wait for the lab work....
Hollister's first appointment was
with Dr. Mack, pediatric neurologist. He has taken
care of Hollister 3 1/2 years. We really like
him and respect him a lot..He was taken back
that Hollister hasn't made as much progress
as he had hoped. He was very concerned that
his right side is still numb. Hollister's continued Headache is
also of great concern for him..He wants
to try him on a new medicine..That I am not very
excited about..I also wanted to wean him off the
Dilantin(seizure med)...but that was also a NO..
I was hoping for a MRI...maybe in three months..
He didn't think it would show us anything new..
Might even disappoint us. Dr. Mack looked very sad
when he saw Hollister..That made me very sad.....

Dr. Whiteman...geneticist...translates...genius....
Hollister is Dr. Whiteman's pride and joy MELAS patient.
He is very proud of all of his accomplishments..
He is also concerned about Hollister..But he as
usual is very optimistic... He thinks that Hollister's
"little" bout with CRUD(or FLU) was much worse than
I imagined. He thinks that his lack of progress is
that he is recovering from another setback! He conitues
to be ever hopeful, that Hollister will be the one..
that all of his hard work will make a differenc for.
He did make a couple medication changes and are waiting
the lab work!
Thank God for Dr. Whiteman..We continue to have HOPE!!!

Continue to think and pray for Hollister. We will be
making another trip to the Mayo Clinic on Wednesday..
Hollister will miss the boys playing in the state
tournament..We are confident they will win, so Hollister
can take his place in the student section on Friday...
We will be seeing his Rehab Doctor and our favorite
gastroenterologist...We will have the Feeding Tube
debate...NO NO NO

Hollister had a small birthday celebration on
Saturday night.. It was at Hooter's...Shocked..I
know...He had a great time. Everyone there was
very nice to him..We ordered and ate 180 wings.....
(I am not going to tell you how many pitchers of
beer we drank....)Hollister ate 23 wings..It is a
new personal record..We all had fun. Hollister had
a smile on his face the entire time..We broadened
the dining experience for several people that night.
It was HOOTERIFIC!!!!!

Hollister woke up Sunday morning with a GI Disturbance,
Too many Hooter wings..HAHA He slept all day..
He did make it to afternoon Mass..came home and slept
some more...around 6pm he had three seizures..It was
very weird.. Most of it was left sided..It scared him..
I wasn't sure what was going to happend. He fell a sleep,
I watched him very close..He didn't have any more..
He continues to be tired and is sleeping a lot more.
His energy is low. He uses all he has at therapy and
school...

Hollister is happy about ISU making the NCAA..He is
pumped...

Thanks to everyone who sent Hollister birthday
wishes.. It is hard for me to think that he is really
18. I really must have been young when I had him..HA
He signed up for the Selective Service today.. He
thought that was pretty stupid... He said, I can't go
War..I have a disease..For once..having a disease
sounded pretty good.....
Good luck Bad luck...Who knows......

Thursday, March 10, 2005 10:24 PM CST

Wow, Hollister is 18!!!!

He had a great Birthday.. The Hooter's wings were
a hit..Carrie was there to wish him happy birthday..
We rounded the day out with Harrison's hockey game.
Too bad, they got beat..He ate Pizza for supper and
enjoyed a few gifts..He was worried about
turning 18, as you have to pay taxes when
you are an adult..He has made it 1 whole day,
and paid no taxes!!!!

It even continued into today. Our Friends
at Blank Hospital didn't forget!! There were ballons
and his favorite pie...Lemon... I think he may have
even had a break in the therapy department....
Hollister recieved so many great cards and cool
gifts...Thank you Thank you Thank you...
(I know the most painful gift purchased was by
Nancy(a Hawkeye fan) in the Dowling Office..She
purchased Hollister a Cyclone Hat!!!!!)
Hollister has a great group of supporters..who never
forget..Thank you....You all are amazing!!!

Hollister is Thankful tonight for ISU's big victory
over Baylor...Go Cyclones...Tomorrow is another day..
Texas Tech.....More Basketball..How much more of
March maddnes I can I take???? I don't know!!!!

The Dowling Girls play tomorrow at 1pm...Hollister
unfortunately won't be there... He has appointments
at the Mayo Clinic..He is very unhappy about this..
If any of you go to the game tomorrow cheer extra
loud for him..and wear Maroon!!!oh yeah and eat some
cheese fries for me!!!!

His appointments are with Dr. Mack his neurologists and
Dr.Whiteman his geneticist..I am hopeful that we
will get some answers on the right side and the
numbness. I am anxious for information. I would
like to eliminate one or two of the seizure meds.
I hate how much he is taking..

Thanks for all the Birthday wishes and good thoughts.
It is a happy and sad time for me...18 one of the
big milestone birthdays..The great achievement of the
year is that he is still here. I know that and I am
thankful for the gift of time. Each day with him,
is better than the day before!!I have truly learned
to cherish each and every moment.

Think of us early.. We are leaving for Rochester at
5:45..aahhhh... Way too early...

Please Keep Hollister in your thoughts and prayers
as we look for continued signs of HOPE.

Wednesday, March 9, 2005 11:45 AM CST

Happy Birthday Hollister!!!!!!!18

Hollister's Birthday couldn't have started any
better...

Last night the Dowling boys basketball team made
it to the State Tournament next week..How exciting
is that..

This morning the Dowling Girls Basketball team won
it's first game at the State Basketball Tournament!!!

The Iowa State Women won yesterday.. and the Iowa
State Men play tomorrow.. Go State...
(Don't know how much more basketball I can take!!!)

We are headed to Hooter's for lunch..Seems fitting for
an 18 year old male on his birthday!!!!

I will write more later...Hollister also has
to go to school.. His class is 2:10.. They are
having a surprise party at school for him..Shh...
Don't tell..

Tuesday, March 8, 2005 9:02 AM CST

ONE big day until the Birthday. I can't believe
he is going to be 18. He isn't very excited
about it. I keep reminding him of all the great
birthday's he has had..Like his 5th birthday, he
woke up with the Chicken Pox, now that was a great
birthday.

We survived a busy weekend. It helped that the
weather was so nice. It was 69 degree's on Sunday.
We even got Hollister outside on Sunday....Aunt
Terry came and took Holllister for a ride and to a
park. It was nice for him to get away from me, only for
a few hours. He was tired when they came back. I am not
sure who was more tired Hollister or Hooch Dog. He played
outside all day Sunday...They both looked a little
rough on Monday morning..ha

We are trying all we can to get extra calories and
liquids him. This is proving to be difficult as he
never has been a big eater. He is trying the carnation
instant breakfast with chocolate milk with his morning
pills.. Seems to be tolerating it OK.

He is having some problems with his vision. Makes me
a little nervous to wonder what is going on in the
occipital lobes in that brain...Sometimes, it seems that
he isn't seeing at all. He is relying on me quite
a bit...to be his eyes..We weren't to sure about his
hearing yesterday morning. Then, he finally said,
I don't think these are working right. I replaced the batteries
in his hearing aids and his hearing got better.
Amy(his Speech Pathologist) and I were ready to choke
him.. He was laughing at us..

I have a gripe that I must mention. WHAT IS WRONG WITH
PEOPLE!!!! I am so tired of people gawking and making
comments about him. I am continually amazed at how
insensitive people can be. These are grown adults....
generally people old enough to know better. They
assume he is an adolescent, that gives them the right to
judge his behavior. He is drunk, he is on something,
or he is trouble. His pants are baggy, he doesn't make
eye contact and he bumps into a lot of things..Well,
I have news for all you overjudging people of this
world..STOP!!! I would like to remind them that he
has had 4 BIG strokes in the last 3 years and he
continues to stuggle. He works harder than most people
have the courage to do. Dealing with such mean spirited
people makes having a terminal illness a piece of cake..

I feel better getting that off my mind.. I know it is not
for any of you. But maybe, you will stop someone from doing
this to someone else. Because, I will be talking to
the rude people I see and remind them that God is judging them.

Thank you for all the notes and messages Hollister and
I both get so much encouragement from your words.
You all have made this much easier....

Speaking of Cake..Remember only 1 day to the big event!!!!!

Friday, March 4, 2005 9:14 AM CST

Wow, another Friday. Weigh in Day for Hollister.
he didn't have to weigh last Friday, he had been
too sick. I am sure it would have made no sense..
So, today is the day.. Hopefully, it will be where
he was two weeks ago...

He is still sleeping this morning. He doesn't have
anything until 1:00. Yesterday was one of those days
that tire him out. Thursdays start at 0800...with
therapy and school..and the end of the week. He is
energyless...Last night, Harrison had his school
program. It was very good. Hollister even enjoyed it.
I saw him smiling several times. It was great to see
and talk to so many people last night. I really enjoyed
it.
It is hard to sit in the church and watch all those
wonderful third, fourth, and fifth graders. They have
happy healthy lives a head of them. I remember
sitting there watching Hollister. Not ever
thinking how much life would change and how
quickly. Hollister was a happy healthy child in
those years.Last night I watched Harrison and tried
to take it all in. Knowing that nothing can be taken
for granted.

It was the spring of 6th grade that Hollister had his
first seizure. It was a down hill spriral until his
diagnosis in the 9th grade. It is amamzing to me how
unforgiving time can be. One moment, one seizure, one
disease. No taking it back, not even on someone so young.
He has been fighting this for 6 long years.. No wonder
he is tired......

We have a busy weekend. Hillaree is swimming in the
conference swim meet tonight. This is her first year.
Hollister is going to the Dowling boys game tonight.
We are into some of the final games before the
tournament. He will be wearing maroon tonight..
NO ORANGE!!!! and Harrison
has soccer and hockey this weekend. There will be no
shortage of sporting activities..

Everyone needs to eat a big lunch and think heavy
thoughts about 1:00 for Hollister's big weigh in.. I
will post it later...

Hollister's weight to be exact is 111.9
(112)pounds..I expected it to drop, he has been flu-like for
more than 1 week.
He will gain it back!!!

Wednesday, March 2, 2005 8:37 AM CST

Yeah, our morning with nothing to do.. Hollister is
still sleeping. I like to let him sleep until
he wakes up.
I reminded Hollister that his Birthday was only a
few short days away. He will be 18 on the 9th...
He said yesterday morning when I reminded him, that
he really wasn't interested in being an adult. I told
him, I really wasn't either. He didn't believe me.
But, you've always been the Mom.. Oh, I could tell him
so much....I reminded him the only boy who didn't
grow up was Peter Pan...and he didn't even live with
his mother...He wasn't interested in that.
When, I remind him that he should be trying to do
a few more things for himself..He just smiles
and says, I know you will always take care of me..
You're the Mom..
He does know me so well.
I try and imagine what our lives would be like if
he hadn't gotten sick. Would I be ready to let him
go. Would he be ready to go... Would he be a normal
teenager putting his friends first. I think about
what it would be like if he were driving, dating,
and doing normal 18 year old things.. Would we
argue and disagree on curfew and parties, and
grades... Hollister and I have always been very
close, would we still. Would he still want to have
"dates" with his Mom, or would that be too embarassing
now... I wonder.
In my own simple mind, Hollister would have been
a great "normal" kid. He would have had great friends.
He would be doing all the things a kid of 18 and only
2 months from Graduation. I am sure he would still
find time for his Mom..haha
When reality finally hits us, he is as normal as
Hollister can ever be. He is sick, but being sick
doesn't define him. He continues to work hard at
everything. He works hard at all the therapies and
school. He has come back from two other strokes, and
has maintained his grades to graduate on time. That
shows us what he is made of.
Hollister with his dry sense of humor, his love of
stupid movies, his being and extremly picky eater,
and being a die hard clyclones fan is as normal as
he can be.

To Jeff Carpenter, the orange sweatshirt
was an oversight. Hollister, I am sure didn't realize the
shirt was Valley Orange..He doesn't see very well at times. I am sure
if he knew he wore an orange
sweatshirt to a DCHS game..
He wouldn't have liked it...haha

Monday, February 28, 2005 9:22 PM CST

The kids didn't have school again today. They
are loving all the days off. Even if we didn't do
anything great.
Hollister had therapy this morning as ususal. He got up
with no problems. I am always thankful for this. I am
thankful today, that I noticed his shower chair could be
raised. This made it much easier for him and me. I was
quite impressed, that I finally noticed. Truly, it is
the small things in life that mean the most.

He is surviving the crud. I am proud of him for having
the strength to get over it. He has been sleeping a lot.
I am not sure how much energy he has. I think it is
taking a lot more for him to move around. He really
isn't interested in doing much. Not like the old
Hollister at all.
When he is awake, he is watching movies. He loves his
personal DVD player. He says all the time what a great
machine it is.

His appetite continues to be poor. We are trying lots
of his favorite foods. He will try and eat, but only
small amounts.. Then he will complain that his stomach
hurts. Not sure what that is all about.

Hollister continues to amaze me. He has enough courage
to get him through all he needs to do. I am amazed that
he wants to get up in the morning, knowing how rough
his day is.

We are all doing well at home. Hillaree and Harrison
have picked up where they left off. Hooch is even
starting to settle down..Dick is working and playing
broomball..And I continue to be a professional sitter.
This job is a lot tougher than one would think..ha
Fortunately, for me...I have had 31/2 years training.
I sit at Blank, lucky for me I have lots of friends
there. They come and break up my time. Usually, I talk
so much..That they have to chew their arms off to get
away.. It is kind of embarassing. haha It is a great
lobby to sit in. I see all kinds of interesting
people.
We continue too feel blessed that we have Hollister
and we are at home. He is truly a gift. Like a true
gift there are many layers to unwrap. Each layer that
is gently unwrapped shows us something so remarkable,
we can't wait to see what is next.

Thank you for being here with us. You all have been like
a gift to us also!

Friday, February 25, 2005 11:06 PM CST

Friday night, home from the basketball game.
Hollister is happy the boys won. It was close,
but you only need to win by one point. The girls
play tomorrow night. Hopefully, they can win also.

Hollister seems to be moving on from all the crud.
I am keeping my fingers crossed. Tomorrow we are
going to try and take all of his medications.. That
will be a challenge. I reminded him of that before he
went to bed..He was thrilled.
We did not weigh Hollister today. He has been too sick.
We didn't want to see, what we know. He has lost a few
pounds this week..We will weigh next Friday, after a week
of eating...
His therapies went well this week inspite of feeling
so bad. He continues to work hard. He speech therapy
is really moving forward. He is remembering a lot of
things..some good some bad... haha He is improving
a lot. I am happy with that. He is talking a lot more.
His physical condition is also improving. He is definetly
getting stronger. He is working on some fine motor and
visual skills also. This still varies a little. But
progress is being made.
We still have some major concerns with the right side.
He is bothered by it. The right arm doesn't participate
at all. He can't feel anything with it. They are really
starting to work on that. Trying to figure out exactly
what is going on. It has also affected the right leg and
foot. It is worrisome.
I am happy it is the weekend. The kids still have Monday
out of school. I like them being home.
Hollister loves Saturday mornings..no reason to get up.
He is just like every other teenager. He will sleep
until noon if we let him..

Enough about Hollister...

Thank you all for continuing to check on him. I am so
impressed by that. It is comforting to know so many
care. Thank you, for lightening our journey..

Thursday, February 24, 2005 8:51 PM CST

We continue to have the ups and downs.. Mostly up and
down to the bathroom.. Hollister yesterday had the
same GI disturbance that Harrison had last week.
It was a rough day. He didn't get any fluids or
medications in until last night. I worry when
he misses so many seizure medications. I wasn't
sure where he would end up. Fortunatly, for all involved
I generally don't panic.. remember I can do the
IV at home if I have too!!!
Today, He got up for the 8am therapy and did just
fine. He still looks a little rough, but eating
and drinking much better. I am hopeful that this
is the end of it.
The kids are out of school until Tuesday. Hillaree is
spending her time volunteering at a Nursing home.
Harrison, Hollister and I are spending our time
at therapy. Oh boy!!
Life certainly does not get easier. It does however
get more interesting as it goes on. When everything
as you know it no longer exists, you have to trust
someone, something, or God to figure out where you are.
Right now, we are in the figuring out where we are
and where we are going. It had gotten so routine
that Hollister was sick. We were adjusting to the
new life we got three and a half years ago. We were
living our lives, he was gaining independence,
there was talk of driving, and college.
Now, I don't know where we are. We can't leave him
alone, he has troubles with the activities of
daily living, and he is faced with a constant
headache. I am not sure how to handle our new life.
It is taking some time and adjustment for all of us.
It is unfortunate when you make these changes no one
can give you the directions.
I am confident that as time passes we too will reach
a level of comfort in this new life. I heard Harrison
talking to Hooch Dog tonight. He was comforting him,
as he thought he looked sad.(He was sad(the dog)
because he knocked an entire pan of bars off the
counter, and he didn't get any.)Harrison told
Hooch no matter what happened, Mom and Hollister
are home forever. We are a family now..
Out of the mouth of babes..

Tuesday, February 22, 2005 8:33 PM CST

Teacher Conferences, two words that can put fear on
the face of every child. We just got home from
Hillaree and Harrison's. I continue to remind the
teachers who we are the parents of. I am continually
shocked and amazed at the nice things that are
said about our children. I can't wait to see who
they become. I hope that they continue to
utilize the gifts God has given them.

Hollister is doing surprisingly well. He has
tolerated the crud better than I had hoped.
He rested all day Saturday and Sunday. Sunday,
on top of feeling bad, he seemed so sad. It bothers
me to see him sad. At this time,I don't know what to
do for him. Monday morning, he was so tired. I don't
know for sure if he felt bad or was just plain exhausted.
He did not go to therapy. I spared our friends at
Blank, Mr. Crabby. He got up aroung 11:00 and agreed
to a shower and even some lunch. Before you knew it,
it was time to go to school.
Thank God, he has Dowling to go to. It gives him
some purpose in life. He had to write a paper on
death and dignity. One question was if you found
out you had less than one year to live..what would
you do..He said...been there done that.. I couldn't
argue with him..The next question was how would you
treat family and friends who you didn't get along with...
He said, it wouldn't change. Don't like me, because I
am dying..you should have liked me when I was living...

The third question was how would your relationship
with God change. He actually, had an answer for this one.
He said, his relationship with God would continue to
be strong. He reminded me, that God had been there
for him...and had brought him through so much. I said
wouldn't you be Angry if you knew you had less than
1 year to live.. I told him I would. I would feel so
cheated.. Anger... He said no, God helped him through
where I had been. God would continue to be with me.
His relationship with God contiues, stronger and more
faithful than the weak..(me)

A very wise Child Life Specialists at Blank Children's
Hospital taught me a valued lesson. A few months
back, she was listening to me talk..I was feeling very
sad about all the sick kids..including Hollister.
There are so many kids with Cytstic Fibrosis(CF),
muscular dystropy,and cancer. Many of these kids die
long before they should. I was talking about dreams
of driving, highschool, college, families...etc.
I got teary eyed thinking of all that is missed. She
has learned through her years of working with sick kids
and many who have died..That the lost dreams are those
of the parents. Kids don't look or plan that far
into the future. They live each day as they need to.
They live one test, one blood draw, and one meal at
a time.

I am the parent of three kids..known for years
as the naughty Farrell kids. I have wonderful
dreams and futures planned for all of them.
(included in each dream is that they will all
want to take care of me when I am old...HA HA)

A very happy congratulations to Hollister's OT,
Michelle and her husband Jason. They have a little
dream of thier own.."Baby Hollis" named Bryson John.
was born last night. He is an angel at 91/2 pounds...
Hollister immediately cheered and assumed he wouldn't
have OT for 12 weeks.. Wrong..everyone is happy to
fill in, continue the torture!!!

Saturday, February 19, 2005 10:18 AM CST

NEW PICTURES of the Winter Formal...
He is very private with his thoughts. I have
not gotten a lot of information from him about
how much fun he had. I am hearing bits and pieces
from the school. It sounds like it was a great
time.
As Forest Gump would say, "And, that's all I have to
say about that!"

Hollister finished his week out on a big note,
his weigh in, was at a 3 1/2 pound weight gain.
Yeah, we celebrated.. His therapists and I were
all so excited. That is huge. Most of us spend
our entire adult life trying to lose, and we are
celebrating a gain.. Seems wrong.. Happy, but wrong!

Hollister did indeed make it to the Basketball
game last night. That is a high light of his week.
He stands ever so proudly in the student section.
The kids are always watchful to make sure he isn't
knocked over. I am so touched by how they have
accepted and care for.
His vision is still a concern. Last night at the
game, the officiating was bad. Hollister, when he
got in the car never said one word about how
unfair some of the calls were. Dick and I both
said something to Hollister. He said, I never noticed
For any of us, who know Hollister...That is a problem.
He likes to point out directly, when something isn't
right. Especially, when it involves his beloved
Dowling!
I hate to say, but we were right. After we got home,
he was sick. I fear he may be getting the flu or
respiratory crud like the rest of the world. He had
a very restless night. I will be keeping a close eye
on him. Those aspirations in the fall weakened his
lungs. He has been running the temp on and off.
Since his diagnosis three years ago, we have
avoided most of the crud..I am certain this will
pass without providing a lot of problems for Hollister.

Another weekend comes and we are at home. This is
all good. It is time to start cleaning and working
on projects.. Hillaree is babysitting and Harrison
has indoor soccer. The one thing I have learned
in the last 3 1/2 years is that life does indeed move
on. It is not designed to stay the same. Hard as
it is to believe somedays...even our lives continue.
When Hollister got sick, I wanted everything to
stop.. My life had stopped, couldn't everyone see
that...It seemed so easy for everyone..Slowly over
time, we are all reminded that spring will
follow winter, and summer and fall will come....Life goes on.....

Thursday, February 17, 2005 11:41 AM CST

Thursday Already...I am not sure where the time
is going.

We did indeed make it to the Dentist on time
yesterday. 0800 for three appointments. We were
7 minutes early. I asked them to make a note
of that somewhere..Importantly, no cavities.
That makes a Mom proud.

No therapy yesterday, Hollister did make it to
Dowling. He came home with homework. He is already
worried about getting it done.
Harrison did not make it school. He continues with
the GI disturbance.

Today, we are finished with three hours of therapy.
There was no falling in the mud today. I walked with
Hollister both in and out.
Hollister and Harrison(who is home again) are both
napping. Hollister is tired. He had therapy at
0800 this morning. He did manage to find a time
to thumb wrestle while he was at Blank. He was
in the lobby, when Nurse Anna-Banana kicked his
thumb wrestling butt. Tomorrow he is sleeping in.
Therapy at 1pm..

1 pm is the designated weigh in. Hollister has
lost 7 pounds since we have been home. He gets
weighed every Friday. He is still having some
difficulties with food and all of his medications.
He is trying to eat more this week. But, he is
not a snacker.(He worries about homework and is
not a snacker, I fear we may not be related at all!!!)
Good thoughts tomorrow as he gets on the scale!!!!

Hollister continues with good days and bad days.
The headaches are becoming more bothersome. I am
trying to decide if the headaches and vomiting are
related. Hollister also has been having trouble
with his vision again. It seems to be worse in
the morning and night. He is having a harder
time getting around.
On the positive note, Hollister's mind is sharp.
he is remembering a lot. He is talking about when
he was so sick. I am shocked at the details. He
reminded a nurse about trying an IV in his foot,
we never thought he would remember that...The young
mind is an awesome tool. I am amazed with the amount
of swelling in his brain that he can function,
let alone remember.

I am overwhelmed by the outpuring on this site.
I never imagined that one 17 year old boy could
touch so many lives.

The old saying....

If God brings you to it,
He will bring you through it.

I know exactly what he means now, without all of
you, this would be very difficult to get through.

Tuesday, February 15, 2005 10:23 PM CST

Happy Birthday to Dick....I never realized how much
older he is than I am. He loved all
the great cards he got.

I had the Blank Children's Hospital Family
Advisory Council tonight. I just want to say
thanks to everyone in the group who has
continued to support Hollister and I. It is
nice to know so many care.

Hollister had a full morning of therapy. Harrison
was with us as he had a GI upset in the night..
Funny thing happened on the way into the building...
Harrison and Hollister get out of the van and headed
into the building without me. I am about 20 feet
behind them. Instead of walking on the sidewalk...
Harrison who is the eyes of the group..Takes
Hollister to the curb and forgets to tell him..
He is off balance as he steps up...and trips on the
only remaining pile of snow in the Des Moines area.
It is small..but big enough to cause a problem..
Hollister falls into the not frozen MUDDY ground...
His right hand, that he can't feel..gets under him
and he can't get up.. Harrison is now trying to
help and looking for me..before making it to a
standing position...Hollister falls again..He is
covered with mud.. We were trying not to laugh.
But, it had to look pretty funny.
We make it into Blank, get Hollister cleaned up.
He is yelling at me, wondering why I didn't leave
Harrison at home.. This wouldn't have happened
if he had been at home. You wouldn't have walked
me in the mud.... This is true. He wasn't hurt..
His pride was damaged a little. He walked out with
me on the sidewalk!

I later asked Harrison why they didn't take the
sidewalk(which was right next to them..) His answer..
I DON'T KNOW.... I forgot he couldn't see.
Needless to say, there is more laundry to be done.

Hollister did not make it to Dowling today for his
class. He had a killer headache and had to lay down.
I knew it was bad when he didn't want to go to school.
He hasn't moved much tonight. He was able to listen
to the ballgame on the radio..Which was very loud,
now the rest of us have the headache!!ha

Hollister has a dentist appointment at 8am. That
should be interesting. He hasn't worn his retainer
once.. If you read this Dr. Wilson..We are sorry.
But, in his defense he has been kind of busy.
He has had some issues..But, we didn't lose it
either.

Hollister is making great strides. I have never
know anyone who wants to achieve his goals
so badly. I am amazed that he is so determined.
The harder and tougher things get, the harder and
tougher he is. I appreciate that. He needs no
motivation other than his own private goals.
He wants to graduate and walk across that stage.
I on the other hand am a known quiter.. The minute
things get tough, I am on the sidelines. Usually,
reminding everyone that it is tough and impossibe...
that is why I have quit. Thank GOD Hollister has
endurance and enough strength to pull me with him.

We wish Dick a Happy Birthday. Here's to many more.
Hollister, Hillaree, Harrison and I thank Mr. Farrell
for all he does for us. He keeps this family going.

Monday, February 14, 2005 9:33 PM CST

Happy Valentines Day.
My first thought was, Hollister has never spent a
Valentines Day in the hospital. Amazing..We made
it through an actual Holiday without an
admission. I am proud..
We have spent Holy Thursday, Good Friday, Easter,
My Birthday, 4th of July, Labor Day, Halloween, Thanksgiving X2,
Christmas Eve and Day, New Years Eve and Day...
BUT NO VALENTINE'S DAY!!!

Today was definetly a Monday.. Therapy and school.
Hillaree had swimming and Harrison had a
hockey game.
Before the Hockey game, Dick and Hollister and
I went to meet some of the Friendly Sons of
St. Patricks. What an awesome group. They are
the folks who were responsible for our "Irish
you a Merry Christmas Tree" They also gave
each of the kids a very nice Christmas present.
That was above and beyond. We were invited, so they
could meet Hollister. It was great fun. Hollister
was ask to say a few words, and a few words they
were. He came up with THANK YOU. I guess to be
gracious, those are the two words that count.
We had a great time meeting so many of the fellow
Irish men. We were a month early for the BIG meeting.
We couldn't stop but think of Dick's dad Ed. He
was a true Irishman at heart and would have been
so proud of the support we have been given through
this extrordinary group.
By the end of the day, he is tired. He is ready
for bed. He reminded me tonight, that him being with
me was his gift to me. He knows I have a soft spot
for the happy ending. This included an unsolicited
hug and kiss. WOW, he certainly does have all the
right answers.
Tonight as all the boxes of Chocolates have been
opened and the good ones already eaten...And my
Valentines are all tucked in bed...
I am reminded of Hollister's Favorite
"Forest Gump" "Life is like a box of chocolates
you never know what's inside".. Hollister's life
certainly is like the box of chocolates..I never
would have guessed by looking at the outside that
he has a terminal illness...
But, I never would have dreamed when we dug into the
center that he was so sweet and strong and spiritual.
And like tasting and enjoying every piece,
every day is to be lived to the fullest.

Sunday, February 13, 2005 9:00 PM CST

Incredible!!!
The only word that can describe the weekend.

This weekend has been more than I ever dreamed.
First...It was Harrison's half birthday. This
is very important when you are 10 1/2. Cake and
all.

Hollister did indeed make it to the Winter
Formal. He looked awesome. He wore a black
tux with a silver vest and tie. He looked so
handsome. I couldn't believe it. I decided
that was the best $100 I have ever spent in
my entire life. Little did I know the best
was yet to come.
Yesterday morning, a beautiful girl called
Hollister and asked if he wanted to go with
their group. They had room for him to tag
along. So, he dumped me without any hesitation
at all. There I was as usual, all dressed up
and no place to go.
We met them at Mondo's where they were finishing
dinner. Hollister joined them. They let me take
some picures of the group. They got into the van,
and my "little boy" drove off. I am thankful for
an awesome group of kids who weren't afraid to
include Hollister. They didn't hesitate to help
him. They were all so gracious to include him.
When they left, I could see that he had a smile on
face like no other.
They even brought him home. That was nice. I am
sure it felt good for him to feel like part of
the group. He was still smiling when he came in the
door. He said he danced a lot. He didn't know why,
but cute girls kept wanting to dance with him.
He said, he had a hard time with a leg and arm
that don't work. I reminded him, that all of the
men I know dance like one of their arms and legs
don't work either. I told him it was really no big
deal. He had a great time. I am overwhelmed with
emotion as I write this. I was so sad, when he
missed homecoming last fall. I am reminded daily of
the things that he misses. He misses a whole
day of school because of all the therapy he needs.
He misses hanging out on the weekends because
he hasn't been at school to have buddies. He
misses the youth trips and retreats.
He misses driving and isn't sure he ever will.
BUT......
Last night he didn't miss the dance. I know it was
just another high school dance. For Hollister, it has
been the only high school dance. Last night was the
first time he has worn a tux as an adult. Last night
he went and had a good time without anyone telling
him to take it easy, be careful, don't do that.
Last night he went and was Hollister Richard Farrell
Senior at Dowling Catholic High School. He arrived
at the dance and left at the dance with a group of
really great kids..

And tonight as I write this, my heart is filled
JOY. I am so thankful Hollister got to have a
night like that. It was more than I ever dreamed
possible.

I wish I may, I wish I might, never ever forget
how he looked last night!

Friday, February 11, 2005 11:41 AM CST

WOW.....What a moring...
The Dowling Catholic High School pep assembly was
this morning at 0930. How exciting is that.
Nothing like a pep assembly first thing in the
moring. The Dowling Jazz Band was playing, and
they are very good. It is always a treat to hear
them. The chearleaders and dance squad performed
flawlessly. We heard about all the weekend
sporting events. Dowling is a busy place. Lots of
excitement.
I have been out of touch. Hollister and I have been
on our Club Med vacation for so long, I forgot how
much energy is in a High School at 0930. WOW....

The announcement for the King and Queen of the
Winter Formal was also announced. When Hollister's
name was read as a candidate, the gym went wild.
I have never been so touched by so much noise, they
were chanting HOLLISTER HOLLISTER HOLLISTER. If I
hadn't been in front of so many, I might have shed
a tear. I am so amazed by the high school. The
senior class has done such an awesome job of
making Hollister feel so connected.The student body,
the faculty and parents are so impressive. Everyone
has gone out of their way to include him. The fact
that these kids nominated Hollister tells us all that
they get it. I am so proud of all of them. I am
thankful for all that they have done to make
him a permanent part of their class. My biggest fear
has been that he will someday be a picture in the
yearbook, and no one will remember him at the class
reunion.

Hollister humbly accepted the King crown(a burger king
crown). He was smiling a smile I had never seen before.
He looked awesome. For a fleeting moment he was
just a high school kid. A Beautiful girl named
MacKenzie Rittler was crowned Queen. If Hollister
is lucky he may get to dance with her tomorrow night.

We are on our way to therapy..Not only is Hollister
the CHICKEN KING, now he is the WINTER FORMAL KING.
WOW, what a morning.....

Wednesday, February 9, 2005 6:10 PM CST

Hollister and I made it to Mass this morning.
He did a great job. He stayed awake and
everything. He even made it to get ashes and
then communion. It is a great start to the
lenten season. Hard to believe it is lent
already.

Last night, Hollister made it to the Dowling
Basketball games. He was so excited. They didn't
get home until 10:45, of course there was OT.
It was all good, as Dowling won. The Senior boys
were very helpful with Hollister. He had a great
time. I didn't go, I let Dick take him. I should
have gone to see that gigantic smile on his face.

His ability to recover is either truly amazing
or a gift from God. I am certain he has some
work or talent left unfinished. Day by Day, I can
notice things that are improving. His memory is
today, I beleive better than mine..He keeps saying
things like...Remember where or when or how...And I
have no idea what he is talking about. He continues
with a few more details and finally I get it. It is
spooky, that he is so right. He has been very sick
since August 14, and he still has recollection.

Today, there is talk of the winter formal.. We
are trying to talk him into going. He should go
for a little while. I will continue pushing the
idea..I will keep you posted.

After Mass today, I had a talk with a dear friend of
mine. We have done Bible study together for years.
She is a retired college professor and a widow.
She has had some health issues and recent deaths
of 3 siblings. She reminded me what a gift Hollister
is for me. She is amazed by his young spirit and
his abilities. She made me realize that we can't
worry about the tomorrows. I can't afford to miss
one day, one smile, or one opportunity with him.
When his important job that God has given him is
finished, there will be time for sorrow.
No sorrow for Hollister, he will be in heaven..
The sorrow will be self pity for the time lost.
As lent begins, I am reminded the God truly
holds him in the palm of his hands.. I told you
she is a smart lady...

I got back to the car, where Hollister was waiting.
I was feeling kind of weepy...And Hollister said...
"You Talk to much" I knew everything was going
to be OK.

Tuesday, February 8, 2005 8:14 AM CST

Wow, I can't believe it is February 8th already..
Today is FAT Tuesday...Another day to over eat...

Hollister is still sleeping this morning.
He is a typical teenager, he doesn't do
mornings.

Yesterday, his therapies went well. He even
cooperated with Amy. We were late, and that
doesn't sit well with him. I am not used
to how long it takes for me to get him ready
to go. So...this moring, I am going to get
him up earlier..We will see how he likes that!!

He went to Dowling yesterday for the last two
classes of the day. He thinks that is the
greatest. He loves to be there. He is more
alert each day. Last night, he realized he was
sitting in on two different classes. He was
thrilled.
He was also talking about the Winter Formal, and
maybe wanting to attend. I can't believe he may
want to go.. Today, we will find out all the
details. I think he should go..(Not sure I have
anything to wear!!!hahah)

He is so tired after therapy and school. He
can hardly get home before he falls asleep.
He is using a lot of energy during the day.
We were talking about what we might do during
the lenten season..Hollister joined in and said
he was going to try and eat more. We all agreed
that would be enough. It would be a true
sacrifice for someone who is still having so
much trouble and stomach pain.

The headaches continue at all times of the day.
Still not sure what to do. He wakes up with one
and goes to sleep with one. The best assessment
I can get, is that it is the whole head.
It has to be from the strokes. I guess
time will tell.

He is tougher and stronger than me. If had
his headache, this long.. I wouldn't be moving.

Today, as we all wish we were at Mardi Gras...
Make the most of Fat Tuesday at home.

Sunday, February 6, 2005 11:12 AM CST

Wow, what a busy weekend. First of all we have
been home 2 weeks in a row. This has not happened
since August. Amazing. I know the PICU at Blank,
is ready and waiting. The dog is even starting
to accept us again. Maybe, we are really home
to stay!!! Hollister is surprising us all
with his stamina.

Friday...THE WING OFF It started with a trip to
Hooters. As Fortune would have, the lovely Miss
Carrie was working. She immediately HUGGED
Hollister. He was given enough encouragement
for the contest. HIs vision appeared to be better,
he got in the car and said WOW she is beautiful
(Remember, he only goes there for the food...RIGHT)

100 wings, Blank Children's Hospital lobby....
Shawn against Hollister...Mono Y Mono....
They each had a bucket of 50 wings... Shawn Hot,
Hollister medium.. Those poor little chickens never
had a chance. It was drummie to drummie most
of the race. Hollister pulled out in the end and
ate 20 while his competitor only ate a wimpy 16.
It was a pretty intense atmosphere. There were
bones and crunchies,not to mention grease
flying everywhere. Everyone who went through
the lobby stopped by, residents, nurses,
therapists, friends, and staff..Everyone was
happy to see Hollister eating wings..
HOLLISTER IS THE ONE AND ONLY CHICKEN KING
IN DES MOINES!!!

Friday night, there was a New Years Eve party for
Hollister. It was a great time. Champagne and
everything.The company were awesome. It was nice
to go out. Hollister had fun, it is nice when
he laughs and smiles. He didn't eat much he
had a belly full of wings. We are very thankful
that we have such awesome friends who would
arrange a night like that for us. It was a happy
new year.

Hollister is tired today. He continues with the
Headaches. Not sure what to do. I am trying to
see if they are related with the continued
vomiting. I am hopeful about his vison. I am
very concerned with the hearing. He had an
audiogram last week. It had some very significant
changes. That made me very sad. I have had to
think about it for a week or so. Not sure what or
if he is hearing in the right ear. Hollister
has an awesome Audiologist who will re-check the
hearing in a few weeks. So keep the good thoughts.

Christmas is over, the tree is down. Where does the
time go....I hope you all surivied our extended
Holidays. We certainly did. We had a great time
thanks to all of you...

We are waiting for the snow. It has been raining
all moring. Hope all of you are safe and warm.
Thanks for your continued thoughts and prayers....

Thursday, February 3, 2005 9:29 PM CST

Yesterday was a day off for us. Hollister had NO
therapy or school. It was very nice. Hollister
watched movies, and you guessed it..I did laundy.
It was a pretty lazy day. The weather has been
so nice this week, I am afraid we are getting
spoiled.

No day off today, therapy at 8AM. We all know how
Hollister loves that. He did better than last
week. He worked hard today. The therapists are
noticing he is having better vision. He is finding
objects on both the right and left sides. I am
thrilled and as always optimistic with Mr. Farrell's
abilities.
He is stronger, he rode the bike for 8 minutes,
2 1/2 miles. WOW...I am so impressed by this.
He hates the bike almost as much as he hates the
stretching that has to be done. I am constantly
reminded this is a muscular dystrophy..Use it or
lose it!
He did make it to Dowling also. He is anxious
to learn. It was a very full day. He is
exhausted when he gets home.A nap is always
in order.. That and changing clothes...5 times
today to be exact. It wasn't this bad when
he was a baby.. Hence...the laundry pile up!!!!

He is suffering from the terrible headache again
today. It breaks my heart to know how bad it
hurts him. He has not had any tylenol or advil
since we got home. We are trying other methods
for relief..I was trying to get the tyleong and advil
out of his system...But, unfortunatley, tonight
it was so bad, I had to give him a tylenol #3.
I don't think it helped much. I am trying to
learn what helps him the best. I am not sure
where the headache is coming from, is it the
stroke, swelling, or the brain getting better.

Now for the meat of the note..Hollister ate Hooter's
wings for supper. Our friend Pat, called and offered
to bring some wings...How can you refuse..Hollister
immediately woke up from his nap HUNGRY!!!!First time
in months...he was HUNGRY!!!! He ate 10 wings!!! not
bad for the first wings since November 27, 2004.
He said they tasted awesome!!!

This has inspired him to challenge Shawn(Chicken
king formely known as Speech Patholgist)to a DUEL.
Tomorrow (during therapy) there will be a WING-OFF
at 1pm in the Blank Children's lobby..
Be there of be square.
Shawn has a record of 10 wings...
Hollister has a record of 22 wings..
Who will be the crowed Chicken King.....

Tune in tomorrow for the Adventures of
Chicken Man..He's everywhere, He's everywhere!!!!

Tuesday, February 1, 2005 3:39 PM CST

We all survived Christmas. The kids went back to
school yesterday as planned. They were trying
to get two more weeks of vaction. No go.....
Not even a snow day.

There is already talk of a big New Years Party
this weekend. I doubt if I could stay up
until midnight. I might try to call Dick
Clark.. He is out of the hospital, too.

Hollister went to all therapies yesterday as well.
He was quite animated with Amy. He wanted to
argue about everything and work very little.
Today, went a little better. He is remembering
a lot. This is not always good. It brings out
the very stubborn Irish/German boy....

Hollister had his picture taken at school
yesterday for the Winter Formal King. He looked
very handsome. I was wishing I was 17 and not
his mother....

His vision seems to be improving a little at
a time. He loves the personal DVD player, he
received for Christmas. He is watching movies
again. He is so happy. He is watching all of the
movies, he recieved for Christmas. He is laughing
at a movie as I write this.

I am so impressed with how hard Hollister works
at regaining lost abilities. Not a day or moment
goes by that he isn't reminded of what has been
lost or missed. He wants rightie to work in the
worst way. He is patient, he even lets me help
him eat when we go for lunch. It takes a big
man to let your mother help feed you in a
restaurant.(Trying to feed him the soup may have
been a little too much..ha) We don't even care
what others think..
By the grace of God, he has the power and will
not to give up.

Thank you to all who continue to visit Hollister's
site and write us messages. Each one continues
to lift us up. A lot of courage can be found
in the written word.

Sunday, January 30, 2005 12:02 AM CST

The Farrell Family Christmas was a success.
Our tree had maintained its beauty. We continue to
"Irish you a Merry Christmas".Its lights will glow for
a few more nights. ( I am sure the neighbors think we
are nuts!)

There were so many gifts under that tree. I have never
seen anything like that before. There are only 3 kids
that live here. The kids had a great time. The dog
hid in the other room. The paper, bows and boxes were
thrown through the air. There was no time to look at anything.
There were so many to open.
There was so much laughter and excitement, it was incredible.

Hollister was very much in the Christmas spirit. He
was so amazed by all of the his gifts. He opened each
and every gift, he liked to have someone explain what
it was and exactly how it looked. He was quite SHOCKED
thathe recieved and IOWA football t-shirt. He is sure
Amy must have had something to do with it.(look out Monday...)
He said, that he had opened so many gifts that even his good hand hurt.

We had a Christmas dinner with all of the tradtional favorites and
a few new ones. Hollister
enjoyed the meal and the lively
dinner conversation. Most of it was
started by him...He was very
animated throughout the evening.
We played a dice game after the
meal. Hollister played along, we made him use "rightie" to roll the dice. He didn't think it was right to have therapy on Christmas!!!

The Christmas, on January 29...Has truly been a Christmas to remember. To all of our Friends who went the extra
mile so the Hollister, Hilllaree, and Harrison could have so many dreams come true. You all are the gifts.
You have kept Dick and I going through so many difficult times. We are
very lucky to have a wonderful
support system us. We don't know how
we can ever say Thank you for
all that has been done.

I have no idea what the year holds for Hollister. He
has a long uphill battle in front of him. Today, I am
greatful for the memories of another Christmas with him.
I will treasure the thoughts and pictures of this day for
a lifetime. I will recall his laughter in my heart for
years to come. To all of you, I say THANK YOU!

Friday, January 28, 2005 5:14 AM CST

It's beginning to look a lot like Christmas. Tomorrow is the big day. We are trying very hard this week to find the Holiday spirit. The kids keep reminding me all of the things we do for Christmas...The meal has to be Christmas, monkey bread for breakfast, a birthday cake for Jesus..I am amazed by their spirit. Hillaree and Harrison have again taught me so much about life.
I hope the grocery store isn't crazy with Christmas shoppers today when I go...HA HA

Hollister is finishing out his first week of therapy at Blank. It is great for us to be there. Everyone has made us feel so loved. He is happy to be with old friends, even if it is more than he thinks he needs. He has more running through his mind than I have ever had. It has been so long since we have seen him.
He has so much to say. He is amazing. He is remembering
things from all year, like it were yesterday. He keeps telling us, that he only needs therapy on Tuesday, Thursday and Friday..only 3 hours.. Not four days aweek for 3 hours a day.
He is working very hard, headache and all. I am reminded every morning that this is a muscle disease, when he gets out of bed. He is so stiff and sore from all the work. He only complains for a moment.
He is trying so hard to fill in the gaps on all that he has missed. We are working hard to get him to eat enough.
He has no appetite, which is hard to believe. He is using
a lot of energy during the day. He has some work to do
to keep his Hooter's wing record...
He has made it to Dowling 3 afternoons this week. He loves that school. He is tired by the end of the day. The kids and Adults... have been so great to him. I can't imagine
how good he feels to be part of the school again.

On this busy Friday, may all of you find yourself remembering the Chrsitmas spirit. Remembering, how
precious the gift of the child is.

Tonight, May you also have visions of sugar plums dancing in your head..

Wednesday, January 26, 2005 9:12 AM CST

Hollister is still sleeping at this time. We are all trying to adjust to living in the same space. Things have changed
a lot since August.

Hollister continues to struggle with eating. He is not
hungry. Sunday and Monday his intake was very poor.
I try and remind him he needs to eat, but he is a very
stubborn child. Yesterday, he did eat lunch and a little
supper. He was able to take his glass to the sink in
the kitchen without any help.. He was very proud of
himself...I quickly reminded him, that tomorrow I would
show him the dishwasher!

He is working hard in all of the therapies. He has lots
of long term goals. First and fore most to graduate this
spring. He did make it to his religion class on Monday.
He loved it. He has concerns about keeping up. He wasn't
fond of using a wheelchair at school. He isn't strong
enough to walk that far. I keep reminding him, he didn't
get this weak in one day.

I haved learned that we have an awesome support system. We have been receiving meals at the house for months. I am grateful that the kids haven't been eating poptarts every night. The continued meals have given us all time to get
to know each other again. Obviously, we know a lot of good cooks. Thank You. We recieved cards, letters, and packages with everthing from giftcards for food, gas cards, even cash. I am overwhelmed by the generosity of all of you. I never dreamed that having a sick child could teach so much about life. There are answers to questions, I never thought I would ask. I have learned about the true goodnesses and kindnesses of humanity. I am so thankful for all that has been done. If it was something big or small, maybe a card or a message on this page. You have mad a difference for us and our journey.

Remember: Don't tell God how big your Storm is....
Tell your storm how big your God is.....

Monday, January 24, 2005 5:36 PM CST

Today was the first day of the rest of his life....

Hollister started therapy at Blank Hospital today.
It was great to be there. Hollister and I have a lot of wonderful friends there. It was great to see so many.
He worked very hard in therapy this morning. I am glad to
know he was giving everyone there a hard time. The words
he could find were coming out loud and clear. He is going
to be working very hard in speech therapy, occupational
therapy, and physical therapy. He has therapy everyday but Wednesdays. The more he improves, the more he will complain.

Hollister also went out to Dowling this afternoon for his religion class. Much to his dismay, he was out of dress code. He was very worried about a detention. He cracks me up. He had a great time seeing so many friends.
He loves that school. His time lost there is what he misses the most. He is very concerned with his loss of the right hand.( It will come back...we have great therapists....)
He worries about his writing skills..How will he do his homework. He wants to do well.

He is a sleep on the couch now. He is worn out and has a headache, even his eyes were hurting him. Harrison is at his hockey game, and Hillaree is at swimming. Everyone is so busy. Hooch dog is not getting to attached to us. I think it will take a couple weeks for him to know we are staying. He is very smart.

Hollister had a rough day yesterday. He wasn't quite himself. He seemed very sad. I was very happy to see him
so spunky this morning.

It is great to be home. I loved sleeping in a bed.
It so weird being here. There is so much to catch up
on. We are all trying to get used to being together. It will take some time. Thank God, we have been given more time.

Saturday, January 22, 2005 10:47 PM CST

HOME SWEET HOME

We got home around 7pm tonight. We pulled up to the house and we could see the Christmas tree. It was glowing through the windows. It was beautiful. It looked much like it did on the moring we left. We did notice, we were the only ones in the neighborhood, that had a Christmas tree.
It was great to be home.

Our stay at the Ronald McDonald house was very nice. We were able to have a room there the entire time. I felt, we have earned the right to a room. We have been eating happy meals for the last 17 years.. What a great place. They do so much to make everyone feel at home. It is a clean safe affordable place for families.
If you don't save your pop tabs, please start. It is a great way for them to get money. The RMH in Rochester makes $10,000 a year on pop tabs.

Hollister slept the entire trip home. He is exhausted. The cold weather takes so much out of him. His headaches have been very bad, nothing seems to help. His vision has also been very bad, seems to be worse with the headaches. He needs a lot of help getting around. It is going to be quite challenging for him (and me) to be home. I think it will take a few days to get adjusted.

I am trying to figure out his medications and the changes.I am thankful today, I am a nurse. The dosages on a some of the meds have changed. He is taking about 70 pills a day.
He does a good job swallowing them.

Hillaree and Harrison and Hooch are happy we are home.(I think) It is going to take some adjustment. We have been gone a long time. Dick and I figured it has been 19 weeks in the hospital since August 14.. As Hollister would say..."Too many".

Truly, there is no place like home......

Friday, January 21, 2005 5:06 PM CST

Hollister has left the building..he finally got to leave St. Mary's after 40 long days..(I wonder if Christ's 40 day's in the desert seemed this long....) He finished his threrapies, we said our goodbyes and we left....

However, we didn't get very far..We made it one block to be exact. The weather outside is frightful...We are at the Ronald Mc Donald House. The fire is so delightful. Let it Snow, let it snow, let it snow. Boy oh boy is it snowing and blowing.

Hollister worked very hard through out his stay. He is eating and drinking like a true Ferstl- Farrell. I have never seen anyone enjoy so little, so much.

He made it 8 minutes on the bike today. That is certainly not a world record, but for Hollister it seemed like one. Last week he couldn't have made it up on the bike, let alone peddle it. It won't be long before he is reminding us how much he hates the bike...

His word finding skills are still difficult. He has found enough words and energy to argue. I am hopeful this can be fixed. HA Ha!! He still has a long way to go, but the work that he has done in the last three weeks is amazing. I am ever hopeful for the future.

I will continue to update this page. There is so much about Hollister and his progress to share. This disease is progressive and not very darn nice. I feel we have gotten another opporitunity to learn and grow as we share our lives with Hollister. He is an amazing gift from God.

Dick and I have read every message(probably 4 or 5 times) and have drawn so much strength from all of you. We are amazed at how many of you are willing to share your thoughts and time with us. Knowing so many people care about Hollister is truly and inspiration to us. We feel God truly holds him in the palm of his hands..Because of all of your prayers and good thoughts.

As for our immediate future, we are at the Ronald Mc Donald House. We are waiting to see when the Blizzard of 05 will end.....

Thursday, January 20, 2005 10:54 PM CST

Hollister sleeps soundly, knowing this is the last night
in the Hospital. It has been a long time coming. We are ready to go home. I can't wait to sleep in a bed.

Hollister has amazed us all this week with his progress.
He enjoys proving us all wrong. Especially, the Doctors.
I am thankful that we are leaving without the permanent feeding tube. I know the issue will come up at our next appointment..Tonight I celebrate the small victory!

Hollister has had the good fortune to meet some great people here. Hollister's Doctors have been awesome. They are smart, caring, and kind. Hollister has been in three great Units. We have had great nurses..so many take the time to get to know us. They all have loved Hollister.
The therapist who have spent so much time in the last three weeks with Hollister have really inspired him. It has been fun for me to see his personality come out with each one of them.
Not to mention the wonderful childlife specialists who made sure Hollister was included. The Pastoral Care have had such an impact..They are great listeners..
Lets not forget..
Everyone else who helped us... I have worked in Hospitals for the last 20 years...It amazes me how many people work for the patient. It has been awesome.

Hollister and I have learned so much in the last five months. Hollister has learned how good a pepsi and McDonalds can taste. He has learned how great it is to remember the words you are trying so hard to say. To know your homework is waiting for you!
I have learned that you don't need much to live.
I can't imagine needing much more than I have tonight.
I have had the pleasure of a smile, a hug and an I love you. I have seen Hollister struggle with life and death. No matter how hard it is, life is extremely valuable..If it weren't he wouldn't fight so hard to stay here.
We have both learned, how good the Hooter's wings will taste when we get Home!!! A Bucket of 50!

Thursday, January 20, 2005 0:04 AM CST

Our day started bright and early. Our Patient Care Conference was at 0830. Hollister was showered and ready to go. That was very shocking. It is hard to believe he was up.
The conference didn't have any big surprises. The staff here has been awesome. We have been lucky to have a team who cares about Hollister and his future.
It was great to hear how prepared our team at Blank is.
It is nice to know that Hollister's care is ready and waiting for him.
The Social Worker here, said that the connections that Hollister has at Blank, the Blank School, and Dowling are unbelievable. She was quite impressed by everyone that she spoke with.
Hollister unfortuntely, had a rough day. He got sick at 0930 after his first therapy. No one can figure out why he is getting so sick. We are trying to eliminate all of the variables. He went to PT, and threw up three times while there. She was impressed, that he kept wanting to work in between. He doesn't want anything to get in the way of going home.
The Phenergren seems to help. He finally ate some Chinese food at supper time. He enjoyed it, and has been able to keep it down.
He has such determination. I wish I had half of it. He has been having a lot of the myoclonic jerks. These have made it difficult for him to stand and walk, tonight. He continues to try anyway. The right side still has some difficulties. He does remind me, that it doesn't feel right.

Today, when he was throwing up.. for 2 hours.. He felt so bad, he asked "Why me?"..I find it ironic, that he ask that when he is flu like. He doesn't ask that every day...knowing he has such a devasting disease...knowing how unfair it all seems.. knowing how much of his short life he has already missed... But, today when he was throwing up...he asks.."Why Me?"
There are always a 100 reasons why one would throw up. I didn't have one answer, I felt was good enough.
That Question has been in my mind for more than three years. Why Hollister? Why this fatal disease? Why now, why not when he is 90 years old...

I always think of one of my hero's...Mattie Stepanek..who also had mitochondrial myopathy..he died last June..He said he pondered that question many times.. Why me, Why do I have to have this illness... Then one day it came to him...
Why not me..

Tuesday, January 18, 2005 10:28 PM CST

Hollister started his day with a pudding thick glass of grape juice! This was the last glass of thickened juice!
He passed the video swallow test this morning. We came back from the test... He drank a PEPSI with crushed ice, it was the greatest drink...he has ever had! He could have done a commercial. He looked so happy. He had not had a drink since December 9. That is a long time. He had a huge smile on his face, pure enjoyment.
Lunch came shortly after that. He wanted the #7 from Mc Donalds. Luck would have it, there is one about 2 blocks from the Hospital. It was very cold, and I wished I had a hat..
I have never seen anyone enjoy a crispy chicken sandwich and fries as much as he did. He ate every last bite. It was one of the most amazing sights I have ever seen.
Tonight for supper, he ate three slices of pepperoni pizza. I don't think we will have to count his calories much longer. He has been talking, laughing, and arguing. He was very close to his old self.

Not long after the Chicken sandwich victory, he had Physical therapy(PT). He has quite the reputation at Blank for not wanting to ride the bicycle..Today, when Deb asked him... Not only did he agree to, because it had been a long time since he had done it.. He said, "this is kind of fun"
He appeared to be on some kind on Mc Donald's high...haha

He finished the box he was painting and sanding in Recreational therapy. It is very nice. He did a great job. He told me, he made it for me. I liked it very much..But, I think he is trying to get out of buying me a Christmas present. ha

Tomorrow morning is our Patient Care Conference. This is where they tell us what to expect during the discharge. It is going to be a challenge to take him home. He is still has a lot of work to do. I know we can do it.

He continues to struggle with the headache. I hate when I can see it in his eyes. He is much tougher than I, He never whines about it.

Please continue to think of and pray for Hollister. He will need extreme strength and faith to keep working.

Monday, January 17, 2005 10:11 PM CST

Another Monday!!!
Hopefully, this is the last Monday in the Hospital!!!

Therapy...Therapy...Therapy...
The name of the game this week is therapy.
Hollister is the player of the week.
He will have to prove his abilities all week for the end of the game on Friday. We are hoping to be playing on our home court next week with the hometown favorites!

The morning started out rough. He hit the showers (against his will) this morning with his shorts on. I might be on to something..showering with your clothes on is like washing your clothes.. 2 birds with one stone!!!! He was not happy..mostly he was mad at me!
Even with the rough start to the day, his therapies went
off without any problems. He can work hard through it
all. I am always amazed with what the therapists have to
say about Mr. Farrell....

He continues to have nausea. He was given the phenergren before his medications today. He has been able to keep them all down. He hasn't eaten anything today. He has only had enough thickened liquids to get the pills down. It has been a tough day.
Not eating hasn't helped the headache. It has been
uncontrolled all day. It seems to be some kind of vicious
cycle. Nausea, Headache, muscle pain... NO FUN!

The swallow study is at 10:00 am. I am very anxious for
this. I know he can swallow without difficulties. I just hope they agree with my opinion...ha ha If we all think of Hooter's wings at 10:00am, he will have the strength he needs!!!

This has been a long season for Hollister. He definetly deserves his time to shine, and this is it. He will feel better tomorrow! He needs to show these Minnesotan's what he is made of..Team Tough!

Sunday, January 16, 2005 11:09 PM CST

Today was a day of good news and bad news...
The Vikings lost..BIG..To some this could be good news or
bad news.

The good news includes...

It is still the weekend..limited therapy!
Hollister and Grandma were happy the Vikings lost!
Hollister had lots of company today. This makes him very happy. Dick and Harrison were here....Grandpa and Grandma are here..they brought me cookies and brownies.. this is very good news..Ben Feik and his mom Deb and his little brother came all this way for a visit..They brought Hollister a Hooter's bag and T-shirt from Florida..in the bag was a VIP pass for the Hooter's shoot out. It has Hollister's name and picture on it..That is very good news..

Hollister almost slept until noon. He loves that.
Hollister weighed almost 119 pounds.. WOW that is a record.
Hollister ate a good dinner and supper. (Hospital food)
Dick Harrison and I went to Mass this morning and it was less than 1 hour...
We watched football all day, on the big screen(Hollister can see it)
Hollister is in top thumbwrestling form
Hollister was laughing, joking, and talking
The NG tube is out....

The bad news...

Dick wasn't happy with how the Vikings played!
Dick and Harrison had to go home
I ate too many cookies and brownies
I was the loser in the thumbwars
We watched football all day... On the big screen! ha
The Dinner and Supper resurfaced about an hour ago.. and continue to resurface as we speak. He is very flu-like
The NG tube came out by accident, during the vomiting.
Not good news. Tomorrow we will find out what is to be done about this.
Not sure if there is new seizure activity. He is very shaky..

The day ends...Hollister is finally resting. I don't think there is anything left to vomit. The last 2 hours have produced another load of laundry! My work here never ends.

We will continue to have good and bad news.. I am certain our good news will always outweigh our bad news.
Tomorrow is a new day.

Saturday, January 15, 2005 0:00 AM CST

Hollister knows how much I like to do laundry. He had changed his clothes 4 times by 9:45 this morning. He had a some GI upset this morning. This meant another trip to the laundry room. I am sure people are beginning to wonder.

He ate enough calories again today, so there is no tube feeding again tonight. He is really trying to eat enough. He is still not able to drink.

This is a very busy unit. There are people doing therapy everywhere. I am amazed by the different needs of all the people. There is an elderly plopulation on the side of the hall by Hollister. He is in with the Stroke patients. What struck me tonight..these folks are someone's grandpas. That makes me sad so many are alone.

Hollister is doing a good job in his therapies. He got himself dressed this morning with very little assistance.(the first time..HA) He is starting to talk more and even initiate some conversations. He is still physically very weak. He is making steady progress. Today , he is stronger than last week. The goal by the time he goes home, is that he will be able to feed himself some finger foods. Mr. Rightie is still not cooperating. His mind is very sharp. When his lunch came today, he reminded me that he had eaten that three times this week. He was right!(I hate that!)

His vision still comes and goes. He was watching college Hockey on TV tonight with Dick and Harrison. His comments were appropriate. It was a large screen TV, I know he could see most of it. He loves hockey and wishes he could still play. He is very sad about the NHL lockout.

Hollister is more alert and awake. I love that his sense of humor is shining through. Everyone here has seen how funny he is. The best part is, that he doesn't know he is funny.
He is winning the hearts of all who work with him.

Saturday, January 15, 2005 0:00 AM CST

Thursday, January 13, 2005 11:15 PM CST

Today was a big day here in the unit... Hollister had continued therapy today. He is busy making a wooden box in recreational therapy. I can't wait to see it. He has been working very hard sanding it. He is doing very well. He is trying very hard. He is so tired at the end of the day.

We also did two loads of laundry, as I have stated earlier this is quite a task. I am not too proud, to push and shove my way to the washer. I am probably 30+ years younger than the folks I am beating to the machines. The fact that I can't remember to get it out when it is done, this makes me very unpopular here.

Tonight was pet therapy night. Hollister went down to the community room to meet the pets. There were three dogs there. It was fun to see them. It makes us homesick to see our dog Hooch. It also makes us think of the awesome therapy program at Blank. We miss Angie and Ben the Bunny.

The biggest news of the day is that Hollister is NOT having a nightly tube feed. This is so exciting. They are hoping that Hollister will be eating enough calories to do without the feeding. That truly is a step forward. He will probably have to have water through the tube during the day. It is hard to get 1200ml of pudding liquids a day. It is like drinking warm pudding. They certainly are not very thurst quenching.
They are going to repeat the swallow study next Tuesday. Hopefully, he will get to drink something.

The rehabilitation doctor watched Hollister in PT and OT this morning. She really hasn't seen Hollister up and moving since we had a check up with her in May. She seemed very concerned because of all the physical changes that have occured since May. First, I felt bad that she was talking about the deterioration. The more we talked, I realized that she also knows his strengths. She was talking in the present and so positive about what he can do.

Tonight, I feel that Hollister has accomplished so much. I have more faith` knowing others can see and appreciate his strength.

Wednesday, January 12, 2005 10:37 PM CST

New Photos....Exciting.....

When we brought Hollister to the ER on December 12, I never dreamed we would still be here. When this all started in August, I never would have dreamed that it would take 5 months for him to be better. I never dreamed that he would survive being intubated and on a respirator 3 times, in the last 5 months. I never dreamed he would lose his ability to swallow, talk, and walk by himself.
But....Today I dream of none of those things... I have big dreams of walking, talking, and swallowing. I dream of his laughter filling our hearts and I dream of going home. All of those dreams are coming true. Hollister is working hard on all of those things, and today they said we may come home on January 21! That is less than 9 days left here, for this I am thankful and dreaming.

Hollister has been working very hard. He is still weak and tires easily. He works so hard during his therapies, that he is exhausted.The right side is still weak and slugglish. His vision remains questionalbe. It is worse, when he is tired. He has a horrible headache. The neurologist is trying to figure out, what might help. Hopefully, something soon. His seizures seemed to be controlled. They are trying to figure out when to wean the Dilantin. That will make me nervous. We have done this at home. I don't like to make any changes.

Shawn, Hollister see's your bet...(20 wings) and raises it 10! Anyone can eat 20 wings......Your Chicken King title is only temporary...Maybe you are King Chicken!

Tuesday, January 11, 2005 10:42 PM CST

Another day has ended here in the rehabilitation unit, all is quiet. Hollister worked very hard today. I heard him talking with his OT on the way to therapy. They were talking about playing a game. He of course was telling her she was a loser. She was giving it back...She was teasing him about a wager... And then I heard it... I heard her ask Hollister if he had any MONEY....The standard Hollister response was next...I DON"T HAVE ANY MONEY.... I couldn't move I was laughing so hard. That is exactly what he tells Michelle(his OT at Blank) every Tuesday...No matter what they are talking about, going to movies, getting a snack... placing a wager on a game.. I can't, I DON"T HAVE ANY MONEY!(even if he has money in his pockets...) For a fleeting moment I thought we were at home, he wasn't in wheelchair, and he hadn't been sick. That is truly a glimpse of the old Hollister.

The talk of the permanent feeding tube surfaced again. He needs to get a lot of calories. He tries his best to eat what I put in front of him. We also tried to take some of his pills with applesauce. He did pretty good. I was surprised.I am anxious to get him eating on his own again....and "kickin' some Chicken"

On a side note, yes I did give up Ketchup for lent. I was living in the dorms.. Ketchup was a very important food group. It doesn't sound like a big deal...I actually gave it up for lent...extended to the end of school...extended through summer...extended for one whole year..

The headaches have gotten more intense. We have been wondering how bad it has been. It has been hard to know, with him not talking very much. Today, he has been able to tell us, that his head hurts bad. He is very tough, if he says something hurts..It would probably mame the rest of us. They are giving the tylenol and advil scheduled.

The right side is still giving him some difficulties. No one is sure how much he is feeling on that right side. He is moving it, not really using it, and doesn't feel with it. Hollister continues to be puzzle. No no has been able to figure him out. Someone tells him everyday, that he is puzzle and stumps them. I kind of like that he keeps them on their toes. No one will forget him.

I again am amazed at tough he is. He works hard with a headache. I am proud to be a co-member of Team Tough.

When he wakes up after being so sick.. I ask him if he is scared. And he says with faith and confidence, "No, what would I have to be afraid of". Then he asks me, "are you afraid". And I respond.."No, what would I have to be afraid of".. Knowing deep down, I was scared silly. I knew at that moment that he would always be taken care, I was afraid for myself... He has taught me so much.

Monday, January 10, 2005 11:01 PM CST

The start of another long week at St. Mary's Hospital. Hollister is doing a lot of therapy. The days are long and very tiring. Hollister's regular rehabilitaion Doctor is on service starting today. It was nice to see her. Not one word of the permanent feeding tube today. Yeah! She has known Hollis for more than three years and knows his baseline and history. She also reminded me, that it is taking a lot of his energy just to sit in the chair. Everything he does is hard work.

Hollister looked good today. He was very crabby and did not want to get out of bed... This seemed very normal! It was a struggle. His OT(occupational therapist) was very persistant and finally he got up. I reminded him he could be grouchy to me, as I can give it back. I then reminded him he will not be nasty to his nurses or therapists..(especially the nurses), they are all trying so hard to help him. That is why we have to have a bowl of candy. Candy makes us all happy and we can forget the grouch butt..(Hollister) ha

Hollister had an extremely difficult therapy day. He had therapy this morning. He started again at 1 and finished at 3:30.He was done in plenty of time for Oprah. I watch it, only because he makes me.

Eating is still an issue. He is trying hard to eat some of the thickened food. Yesterday he took in 400 calories, for the whole day. That included the 3 ketchup packets. I hate to imagine what the calories in the bag of white cheddar popcorn I ate was. It couldn't have been much more than 400 calories.(ha) But who is counting...

I am thankful today because you all are super prayers. I am amazed and thankful that I have such spiritual friends. I believe some of you may have some very powerful prayers. Hollister the last couple of days, has made impressive progress. Please continue to pray for him. His disease continues to be a progressive terminal illness and at this moment I am hopefull we are slowing it down. He has a long way to go. I am confident with all of your help we can make it through this journey.

Sunday, January 9, 2005 10:55 PM CST

The Vikings finally won a game. Unbelievable. I guess this is good for Hollister. It appears several of his Doctors are Vikings fans, this means his care may be better tomorrow. To bad he slept through most of the game. Toby, the bet was good, Hollister got a call into Dee with 2 minutes left...It was double or nothing on the wings..Now you owe Hollister. Hollister likes to have everyone owing him.

Hollister had to have the PICC line removed today. It was infected. It is safer to remove it before the infection can travel to the heart. I hated to have it removed, it made drawing blood and IV access easier. Hopefully, he won't need it.

Hollister looked good today. His weight is down a little, but not much. He ate a little more today. He is trying hard.
He felt sick tonight, and vomited his medications. He didn't eat any supper, I guess this was good.

He was laughing and smiling this morning. It is nice to see him up in a chair. I still love looking into his beautiful blue eyes. His walking is getting a little steadier. I think I saw some personality shining through. I am waiting for the comments to start. Hopefully, I won't wait long.

I am anxioius to see what another week of therapy will do. My lofty goal of the week is to drink real liquids. I had a consult with Amy(Hollister's Speech Pathologist at Blank), she gave me all kinds of tips on helping Hollister meet the lofty goal. She reminded me of how we had done this in the past. I know we can do it.

Tonight as I sit in the dark and quiet, I am thank-ful for all of you. This journey that Hollister is on would be much more difficult if it weren't for you. The thoughts and prayers are very encouraging to us. Hollister gets his amazing strenth from your prayers. The messages and stories have made this easier.I am truly amazed by all of you. The messages have come from family and close friends. Many are from High school and College, hospital friends, work friends, neighbors, from church, friends of friends and the list goes on and on. We are all friends because of Hollister. This is an awesome gift. Tonight I humbly say Thank-You!

Saturday, January 8, 2005 10:11 PM CST

Saturday, finally the weekend. There is limited therapy on the weekends. Hollister only had PT once today. When she came to get him around 8:30, he closed his eyes tight and told her... I am not open..Much to Hollister's dismay, he was indeed open and ready for therapy.

It was snowing the big puffy flaked snow. Thanks to my window, I felt like I was in a snow globe. Hollister was unappreciative of that also. After, therapy he decided to sleep. Aunt Judy and I let him sleep a couple of hours and then we hauled him around St. Mary's Hospital. We took him on the self-guided art tour. He wasn't impressed by much. He kept telling us that he had been there and done that.

He is trying some of the mushy foods. He ate some applesauce for lunch with the pudding thick lemon-aid.
None of the gross mashed potatoes for him.

Tonight, Dick is here and Hollister and I took to see some of the art and two chapels. Hollister of course. reminded him that we had already done that. Before we came back to the room we had to stop to play Chutes and Ladders. This is a very competitive game. I can't believe it is a childs game. We almost came to blows. Hollister can't see much, until it is his turn. He laughs so hard, when I fall through the biggest chutes. Dick of course was cheating. No one can get the giant ladder every time. The game is dangerous, I can't believe they have it in a Children's Hospital. I can't even mention what happened when we played the game Trouble. I don't remember games being so unfriendly, even when played with family.

We try to keep him moving so he can sleep better at night.
Unfortunetly tonight...The vomiting returned. He is resting now with a terrible headache. The tube feeds are again on hold for a few hours. Hopefully, he will tolerate them through the night.

I can still see him making progress. I can even see some of his personality shining through. It is going to take a long time, but we are in it for the long haul. It seems all the good things in life are worth waiting for.

Friday, January 7, 2005 10:20 PM CST

Hollister had a big day today. He had to wake up early for some unscheduled Psych testing. It was the bonus round. Hollister was very obstinate this morning. I started trying to get him up at 8 am. I reminded him, that he gets up at 8 at home. He quickly remined me.."Well, I am not at home am I? I heard the psychologist explain to the Doctors as he left the room. That Hollister has a sense of humor like his....and they would get along fine.
This was not as comforting as one would think.

He finally did wake up. I am not sure if it was before or after his first therapy. Dr. Whiteman(Hollister's geneticist) came while Hollister was in Physical Therapy. He was so excited to see him up and moving. He is an awesome doctor. He monitors his progress closely. He and Hollister have a great relationship. Hollister is Dr. Whiteman's prize patient. He diagnosed the MELAS, and is thrilled at how hard he works.

Hollister had the Swallow study at 11:00. He did not pass.
Unfortunately, for Hollister he did not cough to stop the liquids, this could cause a silent aspiration. I have to believe what Amy and Shawn at Blank tell us...We can fix that! He does get to have pudding thick food. Oh boy. This includes items like mashed potatoes and gravy, pudding, and puried meat.
He tried some potatoes and gravy for lunch. He ate some, and later said... They were bad. We are going to get creative with what we can find to feed him. The more he swallows, the stronger the muscles will get. He had some Kool-aid with "thick it" for supper. I tasted the pudding thick Kool-aid, it tasted like melted purple gummy bears.
He hasn't had anything to eat since December 11 any food is better than none. I am considering this a victory, no matter how small. This is one step closer to Wings.

Hollister had a pretty good day. He works very hard. He had some of the phenegren again today. This is the first day in over a week that he hasn't thrown up. Yeah... He wore only one set of clothes today. Here in Rehab... The washing maching time is a premium.
He was thumb wrestling with his cousins today. He appears to be in top notch form. He is even working on "rightie". Everyone at Blank needs to take note.
He is smiling more and occasionally gives us a laugh. He was laughing at the cousins and the songs and storys they shared. He is much stonger at the end of this week, than he was after last week.
Hollister was relieved to know that he only missed two days of school this week. He is very worried about Father Kirby and his memory loss on the bet that took place. Hollister said he would never bet against the clones..and doesn't care enough about the Hawkeyes to bet against them.(sorry Amy)!

Thursday, January 6, 2005 11:37 PM CST

Today, Hollister had a rough day. This is the last rough day. He was very lucky to have the cute young nurse again today. She was great. He didn't sleep well in the night. He was very tired. He continues to have the nausea and vomitting. No, one is sure what meds he is getting and how much he keeps down. He continues to get everything through the NG tube but he vomits a lot of the meds. There are of course some concerns about how much of the seizure meds he is getting. He is not tolerating the tube feed very well. A close eye has to be kept on his fluid/nutritional status. He cannot get dehydrated.
He was also given two doses of IV phenegren today for the nausea. Thank goodness he still has the PICC line. He is sleeping now, I hope it can last all night.

He worked as hard as possible in therapy. There is no rest for the wicked..He has to continue with therapy even when he feels like crap. His energy levels appear to be low. I am hopeful, tomorrow he will feel better. Hollister also had his Psychology visit today.(Everyone on the rehab unit gets a Psych evaluation and stool softners) He isn't talking a lot yet, so I had to do most of the talking. I am proud to say that the Doctor did not have any attendants waiting for me with a straight jacket and a padded room.

He also complained of a terrible headache...of course the tylenol was in the meds not kept down.
He is not seeing much today. He told me I looked pretty today, I knew immediately he was either blind or drunk. I know he hasn't had any alcohol. Not sure why this has gotten worse again. When he feels as bad as he does, the vision loss doesn't bother him. I would assume the strokes in the occipital lobes is causing this. I am confident when he feels better some of his vision will return.
We continue to have great hope. I am anxious for him to want to eat something. He is having the swallow study at 11 am Friday morning. I am very optimistic that he will pass part or all.
I am thankful tonight for Hollister. He has been the love of my life since the day he was born. I had no idea one boy could bring so many together. I read your messages and I am so inspired and motivated. I love to read and think about all that is said. Many of your messages make me laugh. The stories remind me of Hollister's dry wit and unique sense of humor. He will have so much to tell us when he is talking better. I admire Hollister's spirituality. He has had an untested faith. When Hollister was 4 years on Easter Sunday, he stopped on the way out of church...He spoke to the Priest...He wanted to let him know that he knew a better closing Hymn for Easter Sunday. The Priest smiled...We always knew he would be someone special.

Wednesday, January 5, 2005 11:08 PM CST

Hollister did indeed make it up by 8 am. He was so tired the rest of the day, he could barely keep his eyes open.
He worked extremly hard in his therapies today, tired as he was. Everyone here is impressed by his courage. His vison has changed from yesterday. He could not see as well. He had and adorable young nurse, he wasn't flirting with her at all. I knew then he couldn't see! She kept sitting by him and talking to him. He finally, realized how cute she was and smiled like he was at Hooter's. She said she might get to be his nurse in the morning.

He continues to have the GI upset, not sure why he continues to vomit. The tube feedings are being changed, slowed down, and medications are given very slowly. We are trying to eliminate all the variables.

I met with the Gastroenterologist today. The resident did not come with him. He stopped in earlier in the day. I told him he was a big chicken. He did not want to part of the conversation. He assured me, he had another patient to see. I didn't believe him, I think he was a big chicken.
The Gastroenterologist and I had a friendly visit. I reminded him it was part of the same conversation that we had had in May and October. He explained all of the pros of putting the permanent feeding tube. I guess it is as easy as a buying a new pair of shoes. Pick out the tube, he places it...no big deal. Oh yeah..Unless it is on my child...
Then of course everything is a big deal! We agreed to disagree at this time. We will give Hollister a few days to see if he can start to eat on his own.
Friday, at 1pm a swallow study is scheduled. I pray that all goes well.
I have had several people ask me what exactly does Hollister have that he needs so many people praying for him.
He has MELAS (Mitochondrial Encephalopathy Lactic Acidosis and Stroke like episodes) it is a form of Mitochondrial Myopathy. There is a foundation... United Mitochondrial Disease Foundation. They have a great web site with great information. UMDF.org. I don't know if any of you know who Mattie Stepanek is, he is the boy who was on Oprah with his poetry. Hollister has what he died of this year.
Three years ago when he was diagnosed..There is no treatment, no cure, only supportive care. It is a rare disease, it is genetic, and it stinks.

Speaking of Oprah...Shawn I hope you are reading this. You have to watch Oprah on Thursday January 6th...It is the re-run of the John Travolta crying episode.. to funny. It is also the tribute to Mattie Stepanek.

Mattie always wrote, Remember to play after every storm.
For all of you digging out from the big storm, I hope you are reminded of how great it would be, to be 10 years old with a new sled.

Tuesday, January 4, 2005 11:24 PM CST

Today is the end of day 24. To recap the last 24 days, we spent 12 days in the PICU and 12 days on the pediatric floor. This afternoon, Hollister was moved to the Rehab. Unit. We spent 3 weeks on this unit in 2001. It has not changed much. The first room that was assigned to Hollister, didn't have much of a window. I told everyone who would listen, that we needed a window. My sister Judy, told me that Deb Tell at Blank has spoiled me. To our happiness, we have a large window. I am sure Hollister will like that.(when he can see better!)

Hollister looked much brighter today. I even noticed a small twinkle in his eyes. He worked very hard for therapy. Even the OT thought he seemed a little spunky today. I have never been prouder. He walked further today and was much steadier. I even got a hug from him. It was as good as a lottery win.
Today, the debate over the permanent feeding tube continues. Tomorrow, they are sending in their big guns...Our gastroenterolgist. I hope we can still be friends..HA HA

Hillaree and Harrison are waiting for all the snow. They are tickled school is cancelled for tomorrow. Rochester is part of the sunbelt, we are only getting flurries here.

Hollister is starting his therapy bright and early in the morning. I believe 8 am. That should be a challenge. He likes to sleep in. He has a full day. I am curious to see how he handles it. I am sure he will handle it like he always does. He will work hard and nap hard. He is sleeping very soundly now.

Today I have so much to be thankful for. This amazing child has lead the way. He has so much strength, that he continues to pull me with him.

A very wise friend told me once in the PICU at Blank, that having a sick child is like a roller coaster.... On the good days ride to the top and hold your arms high above your head and scream for joy.. and on bad days...ride down and hold on tight..and remember you are still on the ride.

Dick and I met a young family here with an adorable 7 year boy. He brought so much happiness and joy to his family. He was a very brave fighter. Our hearts go out to this family...Last week, they got off the ride.

Tonight, I am riding high, knowing at any moment this ride may stop.

Monday, January 3, 2005 11:19 PM CST

We are nearing the end of day 23. It is hard to believe Hollister has been here that long. We did not move today. He was sick again this morning. He emptied his stomach twice this morning. One time, while the Doctor was trying to examine him. The exam ended very abruptly.
They are still trying to figure out what is causing all the vomitting and nausea. I worry that his abdomen is starting to look bloated. I keep reminding everyone about his motility issues. We are going to keep a close eye on it. He complained that his head hurt and his eyes also hurt. I felt so bad for him. He slept in a recliner most of the day. He looked pale and awful.
He did do some therapy around 4pm. We did finally meet the mystery Speech Pathologist. I think it is going to be a while before she is broken in. I fear she may never take him to the cafeteria for cheese cubes.
Hollister still has the feeding tube. No signs of a swallow study. The Rehab Doctor, thought Hollister might need a permanent G-tube.(a tube in the stomach or small bowel to continue tube feeding). I gently, reminded him, I will have to see a real need for that. I worry that might be a huge setback for him. He told me it could be temporary. I know it wouldn't be, I know too much about his illness.
Fortunately, that is when Hollister started vomitting. The conversation stopped. I am in no way ready for Hollister to have a permanent feeding tube. He loves to eat the #7 at Wendy's and Hooter's Chicken wings. I think we will continue to work hard.
Tomorrow, I am anxious for him to start feeling better. He keeps sliding backwards and then barely makes it back to where he started.
There are lots of things to continue to pray for. Hollister has amazing strength and courage. It has been a long time since he has felt well. I can't wait for that day. Tonight, before bed... I reminded him that God loves him. He looked at me and said, "I know that!"
Hillaree and Harrison enjoyed a day of extended vacation as they didn't have school today. I am sure they spent the day preparing for school and cleaning the house!(NOT) I know tonight they went to bed praying for another day off tomorrow. There is some nasty weather headed their way, with a prediction of a large snow fall. It would be great to be a kid again.

Sunday, January 2, 2005 5:58 PM CST

Today was a very quiet day in room #3-154. Hollister had a long stretch of big seizures last night. He was given some ativan around midnight. It took a long time for him to settle down. He slept a couple of hours. At 4:30 I woke up to a loud "HEY", I wasn't sure who it was... It was Hollister. He was animated and talking. He asked me where he was, how long he had been here, and WHY. He couldn't believe he had missed Christmas. He sounded good. I was excited...Even if it was 4:30 am. He talked a short time and fell back asleep.
Therapy came by around 8:00 am, she got him stretched and moving. He actually took a couple steps with her. They weren't pretty, like a new baby calf. His right foot was dragging some, but it was walking. I was as proud of him as I was when he was little.
He said he wasn't feeling well, we all believed him after he emptied his stomach. He has been asleep in bed since then. He hasn't moved. He looks rough.
A lot of blood and other specimens have been sent. He has had a temperature...Up and down.
The Neurologist came in this morning, he is puzzled. They have increased his medications to the limits. Hopefully, the labs will show us something. Infections can lower the seizure thresholds. Tomorrow.....Always tomorrow...
The move to REHAB is suppose to take place in the morning. I guess we will have to see what happens..

Today, I am thankful for my student advisor who thought I should go to nursing school. I had taken a lot of science classes, it sounded like a good idea. It was never my dream to be a nurse, it was a way to graduate. I am very thankful for the skills, I have been able to help with Hollister's care. It has also provided some comfort knowing my way around a hospital room or unit. The foresight of the student advisor...for this I am Thankful.

Saturday, January 1, 2005 10:23 PM CST

HAPPY NEW YEAR!

We actually stayed up until midnight. We watched the ball drop (at 11:00), and at 12:00 we shook our noise makes and drank sparkling cider. Hollister missed the whole thing. He was sick and in bed by 9:00. He had some kind of G.I. upset.
The kids were very tired..They kept asking who Dick Clark is and what the big deal was that he wasn't in New York. We tired to explain..The next question was....What is American Bandstand?

2005 came in with a lot of weather, rain and ice. No travel advised! It was a good day to be inside..Hollister unfortunately, has had some setbacks today. The New Year is not starting out as we hoped. He was seizing this morning, he had several large ones. The doctors are puzzled. He has had to have more IV medications. He has slept most of the day. He looks very pale and weak. He also has had a temp on and off today. Something is going on. He was less verbal and moved less also. They also hooked him back up to the monitors so they can keep a watchful eye. We are anxious to see what tomorrow brings.
We are all very optimistic that the new year will bring Hollister lots of new opportunities.
The New Year brings us hope of what is to come. We hope that if finds all you safe and Happy tonight.

Friday, December 31, 2004 3:59 PM CST

Finally, 2004 will come to and end in about 8 hours. Hollister and I are sitting here at St. Mary's hospital waiting for a better stronger new year. This is the year Hollister has been talking about since Kindergarten, when Mrs. Rolfes fiured out when they would graduate. We could have never imagined at that time, the twists and turns our lives would take.
The year in review has had some extremely difficult days for us. Hollister has spent 110 days as an inpatient. When I figured this out, no wonder he is tired. I also need to say, that is why our projects aren't done. If the Vet is wondering, that is why our beloved Hooch is fat.
In those 110 days, Hollister missed football games, homecoming, senior mass and picnic, senior pictures, and 1 semester of his senior year. It is hard to imagine what else. He will never get that back.
Adults always say, no big deal..Of course it is no big deal to us, we got to do it all.
Tonight as we reflect on the the year, we will hold our thoughts a little closer to our hearts. Hollister, Hillaree, Harrison, Dick and I will Thank God we are all still together. We ask you all to continue to pray for Hollister and his overwhelming desire to live. He is the toughest boy I know.
To all of you on the outside who can have a glass of the Spirits..Raise your glass and toast Hollister.
He is the richest man we know!

Wednesday, December 29, 2004 11:09 PM CST

The days are starting to run together. We did not move again today. His medications and seizures are not straightened out. I guess we will move to Rehab when they are good and ready to move him.
He worked very hard for PT and OT,(His OT here, her name is Michelle!) he stood at the side of the bed. I didn't realize how hard this is. We all cheered. It was very exciting.
I now realize that I do get a lot of excercise. He was very tired after standing. Wow, I walk and stand a lot during the day. I also sit and get up many times during the day. I am going to start checking my heart rate.. I think this counts as aerobic excercise.
He also combed his bed hair. I tired to explain to them, that under no circumstances does he comb his hair. He held a brush and with a little assistance, he did indeed comb his hair.
He also had an evaluation by a Speech Doctor today. We have been waiting. Naturally, she came when he was asleep. We did our best to wake him. Aunt Judy got him to smile, when she told him Father Kirby owed him a dollar. He didn't realize The cyclones had won! He did just enough to pass. She OK'd it for him to see a speech therapist. Hopefully, our mystery therpist will arrive tomorrow.
Hollister also had a heart Echo done today. We are waiting to hear the results. I am sure it is OK... He had one done in Des Moines last April.
He continues to wake up a little more each day. He is working very hard. It is a long process. I have to remind myself, he had a lot of drugs and seizures to wake up from.
My favorite Cindy Brady line....
Oh Daddy, He's better than a Doctor....He's Santa Claus.
This week, maybe little Cindy has the right idea...

December 28, 2004 10:53

We did not get to move to the Rehab unit. Hollister is not quite where he needs to be. We learned today that we have a long way to go. I am sure he is up to the challenge.
Unfortunately for him, he is still having some seizure activity.
The Rehab Doctors are curious to see his capabilities. I continue to remind them what his baseline is. He continues with therapy. He is as grumbly with the folks here as he is at home. Everyone is concerned with his hearing, I think he is just ignoring them!
Our lofty goal of the day was, to get a shower. My sister Judy, my niece Jamie and my self we had mission accomplished. It was a lot of work with lifting and holding. He looks good. He even sat in his chair for a couple hours after that. He was awake with his hand out when Father Kirby came for a visit. He did collect his dollar. Father Kirby was then silly enough to bet Hollister on the Cyclone game. We all know how the game turned out.. He owes Hollister another DOLLAR!
Too bad for HOllister, he then slept through the Iowa State game. He is still asleep. All that work tired him out.

Monday, December 27, 2004 4:30 PM CST

Today was a very busy day for Hollister. He is sleeping.
He had lots of therapy today. PT and OT twice, we all know how happy that makes him. No Speech therapy, I believe they have been to afraid to come. Hollister continues to make it difficult for the therapists to do their jobs. A swallow study is in talks for sometime this week. I will keep you posted.
The tube feedings continue. He seems to be tolerating them well. He is swallowing his own saliva much better. Hopefully, he will be eating soon.
The neurologist and geneticist are continuing to montior his medication. The small seizures continue and the myoclonic jerks have started. I am positive a balance will be achieved!
He might be moved tomorrow to the Rehab Unit. The Rehab doctors evaluated him again this morning. They want to get started. Everyone wants Hollister's seizures to be controlled before we can come home. I am sad not to be heading to Des Moines, but I appreciate them not wasting Hollister's time.
Hollister's progress is slow, but it is progress. I am greatful he is still fighting. When he is awake, he is smiling. I am not sure what he is smiling about, but he is smiling.
Today, I am thankful for all of you. Your generosity, phone calls, random acts of kindness, and your continued prayers are overwhelming and humbling.
"God Bless us, Everyone"

Saturday, December 25, 2004 10:17 PM CST

Teacher says, "Everytime a bell rings, an Angel get's their wings!" It is a Wonderful Life. We have been the recepients of lots of Angels working together. We are humbled by the outpouring and generosity of so many. It is hard to list all of the great kindness that have been done. We thank you all from the bottom of our hearts, each and every one. Christmas came ready or not. We had a very unusual Christmas. We were together and that is what counts. Hillaree, Harrison, and Dick come up on Thursday night. Grandpa and Grandma came up also. We were also able to attend Midnight mass on Christmas Eve. There is a beautiful chapel, right here at St. Mary's. Santa came in person this morning, bringing lots of gifts. He said he also visited 45th street and left a FEW things. The kids have decided to wait and open their gifts when Hollister is home. That could change after they see all their gifts!
We had a very tasty Christmas Dinner at the Ronald Mcdonald House. They really out did themselves.
Hollister is about the same. He has some periods of alertness. He is not speaking. I am not sure what he is seeing. He also isn't moving much. The nurses were able to get him to a special chair this morning. He sat up a couple hours. He was very tired and slept most of the day.
He continues to fight the infection and is running a temperature again. He appears strong and comfortable.
When he sleeps he has a very calming smile on his face. I wonder who or what he is thinking of.(Probably, Chicken wings!)
We did remind him several times that it was Christmas. I know he can hear and understand. He smiled when I reminded him, he got out of Midnight mass. I also reminded him he alter served that mass for several years.. That made me very proud.
The presents are unwrapped, the cookies are gone, and the kids are in bed. I am reminded here, that the bells are ringing and all our Angels are receiving their wings!

Friday, December 24, 2004 3:26 PM CST

May your stockings be hung by the chimney with care....
We are hanging our stockings in a new room. We got moved about 1pm to the St. Francis building. We are on the pediatric unit. Finally, after 12 long days in the pediatic intensive care unit, we are one step closer to the door!

Hollister is still quite sleepy. He was very tired after the move. He does wake up a little bit. We are all very anxious to see what he has to say. We are betting it will be something funny.
He still may be having some seizures. The doctors are watching what he does very carefully.
The Tube feedings are up to the rate they want. He is tolerating this well. It appears this is the only Christmas
dinner he will get.
Hollister still has the infection in his lungs and his bladder. Hopefully, the antiobiotics will help this.He is working very hard to over this and a few other medical obsticales.

Hollister is sleeping through the Vikings/Packers game. He will be sorry he missed it. He has so many thoughts about the Vikings and the Packers. I am not sure who he would be rooting for but I think he would want both teams to lose! He would argue with each of you...and you know who you are.

Christmas Eve is one of the best days of the year. The past 12 days I have had time to think about the past 17. Hollister like all children love Christmas. I can picture him as a small child with the excitement and anticipation of what is to come. This Christmas Eve, I am the one waitng with excitement and anticipation. I am waiting patiently for the day that Hollister wakes up. I am waiting to look into his beautiful blue eyes and have him give me a big hug.
On this Eve of Christmas, may all of your dreams come true.

As he proclaimed as he drove out of sight, "Happy Christmas to all and to all a good night."

Thursday, December 23, 2004 10:43 PM CST

Hollister is still in the PICU. We did not get to move today. I am hopeful, that we will be moving tomorrow.
Continues to be having some seizures. An EEG was done today. The resident talked with me, an said it looked like there were no seizures. He said, that it looked like the conditions were right and he might have more. Not sure what that meant.

The therapists came to see him today. He was able to sit on the side of the bed with much assistance. It appears his head has turned into bowling ball. He was unable to hold it up. He is very deconditioned. I am certain he will gain his strenght back. I will make sure he works very hard..
We also met his Occupational therapist today. She seemed very nice. I asked her three times what her name was. Finally, I said "Oh...that's easly, his OT at home is name Michelle!" I guess I can remember that.

Hollister appeared more awake this evening. He smiles all the time. This does my heart good. The nurses have been calling "smiley", He is sleeping well tonight. Hopefully, this can last. He looks pretty good tonight. As good as someone who hasn't had a shower in 13 days. He definetly has some good bed head!!!

Wednesday, December 22, 2004 11:22 PM CST

Today is day 10. We can't believe we have been in the PICU ten days. Where does the time go? Hollister certainly has had some ups and downs. I really hoped we would get to the adolescent floor today, seems the Doctors don't know that I have a plan. I am hopeful that it will be tomorrow.

The MRI showed that the stroke in the left side is about the same. There is still swelling. The thalmus is also invovled. Disappointing as it is... the right side also has several places where there is stroke. This is new and very concerning. I was very sad, but not surprised.
Hollister has also had quite a bit of seizure activity. This is also kind of concerning. The Doctors are worried that this could lead to the cluster of seizures that he had last week.

We will have to wait and see what his brain will do. It is under a lot of stress. I have faith his function will return. It won't be long and he will be arguing religion and politics with Grandma Jo and demanding Father Kirby pay up. Everyone who knows Hollister enjoys his dry sense of humor and his ability to argue. He has a gift.

He continues to have weakened strenght. He occassionally moves, mostly his left side. He has his eyes open not sure what he sees. I know he is hearing and his speaking is extremly difficult.
The Physical therapist came today, she is the same girl that helped him three years ago. That is so nice. She came in and said who she was, and Hollister immediatly stuck out his tongue at her. It was awesome.

I keep reminding myself that Hollister is able to over come these difficulties. He has done it before. I also know that we have the greatest therapist and speech pathologist waiting for us at Blank. I keep telling myself, "They can fix that!"

Tuesday, December 21, 2004 3:48 PM CST

Finally, after 8 long days...This morning about 8:10, the breathing tube was removed.(Extubated) It was very frightening. He tolerated it well. He is breathing on his own. He has a blow by of 40% mist. He is maintaining his airway. He also has less secretions and is coughing fairly well. His anibiotics have been changed to help with the bacteria in his lungs and bladder.
He is not awake. He did have a short moment this morning. My Mom and I saw a smile. It was a beautiful smile. His teeth still look good. I was holding his hand and I felt him grab mine back...Christmas came early for me! He then assumed the thumb wrestling position.. He did win(of course I let him)! Anna-Banana and Dr. Dodge...be aware, it won't take much therapy and he will be back in thumb wrestling championship form!!!
There was a MRI done yesterday. The Neuro-Resident showed me the film and explained there are lots of changes. The Doctors are reviewing the MRI's from Blank and comparing them to the new one. Tomorrow morning should bring news. Today, I am thank-ful for the extubation. Tomorrow, I will face the MRI.
Thank-you to everyone who is sharing his page and writing messages. It means so much to us. We have all enjoyed every message. It is lightening our journey, knowing so many care.

Monday, December 20, 2004 10:45 PM CST

Let it snow. Today brought snow to Rochester. It appears Christmas is on it's way. Ready or not.
Today, brought a day of waiting. Hollister continued to have the low grade fever. Tylenol seemed to help.
He continues to be intubated. Hopefully, tomorrow morning he will be extubated. I am very anxious for this. I am hopefull that he will do OK.
His lab work was looking much better today. His lactic acid was 2.0 this morning. Yeah!!
Hollister also went down for a MRI today of his head. I am very anxious to hear what the neurologist has to say. It is a lot of work moving him with all the tubes. That is very nerve wracking.
Each day that passes, I want to be at home a little more. I can only imagine what he will say when it is his turn to talk.
Dick went home this morning. It was nice he was here, but he needs to be with Hillaree and Harrison. Tomorrow is the last day of school before break.
Let it snow...Let it snow...Let it snow...

Sunday, December 19, 2004 11:06 AM CST

Brrrr Brrr this morning it was 7 below 0. Hollister isn't quite as chilly. Last night Hollister developed a fever..102 or so. Unfortunately, he has an infection. It looks like it is a bladder infection from the Foley Catheter. He aslo had a small spot of infiltrate in his left lung.(this is like a pneumonia). His labs are trying to adjust to this infection. His lactic Acid has risen from 1.9 to 5.1. We are waiting to see what the rest will tell.

Good news... The seizures have stopped. The Neurologist told us that he is concerned with the infection, it can lower the seizure threshold. The continuos EEG is going to be discontinued today. Hollister will like not having the leads and bandage on his head. Hollister is getting excellent care and everyone is watching closely.
The versed has been weaned and about midnight it was turned off. He is still sedated and INTUBATED. We are extremely disappointed by this. Maybe tomorrow. He is still working very hard. He is fighting this dumb disease..We are proud.

Hollister would love that it is this cold in Greenbay today.
We will be watching the life flight Helicopter come and go all day. There is talk here, that they will be bringing in frozen Packer fans...

Friday, December 17, 2004 11:56 PM CST

Today, was another long day. Hollister is still intubated and sedated. Late this afternoon, they started to decrease the Versed. It is now at 9.0mg per hour. He is still sedated. He went to Interventional Radiology this morning to have his feeding tube advanced through his stomach into the small bowel. This is a good place for it, this makes it extremely difficult for him to aspirate. They started his medications through the tube this afternoon.
Tomorrow morning, we will find out how the EEG is looking. He only had a couple seizures today. Much improved.
He is not going to be very happy when he wakes up and finds out he has a feeding tube. He hates having that tube in his nose.
The notes that we have gotten off the guestbook have been awesome. Reading them have been a highlight of our day.
Thank you for reading and writing notes to Hollister. We had not idea how one child has touched so many. We are truly blessed to know how many people are praying for and care for Hollister. We are pleased to see how many of you get how truly special he is. We have known for many years that he posses a special gift.
Tomorrow and Sunday will be difficult days. We will have to see how truly tough Hollister is!
If anyone has any idea how to get Hooter's wings down a feeding tube, please let us know!!!!!

Thursday, December 16, 2004 9:30 PM CST

Christmas came early at St. Mary's Hospital. The Child-Life department had a party for the patients, their families, and the staff. There was caroling, food, and presents. It was a bright moment in a place that can be so sad. It was a very kind and generous thing for them to do.
Santa came to visit Hollister. He wanted a picture with Hollister.(This is not as exciting as a picture with a Hooter's girl)!! He also whispered to Hollister who has been naughty and nice.
Unfortunately, Hollister did not know there was a party. He is still intubated.(on a breathing machine). He is quiet and sedated. Yesterday, we hoped the seizures would stop.
They did not stop. This made us very sad. He continued to have seizures through the night. He still has the continuous EEG. The Versed was increased to 12.5 mg per hour. He is tolerating this well.
We are hoping that this will stop the seizure activity. When this happens he will be weaned from the Versed. Hopefully, he will then, breath on his own.
We are anxious for this to happen. He sometimes looks like he has so much to say. We are always with him, yet we miss him so much.
He continues to show us how amazing and strong he is.
Please pray for and think of him.
Remember, there are only 9 days until Christmas...It is not to late if you are on the naughty list.

Wednesday, December 15, 2004 8:05 AM CST

This is the last full week of school for the students at Dowlilng High School. The kids are busy preparing for exams.
Hollister did not want to be left behind. Hollister has been taking lots of tests this week. He continues to be strong. God willing...He will pass all of the tests.
Yesterday, was an extremly difficult day for Hollister.
He continued to have the continuous seizures....The EEG did not improve with the medications. The day proved to be difficult. A PICC line was started in his arm. This is making his lab draws much nicer.(A PICC line is a central line) TPN(Total Parental Nutrition)is IV nutrition loaded with calories. This should help his metabolic state stabilize. He was also started on a Versed Drip... This was to stop the seizures. He tolerated a lot of this medication. He has been very strong. At Midnight, his respiratory status had changed. He had to be intubated and placed on a breathing machine. The seizures have continued, and the medications are being adjusted. He is sedated at this time, and not in a coma. We are hopeful, that this will stop the seizures and let the brain rest. The left side of the brain, where the stroke is, is also showing some signs of abnormalities on the EEG.
Hollister is strong and has a faith that he has never questioned. We take great comfort and pride in this.
Hopefully, today the Neurologists will bring encouraging news.
Thanks to all who are thinking of and praying for Hollister. We know he will continue with his dry sense of humor and his talent for eating Hooters Wings!

Monday, December 13, 2004 6:51 PM CST

Sunday, December 12, brought Hollister to Rochester. He had
had some significant changes through the weekend. We decided it was time to head north. Hollister had been having a lot of seizures, and his neurologist is at the Mayo Clinic. The weather also was no fun to drive in. The winds were rough. When we got here, the winds almost knocked Hollister over.
Holllister has been admitted to the PICU room #3-542. The CT scan showed that the stroke to the left side was still large. The EEG showed, unfortunately that the seizures are coming from the right side of brain...Not sure what it all means at this time.
He is connected to a continuous EEG Machine so they can monitor the seizures and the medications being given.
He is realatively comfortable, still has the headache.
We are hopefull, the medications will start to control the seizures.
Please continue to think of and pray for him. He continues to have strentgh and courage.
He also takes great pleasure in the Vikings loss, helped ease the pain of the Cowboys.
We will stay in touch, as we don't have a clue when we will make it home.....

Wednesday, December 8, 2004 9:11 AM CST

We finally got home last Friday,December 3rd. This was the end of a very long 7 week stay. We are all busy getting to know our family again. There have been many changes. Hillaree broke her arm, and joined a swim team. Harrison is now playing Hockey and wrestling. Harrison also got second place in the spelling Bee. Hooch is no longer the king of the house, and Hollister is trying to find his way around the house.
Hollister will continue therapy 4 days a week. This includes a trip to Blank Hospital on those days. It can be exhausting for him. He works very hard at therapy. His vision comes and goes, and is always limited. His right side continues to give him difficulties. It frustrates him that "rightie" doesn't want to work.
He continues to have amazing strenght, a gift from God.
Continue to think of him. He loves visitors.

Tuesday, November 23, 2004 2:57 PM CST

Today Hollister did an interview with Steve Karlin of Channel 8. It will air on We. Nov. 24th on the 5 o'clock news. He wanted to support Child Life and the Festival of Trees.Hollister did an awesome job on TV. I hope a lot of you got to see it.He loves the child life department and loves being a part of it. From the Festival of Trees, we were given a very large beautiful tree. It is the "Irish you a Merry Christmas tree" That was a very generous, kind thing to do.

Tuesday, November 23, 2004 2:44 PM CST

Today Hollister did an interview with Steve Karlin from Channel 8. It will air on Wed. Nov 24th on the 5 o'clock news. He wanted to help support Child Life and the Festival of Trees.

Tuesday, November 23, 2004 2:10 PM CST

Hey guys it's me Hollis, send me messages.

Click here to go back to the main page.

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