History

Friday, May 25, 2013 11:03 PM CST

Graduation day….YIKES!!!

Harrison is ready.
Emotions are a little raw.

Hollister is not going to attend the graduation ceremony. (thank you Nurse Ronie and Cindy)
This is very hard on all of us, not having Hollister with
us.
No pictures.... very sad day....

The actual graduation was perfect.
Ben Baker did at great job on his speech as the Pax Christi recipient.
I felt motivated about my faith and know I need to do more.
Listening to this 18 year old child explain a Christ Centered Life and faith,
makes me realize how little I know and do.

Harrison enjoyed every minute of the actual ceremony.
I could actually see him from where I was seated.
He had a great time.
Bishop Bates hands the diploma and talks to every student.
It is awesome.
It is held at the Knapp center so everyone can see.
No scholarships are given out
to keep the actual ceremony moving and done in a timely manner.
There is an assembly at school for this in April.
I missed it…but I know it is nice.
Harrison got some nice money from Marquette and Catholic University of America
and a Diocesan scholarship for CUA.
Harrison was also admitted at the USMAPS and an admission
to USMA at West Point, a scholarship valued at $400,000.
Not bad for a poor kid from Beaverdale.

Dowling kids are so smart and 16 million dollars went to this class,
pretty impressive.

Again I felt it was over way too fast.

I felt an empty hole in my heart and I am sure Harrison
did too. Hollister and Harrison were the "Best Brothers".
For Hollister not cheering proudly for his little brother
that he asked God specifically for, is heartbreaking.

Hollister not being able to be there is a hole we can’t fix.
Not sure when the hurt will stop, I fear it may never.
Every passing event we no longer take pictures,
this really hurts very deeply.
Our Memories are vanishing.

Team Tough should be celebrating….

Thursday, May 24, 2013 11:31 PM CST

Harrison’s baccalaureate Mass was tonight.

I feel very grateful to night to Nurse Ronie and Cindy for watching my boy,
their Bubba.
Means a lot that I could go.
It was a true gift that I was able to attend
a simple Baccalaureate.
Most parents take for granted the fact that they attend
and celebrate every event in their life!
They go early, take pictures,
get good seats and enjoy the whole process.
I am thankful that Hollister has friends willing to
give of thier time so I can go to a Christ Centered Event.

Baccalaureate Mass is beautiful.
It truly reminds me why my kids all went to Dowling Catholic High School.
Dowling does so many things well and Baccalaureate is one of them.
It is so nice to see the entire class together for one last time at Mass.
It is certainly a time of celebration and a time of reflection.
Harrison’s class has so many good kids and he has great friends.
I feel very fortunate that he made the choices he made.
He took full advantage of what DCHS had to offer.
He was busy and sometimes too involved and his life was crazy.
He was never happier.
He loved DCHS….
It is nice seeing kids who know and understand the benefits of a Christ Centered life.

Hillaree got home after we left.
She got to spend the night with the girls and Hollister.
When I got home, he had been showered and shaved. He smelled so good.
This was his first shower since March 14…
Crazy! I can’t imagine how good that felt.
Hollister was happy and smiling.
He responds to Ronie like no other.
He loves her and Cindy.
Mercy should feel fortunate to have them working there.
I feel blessed to call them friends.

I on the other hand have been reflecting a lot.
I did not cry but my heart is a little achy.
I have never been one of those moms’s who wanted her kids to start school.
I was never happy when summer was over.
I liked having my kids around and I like a full house.
Listening to the readings and speakers tonight made me realize
just how much I will miss him and all the craziness.

Team Tough is thinking…….

Friday, May 17, 2013 10:15 PM CST

Hollister has made it 5 days at home.
Feels good…
I am wondering today, if his dilantin level might be a little high.
He seems very very sleepy and sedated.
He has been more nauseous than usual.
Blood work right after lunch. Oh boy!

As usual, this appears to suck.
He was stuck several times before they finally listened to me.
Still had stuck him 2 more times to get enough….
YIKES…

Hollister is struggling.

Took him right home and he slept on the couch.

The office did call and I was right his dilantin was 23… high…
too high for Hollister.
Considering that he is now on 6 seizure medications.
No advice on how to handle it being high….
so, I had to decide on how much dilantin to give and how much not to give…
No pressure!

Tonight is Harrison’s last high school rugby game.
I had hoped since it is nice out,
to take Hollister to the game in his new big wheelchair.

Not to be Hollister is too sick and now I can’t go.
This one feels a little like a punch in the gut.
I never made it to one game.
They were all while Hollis was in the NTMICU…SAD
Did get a text and photo that he made first team all state.
He was excited.
The punch went a little deeper.
He loves playing rugby just like Dick.
Harrison is hopeful he can play some rugby at West Point.

Graduation is in one week……

Tuesday, May 14, 2013 7:05 PM CST

It feels good to be home.

Hollister is still very sick and weak.

He continues to have those nasty seizures.
I am hoping his medications level out soon.
Hollister is still sleeping on the couch and I am resting in a chair next to him.
I am used to sleeping in a chair, cot, floor, wherever….
but that recliner at the hospital is what I miss…..

Today, we had to take Hollister to the doctor.
The CIC pulmonologist wanted Hollister to be seen
by his regular doctor as soon as we got home.
He also wanted some blood work.
This is always a very tough situation,
made much worse by the arrogance and ignorance of the nurses/lab folks.
It is no fun taking him anywhere when he is this weak.
We opted to come back Friday for lab work.
Give them a few days to think about it!!!
It is so hard getting him anywhere at this point.
Not sure how Dick does it.
Getting him in and out of the car is tough.
He is so weak and not sitting very well in the wheelchair.
Got him home and he is worn out, sleeping on the couch.!!!

Monday, May 13, 2013 12:10 PM CST

Oh what a night!

All I can say is that goodness nurse Ronie was here!

Hollister as expected started seizing last evening around 7ish.
Before we left Mercy, neurology dropped his dilantin significantly.
Weaning at home…NICE!
Seizures really didn’t surprise me,
but….his airway unfortunately remains tenuous at best.
I do have a suction machine at home….no suction catheters,
just big ole yankaurs!
Hollister was seizing enough that he needed to be suctioned deeper to get the crap that
doesn’t move when one is seizing.
Making do with what I have has been the story of my entire life…
so my brain was in overdrive…thinking!!!(which can be difficult for me!)
I cut a piece of his feeding tube and hooked it into the suction
and much to my dismay it worked.
Nurse Ronie was able to deep suction Hollis
and remove the mucous plug before it became problematic.

We were feeling very MacGyverish,
Ronie kept asking for a rubber band and a paperclip! Tee hee!!!
Finally, around 11pm I gave the diastat.
We were very patient waiting for his drugs to be absorbed and work.
This is difficult at best.
We kept searching half lives of drugs…and watching the clocks.
When the seizures started too widened in times of starting,
we both breathed a sigh of relief.
He finally missed one altogether and then we started to relax and by 3 am, he was resting!
It was a beautiful sleep.
It was a rough first night at home and I am very very thankful for Nurse Ronie!

This is the start of Harrison’s last week of high school. Yikes…
A reminder of times passing and I am missing so much!!!!

Sunday, May, 12 2013 6:18 PM CST

Happy Mother’s Day…to me.

I am writing this note from home after 59 days inpatient torture!

It all happened so quickly that my head is spinning.
Hollister has only been extubated since Thursday and here we are at home.
The longest he had made it extubated was 10 days…yikes…
Thanks to Hollister’s new love, nurse Ronie, we are home!
She was instrumental in helping us get out while the getting was good.

We had decided on Friday we would push to go home on Monday….
but Ronie asked the CIC doctor if we could go today.
He stuttered a moment but agreed.
We still needed infectious disease and neurology on board.
Ronie again worked her magic.
She started asking at 0900
and at 1100 we rolled right out of the NTMICU.
It was joyous.

Hollister again made so many women fall for him.
It always amazes me, when people truly see my Hollis and get it.
I spend my entire visit reminding everyone who will listen, just how great Hollister is.

Some nurses are very annoyed by how much I talk and all of the stupid stories I tell of him.
At first this hurt my feelings especially when I overheard them talking ugly of me….
but now I just pity them. They have cheated themselves of
Hollister's smile, laughs, smirks, and attention.

I actually pity all of the people who used to be in
our lives that have stepped out, your are the ones who
are missing out...not us!! He will only be with us a short
while and to all of you who left this journey, I say good
riddens! Because the few who remain, ENJOY! The ride is
short and bumpy but well worth it!

My reasons for talking and telling Hollister’s story is, he can’t do it himself.
He is unable to remind them he is still here and most certainly understanding there words and body language.
Hollister’s non-verbals are very loud!

We are happy to be home. Definitely have some work to do around the house. Two men alone for 59 days have left this mamma some work. YIKES!

Nurse Ronie followed us home from Mercy. She left work early to help transition “our boy” home. She is planning to spend the night with me. What an Angel!!!

Home Sweet Home!

Happy Mother's day to me!!!

Friday, May 3, 2013 11:27 PM CST

Blizzard May 3rd, absoulutely, makes no sense to me.

I hate today.

It has been an awful day for Hollister and his parents.
Yesterday was a careplanning meeting from HELL. You all
know that I hate care planning meetings, since the lynching
meeting at Blank Children's Hospital August 11, 2006!!!!

This meeting was almost worse than that one. I may never
ever go to one again! I don't know what gives a table
full of Doctors the right to say what they say aout Hollister,
when none of them "CARE" about him anyway!!!!

I am so tried of talking about Tracheostomy! He is not
getting one, they will put one in me first.
No step down unit here at Mercy...No trach!!!!!

I will say, Shame on you Ruan Neurology!
The doctor representingyou did your group justice.
He acted liked and Ass,
said dreadedful things to Dick and I.
I am proud of Dick for putting this IDIOT in his place.

HE pretendedto know about MELAS and explain it to us.
The most impressive thing he did was
strom out and act like the 2 year old he was.....

Ruan Neurology need to educate most of thier doctors!!!!
MELAS exsits and patients need care!!

It was an awful meeting, where again I had to defend what
and who Hollister is! Thank you Dr. Mooradian(Hollister's
pediatric cardiologist, who has taken care of Hollister
the last 12 years) He came into the shark infested waters
spoke up for Hollister and left with a large piece bitten
out of him.....
Nurse Amber on her last day working in this unit, was
awesome. She was everything a nurse who is advocating for
her patients rights should be. She took some serioius
damage from the 8 doctors at the table.

Needless to say, it was dreadful! I can't write most of
it, but I will never ever forget who said what!!!!

As I come back from the beating, Hollister is seizing and
I ask the nurse about it...Our nurse was NOT Amber from
the meeting..... this is an older part time nurse, who
always seems very very nervous.

She said, "it seems very weird to me to see seizures that we are not treating...."
I almost stroked and said...."WHAT"
she than said so casually,
"The Docs form neurology didn't think we need to treat these, ya know he is end stage....."

Again, I almost stroked, "OH NO, we are treating these!!!!)

Another long day...

Now to the damn Blizzard in May..

All I wanted to do since the Meeting of Tortue,
was get Hollister the Hell our of here and away from the Doctors of DOOM!
Hollister's Doctors at Mayo were happy to hear he was coming....
No Rudolph with his nose so bright, Rochester got 15 inches.....
we were not going anywhere!

Then just this evening...we find our our Hospitalist has been fired....
and we have a new doctor taking over Hollister's care,
a doctor from the meeting.....

To sad and tired to think!!!

Sunday, April 28, 2013 8:52 PM CDT

Oh boy..

This day has been an emotional rollercoaster...
and not the fun kind.

Hollister's personality continues to shine through even at
the ugliest of moments.
He is winning over many of his nurses, they are truly seeing
him as him.

He is the toughest boy/man in town.
I am so proud and priveledged to be his Mom.

This day started out as trouble and appeared to be heading
no where good.

A little after noon....
Roni called it a "McGuyver Bronchoscopy" was done.
It was heinous, but effective. Lots of thick copious
secretions were sucked out.
Hollister was tired and slept soundly afterwards.

Unfortunately, when he woke up.
Back to secretions, not coughing and lots of using the
AMBU bag.
Not fun to watch.
Hollister is hating all of this.

Around 7:20 he was intubated...AGAIN.
much to my disappointment and anger.

Team Tough is on our knees praying!

Saturday, April 27, 2013 11:36 PM CDT

Friday Hollister stood and transferred to the chair with
therapy. It wasn't pretty, it was beautiful to see.
We have been here 6 long weeks..
Finally, a stand and transfer.

He sat in the chair again Friday.
He looked pretty good. He wasn't coughing the best,
but he was coughing and bring up the nasty lung stuff.

Friday, through the night he had some desats again and
had to be bagged. This seems to push the mucous loose so
he can cough.
It is ugly to watch but in the end helpful.

Saturday, I started to notice that his eyes were deviating
and sticking there.
Different than looking around or falling asleep.
Very suspicious to me.
Seemed to be happening before he would need help
suctioning.
Made sense to me if he was having a siezure, no matter
how small, he would have crap pooling in the back of his
throat.

Ask, the Intensivist, and he didn't think they were
seizures.
No one from Neuro stopped today.
Hollister was up in the chair, having a percussing vest
treatment. I noticed it bigger, a little lip and little
finger movement. Roni, thought so too.
Called the intensivist and he order...more dilantin.
His level was a little low.

CRAP!!!

He was so tired and stoned looking. Took him a long time
to shut his eyes and rest.
but, that kind of rest...no coughing!!!

It will be a very very long night for Hollister and all in
room #4. Kim(his nurse)is working her butt off for him.

Hate night time in the hospital.

Can't thank these girls enough for all they are doing.

Team Tough is anxious...

Thursday, April 25, 2013 11:25 PM CDT

Hollister is actually sitting up in the chair at this moment.
He had a nap earlier, was awake and coughing, so in the chair
he is.

Trying to find something good on the TV.

Hollister's day was OK.
He still isn't awake as he should be, no where near his
baseline. Makes me a little more crazy each day that passes.

Tonight, Team Tough was headed to the Civic Center for
The Rice is Pright Live.
Team Tough t-shirts were made, and prices were checked.
Hollister and I were very very sad to miss it.

They all had fun, even if no one actually got on Stage.
Motivates all of team Tough to become fans!!!

Hoping for some results on weaning of the seizure medications
soon.

Team Tough is ANXIOUS!!!!

Wednesday, April 23, 2013 9:57 PM CDT

The last five Wednesdays have been trouble here at Mercy.
Today was no exception....

First lets look at Monday and Tuesday to see why Wednesday's Suck.

Monday was another good day. Therapy sat him at the side of
the bed. He was ready to go. His Dilantin dose had come down
and he was waking up even more.
He sat in the chair on and off all day. Followed the 2 hour
routine and it seemed to be working.
He was coughing and we were able to get him to clear it without
much difficulty.
Again there has been some concern that Neurology hasn't seen
Hollister in a week or so. Time to call Rochester..

Tuesday, more of the same. Except, he seemed much more
sleepy.
Dr. Flowers did indeed talk to Dr. Patterson. Don't believe
it went as I had hoped.

As previously noted, Wednesday's suck.

Hollister was sitting at bedside with therapy. She was hoping
to stand him today. He was happy and smiling.

Next thing, he is seizing. Big ones. Again, lucky for
Hollister, nurse Roni was here for a meeting and stopped into
to see her boy.
She was very helpful getting meds for Hollister.
He seized big for about 90 minutes.
The valium seemed to stop them.

Infectious Disease was in the room at this time trying
to assess him.

He rested well.

Neuro did come when called, but he was more interested in
his phone and texting than listening or assessing Hollister.
Again, Dr. Flower stands alone trying to figure out all of
the medication changes made.
Up with the dilantin again....

Unfortunately, sedation and seizing made it very difficult
to cough.

Hollister did finally get up to the chair around 4 this
afternoon. He was tired.
His temp creeped up a bit with his heart rate.
Blood cultures and sputum were sent again!

ARGH!!!

Long day for Team Tough

Sunday, April 20, 2013 7:46 PM CDT

Hollister is still extubated...2 days and counting.

Thanks to the work of some very awesome nurses.
They have all worked very hard to keep him that way.

He is very tired and appears sedated. He has a limited
cough and not much gag reflex.
He is having a very hard time clearing the crap from his
lungs.
He is getting the vest percussion every 4 hours with the
mucomist neb. treatment. This is helping thing those
nasty secretions making it easy to get up and out.
Usually, the nurses are helping him out with some rigorous
suctioning and nasal/tracheal suctioning. This is an awful
thing, that has to be done.
The nurses get all the credit for keeping his O2 sats up
and looking good.
I am greatful....

He has been up in the chair quite a bit. Started this moring,
2 hours in the chair and 2 hours out of the chair.
all of this moving has helped in cough up a lot of stuff.

Here's to all of the great nurses!!!
My eye's leak a little when I think how hard they are
working for him!!!

Team Tough is finging strength in all that is being
done for Hollister!

Friday, April 18, 2013 7:46 PM CDT

EXTUBATION EXTUBATION EXTUBATION

The word of the day is EXTUBATION!!!!

at 1:42 pm the tube came out....

excitement and anxiety filled the room.

We have been here before and in the great words of
Dr. Flower...he won't fail right away...ARGH

Anxiety and dread and more anxiety...
not sure if you can be nervous and have anxiety
but I think I might.

He struggled a bit. Nurse Roni is an excellent nurse and
knew all the right things to say and do. She found the
right O2 mask for Hollis and helped him to cough and
he seemed to be doing ok.

Those first 10 minutes, then 30 minutes and every minute
and hour after are marked in my brain with a simple
sigh of relief!

He is still very tired and weak and on too many seizure
medications.
But
for this moment in time; he is extubated and breating
on his own.

and....

His C-diff is negative. No more isolation!!!

Team Tough is rejoicing in the smallest victories!!!

Faith is not without worry or care,
but faith is fear that has said a prayer. ~Author Unknown

Thursday, April 17, 2013 7:25 PM CDT

Sometimes the questions are complicated and the answers are simple.”
¯ Dr. Seuss

That is what is going on in NTMICU#4

To me the answer is so easy...
Hollister is overserved with too many and too much
seizure drugs.
He is now on 6 different medications....

It seems very simple to me.

Extubation has been on the table for a couple of
days.
He has tolerated lessor settings on the ventilator.
Hollister is coughing up the junk from his lungs.

He has started sitting in the chair and sitting at
the side of the bed in the therapy. He is WEAK.
I guess 5 weeks in the bed intubated has made
his body struggle.
This is always so hard to see.

He is trying to wake up. I have been turning on
"the rice is pright" each morning trying to get him
interested. I have watched a lot of baseball and
on Sundays Hockey. Sports on TV has always been his
favorite. I occassionally sneak a a girl movie!

Team Tough is feeling stuck and spinning
our wheels.

Tuesday, April 16, 2013 9:15 PM CDT

The Tax day was yesterday, I always laugh at the thought of
Hollister as a child worrying about having to pay taxes.

I chuckle to myself when I think of Hollister as a 5th grader
at St. Theresa.
In the fall, the 5th graders have the option of learning to
be an alter server at Mass.
Of course, Hollister was very excited at this.

On a Saturday a few weeks after training, he got a call to
serve at a funeral.
He was pretty excited and nervous as I dropped him off at the
church.
When I picked him up he was so excited. He was unaware that
usually alter servers get paid a little something from the
family.
He got in the car beaming that he had gotten paid $10.
The was real money for work. He was planning on what he could
buy with his new found windfall.
I told him ever so factually, that the $10 was considered
income and that he would have to pay taxes on that $$$$
He immediately wanted to know how much and why.....

He was never to happy so hear that I was kidding him and
that the whole $10 was his.
That is probably why Hollister who never got to work or pay
taxes dreaded them so much!!!

Hollister is still intubated. He is still looking better.
But..
all the extra seizure medications are starting to sedate him.
Which will make it more and more difficult to extubate him.
ARGH!!!!

"All human wisdom is summed up in two words -
wait and hope”

Sunday, April 14, 2013 9:52 PM CDT

The no seizure trend continues.
Which makes us all very optimistic.
Unfortunately, his medications have been increased and a
new one has been added. This will all have to be dealt with.

Hollister has been more awake each day.

Today he was smiling and trying to laugh at his nurse, Roni.
She was so excited that she called for the neurologist to come
in and see Hollister. He came right in and was quite
impressed by how alert and happy Hollister was at that
moment.

All of this is good for the soul.

He seemed to rest well

I am getting anxious to get him up and moving.
He is very weak. No physical therapy has been started.
I am going to bring it up again this week.
This will do him and his lungs a world of good.

ON this dreary Sunday, we are very excited and more
optimistic than we have been in a long tme!

Faith and optimism are contagious.
THOM S. RAINER,

Friday, April 12, 2013 11:03 PM CDT

Another long day.

Hollister seizures continued like the last 2 days.
Very little relief.
Nurse Roni, (Hollister's weekend gal)came in this morning
and did not like what she was seeing. She called the Doctor
to "clarify" a vallium order. At home, I give Diastat(20 mg rectal vallium)
She got an order for 20mg vallium through his g-tube.
So, after all of the morning "cares" she gave it.....
Neuro was in a looked at the EEG and decided the seizures
hadn't changed much since Wednesday. He felt comfortable
taking the wires off his head and giving his poor scalp a
rest.
He told me we could spot check him as needed.
That seems to be a great idea, those wires are very uncomfortable.

He was finally resting!

As of 12:22 he didn't have another seizure!!!!!
that we could see!

I think everyone here stepped back and took a deep breath!

His fever was coming down, he appeared to be resting.

I asked for the brand name topamax. So, I feel like my
brain is still trying to fire some neurons.
It will be here tomorrow.

Again...Generic seizure medications SUCK!!!!

His lungs still needs to get better.
His colon still needs to heal.

Today we are rejoycing that the seizures have stopped
and every minute that passes...

Thank you to all the nurses and unit that bought me pizza
for my lunch..
The compassion is overwhelming!!

Team Tough remains humbled!!!

No matter how good or bad you have it,
wake up each day thankful for your life.
Someone somewhere else is desperately fighting for theirs.

Thursday, April 11, 2013 9:13 PM CDT

Another day, much like the previoius one.

Hollister continues to seize and most of the time you could
set your watch to it. The percussion vest, BP cuff, any
touching, talking, moving, and sometimes breathing will
cause him to seize.

The nurse is giving extra ativan/versed/vallium with very
little relief. The nurses are doing a good job of coordinating
his care, limiting the amount of times he is touched and
moved.

Topamax is being started today. I hate new drugs. There is
always the fear of the unknown. I am optimistic it will
help control the seizures long term. The plan will be at
some point to eliminate one of the other drugs.

The bad news...
Seizures are enough!

More pseudomonis in growing in his lungs, even with the
antibiotics. Not good. The is great cause for concern.
CXR again looks awful and disheartening.
The c-diff wil continue because of the zosyn for the lungs.
Hollister is in a vicious circle that he needs to get out
of.
Permanent lung damage is possible and I can't even think
about what was said about the colon...all NOT good!

My heart hurts!

Then, good ole Dr. Flowers(the intensivist) comes in.
Now, he is very smart and I am not disputting that.
But...
I sometimes don't like what he has to say and today was
one of those days!!!!

Tracheostomy, doubting the seizures stop and be prepared for the
worst.

I am strong and I reminded him just what I thought!
and none of the above are in my immediate plans.

He is a nice guy and I reminded him to be smart and I
would remain hopeful!

Team Tough is fighting the good fight!!

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
¯ Emily Dickinson

Wednesday, April 10, 2013 10:46 PM CDT

YIKES!!!

As days go, everthing about today sucks!!

Hollister had a rough night.

He droppped his sats around midnight.
You could hear that he had a big rattle in the back of his throat.
It was hard to get with a suction or even a deep suction.
Unfortunately, he got some breaths with the AMBU bag.
Everything that was in his throat was pushed right into his
lungs.......

His breathing was a little more labored.
He dropped his sats around 5pm, the respiratory therapist
was in the room. I noticed unfortunately, that he appeared
to be seizing. ARGH...
Once the seizure stopped he was able to cough and up came
his oxygen saturation.
Wondering now, if when his sats dropped earlier, if he was
seizing and no one noticed.

By 0630 this moring he was having some pretty good sized
seizures.
Medications didn't seem to touch them.

0800, EEG was here hooking up the continuous monitoring...
again! His poor scalp and forehead!
His seizures were getting bigger and lasting longer.

The neurologist was in the room and was watching as the
EEG was started. The EEG tech is very familiar with Hollister
and what is his normal brain waves. This was very helpful.
The good news is he is not in status. Which means his brain
is not seizing continuosly.
The seizures are not tonic clonic. They appear to be focal
seizures coming from both sides of the brain.

She gave a bolus of vimpat and phenobarbitol.
She noticed that the vimpat didNOT help the seizures on the
monitor. She decided to wean him off. Glad of that, I will
now list this as an allergy. Never again.
It was decided that he would not be started on the pentobarbitol
again.
I am OK with this, but what is going on is very very hard to watch.

His temperature is up! It was up to 103.3. The room is so
cold, it is hard for me to believe. Checked it on three different thermometers...
Ice and a cooling blanket are being used.
The room is very dark and very cold, and very quiet.
Blood cultures and urine have been sent.

Dr. Flowers came in and heard no air in his left lung.
A CXR confirmed a large Mucous plug and he would need to be re-intubated and a bronchoscopy..
He approached me and asked me if I was absolutely positive
that I wanted to do this.
He reminded me that Hollister is very sick and dying.
I told him, that I definetly want him to be intubated,
bronched and all that needs to be done.
I do indeed understand he is sick.

He wasn't very happy and neither was Hollister, but we did what we have to do.

Hollister is still seizing. Any stimulation, by him or in the
hall or room makes him seize.
Again, this is very very hard to watch.

Team Tough is hurting!!

A handful of patience is worth more than a bushel of brains.
~Dutch Proverb

Tuesday, April 09, 2013 9:23 PM CDT

Monday was a pretty good day.
Hollister was awake and alert. He was very responsive to
the nurses. He was looking and around. Could have been
extubated but one more day won't hurt.
Seems like those are always famous last words.

Monday night he seemed to be gagging on the tube more than
usual. His gag reflex had returned with vengence.
Hollister started vomiting and of course Dr. Flower came
in when the nurse yelled for help..
Yep, aspiration. Yucky, yellow pills/tube feeding were
being sucked from his ETtube. DAMN
He flushed the tube with saline and hopefully got it all!!!

Then this morning, he puked again with suctioning by the
respiratory student. I couldn't she started to step away to
get help and I told her very sternly, never leave a patient
and keep suctioning.
I got the nurse and she helped and I do believe
he did not aspirate any more.
Hollister has had some very good nurses!

He got some zofran for nausea and slept it off.

he woke up and looked pretty good.

He was extubated at 5:05 this evening. It was very tenuous
for the first hour but he did well after that.
I was suctioning anything he could bring up.

Every hour that passes I start to feel a little better.

Team Tough is celebrating, just not very loud.
He has a long way to go!

Sometimes the questions are complicated
and the answers are simple.
Dr. Seuss

Sunday, April 07, 2013 7:38 PM CDT

The Pentobarbitol was shut off this morning.
I thought it would me yesterday, but we went even
lower before stopping it.

The good news is that the dose was so low yesterday,
that Hollister started showing more signs of responding
and waking up. Very Nice to see.

Hollister had a good day today.
Lots of interactions with the nurses. He was awake
and responsive most of the day.
It is nice to see that he is moving forward.

Have seen no seizures since the first bolus of the
pentobarbitol. Nice to see his body resting.
I am very hopeful that these are the last of them.

I am kind of nervous about his medications.
When his dilantin is high he gets very lethargic
and vomits...His dilantin was increased to three times
a day and almost three times what he gets at home.

He is also still on the Vimpat. We tried this last year
and it didn't help a bit. Kind of worried about this.

Hollister as of Friday is finally getting the brand
name Keppra. Still IV but brand name. I think this
has some part of this.
When I brought it up the to the neurologist last week.
I asked him to appease a tired old mother and get the brand
name Keppra. He rolled his eyes and remembered that this
was an issue last year.
We were Celebrating when it finally got here!!!

Hollister looks good.

Here's hoping Team Tough is on the right path!!!

“It's true all the time everywhere or it's not true!
And that one truth is always Mystery.”
¯ Richard Rohr

Friday, April 05, 2013 6:20 PM CDT

Some days you eat the bear
and
some days the bear eats you.

The way the day started, the bear was definetly winning.

I don't have a lot of days where emotions run so high
but today was one of those days.

Weakness was definetly shown,
and I hate that!

A different neurologist started today. I felt like we had
a plan set for the weekend. (this is the same neurologist
who aborted the plan to NOT increase his seizure meds on
Wednesday...)

He came in to see Hollister and was very indifferent in
his attitude toward Hollis.
Then, he did NOT lower the pentobarbitol..
my fear for the entire weekend was that he would let
Hollister sit at the status quo...

Progress needs to be made as we are
getting very close to the amount of days
intubated before a trach.

He left and I was talking into Hollister's ear, trying
to hug and love him...
and in walks our nurse Nick, with Jean, and Roni...
I started to choke and my eyes welled up.
and much love was given to us.

Roni immediately called and got the pentobarbitol lowered to .5mg/kg/hr and the weaning continued.
Jean bought us lunch.

and my embarassment lasted all day!!!

I hate when I show everyone just how human I am!

Team Tough is very Human!!!

Faith is not for overcoming obstacles;
it is for experiencing them—all the way through!”
¯ Richard Rohr

Thursday, April 04, 2013 3:47 PM CDT

Another long day in ICU#4.

Hollister continues to be without seizures.
Thanks to the pentobarbitol.

The neurologist came in this morning and started to wean
the coma/sedation. He only got to 2mg/kg/hr. So today,
after reviewing the EEG, it was lowered to one.

It is nice to see his body resting.
All of this is at a cost.
A resting body doesn't cough or move allowing for the
pneumonia/aspiration to take over.

The antibiotic regime continues. Zosyn for the lungs and
vanco for his gut. They really are working against each
other.

I am so ready for Hollister to be better.
I feel like he is in some awful circle.
Fever, infections, seizures. What are causing what.

Team Tough needs thoughts and prayers.
Team Tough needs a U-turn!!

Remember,
if you’re headed in the wrong direction,
God allows U-turns! ~Allison Gappa Bottke

Wenesday, April 3, 2013 2:36 PM CDT

Things in ICU#4 have taken some serious steps backward!

Easter was a nice day. Hollister was restful. Appeared the
seizure and presence of C-diff weren't causing him any
difficulties.
Monday, he looked good. He did great on the c-pap weaning
mode. The plan was extubate him on Tuesday morning.
GREAT...

Not to be :(

He started seizing around 0630. Of course with the start of seizing, Hollister has to throw up and around the tube, causing more risk to his lungs!!!!
Hoping we caught it early.
Of course in Hollister style, he kept seizing. Neuro came in
and we were going to try a course of Versed to sedate him
and stop the seizures.
Continuous EEG, again.

The Versed finally started to work and by 3:30 his brain
started to rest.
The Versed went up to 30mg/hour around 5pm.
the seizures started again.
His regular medications were increased.

Again
Not to be :(

Neurology came in this morning and ask about his
seizures and how big they were. The nurse(Nick) and I
told him very small. On the EEG, the were very big and
and lasting 2-3 minutes.
I hate to think how tired his brain is from doing this
all night.

Unfortunately, the best course of treatment will be to start
the Pentobarbitol again and have him rest in the coma.

The medication started at 11:00 with a big bolus and it
shut his brain right down.

Now he rests.

I am hoping that the rest of body rests and is ready
to keep fighting!

Team Tough is in need of lots of good thoughts
and prayers.

Sunday, March 31, 2013 5:21 AM CDT

Happy Easter

He is Risen, He is Risen indeed.

This is the third time we have spent Easter in the ICU.
2 in a row is little too much!
I am thinking I might see a pattern here.
"Here's your sigh"...
I guess Hollister is rebelling at Easter, probably all the extra
hours at church from his childhood.
I do know one thing, next year and I am not getting one
Easter decoration out!

I am very lucky that I grew up with parents who took us to
church. It wasn't an option of going or not going until high school.
I watched how my parents lived and without doing anything
out of the ordinary, my faith grew. I watched my parents
make sacricfices for family and take care of my Gramps and
Grandmas. They have always been first to show up to help
someone in their time of need and as a small child I learned.
Always put others first.
They have no idea how truly good they are!
I do know, that I know.

To thank them, I too have raised my children with tremondous
faith and strength. I feel very fortunate in a less than
perfect world my children will always have thier faith to
get them where they need to go.

On this Easter morning, I am relying on my faith and hope more
than ever.

Hollister had an awful day yesterday!!!!

It seems yesterday was one of those trying days.
Sarted out with the nurse sending a stool sample...ARGH
I almost cried and choked.
So, three hours later confirmed C-diff.
A nasty little bug in his colon. Last week contstipation,
this week infection..
We have been down this road before in 2006, it was ugly
and extremely difficult...
but...Hollister's nurse Ronie was on it and sent a sample
to lab first thing, and lab was running those yesterday.
In 3 hours, they were ordering antibiotics and treatment had
started....

Then the sputum washings that were sent after the Bronch on Wednesday
are growing something new...ARGH
I knew he had pseudominis and pnuemonia.
Now, a new bug! ARGH!!!

Now, waiting on Infecious Diese. This is never good for Hollister!!! or me!

She got here around four. My anxiety was in high gear by
now!
Ronie(the nurse) was right. She was very nice!
As expected, she was way smart!
She told me that the bug that was growing was part of the
normal flora of the lungs and it is not uncommon for things
to get our of whack with extended intubations and anitiotics.
I almost cried, I felt such relief!
She will follow a long and made some changes to the antibiotics
and will make sure lungs and gut heal.
Asking God to stop the bugs! Hollister has always been a
big sponge.

My heart and gut were finally settling down.

Hollister is now in "isolation" for his poop bug.
So, this means gowns and gloves to visit him!:(
I sat out and ate with the family..
Came in an hour later and Hollister had just finished with
a grand-mal seizure! ARGH

Again, on of our favorite nurses Ann, made some good choices
and a great assessment.
Nices to have nurses, that truly care about Hollister.
We always had that at Blank, and now we have that here!
Makes a hugh difference during difficult times!

It was only 8:30pm and it was going to be a long night.

I watched and so did ANN..
No poops or seizures!

Now, I have showered and I am ready for whatever this
joyous Easter day has in store!

Team Tough is holding strong and ready for spring!

Marcie: What do we do with the Easter eggs now that we have them, sir?
Peppermint Patty: We eat them. We put a little salt on them, and we eat them.
Marcie: [eats her egg, still with the shell on, and gulps it down] Tastes terrible, sir!

Friday, March 29, 2013 10:58 PM CDT

Good Friday..
Saddest day on Earth...

The cross was two pieces of dead wood;
and a helpless, unresisting Man was nailed to it;
yet it was mightier than the world,
and triumphed, and will ever triumph over it."

- Augustus William Hare

We have been here 2 weeks. I had today as my target date
to go home. Even heard a little rumor last week that we might..hahaha
I thought we came in last year on Good Friday, we should
go home this year on Good Friday.
A 2 week hospital stay for Hollister is nothing. I told one
of the nurses, 2 weeks you don't even need to shower or change
your clothes for a short stay like that.

It is not to be that we are going home.

Hollister continues to be intubated..ARGH
His CXR continues to show nasty things.
but the good news is that the seizures have stopped.
The versed sedation has been weaned off this morning.
Now, he is intubated with no sedation!
That would be extremely difficult. Fortunately, he is
still sleepy. He does wake up and he isn't very happy!

Trying to focus on the good.

Team Tough is staying strong!

Wednesday, March 27, 2013 10:40 PM CDT

what a difference 12 hours makes.

Hollister had a great morning.
He was off the c-pap at about 11am
He sat up in a chair. He looked good. He was smiley, bright
eyes and very alert.
His vital signs were stable.
He was coughing up some nasty stuff. I being the official airway
protector from his Blank days, was manning the suction.
I was able to get quite a bit of mucous/snot.

He made it almost 2 hours with only a nasal cannula.
Unfortunately, he was wearing out. He is definetly very
very weak.
He was slid back to bed around 2ish. A therapuetic vest
was placed on him for more of that percussion of his lungs.
It is for 20 minutes continuous on his entire chest front
and back. It is awesome.
Makes him cough and bring up a lot of stuff.

Unfortunately, he started having some small seizures.
The neurologist came back up and we had a nice discussion.
It was very apparent we were on the same page. I don't get
to say that very often, but I like him.
He thought that the seizures were being pushed by his lungs.
He said he could continue to fill him full of seizure meds.
Eventually, he would have trouble with is breathing.

Hollister continued to seize and they were getting closer
together, lasting longer and getting bigger. It didn't look
good.
The bigger grand-mal/tonic clonic seizures were also causing
him some breathing problems.
Everything seemed to be getting out of control.

The intensivist was on the floor and Hollister's nurse told
him we needed some king of airway management, he needed
to be intubated.
ARGH!!!

Much to my dismay, Hollister was intubated at 4:30 this
afternoon.
A bronchoscopy was done right after that with the intent
of suctioning out the mucous.
Much to our surprise, the Doctor said his lungs looked a little
better than the x-ray.

All of that coughing, suctioning, and precussing hopefully has
made the difference.

His seizures finally lessoned significantly when Hollister's very
smart young(Hollister's age) nurse gave him some vallium.

He is lightly sedated with versed 10mg/hour. So different
than the coma last week. He is awake and moving.
Hoping the seizures are slowed if not stopped.

Another night in NTMICU #4....

Team Tough has had a long day with many ups and downs of
the roller coaster.

If you woke up breathing, congratulations! You have another chance. ~Andrea Boydston

Wednesday, March 27, 2013 9:53 AM CDT

My Hillaree always says we are passengers on
"the Struggle Bus"..It always makes me laugh and I truly
believe we may be driving the bus!

We are struggling!

It seems when Hollister is sick, we all struggle.

Hillaree and Harrison have had the last 12 years learning
how to live with their beloved older brother's illness and
what it entails.
Growing up, they always had each other to lean on.
Now living apart, it is much more difficult.
Neither one, has learned to share and express what they
are thinking or feeling outside of the comfort of our family.
Hillaree is very protective of her brothers and it is very
difficult for her not be her loving on them and taking care
of them. She forgets to take care of herself and always puts
others before her.
Harrison keeps busy! Sometimes too busy.
I am very lucky they are good kids who have made good choices
even riding on "the struggle bus"!

Hollister did well with the extubation until about 0230 on
Tuesday morning. He was coughing up a lot of crap!
He was unfortunately, placed on c-pap. It is a pressured
mask hooked to the ventilator forcing air in to his lungs.
It has to be placed very tightly on his face and in 2007
he had a very large breakdown of skin on his nose from c-pap.
He still has a divot of tissue missing.

Yesterday was a very difficult day. He continued to have a
seizure or 2 every 12 hours. The last one was around 2 in the
afternoon.
Neurology had seen them on the scan and made some medication
changes..
He also had the continuos EEG taken off late afternoon.
That had to be a relief. 9 days of having those electrodes
glued to your head is enough! He never liked that!
Hopeful a hairwashing and scratching of the glue is in his
future!

Breathing even with the c-pap has been tortorous!
He has been able to cough up quite a bit of thick
mucous.
It seems that re-intubation is looming.
My heart broke.

About 4pm yesterday he coughed up a huge mucous plug
and his breathing got better. The nurse suctioned and
suctioined.
What a difference.

That was the plan all night and he did well with the c-pap.
His numbers started looking better.

He looks much better this morning.
This morning he has done well. Respiratory started to
elctronicallly percusse his lungs and boy does he cough
afterward.
He has been a wake and he has very sad/ mad
eyes.

His CXR this morning looked much worse...The nurse came in and gave a little
warning.
ARGH!!!

Will have to wait to see what he does and what plan the
doctor has.

I have been given a heads up that intubation looms with a bronchoscopy!

Hollister is strong and amazing
He is keeping Team Tough fighting!!

Hopefully, off the struggle bus soon!

Monday, March 25, 2013 11:52 PM CDT

Hollister is definetly on tough young man!!

Extubation was at 12:45 today.
OH BOY!!

The ventilators got a new program on them since we were here
last year. They added something called smart care...
What ever that means.

What I do know is, that Hollister was switched to the C-pap mode
on the ventilator around 8am. It is used in weaning but not
always.
This new smart care at 10:30 posted on the ventilator screen.
OK to seperate patient from machine
Probable extubation OK.

Well, if it was good enough for smart care, it was good
enough for Hollister.

Dr. Flowers came in around 12:30 and said he thought we should
go for it. He said if he isn't ready, he will put the tube
back in.
ARGH!!!!

12:45 OUT!
Hollister had a look of relief and terror on his face.
It is a rough anxiety filled moment.
In Hollister style he did great.
First 10 minutes flew by. Somewhere on this journey, I was
told the first 10 minutes are crucial.

His vitals looked good. The nurses got him up to reclining
therapy chair and sat in that for a couple of hours. He did
well.

but, as we all know, there is gonna be a but....

Unfortunately, he had some very unwanted seizures around
3:30. My stomach started to hurt and my heart sank.
But, I also remembered he is fighting the pneumonis and
lowering his seizure thershold.
Justification in my life is needed and appreciated.

He got his medications and little something extra.
I will be curioius to hear what neurology has to say.
The continuos EEG is still going. That should be very
helpful.

Hollister was doing a great job of recovering his O2 sats
after the nursed repostioned him. He was also coughing up
some crap from his lungs. It was all good.

9pm, we come back in the room after his bath..
and he has a high flow metered O2 mask on instead of
the nasal cannula.
He is breating hard and his O2 sats are in the 80's...
Not good.

It takes some time but he will cough up what he needs to
and then settles back in. The mask, I guess is way better than
the tube/ventilator.

Team Tough is gonna have a long anxious night.

Did I mention how much I hate nights in the unit!

Sunday, March 24, 2013 11:32 PM CDT

Saturday, Hollister looked even better than Friday.
I have been overjoyed at all the progress he is making.
The ventilator was changed Saturday night. It's new setting
has Hollis doing most of the work. He apprears to be in no
distress and is doing a great job overbreathing the ventilator.
He is sleeping Soundly!

Hollister is certainly waking up.
His eyes have been open today and I believe he is responding
to me. He looks at me and he sure looks sad.
There is a fine line for Hollister. I think sometimes since
he doesn't move a lot or try to pull out his tube;
that doctors don't give him any sedation to lie there
hooked to a maching doing all the breathing for you
Seems someqhat barbaric.
Last spring the ICU intensivist at the Mayo Clinic listened
and figured it out and made extubation possible.
He continues to sit between the rock and the hard place we
call home.

Unfortunately, he is now tired from all the work of breathing.
I was kind of hoping the doctor might turn the
ventilator to more controlled breathing to let
Hollister rest, so he can work on extubation tomorrow.
We will see how the rest of the night goes.

Team Tough is anxious to get the ET tube OUT!!!

Friday, March 22, 2013 10:14 PM CDT

Hollister is on a roll.

The pentobarbitol was stopped at 815 this morning.
I feared it would take him days to wake up. He had been
unresponsive to anything and everything.
There was no coughing, gagging on the tube, no deep stimulation
to pain, nothing. He was in a coma.

Much to my dismay and happiness. He responded in less than
12 hours to the nurse deep stimulating his feet. He moved them.
We were joyous. Was not much later we the nurse and I
noticed he yawned and was gagging and chewing on the ETT.
Again, we were joyous. I kept thinking, WOW this is amazing
and so is Hollister.

His seizures have stopped and now he is starting to wake up.

It wasn't much later Dick and Hillaree and Harrison had
returned from Florida. I was so happy to see my family!
Sounds like they had the best time they could.
I was glad they went but I was very happy they were home.

It has been a couple of trying days. The whole contipation/bowel
issure was rough. I am hoping that the pneumonia will start
to respond to the antibioticas and disappear.

It has been a long week here in ICU#$4.

Team Tough is whole again and very optimistic what lies
ahead.

Thursday, March 21, 2013 11:47 PM CDT

The word of the day has been POOP.
actually, the words since Wednesday were
NEEDS TO POOP!

10:00am this morning there was a poop dance going on in #4!
Wasn't a crazy amount but enough to get the surgeons to
calm down.

It has been a week. Not sure if it has gone fast or slow.
I lose track of the days and usually the hours.

Wednesday his gut became quite the issue. It was around supper
time an abdominal x-ray was done, boy was I nervous.
He had a bowel obstruction, why....
My common sense kept telling me it was from the medication
like I had been warned or it was from the small bowel
perforation at Blank in 2006. (that damn small bowel perforation
has haunted him 3 times now...enough!! I continue to have ill
thoughts of that radiologist!)
It was deemed necessary for the surgery and GI consult.
This is where it gets painful for me..I used to know all of
the surgery residents and surgeons. This is my comfort zone
when you are a nurse in surgery!
but, now working in surgery and with a very small amount of
knowledge, your mind can terrorize you!
not to mention the thought of unplanned anesthesia!
So, I continued with my uneasy stand and weave by the bed.
Talking with everyone, giving his history and hoping for the
best.
My niece Jamie walked in and I told her we had work to do.
She and I exercised his legs for quite awhile. Somewhere deep
in his soul it had to feel good to get his legs and hips stretched!
Truly, with the hopes of poop!
GI game in around 10:00pm and was very nice, much concern!
She had them put in a NG tube to try and decompress the gut.
She said, he had and ileus with a lot of stool and air!
That would explain the bloat!
Tonight, she was still concerned. She did a few things to him
that I am very thankful for that he won't remember.
She did get some things moving.
She giving some colonoscopy prep through his button in the
morning and starting his food very slowly, hoping to get
his gut started in the right direction....out!

He has had no seizure activity! He is still on the pentobarbitol and in a coma.
He is being weaned off the medication
very very slowly. It should be totally off at 8am Friday.
I am very very fearful it will take him a long time to wake
up. He has gotten an extreme amount of the medication along
with all of other seizure medicines. Kind of nervous!

Team Tough is ready to start healing!

God give us only what we can handle.
Apparently, God thinks I am a bad-ass.
BAHAHAHAHAHAHAHAHAHA

I know for certain Hollister is!
Toughest man in town!

Tuesday, March 219, 2013 11:48 PM CDT

Here we are in #4 NTMICU and we certainly are having no
fun.

Hollister continues with the pentobarbitol coma.
Which I have to say, I DO NOT LIKE! I DO NOT LIKE!
way different than intubation with sedation!

They have started the weaning process of the drug but
it doesn't appear he will be waking up any time soon.
The continuos EEG is still very flat. No seizure activity.
Unfortunately, there isn't a lot of brain activity either.

He does now after being here and intubated has the dreaded
pnuemonia, psuedamonis vartiety. His temp and white cell
count continue to increase. DAMN!

He spent the better part of yesterday puking. Seems unlikely
in a coma, but it just comes out. It is a continuous thing.
Not sure why, I believe it is the Dilantin level is at a
high toxic level. Time will tell. He is not getting any
food or most of vitamin cocktail, trying to keep his gut
quiet.

More pressing is the fact that he is bloated and constipated.
His gut is rock hard and it isn't his abs!
Tried several options yesterday with no luck. Fearful for
what is ahead.

He doesn't look comfortable like he did on Monday. He is
pale and looks puffy to me.

Ready for him to be home!

Team Tough is praying!

Sunday, March 17, 2013 11:56 PM CDT

Happy St. Patrick's Day...

St. Patrick where are you, Hollister needs you to intercede
for him!

Intercessory Prayer to St. Patrick

Hail, glorious St. Patrick, dear saint of our isle,
On us thy poor children bestow a sweet smile;
And now thou art high in the mansions above,
On Erin's green valleys look down in thy love.

(optional repeat)
On Erin's green valleys, on Erin's green valleys,
On Erin's green valleys look down in thy love.

Hail, glorious St. Patrick, thy words were once strong
Against Satan's wiles and a heretic throng;
Not less is thy might where in Heaven thou art;
Oh, come to our aid, in our battle take part!

In a war against sin, in the fight for the faith,
Dear Saint, may thy children resist to the death;
May their strength be in meekness, in penance, and prayer,
Their banner the Cross, which they glory to bear.

Thy people, now exiles on many a shore,
Shall love and revere thee till time be no more;
And the fire thou hast kindled shall ever burn bright,
Its warmth undiminished, undying its light.

Ever bless and defend the sweet land of our birth,
Where the shamrock still blooms as when thou wert on earth,
And our hearts shall yet burn, wherever we roam,
For God and St. Patrick, and our native home.

Holliser made it to the NTMICU around noon on Saturday.
It was long night 20 hours in the ER.

Coming back to the unit is a mixed bag of emotions.
When we got to the room and Hollister was moved into the
bed, he relaxed and smiled at all of the nurses loving on
him. I know he felt all the positvie energy from them.
It is like coming back to see old friend.

It has been torture watching him struggle so. He would have
a few hours where the drugs would sedate him and he appeared
to be resting, then bam!

Through the night, it was decided that he would more than likely
need to be intubated..ARGH

He went down for a CT of his head around 11 this morning.
I have to be very specific about information from any head
scan or mri. fortunately it was unchanged from last year with
no bleed!

Our beloved Father Kirby stopped by to annoint Hollister and pray with us.
He is so important to Hollister and our family.
Blessed to know him.

He was intubated aroung 3pm, again not my favorite thing
to be a part of. It always seems so rough with some very
tenuous moments.

Seizures continued and my heart was breaking watching him
struggle so.

The epitologist decided to induce a pentabarbitol coma.
AHHHHHHHHH
we have never had to do this before!
Never had pentabarbitol before and I don't know how he will
metabolize it.

Continous EEG started, pentabarbitol drip, and now we
continue until his brain waves are mostly a flat line with
a few bursts. The medication is increased until this happens and
as much as his blood pressure and vitals can withstand.

He is quiet and appears peaceful.

Team Tough is anxious.

Happy St.Patrick's Day!

Dick and Hillaree and Harrison made it to Florida.
Hoping they have a great time.

Friday, March 15, 2013 11:26 PM CDT

Beware of the Ides of March

It seems to me that maybe this message was for Hollister.

Seizures, seizures, seizures.

Monday night, Wednesday night, Thursday, Friday.

Today was the start of what we thought was a family spring
break. Harrison came to us last fall and asked if we
could take a family spring break trip. Last year we went
in shifts.
We all thought it was a good idea and Hillaree teachers
even let her have a 2nd week off.

Hunting gathering and packing was a slow process with all
of Hollister's seizures and a quick trip on Wednesday for
Mock Trial competion.

Even as Hollister was seizing friday moring we were all
determined to pack up and go.

We stopped about an hour out of town and gave Hollister
20mg of diastat. Hoping this would put an end to these
nasty little seizures.

Was not to be. We were now 2 hours south of Des Moines and
we headed back to Mercy. It was a long car ride.

We arrived at Mercy this place was packed.

We finally make it back to the exam room, each of had a
little hope that these could be fixed quick!

We sent Hillaree and Harrison on an errand out of the
hospital. Trying to get there minds off what was happening.

He was going to be admitted, a central line placed in his
neck, labs, blood cultures, EEG, 12 lead EKG, foley,
was a very busy place. Hollister continued to seize.

What we have learned is that we are not going on vacation
and there are no ICU beds. Hollister and I will be sleeping
in a very small exam room in the ER with one very small
hard chair.

Gonna be a long sad night.

Team Tough is hurting!

Saturday, March 9, 2013 12:01 AM CST

Happy 26th Birthday to Hollister.

Him and I are watching a little Jimmy Fallon and I am
singing Happy Birthday...He appears to really like my
singing as he is laughing very loudly and his smile is
very very joyous.
I believe he is very excited about his birthday.

I know in this house we are very joyous about his birthday.
What Hollister went through last spring for 2 awful months was
hell on earth.
The things that this family faced changed us all.
We are stronger yet weaker, we are joyous but sad,
we are closer but farther apart, and we are still standing
with our beloved Hollister in the middle. He is the glue
that ultimately bonds us.

He no longer shares his thoughts and words with us. I
spend nights looking into his eyes with amazement and
wonderment that he is still very expressive. He doesn't
share with many but I feel very blessed to be so close to
him. Sometimes, I feel his hurts and his pains so vividly.
But, I also feels his joy and laughter and love.

Another milestone, another day spent wondering what might
have been. There have been so many lately. It is hard to
see his classmates married, finished graduate school, and
having families. Nieces married and having babies, sisters
becoming grandparents, and friends living lifes that I don't
recognize. I am joyous and happy for all but it is difficult
to know what Hollister will never have.

I know how truly happy we are that Hollister is still alive on
his birthday; at age 26. I wonder how many of you on your
childs birthday give thanks for the fact that they are
alive.

Happy Birthday to Hollister!
Team Tough is celebrating!

Because time itself is like a spiral,
something special happens on your birthday each year:
The same energy that God invested in you at birth is present once again.
~Menachem Mendel Schneerson

Monday, February 11, 2013 10:59 AM CST

LIFE ISN'T FAIR....lesson of the week!

Last week was a long week for Hollsiter and
he certainly paid for it....

His appointments at the Mayo Clinic we as I feared...
nothing new...and he needs more therapy.
Orders can and will be written!!!
but...
no where to go!

He did meet the new Gastroenterology team...
and they seemed ok..Thought I was doing a good job with
his gut...

He has had multiple seizures...starting on Friday night...
last until last night...

I am sure he is exhausted. He went a lot of place last week.
Including wrestling Districts on Saturday. He seized before
we left..I should have stayed home!

but went anyway!

If anyone wants to know how Harrison did at Districts..
The answer is I don't know.
Maybe 3rd...Maybe 2nd....
He was wrestling for 3rd place and a chance to wrestle back...
which did fall into place..The guy that beat him won the districts....

but...
During Harrison's match at the end of the regular 6 minutes
was tied 6-6. Apparently, I was the only one keeping score.
The Ref raised the other kids hand and ended the match 5-6.....
We yelled at the coaches..and he checked the score sheets and
it was certainly 6-6...Even the DCHS mat girl had the right
score....
But NO ONE said a thing...

The DCHS coach...was apologetic for not paying attention...
2 coaches sitting there, 1 ref, 2 men at the scorers table,
and a mat girl...and not one of them knew what was going on!!!
and I guess it isn't fair....Really, NOT FAIR!!!
Thank you for smashing him!
Well....I made Coach look at Hollister and reminded him that
nothing at our house was fair and how was I going to make
this OK...because now he had hurt Harrison and I have to try and make this ok...

The kid that took second, Harrison has beaten before... We will never know if
Harrison got 2nd...or 3rd...
or how he would have loved to wrestle at
state and to be with all of his friends
and be included!
unfortunately, no one knows what happened...
and as usual, parents assume Harrison wasn't
good enough!

Oh Yeah...life isn't fair...

any further questions can be referred to....

Alan Beste, High School Athletic Association

Nice of the Coach to offer Harrison a pass on the floor with
the rest of the team... Hoping this makes things more FAIR!!

We learned about honesty and integrity
- that the truth matters...
that you don't take shortcuts or play by your own set of rules...
and success doesn't count unless you earn it fair and square.
Michelle Obama

Saturday, February 2, 2013 9:21 AM CST

Planned to get an update done earlier...

"the road to hell is paved with good intentions" haha

Guess today is Ground Hog's day...
whatever it means...I am sure we have a lot of winter left!

There is a class up in Jackson, MN...Mrs. Johnson's class who
continues to think of Hollister. They sent a wonderfull Christmas card...
and they continue to send him notes, texts, and lots of good
wishes...I am thankful for them!...and Mrs Johnson, too....

Harrison had a writing assignment and we were forced to read
caringbridge from the past...Wow. that was tough...
It is extremely hard to face what you have lost! We got what
he needed and shut it down...both with tears in our eyes and
our hearts broken... I know how much he misses "his" brother every day!
They were like peas and carrots....
not sure who idolized the other more...
Life is hard!

Hollister continues to have some good days and some not so good days...
He is tired and wants to sleep a lot...but I like to sleep
a lot in the winter!

We got some very disheartening news...his last day of therapy was on Thursday...
(and it was too cold to take him)
This is a huge loss for us. He has done therapy since his
diagnosis in November of 2001...
we are stunned and not sure what our next move will be...
or what this means to Hollister.....

Thank You...Principal Insurance!(and the ignornant Nurse
who denied him) You probably don't have a clue what MELAS is
and
how important therapy is to neuro-muscular disease!

We are headed to Mayo tomorrow for his regular appointments,
on Monday and Tuesday..long days for Hollister....
I wish just once, there would be a new thought or idea for
MELAS....
We ususally hear, therapy, therapy, therapy....
and now we have none...

Team Tough is......

Tuesday, January 2, 2013 3:32 PM CST

The high hopes that I had for 2012....failed miserably!

No updates for 6 months...guess we all needed a break.
not sure anyone really reads this or remembers Hollister.

I did lots of soul searching after Hollister's 8 weeks in
the Hospital. He has had longer stays...and they have been
equally disturbing...but this visit was different.
Many things were said and done that cannot be taken back.
Doctor incompetance played a large part of his inability to
recover. His brain is damaged quite severly from the local doctors...Before a doctor assumes a patient is endstage and discontinues treating seizures...they might want to get the
facts straight!

One should examine oneself for a very long time
before thinking of condemning others.
~Moliere
Not to mention the $500,000 our 8 weeks cost us......
That to has been a burden!

The Mayo Clinic was extremely upset with what had
happened...we no longer feel safe...3 hours from the Mayo
Clinic is a long way if and when Hollister needs help.

The nurses at Mercy get the credit for saving Hollister and
getting him transferred...before he died.

My heart is still very heavy and I will never get those nasty
words from my soul!

Glad 2012 is over...

Hollister is still doing therapy at OWL and we like it their
very much!
The therapists are awesome.

He is getting stronger but he is no where close to where he
was last spring.

we survived Christmas and New Years...

Unfortunately, our family has been changed from what happened.
A deep pain is there in all of us.
There are so many elements of what has happened...
We have all made many sacrifices for Hollister....
and to think he could have been gone in a minute...
Devastating.

Our most basic instinct is not for survival but
for family. Most of us would give our own life
for the survival of a family member.
~Paul Pearshall

Thursday, December 6, 2012 11:52 AM CST

Friday, June 1, 2012 11:48 PM CDT

HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME!!

Nice to be home.....pulled into the driveway around 7:30
tonight...Nice to see balloons and welcome home signs...

Made it so nice!!!

I was ready to bring my boy home. I had to do some fast
talking to make it happen...

He week was anything but normal...

He is heart has been beating 145 times a minute....
His lab work has been off, he remains very dry.....
and he had a seizure on Wednesday night...

I thought his dilantin level could be low...and labs Thursday
morning showed that I was right...

He has been in bed way to long...Usually, it takes 2 days
for every day you are in bed in the hosital to recover and
I believe you at least double it for days in ICU....

Hollister has a long ways to go for recovery.

He is weak..and was unable to stand for therapy on Thursday....

Lots of things were said about discharge...mostly that I
couldn't take him until he could stand up....

BUT...

Hillaree spent the last week with me as was a good sounding
board for me...I told them yesterday...that I would be taking
him home today....when Dick got there!

Hollister had an awesome soak in the tub before we left.
He was so happy....and he looked good. even stood and beared
weight in his legs...briefly....

He was still happy and tired when we wheeled him out of
ST. Mary's at 3:33....
He was very happy to be in the car.

We had a stop at the Mayo Clinic to pick up some things...
seemed like forever...

Finally we were on our way....

Hollister was happy to get home...

BUT...

around 09:30 two hours after we were home...he was sitting
on the couch...Hillaree was sitting with him...
and he had the biggest grand-mal seizure I have ever seen.
and it lasted forever...and it took him a long time to recover...

Comfort zone smashed!!!

He is now comfortable in his own bed...sleeping good restful
sleep. I fear, I am up for the night!!!

It is good to be home!!

Team Tough is happy...

Thank you to everyone who reached out to us...
all of the support really helps us get through some
tough days!!!

Tuesday, May 29, 2012 9:13 PM CDT

It has been a couple of days again since I updated on
Hollister's status.

He is doing good...not quite great but good.

It was a quiet weekend here..I forgot it was Memorial weekend.
another holiday in the hospital. Hard to believe we have not
been home since the early morning hours of Good Friday.

Almost 8 weeks!!!!

There is a lot less activity on weekends in the hospital.
Therapy is minimum...

Yesterday, everyone was back. I am still waiting on the social worker...

Hollister remains seizure free...
He finishes his last of the antibiotics for his lungs tonight
at midnight...
That was what was keeping us in patient.

He has been very dry...according to his lab values.
He got a bolus of IV solution that ran at 1000ml/hr...
This is a lot!!!
He tolerated it like a champ!!!!
His heart has been beating out of his chest...
pumping a long at 120-145 beats a minute...
That is way too fast.
The thought was that maybe his being dry...was causing this.....

I worry that he is hiding an infection or bug somewhere....

Will wait to see what the lab work shows in the am...

PT...is a little concerned about sending him home tomorrow.
He is weak...hasn't stood yet, and worry that he will hurt
me...Our house is small and we don't have room for a lift!!
That seems to be everyones answer....
What ever happened to rehab and therapy to get stronger....
There is no quick fix!

I personally am ready to go... I knew when we left the unit
Hollister would have to come Domitillo 2...
I thought I could handle it....but I can NOT....
The nurses seem OK....and the floor is still nice.....

BUT.....

I am struggling being here. This is the the awful place we were
on that awful night...June 22, 2006...will live in my brain
and my heart like D-day...

It was on this floor that day that he drank his last Coke,
and walked his last independent walk, and said his last
words....

This was all taken away from him by this floor and resident
physicians who didn't come....
It took a phone call out of this hospital...
to his pediatric neurologist to get help...
minutes later it would have been too late...
Untreating his seizures lead him to an inbuation and as close
to death he has ever been...

and earlier in that day...he was happy and healthy and his
brain was healing....

In less that 2 hours...
this floor and its inept staff...
Changed Hollister's life forever...
They took everything from him they could...
No more eating, walking, talking, going to college....
EVERYTHING!!!!

and now...I am waiting to see the social worker, who shut the
door and yelled at me for calling outside of the hospital
for help....

I need to get Hollister home!!!

Team Tough wants out!!!

Hollister is awesome...

Please keep him close to your thoughts and prayers....

Friday, May 25, 2012 6:33 PM CDT

Hollister rolled out of the Neuro Intensive Care about
3:30...
He was all smiles as we left..
We had quite the parade..It is a 1/4 of mile from Mary Brigh 8th floor to Domitillo 2...
It was a very joyous walk.

He was giggling as as he made his way into his new room.
He was was finally settled and in came PT...he sat him on
the edge of the bed...and for lying in bed for 7 weeks...
he didn't do too bad!!!
OT has made him two new hand spints...and they look awesome.
Don't seem to bother him at all...

He is very comfortable and is sleeping a beautiful healing
sleep....His breathing has been awesome. He is back on
a little oxygen through a nasal cannula.

His tube feedings are gonna be switched to bolus feeds, more
like I do at home. Will take a couple of days!
I knew he was down a few pounds..but today the dietician
said his weight was down to 134...That is 15+ pounds
since this started in April...

Tonight team tough is very very joyous and thankful to be
one step closer to the door.

I am humbled once again!

Thank you for all of the support for Hollister.
Thank you for all of the great meals from the DCHS football
parents...Thank You Mary Bernabe for organizing and doing
so much for us...and for taking care of my Harrison and
making him feel so welcomed and loved in your home!

I can never thank any of you enough...but Team Tough is so
strong because of all of you...

Your thoughts and prayers have been heard all through the
Neuro ICU..

Continued thoughts and prayers are needed!!!

Thursday, May 24, 2012 11:35 PM CDT

Word of the day....

EXTUBATION EXTUBATION EXTUBATION EXTUBATION EXTUBATION!!!!

JOYOUS JOYOUS JOYOUS JOYOUS JOYOUS JOYOUS JOYOUS JOYOUS!!!!

What a day...

Hollister is the toughest boy/man I know!!!

The doctor came in early and gave me the plan for the day...

He was going to do a bronchoscopy at 0730...and see
what his lungs looked like and how he did afterward...
He wasn't going to do a trial extubation which abosolutely
made me happy. I knew how difficult it would be for Hollister
to pass....

He did the bronch, his lungs looked good!! He had very
little secretions...He set the ventilator back on 5/5..
Hollister was comfortable and did well...

Much to my surprise Dr. Fox came back at 0830 and was
ready to pull the tube!! The respiratory therapist got
ready and at 0835.... the tube was OUT....Hollister
pounded his chest and tears leaked from his eyes...
He was ready!!
Dr. Fox sat and watched and waited.I could see how happy
and proud he was of his (best) patient!!!
The first crucial 10 minutes passed he gave a thumbs
up and left the room!!

I swear my heart grew threw times larger at that moment...
My eyes leaked a bit and so did Kathy the nurse..
We hugged and cheered Hollister.

Watching your child be extubated for the third time in
7 weeks is one of the most excrutiating things a mother
can go through. The unknown of the possible re-intubation
looms over your soul like the devil....

As every minute and hour that passed, I marked each one.
I would make sure everyone knew where Hollister was on the
hour count...Dr. Fox kept checking back all day and
shaking his head....I knew Hollister was defying the
odds!!!

Today has been a very happy day for Hollister. He got a
shave and a shampoo. He has even smiled a few times and
is trying to get his voice to make a few small noises.

Hollister truly is the result of God's love. He is very lucky
to be surrounded by so many who have thought about him and
prayed for him the last 7 weeks/10 years.

Tonight as I offer my prayer of thanksgiving for God's love
of Hollister and his continued healing. I will also thank
God for all of you...who continue to carry us through some awful
times....

Team Tough is thankful and humbled.....

Hollister is truly amazing.....

Thursday, May 23, 2012 11:47 PM CDT

Hollister remains tough in the fight....

Wednesday....
Started bright and early with my new favorite Mayo Clinic
doctor...Dr. Fox....The CCS doctor in charge of the vent....
He made a signigicant change to the ventilator...
He was initiating all of his own breaths with pressure support....
The support was 15...
Clearly this was a step.....

Talking with Dr. Fox, I realized why I like him and trusted
him so much...
He is also an anesthesiologist here....I could relate to him
after working in surgery for....just a few years...
He is also very smart and has common sense too.
He doesn't look old enough to be a consultant...I thought
he was a resident...I had to ask the nurse if he was a
decision maker...and boy is he...

Today, Hollister continued to tolerate the vent changes...
He did struggle a bit more today. I continue to believe
he can and will be extubated....

At 2:30 Dr. Fox decided to do a bronchoscopy on Hollister....
Not much time to think...and it was done...
Secretions were much less and his lungs looked ok...
one little red spot on the right upper lobe.

After the bronch a crazy thing happened. Hollister's vital
signs were much improved. The ventilator went to 5/5...
this is the lowest amount of support you can have!!!
Looked like a different guy....

The Neuro team rounded again this morning. Not sure exactly
how much meaness one team has to give...but in the last
8 days I have been hit pretty hard with their words.
Today, made my eyes sting a little.....
In my rebuttle to them, my voice even got a little shakey....
man they are tough.
I stood my ground...me against all 8 of them....
Reminding me he will need a trach....forever ventilated....
and I should think about some of the decisions I need to
make for him.

Just how tough does one Mom have to be?????

Well, what they don't know is my faith in my Hollister
and God are unwaivering.

We are Team Tough!!!!

Hollister will be having some kind of extubation trial in
the morning....whatever that means....

Team Tough needs lots of thoughts and prayers to get
through tomorrow...

Tuesday, May 22, 2012 11:23 AM CDT

Hollister is sleeping in the gerry chair reclined
looking pretty good as I write this.

This unit is so quiet, you would never guess it has 20+ beds.
Makes it much easier to be here. My anxiety is still getting
the best of me....
I feel like I need constant reassurance from the nurses,
residents, and respiratory therapists...If there is any good
news I need it repeated to me about a million times...
before my heart heart slows a bit!

Yesterday morning was x-ray morning...first the CXR...
and the tech that game was not having a good Monday...
and unfortunately, she had to come back and do it AGAIN...
adding again to my anxiety!
an hour later, the machine rolled up to Hollister's room..
yet again....
Good thing it was a different lady...This time it was for
his abdomen. AHHHHHH...now what!?!?
What I have learned is no news is good news!!! If the doctors
don't come looking for you right after they get the results....
usually not much to worry about!

The good news is the CIC doctor(in charge of the Ventilator
or breathing machine) changed yesterday as it was Monday...
This guy is pretty nice. He asked a lot of questions about
Hollister. He agreed to give him a little time to get the
tube out! AMEN...THANK YOU...God is Good..and listening...
That is all I am asking for.
So, He did make a very small change to his ventilator settings.
Hollister tolerated well and he lowered the settings
again in the afternoon. He let him rest overnight and came
in the morning and made another change...

So, I am not saying these are steps forward...but I like to
think that Hollister has his shoes on...and is ready to take
the step when given the chance!!!

The seizures have continued to be stopped...This alone
is reason to celebrate!!!!

There is much reason to be optimistic here in room mb8-754.....

Hollister continues to sleep the good healing sleep...
My favorite Chaplin stopped in last night and reminded
me that God never sleeps...so when Hollister is sleeping...
God is healiing.

Hollister continues to fight the good fight.

Team Tough remains Faithful....

Sunday, May 22, 2012 11:09 PM CDT

I didn't realize I hadn't written a note since Wednesday.

You can NOT have your cell phone on in the Neuro-ICU. I am
not avoiding or not answering calls....I don't leave Hollister's
bedside very often.

There have been some very painful and agonizing days here.

Hillaree had quite the adventure getting her on Wednesday.
She is staying in Vermillion for the summer. She was on her
way across the state of Minnesota when her faithful car(KEN)
stopped...apparently ran out of gas outside of Fairmont....
AAA to the resuce. She filled up and Ken stopped again on
the side of highway 90.....30 miles later...
Dick had to go get her; have her car towed to Albert Lee and
come back to Rochester...
They didn't get back until close to midnight.....
I was happy to see her safe......

Thursday....
An Echo of his heart was ordered. I would have been more
nervous, but I know this is standard of care for MELAS...
and He had just had his check-up with his cardiologist in
Des Moines and his heart is the same...and his pericardial
window is working.

His seizures and myoclonis started up again....

Friday...

MRI..........

and that is all I have to say about that...

Saturday...
Finally, one last small medication change and all myoclonis
and siezures have stopped..........

They did get him to the gerry chair and he looked good.
Once his brain rested....
and he got his hair washed!!!!!

He did start running a fevor on Saturday afternoon...
Tylenol given, when that fevor broke...he was soaked.

He slept Saturday night...

Today he slept...not matter where he was chair or bed...
He slept..It was awesome good sleep...

It has been difficult being here. There seems to be some
doubts that he will be able to be off the vent...

This morning when the neuro-intensivist was here and I was
listening...I remarked to him that he should be the smart one
and I will be the faithful, hopeful, optimistic one....
He the told me...."I don't want to take your hope away..."
I reminded him that he didn't have that ability....

Hollister is fighting the fight!!!
Team Tough is strong behind him!!!

Need lots of good thoughts and prayers!!!!

Wednesday, May 16, 2012 11:54 PM CDT

The Neuro Intensive care unit is one busy place.

Hollister was on this unit twice in 2006.

It is a good place...if you need a place like this....

Hollister had a very busy day after his arrival almost
24 hours ago.

The versed kept him very sedated and sleepy...His seizures
stopped, visible and on the EEG. His myoclonic jerks have
stopped also.
As of a few hours ago the sedation has been shut off and
Hollister appears to be more awake. Awake and hating that
big ole breathing tube.....

The PICC line nurse worked on his picc line throughout the night.
She did an awesome job, all of the ports are functional and
drawing blood.

He had an ECHO of his heart this morning. His heart has been
beating out of his chest for several days. It got up into the
160's on his arrival here.
The doctors gave his sevaral fluid bolus/challenges...
He was definetly dehydrated and the fluid helped both.

His chest is also full of pneumonia..His temperature has
been elevated and the nurses are able to suction out lots
of it.
The great news is that his temperatue broke this afternoon.
He has almost had 24 hours worth of the antibiotics for
the pnuemonia...

The new seizure medication has been stopped. I am thrilled
about this.....
He is back on his regular medication schedule, some of
his seizure medications are IV. This is all good.

The Neuro Team here in this unit is awesome. They are devising
a plan to get him back where he was.....

Will wait until tomorrow for the next step...
Hoping it will start with extubatioin!!!!

Team Tough feels extremely lucky and hopeful!!!!

Wednesday, May 16, 2012 5:11 AM CDT

Where to begin...

Been a rough couple of days for Hollister.

Monday he had a couple of seizures that are more like ones
from home. I asked the nurse to give his meds early..hoping
this would help him stop!!! He did have one more after we moved
him to bed... There were a few very uncomfortable moments....
He did finally fall asleep around 1230, and rested well all night.

Tuesday was rough from the moment he was up...7am....
He had another seizure..and never really recover until after
9am...Then he was tired...

Neuro came back...(the nurse did call them)...They hadn't
see Hollister since Friday...No to mention once again we
were told that these seizures were nothing...Probably
myoclonic jerks....No need to treat.

Speech therapy came and worked a little bit. He was
sleepy and a little off. But actually did work a little.

Physical therapy came in at 1015...Yeah, I was ready for him
to head to the chair!!
He stretched and stretched. He relaxed and enjoyed it...
Just as he was sitting on the edge of the bed, ready to stand..
we noticed he was starting to seize...

Back to bed...3 more came rather quickly....I asked the
nurse for some Ativan...I told her these are familiar and
the kind that progress.

He rested, but not well. He was wormy(all over the bed)...
He cried and cried.

The seizures started again at 7:05...The nurses were in the
middle of report...
They were every couple of minutes..and lasting a minute or
so...
finally at 7:35 he got 2 of versed...and the seizures continued.
at 7:50 he go two more of versed...and the seizures were
lasting longer and getting bigger. Hollister was in big
trouble...(thank goodness these are nothing...)

Dr. Patterson called after 8:00...He validated all of my
thoughts and fears...and said he needs to get to the Mayo
clinic in the fasted possible way.

Lots to be done...Hollister continued to seize and around
0930pm he had to be intubated again..I voiced my displeasure
and dissappointment in the care he had recieved that lead to this.

Thank you to Kris Hollister's nurse for advocating for us...
and getting everything done in a timely manner...

Thank you Mary B...for being there with us...and taking
my sweet Harrison home with you and loving him for me!

at 1025...standing in the Mercy parking lot...I watched
after 40 days my Hollister left the building and headed
to the "Hollister-copter"....
My heart beating outside of my body..I watched the helicopter
fly off into the dark of night..

The drive to Mayo, knowing your child is ahead of you and
already there is very very long...

We arrived and Hollister was in Cat-scan...
EEG was hooked up very soon after...
labs...cxr..and lots and lots of drugs.
He was dehydrated, has a fever, and pnuemonia....

AHHHHHH

Lots and lots to figure out!!!!

Team Tough has arrived!!!

Sunday, May 13, 2012 11:38 PM CDT

Happy Mother's day...Mama....
You da best....

“When God Created Mothers"

When the Good Lord was creating mothers, He was into His sixth day of "overtime"
when the angel appeared and said.
"You're doing a lot of fiddling around on this one."

And God said, "Have you read the specs on this order?"
She has to be completely washable, but not plastic.
Have 180 moveable parts...all replaceable.
Run on black coffee and leftovers.
Have a lap that disappears when she stands up.
A kiss that can cure anything from a broken leg to a disappointed love affair.
And six pairs of hands."

The angel shook her head slowly and said.
"Six pairs of hands.... no way."

It's not the hands that are causing me problems,"
God remarked, "it's the three pairs of eyes that mothers have to have."

That's on the standard model?" asked the angel. God nodded.

One pair that sees through closed doors when she asks,
'What are you kids doing in there?' when she already knows.
Another here in the back of her head that sees what she shouldn't but what she has to know,
and of course the ones here in front that can look at a child when he goofs up and say.
'I understand and I love you' without so much as uttering a word."

God," said the angel touching his sleeve gently, "Get some rest tomorrow...."

I can't," said God, "I'm so close to creating something so close to myself.
Already I have one who heals herself when she is sick...
can feed a family of six on one pound of hamburger...
and can get a nine year old to stand under a shower."

The angel circled the model of a mother very slowly.
"It's too soft," she sighed.

But tough!" said God excitedly.
"You can imagine what this mother can do or endure."

Can it think?"

Not only can it think, but it can reason and compromise," said the Creator.

Finally, the angel bent over and ran her finger across the cheek.

There's a leak," she pronounced.
"I told You that You were trying to put too much into this model."

It's not a leak," said the Lord, "It's a tear."

What's it for?"

It's for joy, sadness, disappointment, pain, loneliness, and pride."

You are a genius, " said the angel.

Somberly, God said, "I didn't put it there.”

¯ Erma Bombeck, When God Created Mothers

Saturday, May 12, 2012 10:49 PM CDT

Prom....
Today is Harrison's junior Prom....
He has been a very busy boy. He is the junior class
president...this makes him responsible for the prom.
All of the junior class officers are young men.
They started working on the location for prom a year ago
this Monday. It is being held at the new Vets..convention
center...What a nice place.
One thing about boys, decisions are not made with emotions. They are made with the bottom line...money!
His big road block...a small thing like a helium shortage.

Hope that all goes well and he can relax and have a good time.

I have been sad all day. I hated not being there helping
Harrison decorate this morning. I was very sad to miss the
picture taking party before prom...I didn't get a picture
with him in his Tux. No after Prom for me this year either...

I am so grateful that he and his girl Dani and their
friends Dan and MaKenzie stopped by the Mercy on their way
to Vets...they looked good!

Again MELAS has taken so much....

Hollister has been very very sleepy today.
He is very very weak...and very very thin.
He did vomit several times today..

The 1100 hour has passed and Hollister is not right.
His eyes are open, pupils up and very dialated. His mouth
is open. His left shoulder and hand are twitching.
I am standing by his side now as I finish this note.
watching and waiting....It is now past midnight and he is
still going strong...wish his brain could rest.

Hollister did not make it to any of his proms...His senior year,
he was in the hospital with the unresponsive episodes...
related to a drug he couldn't metabolize....Same weekend,
7 years ago....seems like dejavu
His junior year we were at appointments at the Mayo...
he did make it to the after prom and had so much fun and won
some great prizes....

looks like another rough night in room 965...
Hoping Hollister comes around soon....and rests

Hollister is TEAM TOUGH.....

Friday, May 11, 2012 11:40 PM CDT

not sure where to start...

I guess I will start with last night(Thursday) at
around 1100pm...big surprise...

Hollister was lying in bed and Dick and I were visiting
with our friend Jean(who is a house supervisor here)...
Hollister's eyes open...and his arm and leg on his left
side were moving...then projectile vomiting....
Hollister's nurse came in...
was he puking because his dilantin is high
or is he puking from the seizure....

Hollister's nurse calls neurology on call...asking about the big
seizure, throwing up..what he wants to do...and if he wants
lab work.
He said....do nothing.......... Perfect way to end our day....

Pretty much everyday for the last two weeks!!!!

That brings us today...

Started with a very sleepy Hollister. Speech therapy came
in bright and early. Hollister was awake and ready to go...
or so we thought! She did some very simple things with his
mouth...projectile vomiting....

He did ok for pt...and made it safely to the recliner.
He was resting comfortablely...unit 1:45...
Grand Mal seizure.... get the nurse...
a couple minutes later he finishes...she goes out to call Neuro...
Wham...grand mal seizure...
nurse still on phone...
wham...grand mal seizure...
nurse talks with intensivist...same one as in the unit...
he still follows Hollister. He gives drug order!
wham...grand mal seizure...
15 minutes has passed and 4 huge grand mal seizures...
Nurse in giving meds...
Neuro calls..don't give anything we will come look at him..
she said too late...and hung up!!!

We are lifting Hollister safely to the bed..
when neuro walks in...

This is where the day really starts to fall apart.

2 weeks ago when all of the small seizures/twitching started...
I remember thinking this is going to turn into something...
and today it did...
Hollister has never had a small seizure that didn't turn into a big mess.
That is what happened in the spring of 2010...

As much as I hate to be right...I am...all I was asking was to
be heard...Just how TOUGH does Hollister have to be...

I told Neuro what I knew...and as mad as I was...I saw
Father Bob standing by Hollister's door...good thing my
faith is strong or I might really like to know how the
Holy Spirit works.
Father Bob means a lot to Hollister and I. He has sat with
us on some really awful days...
He prayed with us and annointed Hollister...
I knew everything would be OK!

Back to our poor nurse being yelled at by neurology for
giving meds and telling her that those were not
grand mal seizures at all.....
I did here her telling him..they certainly were, he
was about seizing out of the recliner...
I know a what a grand mals is....and you weren't here and I was.
She is a tiny little nurse who isn't afraid.
I was so thankful for her and her willingness to advocate
and protect my boy!

For the next few hours I had a lot to think about while
Hollister was sedated/sleeping.

Poor Dr. Flowers(the ICU intensivist) walked in at 7pm...
He was hoping that Hollister was better. I immediatly thanked
him for responding so quickly and helping get those big
nasty seizures stopped... He is always very humble...

I also told him that I thought Hollister needed some IV dextrose.
I explained to him that it was about his mitochondria and
not his glucose level. Told him, that he likes IV dextrose and
his brain needs it...
especially with all the siezure activity...
He agreed!

Talked about last night's seizure...and he was visably...
pissed...Good thing for me, Jean(house supervisor) came
into the room and validated everything I said. He did
remind me I have his number and I should call him!!!

Then I asked him if this unit was a hospice unit or palliative care.
He looked very confused...I told him that I believe some of
the neurologist are basically not treating Hollister
because he is end stage...
Which has happened before...and they are all IGNORANT!!!!

He appeared shocked..and told me he isn't dying...

But...I also told him Hollsiter was "end stage" when he
was diagnosed...and it means nothing...
As I have stated many times before....
look at the patient...
Not the damn disease!!!!

I don't think asking neurology to help control
his seizures is asking too much...
If is is there is a big problem...

I could tell he was shocked...but I reminded him that for
the last 2 weeks nothing has been done to help him.

I told him I was no longer going to mention his MELAS on any
admission here. Because people are ignorant and suck!!!

Last I knew...the only one playing God is God!!!

That is a shortened kinder version!!!

Hollister is indeed getting his IV dextrose tonight...
and lab work has been sent...He is resting quietly...
No oxgyen...breathing good ole Mercy room air...

Lots to be thankful for!

Hollister is TEAM TOUGH

Friday, May 11, 2012 11:40 PM CDT

not sure where to start...

I guess I will start with last night(Thursday) at
around 1100pm...big surprise...

Hollister was lying in bed and Dick and I were visiting
with our friend Jean(who is a house supervisor here)...
Hollister's eyes open...and his arm and leg on his left
side were moving...then projectile vomitting....
Hollister's nurse came in...
was he was puking because his dilantin is high
or is he puking from the seizure....

Hollister's nurse calls neurology on call...asking about the big
seizure, throwing up..what he wants to do...and if he wants
lab work.
He said....do nothing.......... Perfect way to end our day....

Pretty much everyday for the last two weeks!!!!

That brings us today...

Started with a very sleepy Hollister. Speech therapy came
in bright and early. Hollister was awake and ready to go...
or we thought! She did some very simple things with his
mouth...projectile vomitting....

He did ok for pt...and made it safely to the recliner.
He was resting comfortablely...unit 1:45...
Grand Mal seizure.... get the nurse...
a couple minutes later he finishes...she goes out to call Neuro...
Wham...grand mal seizure...
nurse still on phone...
wham...grand mal seizure...
nurse talks with intensivist...same one as in the unit...
he still follows Hollister. He gives drug order!
wham...grand mal seizure...
15 minutes has passed and 4 huge grand mal seizures...
Nurse in giving meds...
Neuro calls..don't give anything we will come look at him..
she said too late...and hung up!!!

We are lifting Hollister safely to the bed..when neuro walks
in...

This is where the day really starts to fall apart.

2 weeks ago when all of the small seizures/twitching started...
I remember thinking this is going to turn into something...
and today it did...

As much as I hate to be right...I am...and I was asking to
be heard...Just how TOUGH does Hollister have to be...

I told Neuro what I knew...and as mad as I was...I saw
Father Bob standing by Hollister's door...good thing my
faith is strong or I might really like to know how the
Holy Spirit works.
Father Bob means a lot to Hollister and I. He has sat with
us on some really awful days...
He prayed with us and annointed Hollister...
I knew everything would be OK!

Back to our poor nurse being yelled at by neurology for
giving meds and telling her that those were not
grand mal seizures at all.....
I did here her telling him...well they certainly were, he
was about seizing out of the recliner...and you didn't
seem, I did!!!
It all was making my blood pressure rise.

For the next few hours I had a lot to think about while
Hollister was sedated/sleeping.

Poor Dr. Flowers(the ICU intensivist) walked in at 7pm...
He was hoping that Hollister was better. I immediatly thanked
him for responding so quickly and helping get those big
nasty seizures stopped... He is very humble...

I also told him that I thought Hollister needed so IV dextrose.
I explained to him that it was about his mitochondria and
not his glucose level. Told him, that he likes IV glucose and
his brain needs it...
especially with all the siezure activity...
He agreed!

Talked about last night's seizure...and he was visably...
pissed...Good thing for me, Jean(house supervisor) came
into the room and validated everything I said. He did
remind me I have his number and I should call him!!!

Then I asked him if this unit was a hospice unit or palliative care.
He looked very confused...I told him that I believe some of
the neurologist are basically not treating Hollister
because he is end stage...
Which has happened before...but is so stupid...

He appeared shocked..and told me he isn't dying...I couldn't
have agreed more..

But...I also told him Hollsiter was "end stage" when he
was diagnosed...and we really haven't done anything heroic...
treating a pneumonia...and asking for help controlling
his seizures....

I reminded him...that I guess all diabetics and kids with CF are end stage
as there is no cure for either of those...
He actually said I was right....stupid but right...

I could tell he was shocked...but I reminded him that for
the last 2 weeks nothing has been done to help him.

I told him I was no longer going to mention his MELAS on any
admission here. Because people are ignorant and suck!!!

Last I knew...the only one playing God is God!!!

That is a shortened kinder version!!!

Hollister is indeed getting his IV glucose tonight...
and lab work has been sent...He is resting quietly...
No oxgyen...breathing good ole Mercy room air...

Lots to be thankful for!

Hollister is TEAM TOUGH

Wednesday, May 09, 2012 11:21 PM CDT

Another day in paradise...

Has been nice having my Hillaree home for a week.
Not getting to spend much time with her..
but, I will take what she can give.
Hollister really likes havinig her here.
She is taking some classes and staying and working
in Vermillion this summer. For some reason she thinks
this is good for her...but not da mama...

Hollister is continuing to work hard for PT.
He is stretched and stretched. He stands with much help
and pivots to sit in a very large recliner.

He continues to have lots of seizure activities...
Again, neurology thinks I am crazy...and insists there
are small...and mean nothing...of course I do not believe
that!!nothing is ever small with Hollister.

He is still having some staring seizures at 1100pm...
and he usally drops his oxygen saturation at this time.
AHHHH

He did get his hair washed with shampoo and water...
first time since we got here. He has had his hair washed
with those hats....but this was awesome...

Team tough needs lots and lots of prayers....

Monday, May 7, 2012 10:45 PM CDT

The big news of the day...

Hollister is out of the unit as of 5:30 tonight.
He moved to 965...
The is a transitional vent unit...

Not exactly where I thought he would move.
But..
This is where he landed.

There has been much debate what to do with Hollister,
if he should leave the unit or not...
Everyone Doctor has an opionion.. My only concern was that
he not pick up any other "bugs" on another floor...
and that he have the ability to get som therapy to make him
stronger...so I can take him home.

He is still requiring some Oxgen...I think he is down to 3L....
and he still needs help with his secretions...Which why
we ended up on this floor. Supposedly, the nurse/patient
ratio is better....Not sure at this point...

Sunday, Hollister dilantin level was 30...twice what it
should be...NOT SURPRISED!!!!!
finally, his dose has been lowered to 50mg more a day than
he was taking....Not sure why it has taken so long.
He is still very overserved!!!!

He is having lots of jerks and small seizures...I think way
too many. He has never been like this. Since it is almost
1100, you can guess what he is doing....
He is now awake, his pupils are dialated, and he isn't
breathing as well...and now his left arm and hand are
moving...

His medications are still NOT right...not sure how I can
get this through to them....

He did finally get that Foley out.. I am so impressed by him...
That he was able to pee 3 hours later...A foley for over
a month could have caused some problems....

My anxiety level is high...a new room, new nurses, and a very
busy floor.
not to mention, that his seizure activity continues to increase...

Team Tough continues to need lots of thoughts and prayers.....

Saturday, May 5, 2012 11:09 PM CDT

Happy Cino de Mayo...

We did indeed have Mexican food for lunch...
No margaritas.....

I believe Hollister has seen the corner and has finally
made it past!!!!

It has been a long time coming...but he made it!!!

He still has quite the journey in front of him...

He looks much better. He has even been awake longer today
and was smiling that smirky little smile he does.

The EEG came off around lunch time. He is still having a few
small seizure spikes..and these correlate with the mouth
twitching neurology said nothing to worry about.

He is still requiring oxygen support, mostly through a
nasla cannula. He will need to get that down a bit.
He is doing a better job of coughing and clearing his ariway.
He is also doing a much better job of keeping oxygen levels up....

He did get a dose of lasix to move out some of the fluid
that is accumulating in the bases of his lungs....

Hoping to get the foley out...and possibly move to the
floor!!! then home in a day or two...Would be nice for his
lungs and brain to be strong!!!

Team tough is very hopeful!!!!

Friday, May 4, 2012 11:47 PM CDT

Another frustrating day has almost come to a close!!
And...Hollister Richard Farrell is still fighting the good
fight!

The EEG showed no seizures! This is very good news!
Going to leave it on until tomorrow.

He is still very sedated/tired and hard to wake up. He is
still having some staring/neuro episodes...
All of this validates in my brain that he is overserved
and needs all of those toxins out of his body..

Told this nurse this morning that I thought his dilantin
level must be high. He is acting like he does at home...
tired, unresponsive and nauseous...
I know she thought I was nuts...

Everyone here just assumes that this is his normal!!
That he lies in bed all day and doesn't do a thing!

NOT.....

A dilantin level along with some other labs were drawn.

I asked her about the dilantin around lunch time and it is
very high!!!
Ask if they were holding a dose and she said no...
changing it to a lower dose......

I almost did the I told you so dance....

The big problem with all the wrong medications in the last
month is....
He is very sleepy!!!!
This causes him to have some problems with coughing, clearing
his lungs, and maintain his oxgen level.....

I am sitting here...

I feel like a dog chasing his own tail...

If I could get everyone who makes decisions here to listen
to me....
I have taken care of Hollister for 10 years...
been hearing about MELAS for 10 years...
and recognize someone who has been overserved!!!!

Hoping for a somewhat restful night for Hollister and
a brighter tomorrow!!!

Team Tough is ready to be well!!

Thursday, May 3, 2012 10:20 AM CDT

Another very frustrating day....

We finally gotten the keppra straightened out...
We did not wait to give it a chance to work..and let the
toxins leave his body.. So Hollister continues to look like crap!

AND....

He is now on a 6th, I repeat 6th siezure medication!!!
and he is hooked back up to the EEG...

AHHHHHHH....

I am happy to have the EEG to rule out lots of things....

Really in the mode...need to take him home!!
before something else goes crazy and he gets septic from
the PICC line and Foley he has now had for 4 weeks...

I never wanted to bring him in and now we have been her for
four long weeks.

The new medication was started at 1:30..and he promptly
feel asleep....and was sleepy/sedated all day.

He is coughing bettter and doing a better job bring up the
junk!!!!

So...here we sit.....

Team Tough is ready to go home....

Wednesday, May 2, 2012 11:01 PM CDT

Here it is 1100.. the bewitching hour and Hollister is once
again having a neuro event...which I am now calling them
instead of a seizure. He had one this morning from 1050 until
1:30....way to long.

His eyes open wide and are completely dialated. It looks like,
he is looking up. He does blink and will occassionally
swallow. His heart rates elevates a bit...
but his viatals are stable and breathing is consistent.
And he is not home. He totally checks out.
It is really creepy and bizzare. At first it looks like he is
paying attention and looking at you. Until you realize his
gaze is fixed!!!!

This all so weird...I have only seen him behave like this one
other time...
If you have followed Hollister a long time you will remember
the spring of 2005. Hollister was a senior. He was having
some awful headaches and the Neurologist at the Mayo Clinic
prescibed a very old drug to help him.
Well, he started having unresponsive episodes....
He slowly got better when the medication was stopped!!

He had one other very weird thing in 2008 with a generic seizure medication....
that our insurance made us take...
Even though he had been on name brand for over 7 years...

So...leading to the events of the last 26 days...
I know for a fact that his lamictal which is brand name is
NOT available here. I bring my own and they are using it...
When we were admitted I asked about Keppra...Stating at the
time that Hollister cannot take any generic seizure medication....
I was assured that the Keppra would be name brand....
As days turn into weeks and more and more crazy things happen...
I am trying to rule out an variable that I can...
I ask regularly to all new nurses about the Keppra. I am
staring to worry as Hollister is deteriorating in front of
my eyes...
With everything going on this week...I finally called my
Pharmacist and asked her about generic Keppra...
I asked to see his drug sheets..and low and behold...GENERIC......
So this morning at 1am he got a dose of good ole Keppra....

The neurologist came in this morning and agreed that that
could be part of his problem......
He explained that generic drugs are made in a lot of different
factories and even the percentage of drug can varie!!!!

So he ordered a 500mg IV dose of Keppra...real brand name Keppra!!
I told him Mercy didn't have any...and he said they would have
to find some!
I found out that all of the hospitals in the city were called...
The only one that had brand name Keppra was the VA Hospital.....
Crazy...

I believe it is going to take a few days to get out any toxins out his body....

I am feeling a little hopeful tonight that Hollister may
indeed be heading in the righ direction.

It has been a rough 4 weeks....
Every challenge has been a battle. I allow my self one
Shirley McClain moment (from the movie Terms of Endearment)
each admit...
I did use mine on that awful Friday night that he had to
be re-intubated...

I feared yesterday, I may have to ask for another!!!!

Team tough is hopeful for a new day...and possibly a new room!!!!

Tuesday, May 1, 2012 11:45 PM CDT

NTMICU bed #1 is tired.

What a change from Saturday being extubated and doing well...
To a fantastic Sunday with laughter and joy...

to...

Sunday night at 2300(11pm)...Hollister had a seizure...
The kind where he opens his eyes and stares...A creepy distant
I am no where stare. His eyes are dilated and .....
Most importantly, he drops his Oxygen saturation to a very
low level, causing much angst and excitement!!!
Decided against the Ativan to stop the seizure as he wasn't
breathing very well to begin with.
After some very intense hour, he started to look better...

Again night in the unit.....

Monday he was TIRED!!!! so very tired....
He was able to sit up in the gerry chair....
Didn't look too bad, once up...

Until 1100...he started with the seizure...and this time he
had a little more body twitching and jerking...CRAP...
I watched and waited...I really wanted to see what he would
do....He did not drop his O2 sats but his breathing was
labored. The seizure lasted a long long time.

Around 1:30 he did it again. This time he did get the ativan.
Sure made him sleep...and sleep...

back to bed...and as they say this is where the story starts....

Dr. Flowers in the intensivist came in around 1915 and
thought Hollister's chest finally looked and sounded better.
He didn't like how tired he was but thought we were moving forward.

2045.....He dropped his oxygen saturation and couldn't
bring it back up...JIll listened to his chest and there
had been some changes in the last hour...Not good.
He needed to cough to move some secretions and crap out of
his chest!

Hard to do when you are weak and can't breath well....

CPT of his chest was ordered now...and this continued on
and off all night. His nurse Jill, never left his side,
even when Hollister would occassionally breath and rest
she stayed in the room..Respiratory was in here almost
continually.

And of course tyring to cough came the vomit!!!
Not good when your airway is compromised!

It was a long agonizing night.Hollister was put through the ringer.
Everything but standing on his head to get him to cough and
breath. It was like bed aerobics.
The good thing was we made it past 2300(11pm) without a seizure...

This morning he was very tired but PT came and ranged and
stretched him and stood him to the chair...AWESOME...
He was still very tired.

and...1100 rolled and around he started with the seizing....
with some big jerks and movements....
The awful night had turned into the day.

Dr. Flowers came in and orderd a CXR...
He showed it to me and his chest didn't look too bad.
He was optimistic that continued CPT and strong efforts to
help him cough.....no intubation!!!!

And of course 2300(11pm)...seizure...and a chest full of crap.....

Gonna be another long night.

Team Tough is looking to turn the corner...
any minute now!!!!

Sunday, April 29, 2012 12:56 AM CDT

Extubation Extubation

Tube is out Tube is out

Ventilator is off Ventilator is off

Exactly 12 hours ago. 12 hours have passed.

Joyous Joyous Joyous Joyous Joyous Joyous Joyous Joyous

Every second, minute, hour and possibly day that passes is
an accomplishment for Hollister. Lots to be nervous about.
Every hour that ticks by I breath a little sigh of relief.

He is doing well. He is strong...Team Tough strong!!

Has been alert, smiley, even giggly at times.

His cough is strong and he is trying to clear his throat
of all that nasty lung curd! He is working so hard!!!

He is on oygen through a nasal cannula.

He has a long way to go. Some hurdles to get over...

BUT...

at this moment the tube is out, he is breathing on his own....
he is seizure free...
he has been awake and responding...
he sat up in the gerry chair this afternoon...
(sitting up is good for his lungs)

tonight...as Hollister rests...
I am feeling very very lucky!

Team Tough is relieved and hopeful!!!

Friday, April 27, 2012 11:19 PM CDT

ARGHHHHH...
(no it is not talk like a pirate day)

Three long weeks we have been in room #1..in the
NTMICU. 16 of those days intubate, fearful this indeed may
be a new record for him.
AND.....
He has had so may seizures it would be
hard to count or know.

The nurses come in and turn him and reposition him every
2 hours...Hollister has been rolled and fluffed 252 times in
21 days...
That alone would make one tired...ha

The nurses here are awesome and are taking wonderful care of him.
He is clean, shaven(kind of..with the weird stickies on
his face to hold the tube...I fear he maybe rocking some
lamb chops...), and his skin remains intact!
ALL good news.

I wrote my note Thursday way to early....
He did indeed have a seizure at 1100. It wasn't a huge one...
but
big enough to treat. Thank you Jen for getting an order
for a prn medication. Now there is a good...what if...
drug waiting!!

SO....seizure and drugs makes Hollister to tired to wean...
This also gives this MOM a huge belly ache!

Tiredness/sedation brings about some very awful talk of a
Trach...BLAH...
This also adds to my nausea and nervousness and angst!!!

I did talk to both doctors and ask that all his seizure medications
be returned to their regular home dose....
I need to see how he is. If he truly needs more or if this
is what is making him so sleepy.
I need to have some sort of comfort zone at home...

Already nervous about what happened last Friday....
His respiratory status will never be the same...
I will never be as comfortable as before....

Hollister continues to amaze me. He woke up Thursday night
a little bit. I turned the TV on...hoping some familiar
noises might help him stay awake...
He was awake again when it was time to sleep.

Today...He was much more awake..

It was a woot woot kind of day.
No seizures...
way more awake and responsive
Sat on the edge of the bed with physical therapy.
(always think it is amazing that they can sit someone
intubated)
the weaning trial went well for the first day...again

Anxioius to get the tube out...
It will be better for his lungs and my heart!

Team Tough is Thankful and hopeful!!

and the church says, "Amen, Alleluia!!!"

Thursday, April 26, 2012 1:12 AM CDT

Here it is night again....

The unit is a different place with the lights off.

Hollister has had no more seizures that have been seen.
He is very sleepy/sedated from all of the medication given
last night.
Too much of a good thing, makes this boy tired.

Much to my dismay, no vent weaning today. Hollister has to
be awake....another step back. another day on the vent.....

starting to make this momma nervous!

I am hopeful that today will be a good day. That he will start
to be more awake.. There is a fine line between awake and
agitated. That is fine line!

His CXR looks better. The psuedomonous that the fluid
from his chest is growing is very common when someone
has been intubated this long! Treating with the right
antibiotics all along!

Therapy has been coming to stretch him and move him. His
muscles and joints still seem very loose...

ALL GOOD!!!!

Hollister has had 2 very exciting visitors in the last
2 days...
On Tuesday afternoon Coach Fred Hoiberg (The Mayor),
coach of the ISU mens basketball came to visit. He was
great, talked to Hollister. Hollister was pretty awake
and he was thrilled. He asked questions about him and
his disease. Very Very nice man. I was as thrilled as
Hollister. He was awesome.....

Today...(I guess Wednesday)....
In walks Coach Paul Rhoads...WOW. Head Football Coach for
ISU!!!
How awesome. Hollister has been an ISU football fan since he
was a very small boy when my Aunt Joan used to take him
to the games!!!...
All the way through high school, he didn't miss a game
unless he were sick...hospital sick!
Again, Coach was interested. He talked to Hollister
(even though he was sleeping.) He was great.
Then after Hollister was turned in bed...He opened his eyes
and Coach Rhoads told him who he was... Hollister opened
his eyes, lifted his head and looked right at him...
He told Hollister that Cyclone fans were LOUD and PROUD!!!

It was nice to meet them...Hollister loves it!

Nice to have them both back in Ames, Iowa...
Where they belong!

Team Tough is hopeful!

Wednesday, April 25, 2012 1:08 AM CDT

Have I mentioned I hate nights in the hospital!!!
especially the ICU!!!

Hollister's day was OK. He was having a lot of myoclonic
jerks. We were all talking about it. wondering what was
going on in his brain. Hollister has them occassionally but
never like this.

He did Ok with the ventilator starting to wean. May take a
couple of days for him to get the tube out.
Docter wants him stronger and more awake. He wants to make
sure he will not fail....and have to be re-intubated!!!

I am ready to have the tube out now!

So, back to the myoclonic jerks.
As the day went on they continued. He was also having some
staring episodes followed by coughing on the tube and a
lot of secretions. I watched and watched. Hoping I wasn't
seeing what appeared to be some seizure activity.
(of course the EEG was taken off in the morning!)

He did not sleep a lot this afternoon. I was hoping this
ment he was more awake.(probably from no klonipin)
By 9pm he was exhausted.
So many secretions, coughing, and his eyes were red and sore...

Then at 1000 his tongue started twitching....7 minutes later
again with his lip involved....all while his eyes were open
and blinking and going crazy...and it started all over
again.....
and his temp was creeping up.....

AHHHHHHH
DAMN SEIZURES

Hollister's nurse was awesome. First and foremost she
agreed that this was not good.

I kept asking Hollister what had I missed. What was really
going on. My little brain was in overdrive...
What was causing this and how was it going to stop...
I just couldn't think of a reason for this to happen yet
again!

I causually asked about his Klonipin(what he takes for
the myoclonic jerks...but I give this at home when I see
the first small seizure)
I knew she had given some of his medicationsa at 9pm
so I was wondering if he had it recently...

She gave me a funny look and went to check his chart...

She came back a short time later...
"the klonipin had not be given since Monday at 5...."
This was Tuesday night at 10pm.... OMG....
He has taken some amount of this drug daily since 2001!!!!

I was so happy to hear that...well not happy in joyous that
he missed a medication......
but happy in the sense that the seizure mystery had been
solved.

He recieved a large dose at 1100....
and his last seizure was at around 1130!!!

I am grateful that some how, by a much higher power than
my brain...the word Klonipin was whispered.
and I am very grateful the nurse heard it too!

He has slept well(sedated) all night!

Team Tough is relieved!

Monday, April 23, 2012 8:15 AM CDT

Another update so soon..
Hollister must still be sick..

Indeed.

He has had a very restful and quiet weekend.
He has been sleeping in what feels like a meat locker.
His temp is down this morning, and he appears to be shivering less.
I was able to shut the fan off and take off one of my sweatshirts...
Hope it stays down...

I thank God for that little low grade temp last week.
It appeared to be my nemisis....but in reality it kept
Hollister in the unit. I would have hated to think how
Friday might have worked out if we had been on the floor!

Re-intubating him was the last thing anyone wanted for him.
but, not breathing or intubated...I will choose at this moment
for him intubatioin.
When his left lung collapsed it was just too hard and too
much work for him. All the seizures and now knowing that
fluid was building up in his lung....

I have to say that Hollister is strong. He is tough and
fighting like a champ.

The nurses, doctors,respiratoy therapists, PCT's, and everyone
has been great. Hollister has done well because of them!
they have done a lot of good things for him.
He responds to them and truly loves many of them.
I see it in his body language.

Today is the day. Turned off the versed to see if his
brain is still seizing. The neurologist will be monitoring
the eeg to make sure he is not having any we don't see!

I am positive that good things are happening in Room #1!!!!

Hollister is tough....Team Tough!

Saturday, April 21, 2012 3:25 PM CDT

A second update in one day.
Not sure I have ever done that before.

Just over 12 hours since my last note.

An update seemed like a good idea.
I can't remember much very long.
I am sitting in a very cold, dark, quiet room, with a fan
going and the only nose is from all of Hollister's equipment.

He finally quite seizing around 2pm.
He seized litterally for 42 hours straight...
He would start a seizure it would last almost 2 minutes
and start another one 3 minutes later. You could have set
a clock.
My brain hurts just thinking about it.

Hollister in intubated and on a ventilator.

He was hooked up to the continuous EEG this afternoon.
The Neurologist can see if he is having seizures deep in
his brain that I can't see. That is a good thing.

His chest still full of junk. The nurses are so good
at suctioning it out. If the lung doesn't fully inflate
he may have to have a bronchoscopy.

He is finally resting. He does look very peaceful,
Nice to see, after the last 42 hours.
Knowing that he has some very tough days ahead of him.

Hollister needs lots of thoughts and prayers...

Team Tough is hopeful.

Saturday, April 21, 2012 3:05 AM CDT

Friday did indeed turn out be a hard day.

Hollister has struggled with the seizure every 5 minutes...
Don't know how or why the brain can do that...

I heard from both Neurology and the ICU intensivist...

"How would you have treated this at home?)...
Honestly, I said...I would have treated the first seizure...
I would not have waited until 12 hours later and continuous seizures.
I have always been able to stop one or two...
Truly, I have never seen him seize this long, not even when
he is in status!

Not the best start.
The goal was to try and stop the seizures and not have
to re-intubate him.

The plan never really did work out. Even with the phenobarbitol
restarted and his regular meds and a few others...
Control of the seizures has never really happened.

He had a few moments where he shined.

I have always hated night time in the hospital as a non worker.
and tonight was no different...

It became more apparent that Hollister would indeed need to
be re-intubated. Not good, but a neccessatiy!

Switched his breathing device several times trying to get
him the best chance.

I was standing by Hollister holding his chin up...jaw thrust..
helping his airway a bit...
and his O2 saturations dropped quickley into the 85 range
and dipped even into the 70s a couple of times..

Little did I know that Hollister's nurse and Respiratory
therapist went off the floor with another patient.

A nurse I know and like came in to check on Hollister and
got stuck.

I got a little anxious when his breathing didn't recover.
He was so tired from seizing that he couldn't do it any more!
Maybe a lot anxious and I might have even said some bad words..

I keep asking where respiratory was...
He's off the floor...is what I heard...I heard myself
bark..a hospital this size only has one at night...
Fear and panic, and the need to control took over.

so, I asked the nurse to get out the ambu bag and instincts
took over. I stepped over all the cords and junk, lowered the
bed and crawled to the top of the bed, to hold the mask in
place, while squeezed the ambu bag....

I did ok for a minute or so...then I looked at Hollister and
thought....I shouldn't be doing this...
Hard line to cross...
but walked out the room and acted like a bossy OR nurse or
scared parent...Tonight I think they looked very similiar.
Wanting what I what when I want it!

I was quite relieved when I saw Dr. Flowers walking through
the hall.

The nurses did a fantastic job keeping Hollister and his
airway safe.
He is indeed intubated...around 0040(1240am)...

His seizures continue at this moment. Pharmacy finally showed
up with the versed drip aboiut 45 minutes ago...
NOT COOL!

Hollister had a CXR around 11pm and one post intubation.
I was informed that prior to intubation his left
lung had collapsed. It was a good thing Dr.
Flowers was in house and could get here so fast.
His chest is now full of some liquid crap along with the
pneumonia. Right after intubation they were able to suck
alot of that nasty out of lungs!!!
His temperature has been climbing all day...after cultures
of the chest stuff was sent, tylenol was given

Lots going on in NTMICU #1

Hollister needs lots of thoughts and prayers...

Team Tough is fighting the fight!!!

Friday, April 20, 2012 5:15 AM CDT

Holy Cow...

What a night..

This roller coaster called life is extremely out of control.
Feel a little over whelmed like Clark W. Griswold in "Vacation"...

Only difference....we are on awful ride and he spent an
etire journey trying to get on a rollercoaster. If I remember
right...he may have had a little more fun!

This night has been one of the most toruous nights I
have experienced in the last 10 years....
and I am way too old to stand by a bed all day...and all
night!!!

Hollister started seizing around 7-730 last night.
You could set you watch....every 5 minutes for 45 seconds
to 2 minutes...

The seizures stayed the same. Didn't get any bigger.
but, looked more like seizures he has had in the past.

They have continued through the night. Finally, the nurse
gave Hollister some valium around midnight. Not sure why
it was rectally, but assume it was from my home med sheet.
Asked her why we didn't use the PICC line and give it IV.....

( Got a PICC line on Thursday. Central line in his neck needed
to come out.
Thought maybe he could go with a line..hahahaha
Everyone thought I was so funny!

Just trying to get home! )

The nurse did call and talk to neurology...of course the
doctor on called doesn't have a clue who Hollister is or
what MELAS is...

Without seeing him, she could safely say they were Focal
seizures...won't hurt a thing.....

That is tortuous for me!!

And these are different seizures than he had this afternoon,
and all week.

So, waiting for daylight...and the unit Doctor to get here
and look him over...and another neurologist!!!!

Good news...his fever is down tonight...finally!!

Team Tough needs extra thoughts and prayers...

Tuesday, April 17, 2012 11:11 PM CDT

Hollister continues to breath on his own...
A wonderful sight to behold!!!

It has been joyous to watch him as each hour passes.
He has had a few rough moments...but as I would expect
he has worked hard and done well.

He did great with the therapist again today.
She wanted Hollister to sit in a Gerry Chair...and I was
less than thrilled to be honest...They serve a purpose but
they are not very nice.

Well, much to my happiness, she brought in the cadillac of
Gerry Chairs...It is BE-A-U-TI-ful!!! It is new and has
power and works like a dream. Hollister was able to sit in it
most of the afternoon. The nurses were able to change
his position and make him comfortable.
He looked good...

Until....

around 1730 (5:30) he had a grand-mal seizure and then
15 minutes later he had an even bigger one...It was time
to leave the chair.

Unfortunate for Hollister....his temp has also been going
up slowly....

So, much to my dissappointment, I see a day or two in the
ICU...I was sure we would be home by now.

I am reminded that Hollister likes to do things in his
own time...

Team tough is again waiting for the seizures to stop!!!

Monday, April 16, 2012 11:05 PM CDT

Extubation Extubation Extubation

Tube is out!! Tube is out!! Tube is out!!

1210 today, Darren from Respiratory pulled that nasty
7.5 endotraecheal tube out!!!

Much anxiety and nervousness followed...

Still nervous tonight that Hollister can continue to breath
in the good and exhale the bad....

He has a couple of very tough episodes. The first one was
40 minutes after extubation and his Oxygen Saturation dropped
into the low 80's...He was struggling breathing to fast
and shollow...

The morning started a little rough, he wasn't tolerating the
weaning process. Had to turn the ventilator up...
He threw up a bunch of nasnties from this gut...

Then therapy came in and sat in on the edge of the bed...
Hollister was awesome. He sat up well with minimal help.
He was even holding his head up well with the breathing
tube. It was amazing. I got a little teary eyed...

He was finally lying in bed, weaning mode had just started
and the doctor came in....and made it sound like he wouldn't
be getting the tube out today...
So I was gearing up for the let down...and of course the
awful word Trach...came up...makes me sick just to think
about it.

Then out of no where he said, "let's take it, we can always
put it back in if we need to..."
I kind of felt sick, nervous, and very happy all at once!!!

and 1210...the tube came out and Hollister was breathing
on his own... He has a mask on with 5 liters of Oxygen
comeing through. He is able to cough but it is very weak.

He is awake tonight listening to music and looks
pretty good. Hoping he has a restful night.

Team Tough is thankful for this wonderful gift...
but anxioius to get through the night!!!

Saturday, April 14, 2012 8:33 PM CDT

Thought Hollister would be weaned by now...

Today started with a weaning trial at 8am...Thought he was
headed in the right direction.

BUT...

He had two very large grand mal seizures between 8:20 and
9:00..Not Good..
Weaning cancelled...Vent turned to full support for a while.

Why is the question...of course with Hollister there will be
no answer.

Kind of set us both back.....

Hollister rested well most of the day. He seemed quite
alet and times. He even responds on occassion.

He was pretty alert through most of it.

Hoping and praying that tomorrow is better and we can
get that darn tube out!!!

Team Tough remains hopeful.....

Friday, April 12, 2012 11:40 PM CDT

It has been a long week since Hollister has been here.
I had to remind myself that he has only been here a week
but the last 2 weeks at home were pretty rough!
It is time for him to heal!

It has been a week of ups and downs. Trying always to focus on
what is good..
I truly believe there is a lot of good.
This unit and the care that Hollister has gotten is fantastic.
I just hope he isn't expecting this kind of
service at home!

He is still intubated, central line and foley in place.
These are all Hollister's enemies. The sooner they start
to come out the better for him and his Mom.

He continues on the strong IV antiobiotics for the pnuemonia
and some of seizure medications are IV. Those seizure meds
will
have have to go through his gut...so there is some "figuring"
out yet...

He had a situation with not pooping. The intensivist made
the comment that he cannot be extubated until that stool
had moved...He also said the word ileus...This is a very
bad word for all of us, especially Hollister.

On Wednesday, I had asked to please have therapy come and
stretch him and sit him up. Hollister cannot lie in be for
a week, without some form of therpay of movement...
Good for his muscles, lungs, and bowels...

Therapy came today...and stretched him well.. He even responded
with a very noticeable grimmace..She also said his muscles
didn't feel to bad. (nice to hear....)...
Most imprtantly, that movement got his gut moving and he
has pooped!!

As for the ventilator...Hollister has attempted every morning
to be weaned. He is just too darn weak...Makes me very sad
and nervous..

Today, 25 years ago Hollister was baptized. This has to
mean something!!! We loved the priest who baptized him,
he was awesome...but he died a few years after Hollister
was born. I feel today...maybe just maybe Father Daniel
Hennessey is watching my boy...and reminding the Heavens
what needs to be done!

He is on NO sedation. I have no idea how he has survived all
day. He is so strong and amazing. The will to live is very
powerful.
He has maintained a lower vent setting all day.
He has done well. He is more awake, but not complaining...
The hope is that sometime in the morning he will get that
nasty ETT out!!!

To borrow a few words from my friend Kathy, when dealing
with her sarcoma last summer...
"Onward and Upward"....

Team Tough remains hopeful...

Tuesday, April 10, 2012 10:02 AM CDT

Hollister has taken a small step forward.

It was determined yesterday morning that his seizres were
undercontrol and stopped. The continuous EEG has been stopped
and removed. Nice to see his hair.

The neurologist was in this morning to check on him.
He said the EEG looked Ok and their wasn't any seizures they
could see...
BUT...
We all know I hate the BUT....
Remember is EEG is not normal!!

Thanks...because I had forgotten about the brain injury that
has haunted me for the last 10 years!

No seizures is very good news.

Lots of trials...

The weaning of the versed was good...obvioiusly no seizures
started back up...

Yesterday morning all versed was off at 5am....Then...
I was told they were going to try to wean him off the ventilator..
Shockec but thrilled...
Unfortunately, my hopes were crushed and nervousness has
now seet in. He failed and ventilator settings were turned up.

Tried again this morning...He did indeed make it a little longer
BUT
was working too hard and FAILED...Ventilator and oxygen turned up.

I did get a chance to see his CXR(chest x-ray)...
and it looks rough...worse than I had hoped..

He looks better today. His color is better. He is definetly
more alert...(not sure if alert is what you want when you
are intubated....)
and has started lifting his head and moving his legs and arms....

Team Tough is still needing lots of prayers and thoughts...

Sunday, April 8, 2012 1:29 AM CDT

He is Risen!!!

What a joyful day for Christians all over the world!
We are blessed!

Hollister is still in the NTMICU. He is still intubated,
on the continuous EEG, and all of the other tubes and
machines that go with that.

Hollister's blood gases have straighted out and are
normal. This means that Vent settings for the ventilator
(breathing machine) have been changed and he appears to be
breathing over the vent settings!! all good.

His EEG shows no seizure activity but it also shows that
Hollister's brain is very sedated.

His CXR showed that there was some improvement in the
pneumonia!

His urine output has increased without any medical
intervention!

He is tolerating his food running continously and is
getting all of daily calories.

The weaning of the Versed
(medication to stop seizures and sedate)
started tonight at 1800 6pm...
If tolerated, it will be decreased by 5mg every 4 hours
until a dose of 2.5mg an hour is achieved at 10am today!!!

Will be a long night, keeping my fingers crossed that he
can tolerate it...and wake up with no seizures.

Today has been a day of rest for Hollister. Hoping that
the miracle of Easter follows right into Hollister!

Team Tough is hopeful early on this Blessed Easter morning!

Friday, April 6, 2012 11:45 PM CDT

Good Friday....

A bad Thursday has turned into a horrible Friday.

Thursday morning, we moved Hollister to the couch at 6am from
the chair.
He immediately started seizing and continued into the morning.
I gave him a lot of seizure drugs and he finally stopped...
and appreared to rest.

I called his Primary Doctor and asked to have some lab work
drawn. Crazy dream...lab work, but I asked anyway..
It was ordered and a Nurse would call.
going to to be the same nurse that came last year..and
really annoyed me and never got a drop of blood...
already anxioius...

but...."Matt Foley"(what I called the nurse from last year....
a character Chris Farley played on SNL)
was on vacation...a different nurse was coming.

He came, seemed intelligent, assessed Hollister...
lungs clear vitals stable, and did an arterial stick and
got enough blood for all of the lab test!

Hollister continued to rest.

Talked to the nurse around 5pm...Hollister labs were all
good...only the dilantin level wasn't back...

Felt better...

0100...1 am

Hollister is having a huge seizure and is shaking the
whole bed....

I get him some meds...and diastat(20mg of valium)...
and he continues..

I have Dick come down at 3:30 to explain what all I had
given and seizing not stopping...

We transported by amubulance to Mercy around 0430...

Not all the seizures were big so didn't seem to bad to anyone.

Feeling a little relieved and a little stupid....

BUT!!!!!

Things progressed as I feared....

big seizure drugs...affected respiratory drive...
by 0630...could not keep his oxgyen above 85....

Intubated, central line....foley inplace, Drugs...
and kept seizing and seizing...Hollister was hurt and
struggling. It was horrific.

thing happened very quickly and effiently.

A CXR confirmed pnuemonia in his lower lobes...
My worst nightmare confirmed!

We were transferred to the NTMICU around 10am...

The versed kept being increased until it got to 25mg an hour...
A continuous EEG was placed...
and the seizing finally stopped around 1600...4pm.

He was sedated(stoned) and looked comfortable for the first
time in 2 weeks.

Wondering what changed in 12 hours from the nurse at home
checking him to this....
Uncontrolled seizures SUCK...

I thank God tonight for the lots of things...
For Hollister's strength and courage
For fire house #9
For the Doctor in the ER
For the nurses in the ER
for the excellent care in the ER!!
For the NTMICU...this is a place.
Good Doctors
Good nurses
and good care!!!!!
I thank God and the Holy Spirit for the gentle nudge and
guidance and common sense;
to keep Hollister safe and when exactly to bring him
to the ER.

On this Good Friday, Holiest of Holy days,
Team Tough needs thoughts and prayers.

Thursday, April 5, 2012 1:03 AM CDT

It has been a very long 2 weeks.
Most of it in the basement!

A little Harrison news.
Last week his Mock trial competed at the state mock trial
competition. Last month started the road to state with
regionals, districts, and now state.
There were over 300 teams hoping to get to state, Competion is fierce.

The DCHS team that Harrison is on made it to the final four.
This is huge. His team has never finished in the final
four. The final 4 compete on Friday at the state Judicial buliding.
This is big!
We were all hoping for #1, to make it to nationals...
but...
top 4 in this state is very very good.

As for Hollister, his IV came out last Thursday after 12.5 bags
of fluids..Decided to try a little tube feeding on Friday.
He tolerated the one can I gave him over 6 hours..
Saturday he looked pretty good. Sunday, we got out of the
basement and Hollister made it to the front porch.
Thougt he was better...

Silly me..
Same song second verse...
a little bit louder
and
a little bit worse!

Monday morning, up bright and early...Made it upstairs sitting
on the couch..Started his morning, with his routine
feeding schedule. It has been 11 days since he has had
real nutrition....

By 9am...he had vomitted it all out...and then some...

Day proceded to go down hill..

He started seizing around 4am on Tuesday morning...
Different seizures than last time...
staring followed by very large left sided seizures...

They were 15 minutes apart until 0800...
It was awful..
Again not sure what to do...

Lots and lots of drugs...
gave him someething for nausea...
and started a gatorade drip into his gut...
I knew he was dehydrated...

He slept or was sedated most of the day...I sat by his side
all day...watching and giving meds...

He did wake up around 6pm...Harrison helped me shower him....
He needed one in the worst way....
He of course seized in the shower and when we got him out.

He looked rough!
I did get an IV started in his left thumb...
Again....not sure how!!!

I decided to keep the gatorade going as well as the IV...
He is tolerating both well..and is having good output..

He was more awake at times today. He also slept well today.
No extra medications...regular seizure medications all day.
He did have 4 or 5 seizures today, but nothing like yesterday.

He is awake now with that annoying cough and rattle.
His weakness and brain injury is awful....Leaving him with
the inability to spit...His cough is weak...works hard to
move the sputum...mostly old thick spit....and then it goes
no where...

Nights like this I wish we had cable..hahaha

My fear of taking him to the hospital...Is pnuemonia, Intubation, infection....
all this is waiting for him on addmission.
If I can keep him safe at home....I am going to try every
thing I can...

Hoping today is better...and Hollister turns this all around!

Team Tough continues to need lots of thoughts and prayers......

Wednesday, March 28, 2012 4:31 PM CDT

Spring has sprung...

We made it through another winter!!!!
For winter, it wasn't bad!

Tulips are blooming in the yard, hostas are growing inches
daily, and the lilac bushes will be blooming soon.
What a spring it is!!

Earlier than I can ever remember.

Unfortunately for Hollister spring is tough!

He has been fighting allergies and sinus drainage for a
couple of weeks. Translates to increased vomitting and
questionable drug levels...

Friday morning, I gave him a Mucinex liquid...that I shouldn't
have given. I usually give him the pediatric liquid..
but...
I had an adult liquid that had additional medications in it....

A few weeks ago I gave it and he had a Tonic Clonic seizure...
Not putting it together until I gave it the second time...
and he had another very large seizure...

Friday morning, I was tired and saw it on the counter and gave
it to him...
Three hours later he had a big tonic clonic seizure...
I was very mad at myself...
Needless to say it went directly in the garbage...

He has NOT recovered yet...
He was sleepy Friday, and on Saturday he had several smaller
seizures..and contiued with the vomitting.

A shower before bedtime on Saturday night and he looked
good and comfortable...hoping the worst was behind us...

WRONG!!!

Started shortly after midnight....
Vomitting and slight facial twitching...
This went on and on all night.

Found the suction machine and was suctioning lots of junk...
trying to keep his airway safe!

Every 30 minutes the seizures(twitching) were getting bigger
and lasting longer...
Finally at 0800 Sunday morning I gave him all of his morning
medications...and had nothing left to give...

and the seizures were now 15 minutes apart...

The tiredness and nervousness started to weigh on my brain.

Wasn't sure who to call, an ambulance or neurology...
So, I called neurology....

Sunday morning, I knew it would be a while before he called
back....
Fortunately, all the medications I gave him started to help.

When he call back the seizures were now 45 minutes apart and
had started to lesson a bit.

So, I talked myself out of an ambulance ride...and asked
how much of his drugs I could give...safely...

He was hesitant and reminded me to watch his respirations
carefully!....and to call for help immediately!

Ignorance and stupidity are certainly my strong points...

I got an IV started in the palm of his index finger....
Not sure who gets the credit...God or the Holy Spirit!!
I was then able to give IV zofran to help with some of
the nausea and vomitting!

Still running fluid and just hung bag #10!!!

Still had a few small seizures on Monday and Tuesday...
Neurologist called me today...first I got yelled at for not
calling on Monday...Then he kind of said good job...keeping
him at home, away from all of the sick people.

Did call his primary doctor yesterday and got some antibiotics...
Hoping that they help him!

Today he is still very lethargic and weak. Not good at all.
Hoping tomorrow he will start to feel better...

Team Tough needs some prayers for Hollister!!!

Friday, March 9, 2012 9:35 AM CST

Happy Birthday to Hollister!

25 years old today....

Happy birthday to Hollister.

I am so lucky to be his Mom. Blessed!!!

Hollister and I have spent the week with Hillaree in San Antonio.
It has been a blast. Hollister has done amazingly well.
Hillaree had spring break this week and really wanted to bring Hollister here.
He has smiled and laughed a lot!

It is awesome to see Hollister respond to Grandma Edna and Papa Ron.
When we arrived at their house it was like he knew right where he was.
He responded to them and loved hearing their voices.

It is so exciting for me to see him reacting in such a positive way.

We took Hollister to lots of "our" favorite old places and visited some new.
He always loved to go everywhere here.
This is Hollister's favorite place. Has something to do with his being born here.
He has always considered himself a true texan!

He had been planning since he was 5, that he would go to the University of
Texas and be a long horn.......hook em horns....
Hollister's heart has always been deep in the heart of Texas.

Hollister has done well this week. He is tired We did let him sleep in everyday.
Traveling with a 20 and 25 year old is different then traveling with an Old man.
(sorry Richard...)
Hillaree and Hollister like to stay up LATE and sleep until NOON.

It has been a fun week. We are having a Birthday Party at Grandma and Papa's
house today. Hollister will love that!

Happy birthday to Hollister.

Team Tough is deep in the heart of Texas!!!

Tuesday, February 14, 2012 9:58 AM CST

“We are all a little weird and life’s a little weird,
and when we find someone whose weirdness is compatible with ours,
we join up with them and fall in mutual weirdness and call it love.”
¯ Dr. Seuss

Valentines Day...

Growing up we always had a heart shaped cake for Valentines
Day. My Mom would bake it and frost it, it was always yummy.
It was always for my Gramp's birthday. He was lucky enough
to be born on Valnetines day...1901...He died a week after
his birthday my senior year of high school. We (my siblings
and I) were all so lucky growing up; we got to see Gramps
almost everyday. I thought he was wonderful. I loved
spending time with him.
Any time in my life, when the question comes up...and
surprisingly it does....Who, dead or alive, would you like
to spend 5 minutes with..My answer has always been my
Grandpa Ferstl. I always saw so much more in him.....
Happy Birthday to a man who has been gone from this earth
for 30 years next week....but, who has stayed in my heart
always.....

Fittingly, Hollister had his cardiology appointment yesterday.
His heart appears to be stable. The pericardial window
appears to be working. The fluid around his heart continues
to drain away! His lungs look good, left side is fully
inflated on the standing x-ray. There is no evidence of
myocardial myopathy, which is common in MELAS.
The left ventricle continues to thicken, that will be watched.
He will continue on the Digoxin.
Follow-up in 6 months...A good visit!

Hollister then went to pool therapy after that and
had seizures in the pool. Not fun!
Now, I know why I get in the pool with Hollister and
Esmie(pt) every week. It is not just to talk.....

Fortunately,(by the grace of God or a slap by the Holy Spirit)
I had taken seizure meds with me when we left the house
at 8am...

Esmie and I were able to keep Hollister up and I was able
to access his button and give him some meds before we got
him out of the pool. That is teamwork!
He siezed again in the wheelchair. He got no shower and
we hustled home.

Didn't help that he didn't sleep on moment Sunday night/monday
morning... Neither did I....

He finally dozed on the couch...

Looks better today, and so do I after sleeping last night!

He is still very weak. He is having a hard time sitting up.
Most times his head is too heavy for his weak neck to hold
up.
Lots to work on!!!

Team Tough is looking to better days.

Wednesday, January 25, 2012 5:31 AM CST

Hard to imagine that January is almost over.
I really had good intentions of updating ya'll on
Hollister.

Janauary much to my dismay hasn't been very nice.

Hollister is struggling...with what I don't know.
He is having some pretty awful seizures.
As we were walking out of the Boone high school on a
Saturday, after a wrestling tournament. Dick was pushing
Hollister and I was walking behind. Dick stopped the wheelchair
and was holding Hollister. He was seizing. I was quite
impressed that Dick and I were able to get him out of the
chair withOUT hitting his head on the hard tile floor!!!!!
We were right in front of the door.

Our friends Kim and Scott stopped to see what they could do
to help. We really appreciated that.
Fortunately, I had the right drugs with me.
Unfortunately, we had to wait to see if he was going to do
it again. We were an hour from home and it was night. We
couldn't deal with a seizure in the car.

This is where it gets kind of sad....As people walked out of
the doors, passing right by us, they all looked at us and
kept going. No one stopped to see if they could help us or
if we needed help. No one, as we sat on the floor by the
door with Hollister lying on the floor hundreds of people
walked by.
We were the last people out of the building. I swear we heard
the janitor yell at us to shut out the lights when we left.

Dick and I were silent on our drive home, trying to digest
what we had just witnessed. We both were a little sad by
another lesson, we felt we didn't deserve.

“As my mother says,
“You give back, you don’t give up.”
You can always choose to help others.
If you do, it will change you.”
Susan Ford

Hollister has missed swimming and therapy so far this year.
He is weak and out of sorts. He stays up for days and wears
himself out. He has been crying a lot. Seizures are out of
control.
Not sure what to think, but I am wondering if he has had
another stroke. He seems much weaker in his right leg.
He has been acting like he has when he has stroked.

I have been racking my very tired brain trying to figure it
out. I have made some adjustments to his meds and feeding
schedule and I think it is helping!?!

Hollister and I have spent January in the basement. I feared
this would happen. We are missing our Hooch Dog everyday!

Team Tough is on the mend!

“Giving frees us from the familiar territory of our
own needs by opening our mind to the unexplained
worlds occupied by the needs of others.”
Barbara Bush

Sunday, January 01, 2012 1:41 AM CST

New Year's Day:
Now is the accepted time to make your regular annual good resolutions.
Next week you can begin paving hell with them as usual. ~Mark Twain

Happy New Year.
New Years Eve isn't nearly as fun as it used to be....

We did have a nice time tonight. Had some family and friends
over and played some cards....

Time to let go of 2011.

I am glad to see it go. As years go, this one kind of sucked!
It was a hard year for all of us.
Hollister had no Hospitalizations this year...Thank God...
But, I do remember how sick he was this spring and couldn't
get him admitted anywhere...That was rough...

Hillaree has had her ups and downs with college, friends, and
life. Hopefully, 2012 will be a smoother year for her.

Harrison also had some ups and downs this year. He handles
it all with so much faith and strength.

Hard for me to see them struggle, they have been through a
life time of pain, loving Hollister.

"You can say any fool thing to a dog,
and the dog will give you this look that says,
`My God, you're RIGHT! I NEVER would've thought of that!'"
- Dave Barry

It is with saddness I write that our Hooch Dog Farrell
died on December 30......

First I didn't know dogs got Cancer...Canine Cancer is real)
Second, I never expected Hooch to get sick and difficult
decisions would have to be made....
Third I had know idea that 2 weeks after diagnosis,
would be dead.
Fourth I hate that I wasn't given any options......
Fifth I hate how much having him die is hurting all of us...
even Hollister has reacted....

Our Holidays were filled with anxiety and grief watching our
faithful companion struggle.

We faced our first New Years Eve without him since the
turn of the century...

I am worried as life gets back to normal and Hillaree goes
back to school and Harrison starts back...
Hollister and I will be left a lone with no Hootch.....
He was my reason for going upstairs, outside, getting dressed...
He was my true companion who followed me where ever I went.
He would find a soft warm place to lie...
He never judged me once. I talked to him all day and he would
listen intently. He loved when I cooked or baked something
hoping a little would fall to the floor for him!
He knew our routine and expected me to keep it!

"Old dogs, like old shoes, are comfortable.
They might be a bit out of shape and a little
worn around the edges, but they fit well."
- Bonnie Wilcox

Who knew that having him in our family for 12 1/2 years would
bring so much joy... He was a great dog...

The Beaverdale Beagle!!!

"The more people I meet the more I like my dog."
- Unknown

As we head into 2012, I am hoping only good things for
Team Tough!!!

Sunday, December 25, 2011 1:54 AM CST

Merry Christmas!!!

Everyone is finally nestled into their beds...I hope visions of sugar plums are
dancing in their heads!

Hooch and I sitting here enjoying soft Christmas music with the warm fire.

We had a very nice day today...Christmas Eve, one of the best days of the year.

We are so very fortunate that my parents come down to spend Christmas with us.
We love having them here. My sister Jerri lives very close so she adds one more
to our little party.

Dick and I did indeed get our shopping and wrapping done with time to spare.
We did end up going to the mall on Friday for one last little thing. I thought Dick
and the "Kiosk guy" were going to blows over a remote control helicopter!!!!
fortunately, a quick call from Hillaree and we were on our way to JCPenny's...
we found exactly what we wanted...Cheaper and NOT from the "Kiosk Guy".....
as we walked by on our way out....Dick couldn't help but show him the great deal
that we got.....Merry Christmas...I think something like that was said...hahahaha

Tonight as I was in my own little home, with my own little family and friends...
I felt extremely blessed. The last 10 years have taken to places that we never
wanted to go.
But, for tonight all that mattered was we were home. We were surrounded by love!
Love from my family, love from all our friends who helped make this Christmas joyous....Surrounded by music, laughter, delicious baked goods,
fruit basket, and my oh so yummy cheese bisquits all the way from Heaven!

It is very hard not to be humble and overjoyed at the same time by the generosity of you. Thank you to those who helped Christmas be even more
joyous at our home! You make the true meaning of Christmas so real for us!

We ended our Christmas Eve at Midnight Mass...at midnight.
It was a beautiful celebration and left us wanting more. I could have listened to
and sung Christmas Carols longer....( No really wants to hear me sing..hahaha)

Harrison was overheated in Mass and couldn't take off his sweater. This made
him drowsey!!! Of course this made for a little entertainment watching his
head bob perfectly. HIs posture was perfect his arms were on his legs and his
hands put together as if he were praying. His eyes were shut and his head would
drop slightly and he would bring it back up effortlessly.... It was awesome!!!!

(I do fear he may have done this before...maybe in class) hahaha

Can't wait for morning...I better get to bed. I would hate for Santa to miss our
house!!!

Team Tough is Merry Merry!!!

Merry Christmas to all and to all a good night!!!

Tuesday, December 20, 2011 10:00 AM CST

Hard to believe that I hadn't written a note since Thanksgiving.
Seems so long ago......

Thanksgiving truly was a long time ago. I know because Hillaree
hadn't been home since then....

Christmas is only 5 days away...
Yikes...
Finally....got a tree up Sunday.
Hillaree wanted us to wait for her.

Dick and I and Hollister were able to make it to Candlelighting
at DCHS.
I love Candlelighting and the Christmas Spirit that fills that
gym.
It is very powerful!

"And what happened then?
Well, in Whoville they say that the Grinch's small heart grew three sizes that day."

Another 10 years of illness...
has changed Christmas for me!
I like everyone has collected ornaments for my family since
day one....
Ornaments tell the story of your family..
Generally they bring great joy to bring them out every year...

but....

for me, it is a reminder of our life and all of our hopes
and dreams...
Some of you may remember, Christmas 2005 I did indeed get
out the ornaments for the kids to decorate the tree....
and it tipped over and many were lost...

So...every year it is a challenge for Hillaree and I to
decorate our tree...

This year, we provided love and lights......

And our tree once again is different, but simple and pretty....

We have prepared our hearts for the 4 weeks of Advent for
the Birth of Baby Jesus.....

But,
we have not yet started preparing for the celebration....

It came without ribbons! It came without tags!
It came without packages, boxes, or bags!
-Grinch

There is still a few good days for shopping, wrapping,
decorating, and baking/cooking...

Hollister had a "bug" and missed some therapy and slept
it off...He is feeling better and finally back at therapy.

He had a neurology appointment locally and as you can imagine
the lab draw was AWFUL....
Fortunately, a good stick finally happened and his labs
are good!

The Doctor was optomistic and thought Hollister looked good.
His brain is stable and healing is happening...

YAHOO!!!

Hillaree is home for a couple weeks..
Harrison is done tomorrow with semester finals.
He has been busy with Wrestling and school.
We are all looking forward to the 2 pound weight allowance
after Christmas!!

Team Tough is Merry Merry!!!

Charlie Brown:
I guess you were right, Linus. I shouldn't have picked this little tree.
Everything I do turns into a disaster.
I guess I really don't know what Christmas is all about.

Charlie Brown:
Isn't there anyone who knows what Christmas is all about?

Linus Van Pelt:
Sure, Charlie Brown, I can tell you what Christmas is all about.

Linus Van Pelt:
"And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, 'Fear not: for behold, I bring unto you good tidings of great joy, which shall be to all people. For unto you is born this day in the City of David a Savior, which is Christ the Lord. And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.' And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, 'Glory to God in the highest, and on earth peace, good will toward men.'"

Linus Van Pelt: That's what Christmas is all about, Charlie Brown.

OR......

Bart Simpson:
“Aren’t we forgetting the true meaning of Christmas?
You know, the birth of Santa.”

Thursday, November 24, 2011 5:32 AM CST

There is one day that is ours.
Thanksgiving Day is the one day that is purely American.

Happy Thanksgiving
Thanksgiving at home is always a blessing.

The house is still quiet but I fear not for long.
Hollister is restless already.

Still remembering what happened to change our lives 10 years ago...
We celebrated our first Thanksgivig at the Ronald McDonald House.
This was the first of many Holidays spent at RMH at Rochester.
The Thanksgiving of 2004 we got a day pass to come home and
it was fantastic. In 2007 on Thanksgiving day, Hollister
headed to surgery to get his yeast infected port removed.
We were given a very grim prognosis of death....
2009 we got a day pass from OWL for Thanksgiving at G-ma
and G-pa's house.....

Hollister has a history of being hospitalized during a holiday...
This year we are HOME and we are Thankful!!!!

Forever on Thanksgiving Day
The heart will find the pathway home.
~Wilbur D. Nesbit

It is nice to have Hillaree home, Harrison gets a couple days off....
not much eating for him...wrestling has started....

Hollister has been struggling some seizures..which lead to
vomitting and getting his days and nights mixed up...

We will be enjoying Thanksgiving at my Grandma Mary's table
with the newly re-glued chairs....with my Mom and Dad and
sister Jerri....We are blessed!

We have so much to be thankful for this year....
Hollister had had a relatively good year....
Hillaree and Harrison are thriving....
My Mom remains healthy...
My dad continues to enjoy his good health...
My sister Judy has had no Cancer scares this year...
My friend Kathy made it through her cancer nightmare...
strong and cancer free.
Dick still has his faith....
For the most part I still have my sanity...bahahahahaha

Thanksgiving, man. Not a good day to be my pants.
~Kevin James

Team Tough's hearts are warm and Thankful!!
Nothing is more honorable than a grateful heart.
~Seneca

Give thanks for unknown blessings already on their way.
~Native American Saying

Wednesday, November 2, 2011 11:13 AM CDT

TODAY IS THE DAY!!!!

An anniversary is a time to celebrate the joys of today,
the memories of yesterday, and the hopes of tomorrow.
~Author Unknown

To me, this is the day that changed Hollister's life journey
forever.
Not to mention the changes that our family has made in the last
10 years.

It seems very lonely to me to know that Hollister and I are
marking this day.....alone and very quiet! Actually, he is
sleeping and I am doing laundry!!!

Much different than November 2, 2001.......

I can remember every detail of that day and the days that
follow like they are happening at this moment....

I do know for fact, that when a Doctor tells you that your
son has a very rare mitochondrial myopathy....and he is not
expected to make it home....You never forget!

AND....

You immediately start praying and pushing....just like on
the day he was born. Reminding every doctor and nurse that
walks into his room....That he is Hollister Richard Farrell
and not "a kid like this...or kids with Mito usually don't
live this long...or I am sure this kid never walked look at
his legs....) and he is freshman at DCHS. He is a football manager
and played hockey and baseball last year. He is smart, has a
dry sense of humor and loves pizza and pepsi!!!! He is very
spiritual and loves to argue sports, politics and religion...
He loves the Texas longhorns, Iowa State Cyclones, and the
Dallas Cowobys.
Anyone who walked in his room, walked by or met me in the laundry room...
knew who Hollister is!

What Dr. Whiteman told us 10 years ago....
"if you can keep Hollister organ healthy.....
big things will have happened for
MELAS patients..."
Dr. Whiteman has long been gone from Mayo....
but his words have lived on.
Every year that has passed....Hoping and trying to get to
10 years.....

HERE HE IS!!!! TEN years and organ healthy.......
We did it!
and....no big news in the research of MELAS...
no enzymes isolated....no cure!

When Hollister was first diagnosed I knew we would make it
to ten years. I didn't have any idea how difficult it would
be. Ignorance is a gift!
I wasn't sure what I would write about this date.
I initially thought I would write about numbers...

Number of......
helicopter rides to the Mayo Clinic
days in the days in the hospital
days in the PICU
days in the NTICU
days in rehab
days at OWL
hours in the ED
hours at PT, OT, SPT
of intubations
days intubated
of prescritions
of MRIs
of CTs
of CXR
of ultra sounds
EEGs
EKGS
lab draws
of PICC lines
of doctors
of residents
of nurses
central lines
surgeries
and last but not least $$$$$$$$$

But...

I decided that could be overwhelming to figure out. Some of it
I know....but a lot of it would be depressing to know!

I am writing to CELEBRATE (not the party in my dreams of
10 years ago) Hollister. He is amazing. He is smiley and
happy. I know in my heart he is responding to me and knows
that he is loved. Hollister continues to be strong willed and
very opinionated. He works hard and tries his best.
I am sure that God loves him and is surrounding him
with only the finest of Angels.
I see him at night looking into the dark and smiling a wonderful
smile fueled by God.

I am his very proud Mother and I will continue to champion his cause.....

Team Tough is proud and happy to make 10 years....

If you're going through hell, keep going.
~Winston Churchill

.

Tuesday, October 18, 2011 3:28 PM CDT

I knew when this year started it was going to be a tough one!
The days, weeks, and months have ticked off the calender
increasing my anxiety. I have played it over and over in my
mind...If we could only get to ten years.....

Now 10 years is upon us and a feeling of dispair and dread
are filling my soul.

When May first passed followed by the next 118 days, I couldn't
help but remember 2006. Hollister has been unable to walk,
talk, eat or do much....for now 1/2 of his illness. Five
of the 10 years!!! As soon as September 1 passed he has now
spent more time of his illness home bound, sitting a chair,
not eating, or participating in life!

Now, as the end of October approaches, calender days take me
somewhere 10 years ago.... Life was relatively normal for us before fall of 2001....
I don't recognize my life, my family, or my home....

Conferences for Harrison are this week... I know that Hollister
10 years ago, we had Hollister at the neurologist both days.
That darn Depakote was causing problems...(little did we
know that he wasn't able to metabolize it. It was already
exacerbating his illness...)

He was feeling poorly, yet over the moon with his DCHS football
team.....

I can't help but feel disappointed and anxious for the
awful memories that flood my mind....

Team Tough is remembering......

Hollister is starting to feel better I think. He finished his
2nd round of antibiotics, hoping we caught it early.
He is still only able to keep about half of his feedings
down...

Monday, October 2, 2011 11:12 PM CDT

Happy Birthday to Hillaree!!!
It happened today, she turned 20!

We drove up to see her at USD to celebrate part of the
day with her.
Her dorm/living space is handicap accessible this year so
we were able to take Hollister up to her room. This is a nice
change from last year.

Spent a nice afternoon with her, watched a movie, had a great
lunch and headed home. Would have been awful not to see her
on her birthday!!!

Harrison had a great homecoming week. Winning the game on
Friday was a bonus! He had a great time at the dance and
after party. He did mention he "almost" got asked to leave the dance....
He is just the right size to be picked up and was
"body surfing" over the seniors....mostly football players!
Apparently, this is not allowed! ha

I couldn't help but chuckle!! took me back a few years ago.....
when Hollister went as a 6th grader to the end of the year dance
with the 6th, 7th, and 8th graders. He told a very similiar
story of "body surfing" over the crowd. He was deligted talking
about it....
One of the advantages of being a Farrell...hahahaha

Hollister has the crud! Unfortunately, the crud has also
lowered his seizure thershold.... Has been a couple of ROUGH
days!
Saturday night, it looked very possible he was headed to the
Hospital!
BUT....
This stubborn Mom continues to operate on adreneline and
ignorance and got lucky one more time!
His last seizure was around 2200(10pm for you Phil....)...
and his last big emesis was around 0200...Then he finally
rested! Kind of......

I was determined to see Hillaree, so we loaded him up at 0730
and headed to Vermillion. He had gatorade running through
his button and he slept all the way there. He slept on the couch
at Hillaree's and then he slept all the way home. He got
part of his Cocktail and lots of gatorade for hydration...
He was very very dry. Finally peed tonight!

We wondered if he really knew we left home!!!

He is resting peacefully on the couch with his head elevated
and the gatorade going.

My lovely cot awaits me......Now if I can only move Hooch to one end...hahaha

See what tomorrow brings.....

Happy Birthday to my sweet Hillaree Mae!

Wednesday, September 28, 2011 1:21 PM CDT

Fall....
Doesn't seem possible.

I have never been one to be sucked in by Fall's beauty...
knowing that winter is really knocking on the door!!!

Everyone must take time to sit and watch the leaves turn.
~Elizabeth Lawrence

Hollister and I are trying to enjoy the nice days when
we can.

This is a big week!
This is the last week for Hillaree to be a teenage!
Struggling with this more than she is.... I still remember
the sweet little girl with the Barney underwear and Las Vegas shoes!
She will be 20 on Sunday. Doesn't seem possible!
She did remind me in 10 short years she will be thirty!
What an awful thing to say!

Harrison is enjoying homecoming week!
Homecoming has a movie theme this year.
As a junior boy, somehow you feel it is OK to participate
to the fullest. He certainly has! If anyone has been at
DCHS this week you would have seen him at his best!!
So far, Hannibal Lector(Silence of the Lambs)....
Daisy Duke(complete with shorts and wig)....
Today, Tinkerbell with wings and a wand!!!
He is excited for Tomorrow. Action hero?

"Today was good. Today was fun. Tomorrow is another one."
- Dr Seuss

Harrison is living and loving everything about DCHS.
He commits and participates to the fullest. I do love this
about him. I guess he watched Hollister and waited a long
time for his turn.

We continue to take Hollister to all of the DCHS football
games. The last two have been a little chilly. Hoping for
better weather for Friday. I believe that he enjoys the
games. He loves to get out of the house!

He continues to struggle with life.....
He is still having seizures, he is sleepy, and congested.
Some days are better than others!
Trying to get through this, not sure what Doctor locally can
help us!

We continue to take him to therapy, swimming and ride the
FES bike...on his good days. We are hoping sometime in the
near future to increase his therapy day.....

Team Tough looking for Hillaree to have a Happy Birthday!

At 20 years of age the will reigns; at 30 the wit; and at 40 the judgment.
- Ben Franklin

Thursday, September 15, 2011 10:19 AM CDT

Not sure where to begin...
a lot has been going on!

Has certainly been a roller coaster ride!

When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown

We are facing fall and the end of the year, 2011.
A time and place I once longed for, now it is a time of
anxiety, disbelief and saddness.
Dr. Whiteman had told us on his initial diagnosis if I could
keep Hollister organ healthy for 10 years....There would be
help for Hollister to save his life!
I certainly have done my job........
Everyday since July has been a reminder of when Hollsiter's
illness started 10 years ago.
Last Friday on September 9th, was the 10th anniversary of
Hollister's seizure on the football field during a DCHS game.
It was his first hospitalization....ever. It was a significant
loss for him and me. His seizures were no longer controlled....
and something was wrong!
We watched all of the events of 9-11 at Blank Children's
hospital....little did we know 6 shorts weeks later our
lives would change forever...

Hollister has had 3 very large...weird grand mal seizures
in the last week. He also had one 2 weeks ago sitting at the
DCHS football game. They are unlike any I have seen before.
He is very tired...and has his days and nights mixed up!
This is one of those times I wish I had a resource person
to call....but as I have lived through the last 10 years.....
I am on my own!

I am over tired...trying to decide if his dilantin level is
high...that would expalin sleeping 48 hours in a row...
but...
why the seizures with some autonomic reactions???
He had one at therapy last Friday and scared everyone...
They are very different, new seiaures!!

On the upside, when he looks good...he looks good!
We have taken him to all of the DCHS football games.
Last Saturday...(thanks to Hollister's gaurdian Angels)
Phil and Laurie we were able to get us tickets to the ISU/Iowa
game....I haven't seem Hollister that happy in a long time.
We had great seats and he laughed and smiled the entire game
and 3 overtimes.....Oh yeah and his team won.
He always had a season ticket with my Aunt Joan. He had
been going to those games for years. He hadn't been back in
probably 6 years...so he was very excited!

Hollister has had the opportunity at the YMCA/Healthy living
center to us a FES bike.

Functional electrical stimulation (FES) is a technique that uses electrical
currents to activate nerves innervating extremities affected by paralysis
resulting from spinal cord injury (SCI), head injury, stroke
and other neurological disorders.
FES is primarily used to restore function in people with disabilities.
It is sometimes referred to as Neuromuscular electrical stimulation (NMES).

Not sure how much he likes the bike, but I do!
Last Tuesday in mostly a sleeping state he rode 4 miles
in about 20 minutes.
He is starting to overide the stimulation and do some pedaling
on his own.
he sits in a wheel chair to pedal.
He does have the stregth and stubborness to stop the bike.
The PT first thought it was spasms and I kept disagreeing.
I know Hollister!
He finally agreed when Hollister lifted the front 2 wheels
off the ground. The PT was pretty impressed with his strength....
the wheelchair is secured with straps to the pedals!

Stubbornly persist,
and you will find that the limits of your stubbornness
go well beyond the stubbornness of your limits.
~Robert Brault

I am hopefull that we can continue to use it!!!
I do know that good mitochondria reproduce faster with
aerobic exercise!!! Hollister needs all the healthy
mitochondria he can get!

I am hoping that Hollister can pull himself back up again....
and I can figure it out!!!

It's not that I'm so smart,
it's just that I stay with problems longer.
~Albert Einstein

Team Tough is quoting my good friend.....
We are moving....Onward and Upward!!!

Thanks to Mrs. Johnson's class for all the awesome
notes to Hollister! We love them!!!

Friday, August 12, 2011 8:58 AM CDT

"Today you are You,
that is truer than true.
There is no one alive who is Youer than You."
— Dr. Seuss (Happy Birthday to You!)

Happy Birthday to Harrison.
Hard to imagine he is 17 today.

Seems like yesterday Hollister had the entire St.Theresa's
school praying for a brother.
What a brother he got. Hollister was very proud of the fact
that he touched him first when he was born! They were the
best of brothers.
Hollister is 7 years older than Harrison, for Harrison that
was a challenge. He learned very quickly to talk, walk,(run) throw a ball,
play hockey, roller blade, ride a bike, love Harry Potter,
argue with the intensity of an adult, and love all things
sporty!
Harrison was only a first grader when Hollister had his
first stroke and was diagnosed. Harrison kept Holliter going.
He didn't quite understand so he expected Hollister to continue
to play street hockey, whiffle ball, and ride his bike.
Harrison couldn't have been better medicine for Hollister.
Probably for all of us.

Harrison has always been a perfect mix of Hillaree and Hollister.
The good and the bad!

On the day of his 17th birthday and I am very proud of the
strong young man he has become. He is funny, loyal,strong,
compassionate, hard working, and just plain Man pretty...hahahahaha
I am most proud of watching him grow in his spirituality.
His faith and trust can be seen daily in the decisons he
makes. It is amazing to see!

Happy Birthday Harrison, you are loved!

Hard to imagine that Hooch Dog has been with
us 11 years this week. Seems like yesterday we rescued him
from that trailer!!!
We love you Hoochie!

Hollister has had a bug of some kind all week. Been awful.
I almost feel bad for the washing machine!
He is up this morning and appears to look pretty good.

His appointments at Mayo were good. Everyone thought he looked
good. Neuro and genetics were very optimistic. Heard it twice
that there is no way of knowing just what the L-Arginine is
doing in his brain. Could be new pathways as we speak!
Therapy, Therapy, Therapy!!! MORE, MORE MORE!!!

All of this good news comes at the same time that his
therapy is being cut from two days to ONE!!!
Last summer we went from three to two and now ONE!!!

so, we are back at where we were before 2009, when Hollister
got to spend 6 weeks at One with Life.

It is sooooooo frustrating that Hollister's illness and
brain injury are so compex!
It is very difficult to explain 10 years of Hollister's life!

Our time with Hillaree is winding down...............

Team Tough is celebrating!!!
Happy Happy Birthday to Harrison!

All your dreams can come true
if you have the courage to pursue them.
- Walt Disney

Friday, August 5, 2011 12:07 AM CDT

Seems silly to still be up....
We need to get up at 0430 and shower Hollister and be on
the road to Rochester by 6.....

Why is it, when it is bedtime you always remember clothers to
fold....and in the case STUPID paperwork for our appointment.

So here I am, laundry and paperwork.

I always try and do it on the Mayo Clinic network but it
seems more times than not...I am filling out the exact
same paperwork in person.
and I don't understand why I need to list his 26 medications
when all but one of them is prescribed by THEM!!!!
Just remembering all of drugs is a full time job.
Don't ask me telephone numbers of Doctors I call once a year!
and....
His assessment hasn't changed in 5 years!
He still lives with us, doesn't drink, doesn't smoke, doesn't
consume caffeine, and isn't in an unsafe relationship....

Someday, I am going to randomly fill it out....just to shake
things up!

Hollister looks good. He has done better in therapy the past
week.
I think he is starting to get CABIN fever and is very tired
of watching OLD movies with me. Most days we sit in the
basement where it is cool.

Hillaree's summer is winding down and is starting the process
of getting ready to go back to school. This also makes me
very sad.

Harrison is deep into football. Don't have any idea how those
young men survive in the heat! Been going strong for a week!

First game is two weeks from tonight. Does not seem possible!

Hoping our day at the Clinic goes well.
My goal is for them to see what I see!

Team tough is heading north to see "the Brother's Mayo"

Thursday, July 21, 2011 1:24 PM CDT

Only a month left of summer....where has it gone.

June was all about rain and July has been about HEAT.
Unfortunately for Hollister and I we have spent a great deal
of time inside.....just like winter!

Harrison is at football camp this week. He has already gone to
wrestling camp in Estes Park, Colorado and Lincoln, Nebraska...

I am sure he will be camped out!

Hillaree has been busy working. She has next week off and
is headed to see Grandma Edna and Papa in San Antonio...
My kids love San Antonio and think of it as their home
away from home....wish Hollister and I were going along!

July 12th, Hollister, Dick and I headed down to the Capitol
to sit in on a meeting and voice our concerns over changes to
respite care through the waiver system. Of course the meeting
room was not large enough to accomodate the group that came.
We did NOT get to talk to anyone. They closed the meeting rather
quickly and re-scheduled it for August.
If any of them had only thought about how difficult it was for
us to get our family members to the capitol, they would have
let us have our say....
Hollister is on the Brain-injury waiver.
This allows us to have medicaid as our secondary insurance.....
which covers most of Hollister's therapy.
Hollister being on the brain-injury waiver is a blessing for him.
Before we could get him on it, we paid out of our own pocket
$20,000 for 3 months of therapy after his second stroke
when he was just 15 years old.

The only other service we utilize on the brain injury waiver is
respite care.
We didn't start using this until the fall of 2006. That was
after that awful summer when Hollister was no longer able
to walk, talk, eat, or take care of himself.
This was my way to have a break.
I take care of Hollister 7 days a week, 24 hours a day.
I couldn't tell you the last time I selpt 4 hours.....
continually, without being awake to help Hollister.
Hollister can never be alone. That is when he falls out of
chair, has a seizure, or chokes on his own vomit. 24 hours a day....
7 days a week!

I am not complainging, I choose to be his mother, I choose
to love him and take care of him in the best way I can.!
Again, all my choice.
I have been reminded many times by many people
that I made this choice to take care of Hollister.
If life is hard....again I know it was
my choice!

But, respite care is nice...to have a nap, a shower, a walk, to do laundry,
yard work, and even prepare a meal.
We don't have family involvement and we don't
have friends....any friends from before Hollister got sick are long gone....
10 years is a long time!

Now, "a comittee" through DHS wants to change and regulate
how much respite care I can have...
Seems like maybe they would all like to have a turn taking
care of Hollister.

What would it cost the State to put Hollister in a nursing
home with full time care, therapy 3x a week, and all of
his medicatioins and stimulations...Not to mention his skin
is perfect!!!!
Then of course Dick could drop him off our insurance....
Just the amount medicaid would have to pick up for his
seizure medications would be into the thousands of dollars
each month!

Sounds like the usual bunch of idiots making decisions about
the sick, brain injured, handicapped, mentally retarded,
and old...
Why in the world, would we pick on this group????

I am enclosing some information...if you feel inclined...
Write a letter, e-mail, or make a phone call. there will be
another meeting in August...Hopefully, this time the room will be big enough for all of us, so we can have our say!

Dick and Jan,

Here is the list of those on the rules committee. Senator Dave Heaton and Lisa Heddens are watching this very closely are good contacts to make, along with writing the DHS Director Charles Palmer and contacting the Governor. In general I do not believe these people understand the levels of severity of disability our loved ones have. I think it would be an excellent idea to have video for people to see so they can put it into perspective. Eric Hansen on Channell 8 (KCCI) has always been receptive. They did a fair job last week although they really didn't have all the information correct. In all my years I have never seen a rule pulled and changed like that, so I believe that is a good sign that they are listening and willing to reconsider.

Thanks for being there on July 12th, and for your continued support of Healthy Connections. Any thing we can do to help, please let us know.

Try to stay cool, it this muggy hot weather.

Sincerely,

Valerie J. Owens

The Department of Human Services is proposing to reduce the HCBS Respite benefit to a maximum of 48 hours per month. This proposal will impact the ID, BI, Ill and Handicapped waivers. If these new rules are adopted as written there will be no appeal process for families.

Here are a couple of key concerns:

1. Some families and children who have significant needs in the BI and ill and handicapped waivers regularly use more than 48 hours a month. Current respite rules allow families to use 160 hours per month for respite. This might involve regular respite in the home and a respite weekend out of the home. This service allows families to keep their children at home and not seek out of home placement.

2. The 48 hour monthly limit reduces flexibility for families to use respite to care when they need it. For example we have a family that is taking a week-long trip to California and respite is being used as part of the support plan to take care of the child while they are gone. They have saved up their respite hours to make this possible.

3. Respite is the most cost effective means the state has to keep children with high needs at home. It gives families the flexibility and choice to determine when they need to have a break as well as when they can plan breaks. It is a low cost service in comparison to out of home placement.

4. This change will have a significant effect on families and on providers. I predict some providers will go out of business due to this decision. We have estimated that this decision will reduce the respite service revenues at ChildServe by as much $500,000 per year, 25f our their annual budget.

We hope that families and providers will contact the Administrative Rules Committee to outline the scope and impact of this change.

PLEASE CONTACT: Administrative Rules Review Committee

Senate Members

Wally E. Horn (D, District 17), Chair - wally.horn@legis.state.ia.us

Merlin Bartz (R, District 6) - merlin.bartz@legis.state.ia.us

Thomas G. Courtney (D, District 44) - thomas.courtney@legis.state.ia.us

John P. (Jack) Kibbie (D, District 4) - john.kibbie@legis.state.ia.us

James A. Seymour (R, District 28) - james.seymour@legis.state.ia.us

House Members

Dawn E. Pettengill (R, District 39), Vice Chair - dawn.pettengill@legis.state.ia.us

David E. Heaton (R, District 91) - dave.heaton@legis.state.ia.us

Jo Oldson (D, District 61) - jo.oldson@legis.state.ia.us

Rick Olson (D, District 68) - rick.olson@legis.state.ia.us

Guy Vander Linden (R, District 75) - Guy.VanderLinden@legis.state.ia.us

There are so many other places to cut money from any
budget! I guess I don't understand hurting the people who
truly are the "least of my brothers".......

Team Tough is fired up!

Tuesday, June 28, 2011 9:17 AM CDT

Lots going on in the last month.

Hollister is finally doing better. It has been a very slow
process. He has made it back to therapy and finally yesterday,
he had a good day. He was happy, participating, worked hard,
and looked good ALL day. He slept well last night and is still
sleeping now.
Now, Mama is tired!

Haven't done much, as Hollister hasn't had a lot of energy to go or do.
He is still having some trouble sitting up for any length
of time. Doesn't have a lot of head control....
yet!

Ready for a week of NO rain. Tired of the mess of the
"roof situation"....

On a very positive note, Hillaree gave blood for the first time
on Thursday. She tried last year but was denied!
She was a trooper and did very well.
Hollister and I were there to cheer her on.
Hillaree is all about paying it forward....
She is the first to buy a homeless man a sandwich,
she never hesitates to give when she has
very little to give, or volunter her time
and energy for a good cause.
She remembers Hollister needing blood in the
PICU and how important it was to him on
that day.

When I finally grow up, I hope to be just like Hillaree!

Not to mention all of those sweet little ones with cancer.
They need blood to continue to fight!

Hillaree and I were also remembering Hollister's
very closest buddy who lost(won) his battle with Ewings Sarcoma 5 years ago on Father's day. To honor our friend Joel, Hillaree and I were very proud and honored to roll up our sleeves....

Won't you too???? Pay it forward!
No matter your type...
you are a perfect match for someone!

Team Tough loves blood donors.....

Saturday, May 28, 2011 4:14 PM CDT

A Holiday weekend and it is still May,
not a good combination for Hollister.

I feel bad once again, missing all the graduation parties. I know Dick gets tired of going to everything alone.

Hollister continues to struggle. It has been a very long week here.
Last Sunday night it was painfully obvious that Hollister was very
de-hydrated and he was unable to keep anything down.
He was looking pretty rough.

I continued with the Zofran, phenergen suppositories and compazine and benedryl at bedtime, trying to keep his seizure medications on board.
It was quite the battle.

Bright and early Monday we started calling Hollister's Doctors.......
First his primary care doctor, too busy to see him......
would admit him sight unseen or send him to the ER.

I did NOT like any of those choices.
Really wanted a doctor to look at him, do labs,and then decide what he needed.

Called his local neurologist, looking for advice on what to do....
He called back and told us to go a emergency clinic/ ER

Called a friend of Dick's....house supervisor at Mercy.

Called Hollister's cardiologist....
told us to call his primary Doctor or go to the ER.

Called the primary doctor back....had an opening with a "new" doctor who didn't know Hollister....
We took the appointment at 4pm....

It is now lunchtime and I call the geneticist at the Mayo Clinic...
She called right back and was furious. I asked her what labs and tests needed to be done.

Patiently, I waited until 4pm to get Hollister looked at......

The appointment was less than desirable, life flight came to do the blood draw and couldn't get a drop, not even for an arterial stick!
Our "regular" doctor saw him instead of someone new. WE left at 6pm with prescription for antibiotic and I took Hollister home.

The frustration, anxiety, and disappointment levels were extremely high on the ride home. I even let myself cry.

Tuesday was more of the same...this time his vomiting was projectile and ugly.
I decided to set up an IV. Hoping I could find an expert to come help start it on Hollister.

Finally, at 7pm I decided to look myself. I haven't started an IV 5 years.
I asked Hollister to help me out. I asked God to give me the courage and ability to find one.
One little teeny tiny vein on his right thumb, right on his knuckle popped up.
I prayed, shut my eyes and stuck......not only did I hit it, it was GOOD!!!
I was shaking and giving thanks, trying to secure it. It ran wide open like the little gift it was!

Then I got greedy and wanted IV Zofran to let his gut rest.
Again through luck, a doctor willing to write a script if we found a pharmacy willing to dispense it....
Looking through my phone I found an Angel named Pat. He delivered it to our house at 1030pm......
first dose in at 1100.

He took in almost 5 liters before he started to really pee. His gut rested and rested.
Wednesday IV fluid ran, Zofran every 8 hours and rest. It was good.

Thursday morning, I got a call that Hollister had a nurse case manager....
News to me. He has been flowing Hollister and got an order this morning to
come out and draw blood....So, he asked if he still had an infuse-a-port.
I laughed and told him he had that removed in 2007....guess he wasn't following as close as he thought.

So, he came out and stuck Hollister repeatedly for 2 hours and not one drop of blood....
and Hollister was pissed and started with the vomiting.
I had to re-tape his perfect IV....
We were both angry.

So, Friday get another call from the "nurse"......supervisor coming out..
More sticks.....finally stuck his fingers to get blood.....
too many times to count.
and....one of the vials clotted off on the way to the lab!!!!

Once again, messed up the IV and at midnight it finally crapped out.

I am still angry.

So, back to oral medication....and Hollister has vomited all afternoon.

The moral of this awful situation is.....

Hollister has been sick for TEN years this fall.
At some point in this awful journey I would like to have someone...
anyone in the medical field in Des Moines to give the tiniest hoot about Hollister.

What happened this week has happened over and over. It is not always possible to rush Hollister to the Mayo Clinic.

Our ER visits in Des Moines have been less than positive. Our care
has been less than stellar on his worst days;
I can't imagine what it would be like when he isn't seizing......

Taking Hollister to the ER is a last resort. He is very susceptible to bugs. He usually gets sicker at the hospital.....

DISEASE RECOGNITION for Hollister would be a good thing.

This is a taste of our week. This Mom is over tired and over irritated.

Team Tough is still waiting for Hollister to jump this hurdle......

Team Tough is thankful for our freedom.
and everyone who continues to make this possible.

And I'm proud to be an American,
where at least I know I'm free.
And I won't forget the men who died,
who gave that right to me.
~Lee Greenwood

Thursday, May 19, 2011 8:15 AM CDT

Not sure exactly what to write.....

Team Tough has been silent.....

You can hear the footsteps of God when silence reigns in the mind.
~Sri Sathya Sai Baba

Hollister is sick with a cold/virus. He has been struggling
with this for the last 10 days. He has been sleeping on
the couch since Saturday. He has not had any food/calories
since last Friday. He is very weak when we do try to get
him up.
His lack of food/medications have interferred with his
seizure medication levels and of course he has had big
seizures. Trying to keep those controlled.

Silence is medication for sorrow. ~Arab Proverb

Hillaree has been home almost 2 weeks. Hard to believe
she finished her first year of college. Just like her
mother....she is questioning her major choice....so
she is soul searching what she might want to do!
I love having her home. She brings a lot of life/stuff
into our little house.....

We had a big night on Tuesday...Hillaree made her screen
debut on One Tree Hill. The episode where she was an extra
was finally on. We had a "little Oscar Party" for her.
and....Harrison was elected Junior Class President....
It was a big night. Hollister slept on the couch the
entire night!
Not sure of the Class of 2013 is ready for some of Harrison's
Prom ideas......

Team Tough is silently waiting and praying for Hollister
to jump this hurdle....

Remembering that a few years ago today in Algona,
too many to count!
"The Class with Class" was graduating from AHS...

Try not to become a man of success,
but rather try to become a man of value.
~Albert Einstein

A Shout out to Mrs. Johnson's class in Jackson Middle
School... Thank you for all your great notes. You bring
joy to our hearts with your words!
Have a great summer!....Team Tough

Friday, May 6, 2011 2:46 AM CDT

Sunday, May 1, 2011 11:26 PM CDT

Hooray Hooray first of May.....

Seems like today maybe seems more like the
"Ides of March" for me.

I really don't like May day.....

Wasn't always this way, I loved making the May baskets and
watching the kids run around and deliver them.

This year once again, there will be no May baskets or
joyous thoughts about what the month of May will hold for us.

It is now five years since I have talked to Hollister and
he talked to me, it has now been five years since he walked
independently, and it has now been five years since he has
eaten real food!

The problem with it has been five years is.....

I have always been able to say....Hollister hasn't always
been like this. He has only been like this since 2006....

Now, with the 10 year anniversary of his diagnosis
looming 6 months away,
Hollister has now been like this half the time he has been sick.
This is awful!

The memories of my Hollister seem to be getting farther and
farther from me.

May day for me, will always be difficult knowing that our
life changed significantly on that day and the 125 days
of that summer that followed!

AS I expected this was a very difficult day, and I
remembered alone......

Tonight as I rest my hand on Hollister's chest..
once again I will pray that tomorrow will be the day!

Tuesday, April 12, 2011 10:05 AM CDT

Spring is sprouting up all over the place.

Trying to get Hollister outside to enjoy some of the
sun's warmth. He seems to enjoy sitting on the patio.

We have a very LOUD woodpecker in our yard.
He was driving us crazy with his constant pounding!

Hollister is having trouble keeping his food down.
Not sure what is going on. Moring noon or night, I am
having a hard time getting calories into him.
He has lost a few pounds, he doesn't have much extra.

He is also having a hard time with edema. Trying to get his
feet elevated to return pooled blood is very diffucult.
he doesn't like standing much, I figure his feet must be
sore!
Not sure what as changed.

At times he does seem more alert. He appears to be interested
in what is going on. At times he evens laughs at the
appropriate times. Gets out attention.

Team Tough is anxious for Hollister to get over this
hurdle!

Thursday, March 24, 2011 10:27 AM CDT

Hollister is up and ready to go, early this morning!
Currently, we are watching/listening to the "rice is pright"...

Harrison is off the the State Mock Tournament this afternoon.
His team made it through regionals/districts to get to compete today!

Dick asked him this morning what time the pep assembly was
for Mock Trial...(no sports team would make it to state
without a pep assembly)... I quotes Harrison,
"Mock trial is even less cooler than speech and debate!"
I guess that says it all!

We are very proud of his team and all of the hard work they
put into it!
and he looks so handsome in his suit!

Hillaree is on her way home this afternoon. YEAH!!!
Will nice to have her home for a long weekend. She has
plans to see Keeny Chesney tonight...Tomorrow she will hang
out with Hollister so Dick and I can go to the less than
cool, Mock Trial!

Hollister is all over the place. Nausea, vomiting, excessive
awake, very sleepy, and a whole lot of crabby!
Hoping he can get him self straightened out soon!
He is wearing us all out!

We were enjoying the spring like weather and seeing all
the little spring flowers blooming...but it seems that
nasty old winter is hanging around for a few more days!

Team Tough is ready for spring!

Tuesday, March 15, 2011 9:25 AM CDT

SPRING BREAK!!!!

Spring is nature's way of saying, "Let's party!"
~Robin Williams

This is week two of spring break!

Hillaree had spring break from USD last week. She went to
Wilmington, North Carolina with one of her friends. Not a
popular spring break destination....but to anyone who watches
One Tree Hill, it is a travel destination worth while!
She had a great time! Met many of the cast of OTH and
saw lots of the sets. All very exciting and the beach
was cold...but beautiful....The most exciting thing that
could have ever happened was.....Hillaree got to be an
extra for a whole day of shooting!!! She even got paid!
I admire Hillaree for who she is. She truly finds enjoyment
and beauty in all that she does...

We picked Hillaree up in Ohama(Omaha) on Saturday morning.
We dropped her friend Taylor in Sioux City.
Harrison remembered there was a Five Guys Burgers there and
we must go!
They were big and delicioius! It was the first time the
five of us were out and about together. Like a family....
Harrison had never been to "the Verm" or USD.
Hillaree couldn't get into the dorms until Sunday afternoon.
So, we all were staying together!

All I ever want is for us to be able to be together and
to get a picture of the kids. I don't take many pictures
because Holllister just looks rough. He never has his
head up, his arms are so tight with tone and it is impossible.

We all decided to head to the pool. Thought it would be
great "therapy" to get Hollister in the pool! of course it
was too cold...
So, we decided to try the hottub...
I do know that he is not suppose to be in Hottubs...
he hassn't been in one in over 5 years.
I wanted something "normal".... I wanted to take a picture
of the kids together...Happy and enjoying each other, like
everyone else....

Well, it was hot and Hollister wasn't in but a few minutes.
We pulled him up to the edge to dangle his feet. Hillaree
was holding him up.... He started jerking, I went to get
some seizure meds and he started seizing.
I got back, gave him meds and ice water through his button..
and he rested on Hillaree.
I am so thankful she is so strong!
We got him in his chair and moved carefully to the room.
Got him out of wet suit, dropped the temperature in the
room and settled him into bed.

My heart broken yet again!!
Dick and Harrison and Hillaree went back to the pool..

Sunday, we looked around USD and Harrison saw Hillaree's
tiny little dorm. Which she has made very comfy!
We left Hillaree and headed back to the Omaha airport to
drop Harrison off.

He is headed to California with his Men's club;
Legion of Our Lady.
They are headed to the Sacramento area to work with the
Missionaires of Charity, (This is a Mother Theresa Charity)
and Our Lady of Guadalupe Shrine.
I am so proud of him for wanting to do this. He is with
a great group of young Catholic men. Most impressed by how
hard he worked to save enough money to pay for this trip!

As they were leaving Father asked us to pray them for them...
I couldn't help but chuckle and agree that prayers were needed...
This is a big undertaking for a very Young Priest.

This house is more quiet than normal. I am sure Hollister
misses Hillaree and Harrison. I know he likes the interaction
with them.

Hillaree did remind me that she only hasa 38 more days of
class...

New pictures are on the photo page. Those are pictures from
the weekend!

Team Tough is looking forward!!!

Wednesday, March 9, 2011 5:07 AM CST

Happy Birthday to Hollister!!!

Wednesday, February 23, 2011 12:23 AM CST

Hollister was lucky enough to be invited to the Women's
Basketball game at Simpson College. Hollsiter's friend, Phil Wirtz,
(Gaurdian Angel, as I like to call him!) is one of the
coaches for the team. He has asked us before to bring him
to a game.....and last Saturday worked out for us.
Phil took good care of us...we were sporting our new very cool
Simpson shirts and sat floor side at the game. Hollister had
a great time. It was a good game and the home team won.

What a great group of young women. After the game, they came over
to meet Hollister and give him a signed ball.
This was a very nice moment...brought tears to my eyes.
They were all so kind and thoughtful!
What a great day!

Hillaree was home over the weekend. Always cheers us up.
It was nice to have her home and Harrison had days off from
school for conferences. Was good to have the house full!

Hollister has made it to all of his therapies the last couple
of weeks.
Friday he stood in the standard for an hour and a half.
He was pretty wiped out on Friday night!

The order for our own standard at home has been placed.
We did not get to order the one we really wanted....
insurance would never let us have the best one!
So, hopefully in the next 6-8 weeks we will get an answer!

He didn't do much swimming on Monday. Not sure if he was
LAZY or tired! He certainly takes advantage of Esmie(PT)
floating him in the pool!!!!!

He has been sleeping a lot. Not sure why???
Hope it doesn't last too long!
Maybe when spring arrives...he will want to be up more!

Thanks to Coach Phil Wirtz and the Simpson Women's Basketball
team.
We will remember your kindnesses!!!

Tuessday, February 15, 2011 11:38 AM CST

The secret of staying young is to live honestly, eat slowly, and lie about your age.
~Lucille Ball

Happy Birthday to Dick!
Happy Birthday to Dick!

Fatherhood is pretending the present you love most is soap-on-a-rope.
~Bill Cosby

Dick Richard Alan Farrell(as little Harrison used to call him...)
has more grace and dignity than most men could ever dream of!

He has faced more difficulties in the last 10 years, than
most of us will ever know.
Hollister illness comes from the mtDNA, which means it comes
from me...my mother...her mother...and so on and so on!!!

He has watched his oldest child desinigrate into a shell of the
boy we once knew...never to know the man he should have
been.
He has lived knowing at any moment Hillaree,or Harrison,or
even myself could affected by the disease.

It kills you to see them grow up.
But I guess it would kill you quicker if they didn't. ~Barbara Kingsolver

Not once have I ever heard in anger, saddness, or grief that
this was my fault. He has been nothing but supportive of
all that needs to be done.

On top of all of that, employers aren't very nice.
He has lost 3 jobs in the last 10 years. We use a lot of
insurance. It is a priority to keep insurance on Hollister.
So, Dick has had to start over and start over. It has been
rough on him and NO fun. I respect the fact that he gets
up everyday and heads to a crappy job...

Not mention, he drives Hollister to therapy on Monday morning,
Monday afternoon, and on Fridays. Throw in a few Doctors
appointments...and work is difficult!

He has learned in the last 5 years to go alone to most
of the kids sporting events, conferences, parents meetings,
atheletic banquets, concession stand duty, and church....

Richard takes it all in stride and never complains.
He is faithful and loyal. He tries always to find the good
and happy in a lot of things.

He does a lot for us and sometimes we take it all for granted.

Happy Birthday to Dick Richard Alan Farrell!

Team Tough loves their Dad!!!

Sometimes the poorest man leaves his children the richest inheritance.
~Ruth E. Renkel

Wednesday, February 9, 2011 9:56 AM CST

Winter is nature's way of saying, "Up yours."
~Robert Byrne

It certainly is winter here! Freezing Cold!!!
The sun is shining this morning! Helps!
Glad we have no where to go!

We did go to Rochester last Thursday and Friday for Hollister's
appointments at the Mayo Clinc.
Fortunately, the weather and the roads were good!
It is always a production to take Hollister over night.
Add in freezing cold and snow, and it can be disastorous!
Wasn't too bad!

I was less than excited to go. I know Hollister needs to
have doctors who follow him and know him....
but.....
seems our appointments are less than encouraging!

So, against my will....I took him.

In my head, was what happened when he had his gallbladder
out in September and he was given Lactated Ringers...
That is a HUGE medication error and no one from anesthesia
talked to us about this. This is not right!
and...on the floor the night before surgery...he was given
normal saline instead of Dextrose while he was getting
the bowel prep...I asked the nurse countless times about
this..and No one cared!
Where were his Dcotors and Orders...
I have a protocol from the Mayo Clinic and they wouldn't
even follow that!!!!
They are very very lucky he didn't have a big metobilic
crisis!

I realize this is the Mayo Clinic..
and they can face NO legal actions for their mistakes...

BUT!

Our first appointment was with GI...I do love his doctor.
He is awesome. I have always liked him and does get it!
He listens and always trys to find an answer! He see Hollister
as Hollister.
He in no way was responsible for the mistakes...didn't bring
it up with him.

Next up...Neurology. He is nice and smart...but irritates me
in the fact that when he looks at Hollister,
he looks right through him!
He always wants to keep things status quo!

Finally, genetics...and I hate this appointment.
She is way too clinical. I believe she would rather be in a
lab than doing patient care.
But...
She walked in and brought up the lactated ringers...
Apparently, a new study has been started because of the
mistake made in the operating room by anesthesia!
Anesthesia called her and she is helping them collect and
gather data from all of the surgeries done at the Mayo Clinc
on MELAS patients. They are studying what drugs were used
and how they affected the patient. If MELAS was known prior
to surgery or dignosed after.

She said it would take a while to gather the data.
Hollister did have some initial problems...that is why he
was in the OR over 3 hours for a Laproscopic Gallbladder
and why he had to go the PICU after surgery!
Funny, when we asked how high his lactic acid was...
not one person would tell us!

Still makes me angry that anesthesia never came in and
talked to us...They made the surgeon explain what had
happened.

The geneticist is still very fired up about the research
program on MELAS patients. They recieved a big grant and
also have a private donor with a lot of resources....
that MELAS has affected his family!

Still need to get Hillaree and Harrison up to the Clinic
to have there blood drawn and probably a skin/muscle biopsy....
I donated my blood last year, waiting to hear if they need
a skin/muscle bipsy...
I laughed and told the Doctor she had less than 2 years to
decide about Harrison. He will be 18 and he will CHOOSE
not to be involved...(he hates the lab draw! and won't
even consider skin/muscle!)....She laughed and said he
sounded 16!

All the doctors thought he looked great and are all happy
that he is making positive moves forward!!!
It is always nice to get a pat on the back....
but...
Hollister is really the guy doing all the work!
I remind everyone of that!
He is awesome!

Monday, we took Hollister to see his cardiologist here.
I love this guy! He is awesome!
He thougth Hollister looked good and his heart is healthy!
His lungs looked good on CXR..
So, we don't need to go back for 6 months!

When talking with the geneticist at the Clinic...
I told her that the BIG problem with hospitals/doctors/nurses...
anyone else who gets the priveledge of taking care of Hollister
when he needs help!
NO ONE CARES!!!!!
9 1/2 years later it is very evident that is the problem...
NO ONE CARES!!!

All I ask is that everyone is as careful with him as I have
been told to be.
I do everything possible to keep him safe.
I have done everything, tried everything, and always only
wanted the best for him!
I even made him eat raw cornstarch, when I was told too!
It was awful!

It is amazing to me that doctors/nurses who don't know him
or his disease aren't interested in knowing! When I say
MELAS or Mitochondrial Myopathy, I get some pretty crazy looks.
It is not often ANYONE wants information!

I felt better after I said it but will fall on deaf ears!

When I ask Neurology and Genetics if there was anything new
for Hollister, I got that pitiful look! I had to ask!

Hollister looks good this morning. He has lots to say!
Sun coming in the windows makes us both feel good!

Looking foreward to the heatwave over the weekend!

Team tough thinks Hollister is aswesome!

If you woke up breathing, congratulations!
You have another chance.
~Andrea Boydston

Sunday, January 23, 2011 3:17 PM CST

Nice to see the sun shining...
and it is a little warmer today!

Quiet day here.
Harrison went up to the Iowa State Wrestling meet.
Hillaree was home for the weekend...and is now driving home.
Hoping the roads stay OK. She is driving into an area that
was suppose to get some snow!

Dick is busy with a project off his "honey do" list...
and
Hollister and I are watching football!
No idea who Hollister would be cheering for...
Father Kriby is a "loyal" bears fan....
but
G-ma Jo and "our" Julie are Packer's Fans...
Wish he could talk so I wold know who he wold be rooting
for.... or against!

Hollister is doing well. He had a very tiring day at therapy on Friday.
He stood for 30 minutes in the stander...Tried to walk with
the ARGO for PT, and then stood 30 minutes for speech.
He was very tired!
Even holding his head up was tough!

He likes to sleep in on Saturday morning after working so
hard on Friday!
I am sure he ready for therapy on Monday as I have become
a fan of old movies....and I make him watch them with me....
I wonder if at 23 if he would still hate them....
or...
possibly love them because it is time spent with me...
hahahaha....obviously I have been watching a lot of sappy
old movies!

Therapy tomorrow! Swimming in the morning and he likes that.
It is good to see him waking across that pool!
Good for Hollister, Mom, and his PT Esmie!

Team Tough is warm and happy!

Winter must be cold for those with no warm memories.
~From the movie An Affair to Remember

Monday, January 17, 2011 10:45 PM CST

!!!!BLUE MONDAY!!!!

Jan. 17 is (statistically) the most depressing day of the year
Depressed? Blame Blue Monday.
The third Monday after the new year begins is traditionally the
saddest day of the year.
British psychologists have decreed that today,
the third Monday of January,
is the saddest day of the year for most of us.

Why?

A combination of bad weather, lack of sunlight,
being shut in, all the holiday bills coming in from Christmas
and New Year and a general malaise that sets in at
this time of year.

Well to make maters worse....Had lunch today with Harrison
and Dick, Chinese food, from our favorite place....
"Chinese Fast Food!!!" (anyone from my Charter days will
remember the place)
AND
My fortune cookie had NO Fortune!
Can't be much more depressing than that on Blue Monday!!!

Actually, I believe being a shut in the winter is not
as bad as being a shut in the summer. In the winter at
least everyone feels bad and or shut in!!!! In the summer,
when everyone else is out and about enjoying the good
weather....we are still shut in!!!

I have a few things bouncing in my head....
Recently, it was brought to my attention...not once
but twice...that I made the CHOICE to be here with Hollister.
It is not the same as someone who is sick and can't work...
I could be working and Dick could be home with him.

I guess in some way I did make a choice by not choosing.
I don't remember 9 years ago saying...I choose to take care
of Hollister and not go back to a job I truly enjoyed.
I also realize by comments made to me at the same time...
that my simple job in ambulatory nursing since 1991 really
doesn't sound important. But, I like what I did for 18 years,
I liked the people I worked with, and contrary to the popular belief....
I think I was pretty good at my job!
Not life changing but I took good care of my patients.
I was actually pretty good at it.

BUT....
Given a choice, I would definetly choose Hollister or Hillaree,
or Harrison. My Children have always been my priority.
So, I guess I do sit in my own mess...and I wouldn't have
it any other way. I am sorry for anyone and all of you who
don't see the light in his eyes and the love in his heart.....
but I do.
I see him and I see a miracle of God...from the day he was
born to this moment...I believe.... I believe!

We have had some quiet days. Can't really take him out much
when it is this cold. We did make it to therapy on Monday.
Swimming in the morning and therpy in the afternoon.
He did well at both. He has been so alert and happy.
They are using a new stander with Hollister. Trying to get
him up and weight bearing. It is good. He is more alert for
speech and OT.
My hope is that we can get one of these at home!!!!!
Going to get him fitted this week, then we will see what our
insurance thinks........I think we all know how this will work out!!!

So on this saddest day.. Remember to be thankful for all that
you have.....
Fortune or not....

On this MLK day....
Team Tough will never forget!

Not everyone is sad today.......
~ The saddest day of the year is the day baseball season ends ~
Tommy Lasorda

Tuesday, January 11, 2011 11:11 AM CST

Winter is definetly still here!
Snow and lots of it!

Hillaree did make it home from Memphis on Sunday.
Sounds like she had a great trip. She has some really interesting
stories about the people she met. She also got to do some
work at a charter school. She enjoyed her time at Le Bonheur
hospital. She got to do a lot! It was a different experience
for her being the "care giver" instead of the receiver.
Child life has been a very important part of her life!
Makes her appreciate Julie and the Child-life staff at Blank!
We always knew how awesome they are!
The worst part of every volunter trip she has gone on is....
"The HIGH MAINTENANCE BOSSY GIRLS!!" apparently they are on
every trip, and not loving the volunter work!
Hillaree reminds us...a volunter trip is not vacation!

Hollister continues to be weak. He is having a hard time
doing the simplest things...like sitting and holding his
head up! He has a very long way to go.
Dr. Freidgood remined us he went through a lot this summer.
The Status in June and then gallbladder surgery in September.

Hillaree is headed back to Vermillion....Today, tomorrow,
when ever the roads are safe! Classes start Thursday!

Team Tough is looking to spring!

Where does the white go when the snow melts?
~Author Unknown

Saturday, January 1, 2011 11:11 PM CST

Cheers to a new year and another chance for us to get it right.
~Oprah Winfrey

Happy New Year!

Pretty quiet New Year at this house....
Hillaree, Hollister, and I rang in the New Year...
Dick had gone to bed and Harrison was at a Party with his
friends!

More anxiety with this New year than most. Hollister will
reach the milestone of 10 years fighting this disease(monster)!
The media has filled the weekend with milestone of 2010 and
the reminder of 10 years since 9/11....This is also the start
of his journey. He was in the hospital for the first time
on 9/11...it was only a short time later he had his first
stroke...Dr. Whiteman(geneticist at the Mayo Clinic) had
assured us if we could keep him organ healthy for 10 years....
research would provide him with life saving measures....
Now, 10 years is here.....

Looking back over the last year.....
Hollister had some real struggles with seizures, weakness,
and having his gallbladder out. I am counting on this year
being better for him.

Hillaree graduated from DCHS and moved on to college.
She is doing well and thriving. She is in Memphis on a
volunter trip this week with a group from school. They
are working/painting at school(inner city) and playing
with sick kids at the hospital. She is having a great time.

Harrison got his Drivers license and is a sophomore at DCHS.
He is busy busy busy! He has a great group of friends and
is enjoying high school! They way kids are suppose to!

Christmas was very very nice. Even with the snowy weather
my parents we able to make it here. We don't have large
family gatherings with either side. Not sure if this is
good or bad, but easier for everyone who is uncomfortable
with Hollister.

Now for the business of....

THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU!!!!!!!!!

Many of you brought gifts and goodies to our home to HELP
us have a great Christmas...
We even recieved some amazing gifts from friends with no
names...
If you brought a cookie/candy, flower/gift, cash/gift card
everything was much appreciated!
Christmas would have been difficult with out you!
Thank you for making us all believe!

Midnight Mass (at midnight) was also very beautiful. It so
easy to sit at church on the Holiest of nights, when you
have seen with your own eyes, his good works!

So one last Merry Christmas to all!

And

Happy New Year!
may 2011 bring all the miracles we dream of!

Team Tough is hopeful!

Drop the last year into the silent limbo of the past.
Let it go, for it was imperfect, and thank God that it can go
Brooks Atkinson

Tuesday, December 21, 2010 9:29 AM CST

I personally love the week of Christmas!
This is the best week of the whole year!
All the things that have to be done!
Most people are generally happy! Goodwill towards men is
at all time high!
Little kids are on their best behavior with the last week
to BE good!
I am just hoping to get done what I need to get done...

Dick and I took Hollister to the Dowling Catholic Candle Lighting service.
Truly, this will put you in the Christmas Spirit!
I am always so impressed and inspired by the work of the
kids, teachers, and school! When I see how many families
that are helped by Christmas Baskets...
My heart always melts and my eyes leak!
Very impressive!

Christmas waves a magic wand over this world,
and behold, everything is softer and more beautiful.
~Norman Vincent Peale

We did get a tree. Lights on before Hillaree got home Friday....
but.... No decorations yet!
As Harrison said..."That "Puny" little tree is kind of pretty"

Hollister continues on his Roller Coaster....
Friday he was Therapy ready...finally! First time in weeks!
and of course Dick's car wouldn't start!
Still in the shop waiting to hear!

Sunday morning, Hollister woke up at 5am...I waited until 6
to ask Dick for help getting him up. We finally get him
upstairs...Next thing we know..he is having a grand-mal
seizure!
WHY!!!!!
I hate when I have no reason!!!!!
He slept all day and all night!

Finally, he woke up at 8am yesterday and sounded so happy!
Looked good. Did well at swimming and Therapy in the afternoon!
Thank you Hillaree for taking us!
He was happy and interactive all evening!

Still sleeping this morning!

Harrison is finishing finals today...Wresting service day
tomorrow...Then he gets a few days off for Christmas break!

Hoping to get to start shopping today or tomorrow.
Seems like there is much to do!

Team Tough is hopeful!
and....laughing!

Who doesn't LOVE Christmas Vacation!!!!

Clark Griswold: “Can I refill your eggnog for you?
Get you something to eat?
Drive you out to the middle of nowhere and leave you for dead?"

Eddie: “Naw, I'm doing just fine, Clark."

Monday, December 13, 2010 2:51 PM CST

Christmas is only 12 days away....

Doesn't seem possible.

We have done nothing to prepare. Last week of Advent and
we are not there!

Trying to decide....tree or no tree......

Seems like a lot of work and expense for a few short days!

Not sure when I got so "grinchy"....
this year seems worse...

The last nine years, Christmas has been harder and harder each year!

Hard to imagine I was a true believer and lover of all things
Christmas!

Hollister continues to have his ups and downs. He will
have a seizure out of no where...just to make sure I am
paying attention.
Usually at bedtime or in the middle of the night....

No therapy today...To cold to take him out. I hate for him
to miss swimming. It is so good for his body to totally
relax in the water!

Waiting for the results of Judy's sentinal node biopsy
this week. Her surgery last week for the melanoma on her
arm went well. I am very sad that I can't be there with
her.

Team Tough is keeping Judy close to our hearts...

This is Hillaree's last week of school, hoping her finals
go well!!! and..... she can make it home safely on Friday!

Harrison is busy with school. Finals start Friday.
He is busy with wrestling. He is wresting at what ever
weight they need him at.... Should be about 130....
Last weekend he wrestled at 145!!! This week he may be
at Heavy weight...will have to see who is missing!
He did get hurt last Thursday...finished the match with
a win...
Thank you Dr. K. Galles for seeing him Friday afternoon!
He sprained his sterno-clavicular joint....
Said he could wrestle again when he could do 40 push-ups
without pain. should take a couple of weeks...
Guess he was ready to wrestle Saturday!!
Crazy!

Team Tough is hoping the next 12 days...brings Christmas
to our hurting hearts...

Christmas is a time when you get homesick - even when you're home.
~Carol Nelson

Thursday, November 25, 2010 11:09 PM CST

"As we express gratitude, we must never forget that the highest appreciation
is not to utter words, but to live by them."

John Fitzgerald Kennedy

Happy Thanksgiving.
From our little corner of the world we DO have so much to be thankful for!

First and foremost is the fact that my little family is still intact and all able
to be together! What a wonderful joyous thing to be thankful for!

The weather cooperated and my Mom and Dad were able to drive down and
spend Thanksgiving with us. I am also very thankful for them. It seems that
they have been plagued this last year by medical issues so we haven't seen
much of them. We were all happy to get to spend time with them.
Hillaree and Harrison even convinced us to play Apples to Apples with them.
The kids all LOVE this game. Turned out to be more FUN than I remembered
and we all laughed and laughed.
Hollister loves all the noise and laughter, makes him smile and laugh! He loves
family gatherings and the card games we play. He was always so competitive.
He likes to win!

I Thank God everyday that Hollister is competitive and likes to win. Probably
a big part of why he is still with us. He works hard and LOVES to prove you are
wrong....including Doctors, nurses, and certainly therapist!

It is nice to have Hillaree home for a few days. Reminds me just how much I
miss her. College agrees with her. She likes her classes, her roommate, and
her friends. She is getting involved with community service; serving meals,
packing lunches and planning a service trip over Christmas!
I couldn't be prouder!

Wrestling, unfortunately is now consuming Harrison.
If you know anything about wrestling that is all I can say!
Wait, I guess I can say one more thing....Skin Checks....haha

The kids and I are getting ready to head to the Jordan Creek Mall...
Crazy, it opens at midnight. Not really shopping, more like people watching!
Then we will drive around and look at all the people camping out waiting
in the freezing cold to get the bargains at 3 and 4am....
I never see what is in the adds worth frostbite!.
Kind of our silly tradition!

On a sad note...
Dick's Aunt Bev died unexpectedly this week, she was only 66.
She was always very nice to all of us. She will be missed.

Happy Thanksgiving..

Team Tough is very Thankful!

"If the only prayer you said in your whole life was,
"thank you," that would suffice."

Meister Eckhart

Friday, November 19, 2010 9:54 AM CST

Hard to imagine another week is over and Thanksgiving
is next week.

Tonight is the big DCHS game. We are very excited.
Hoping the football team can beat Iowa City and win the
State Championship. This hasn't happened since Hollister
was a freshman, so it is definetly time!

GO DOWLING!!! Team Toughs honors Team work!!!

“One piece of log creates a small fire, adequate to warm you up,
add just a few more pieces to blast an immense bonfire,
large enough to warm up your entire circle of friends;
needless to say that individuality counts but team work dynamites. ”
Jin Kwon -

Hollister continues to struggle!

Hollister did make it to swimming on Monday. He did OK.
He had some struggles in the pool and in the shower afterward.
We did get him home before the puking started...AGAIN!
He got some medications and slept on the couch...
It has been another tough week. Started wondering about
his dilantin level, he was acting like it might be high...
sleeping around the clock and contious vomiting.
Then on top of that he seems to have a very bad cold.
Miserable must be how he feels!

He did have an appointment at the Ruan Nuerology center,
located here in Des Moines. When he was sick in June, we
saw Neurologist from that group. They wanted us to be followed
in their office so he would have a chart to reference if he
gets sick again!
We did get some blood work. Two offices and 10 sticks they
finally dripped it from his finger. I hate that and so does
he. I always question how accurate the levels are with this
type of stick!
We haven't heard anything yet.

Having that appointment, Hollister and I made it out of
the house twice this week. WOW. We seem to only be getting
out about an hour every two weeks...Has been difficult on
both of us!
It is going to be along boring winter for Hollister and I.

Hoping that Hollister is on the mend. He is very weak and is
having a hard time holding his head up and even sitting up.
He was able to keep four cans of food down yesterday, so he
has some good calories to work with!

We will miss being at the Dome with the DCHS football team
but we will be there in spirit and watching on TV!!!

GO Big D!!!!

American football makes rugby look like a Tupperware party.
~Sue Lawley

Tuesday, November 16, 2010 2:58 PM CST

The Warrior

Gazing in the mirror,
I see a warrior's face.
Fully clothed in armor,
No fear and no disgrace.

A tear it never offers,
A smile it always gives,
No sadness does it show,
But what a life it lives.

Needles going in
As blood is taken out,
But still no sign of pain,
No cries to make you doubt.

Each day you see this person,
And think that they're so brave,
Each day you see us laughing,
The tears are ours to save.

So when you see our armor,
And think we're calm and mild,
Remember this one thing,
The warrior is but a child.

by Tera Phillips-Warrior

Friday, November 12, 2010 7:57 AM CST

I guess we all knew at some point our beautiful fall weather
wouldn't last forever.
It was sure fun while it lasted!

Exciting day for the Dowling Maroons..Headed to Cedar Falls
tonight to play in the semi-finals for state football.
We took Hollister over last year and the handicap seating
is less than adequate. Hard to imagine a University the size
of UNI and they have very poor facilities. Last year I was
able to threaten some poor college kids with their lives if
they didn't find better accomidations for us. Really takes
the fun out of taking Hollister places when we know it will be a fight!
Heartbreaking for us as we are not taking Hollister for
that reason!
There truly is no fan bigger than Hollister when it comes
to "his" Dowling football!

We will be listening to the radio, just like we did in the
fall of 2001! We listened to the radio in the Blank PICU when
Dowling was playing there last game before they went to the
dome. Hollister was in and out of consciousness...but
Dick and I listened and cheered...and cried our eyes out
as a couple of the boys interviewed after the game...
talked about their team mate Hollister was in the hospital
fighting for his life!
Little did we know how true that was! He was life flighted the
next morning.

We all remember that 2001 team and what great boys they
were. They played with an incredible amount of heart and
made Hollister feel so loved! He was out of the unit in
time for the championship game... We tortured ourselves trying
to find a laptop with sound. Seems very strange but back in
2001 we couldn't find a laptop to borrow that had sound.
No one at the Mayo Clinic had one. We asked everyone we
saw.. We knew if we could get sound, we could listen to the
championship game. Hollister was very sad that day and we
wanted to lift his spirits...
My friend and sister-in-law Kris came through from Minneapolis.
We were able to get that computer set up just as the game
started. It was almost as good as being there...Hollister
feel asleep at half time, but Dick and I heard every play of that game...
I still remember the nice things that were said on the radio about Hollister...
That 2001 team did win the state championship, they did it
2 years in a row! Those boys played and lived with heart.
They also bought Hollister a state championship ring from
that day! When it arrived Hollister was in the PICU at Blank
with his second stroke..Those awesome boys came right in and
surprised him/us with that beautiful ring to commerate that
he truly was part of that team!
He was so tiny then, his ring size was 6....that ginormous
ring in a size!!!

“When you're part of a team,
you stand up for your teammates.
Your loyalty is to them.
You protect them through good and bad,
because they'd do the same for you.”
Lawrence Peter "Yogi" Berra

Our hearts will be heavy again tonight...but we will be
listening to every play!

Hollister continues with the seizures. Had another big one
last night...2 this week!
Therapy is on hold for now until we see how he wakes up and
when!

Hillaree surprised me yesterday morning and walked in the
door. What a great surprise for me! She had veterans day
off and this sememster she has Fridays off, so she came
home! Hadn't seen her in over 4 weeks...good to see her!
and......she came with no LAUNDRY!!!haha

Team Tough is cheering loud and joyous for DOWLING CATHOLIC FOOTBALL!!!!!!

GO BIG D!!!

“It is good to have an end to journey toward;
but it is the journey that matters, in the end.”
Ursula K. Le Guin

Tuesday, November 9, 2010 8:07 AM CST

The calender is full of dates that mark awful anniversaries
for the mothers of sick children. There isn't very many
dates that I can look at without a feeling of dread. The
last nine years have been consumed with MELAS. Never is it
far from my mind or heart.

Not sure what to write on this page. The last 4 years it has
been very difficult. I get the feeling that "folks" aren't
that interested in what the difficulties a long term, life
disease are.
I realize Hollister is the ill child. It is extremely unfortunate
that he can not talk, write, communicate in any way because
I am the person who would most like to hear what he has to
say. I would love to know what he is thinking!
Difficult decisions have been made not knowing what he would
want.
He certainly would have different thoughts and values at 23
than he did at 14.
He is no longer a child. His classmates are out of college,
many in graduate school, many are married and there are some
who are parents... They live all over the globe.
I have to live everyday with WHO would he be.......

I feel like I offend many of you when I talk about what I
think or feel. I live a very quiet life and sometimes my
only connection to others is by what I write.

I will try to continue to write about Hollister.

He continues to struggle.
He has missed therpy for days and weeks. No swimming, no
stretching, NOTHING.
Seizures continue!

Team Tough is still standing after 9 years!!!

“Hard work and togetherness.
They go hand in hand.
You need the hard work
because it's such a tough atmosphere...
to win week in and week out.
You need togetherness
because you don't always win,
and you gotta hang though together. ”
Tony Dungy

Sunday, October 31, 2010 11:32 PM CDT

Charlie Brown: I got a rock!

I have always had a partcular fondness for Charlie Brown
and his gang.
This past month while I have been thinking about life...

This one phrase kept playing in my head...I got a rock!

I never realized how 4 little words seem to describe my
entire life!

I have been doing a lot thinking the last few months.
I have wanted to get from October 3 to Thanksgiving
without having to actually function on those days.
But, as luck would be... I am actually very aware of the day,
hour, and sometimes the minutes...

Nine years ago on this Halloween night, it was a Wednesday
and my family was healthy, happy, and very much intact.
Playoffs had started and life as we know it was good.

Dick and I both had jobs that we had been at a long time.
I loved my job at Mercy and I really liked my "friends" there.
Dick was at Sysco and was happy there also. We hadn't used
any insurance at the time, so his job was safe!
I know on November first I worked extra in the morning and
went to my bible study in the afternoon. Friday was my carpool day.
Our families were both intact and friendly.

Saturday November 3rd, again seemed like a very normal day.
Hollister had a season ticket to Iowa State football,
my Aunt Joan had given him one of her season tickets
for years.
They were football buddies. On this particular day, Harrison
was going with him. A friend of ours was taking them and briging
them home.
It was a beautiful day. Hillaree had gotten a part in the
Nutcracker ballet and she had practice most of the afternoon.
A very normal day for a very normal family!

Everything can change in a moment.....

Hollister started to seize as soon as he got home from
football...and they just kept getting bigger and bigger.
Finally a call to the Doctor at 7:30pm...he told me to give
my emergency/rescue drugs...I was very proud of myself!
I did it and the seizures stopped!
at 10:30 that night he started to puke. Him and I layed on
the living room floor all night.
We got him up in the morning and I was walking on the right
side of him..and kept saying...."Where are you Mom...I can't see you!"
We called the doctor and took him into blank.

Nothing has been the same since that fatefull morning...
Sunday, November 4, 2001....

I dread this Anniversary! I feel very empty and alone!
This has been harder and stands out because Hillaree is
not here.
and..
Dr. Whiteman told me, 9 years ago...
That if I could keep him organ healthy for 10 years...there
would be new information that would help him!
Not once did I ever believe that his brain would get hurt
beyond help...
and now 9 years into 10, it seems doubtful there will be help!

I have put everything I have into my Hollister to keep his
organs healthy...and him moving forward. I still believe
progress can be made! When you rely on your insurance for
help, sometimes progress is slow. It is a constant battle
trying to get what I think he needs!

In the last nine years.....So much has changed!

I no longer have my job I loved at Mercy or the people I
thought were my friends..
Sysco fired Dick long ago...after Hollister used $750,000
worth of insurance...he was gone..(shortly after his second
stroke in march of 2002)..Thanks to Iowa, this is a right
to work state!
His next job at TPC/Performace food groups...did exactly the
same thing...We did get the last word...after paying $1800
cobra a month for 17 months...
Hollister stayed 118 days in the hosital....Unfortunately,
Dick had a hard time finding a job...because everyone in the
Food business knew Hollister was sick and that was a death
of a salesman for Dick and work!

Awkward is the word I would describe how most people react
when they see us with Hollister. People at church, school,
sporting events, at the mall, anywhere will walk out of their
way not to see us.
I guess people don't know what to say or do.
Really, adult people don't know what to say or do....
Start reading Dear Abby!

We both come from large families with many siblings.
We only hear from 2 of my sisters. Everyone else in non
exsistant! "I guess were just not that close"

What would have helped Hollister recover the last four
years would have been seeing those Aunt and Uncles and
cousins.. Hollister loved his extended family.
I know when my cousin Laura comes in from D.C., Hollister
recognizes here immediately and starts laughing...

When you have a child who is terminally ill for 9 years,
you have to be prepared to fight your fight alone!
It has gotten easier to stay home and isolate myself with
Hollister.
I thank God everyday for him. He is a great listener!

My Mom and Dad have been great. They have done what they can do.
They have had their hands full with my Mother's Cancer and
orthopedic problem.
I wish I could be helping them!

The next few days will be very difficult. I remember exactly
what went on Monday and Tuesday as he was flown to the
Mayo Clinic by Peds. Transport with nurse RJ!
It was Tuesday November 6th 2001!

In the last nine years Hollister has spent over 18 months in
the Hospital. I have slept on every kind of cot and chair
imagineable!
We have spent every Holliday in the Hospital and Thanksgving
and Christmas and Easter at least 2 maybe three times.
Dick and Hollister have never had a birthday in the
Hospital.
Hillaree had her 16th birthday and her 13th birthday party
we had to take him to the Hospital. Harrison had his 12th
birthday...his "star" birthday at Blank. Hollister has dinged me
a couple of times!
I have never missed one night staying with him. I have never
left his room for much. I did go to Hillaree's 8th grade
graduation...for a few hours.

None of us are unscathed from this battle with MELAS...

As I face this week, my mind is racing and my heart is
broken and my stomach is upset!
But...
I do know we are not a lone. You can't be present in Hollister's life and not
realize he is being held very closely in the palm of God's hand!
Hollister always had a very spiritual connection with God, even as a small boy.
Hollister has always been very special!

If you can't see that, I am sorry for you!

Charlie Brown: I don't understand it.
I went trick-or-treating and all I got was a bag full of rocks.

Hollister update.... He continues to struggle!

Tuesday, September 21, 2010 9:58 PM CDT

Home sweet home!

I can't say what a relief it was to be in the PICU.
He has been staying there for 9 years in November.
There are a couple of nurses who have been a round and
the Intensivist has taken care of Hollister before...
What a relief.

Not sure what happened in surgery. It took over two hours
and he was in recovery for over two hours. I speculate
the Lactated Ringers played a role in that and the fact
that they thought he was on a ketogenic diet. This means
no carboydrates...

I asked Sunday night, when the IV was started why he wasn't
getting IV dextrose..He told me his blood surgar was fine.
I tried to explain that really had nothing to do with it.

So, all day Monday and during surgery he got no IV sugar...
AS he as he got to the unit, after she told me he had
gotten the Latacted ringers, she drew a lactic acid and
asked me what I thought...I told her he need SUGAR to flush
that out and to give the Mitochondria the idea that there
is free energy for them!
She checked his blood sugar and it was 170...and his
lactic acid was high...Metabolically he was struggling...

Shows just how strong Hollister is to overcome this!
Could have been devastating but he is strong!!!!

She started the IV dextrose and three hours later is Blood
sugar was 120 and three hours later it was 90...and the
next morning his lactic acid was almost normal!!!

His metabolic system is crazy...That is the idea of the whole
disease...
Later when the Intensivist game in, he was shocked he hadn't
been getting lots of sugar...I like that after nine years...
someone knows.

In the summer of 2006, if he had been treated by Doctors
who now him and his disease......
(makes me wonder if we hadn't been turfed to Domitillo 2
(adult neurology) if Hollister's outcome may have been different!

Tuesday morning, it was suggested if he could tolerated his
tube feeding we might be able to come home....!!!!

Finally at 11:00, a can of his food was started. First thing
to eat since Sunday morning.
It seemed to got in fine.
We waited the 30 minutes....and Dick and I were headed to
the bathroom with him and we ran into his geneticist...
Well, he puked and puked and puked.
Our dreams of going home were shattered!

Dick headed to the car,(as we had it loaded to go) to get
him fresh clothes. The nurse came in with a plan of rest and
the trying more food. He had to keep something down to go
home...or maybe we could leave on Wednesday!

So, I told her I would rather not feed him...a full gut on
a bumpy car ride now seemed stupid!
I convinced her I could take care of him at home and start
his feedings slow...I assured her this wasn't our first rodeo
with the nausea and vomitting...
She went out an pleaded our case with the Doctors....
and they let us go home..With the understanding that I would
call the surgeon if he had any trouble!! and to seek help in
the ER if need be....
(Dick and I laughed on the way home...ER..hahahaha,
Haven't had a chance to make sure Mercy gets how serioius
Hollister is)

We made it home around 6pm...He was ready to lay on the
couch. I gave him gatorade instead of food. I think he knew
he was home and was happy to be here.

He has some recovery to do. Not sure how to know just how
much pain he is having.

Hooch and Harrison(I think) were happy to see us!

Team tough wants to thank all of our prayer warriors...
you know who you are! I believe our parish has some pretty
powerful prayers! DCHS...thank you! once again Hollister
has benefited from you thoughts and prayers...Nine years
and going strong!

Team Tough is tired but joyous!!

Monday, September 20, 2010 5:05 PM CDT

What a day!

Hollister got out of surgery at 1:00...It just seemed like
a long time!
Dr. Moir came out and talked to us and told us that everything
went well.
The gallbladder had lots of very small stones. Hollister had
been taking the Urso forte for the last 2 1/2 years to
shrink the stones, so they would be passable. It appeared the
Urso was working.
It was definetly time to get it out. He said Hollister had
been passing those small stones and there was probably a lot
of pain with them!
Well, at that moment I couldn't have felt worse! He is so
stoic and tough that, I never noticed the pain.

Dr. Moir told us he would go to the unit. I wasn't too
surprised. He told us he like the idea of Hollister continuing
to breath all night! Me too!!!
He was in recovery a long time. Over two hours...

Hollister did finally make it to the PICU and he was
extubated. That was the biggest best surprise of the
day!
I was thrilled. He is tired and weak.

But..

Boy does he look good!

The resident did come in and told us that he was "accidentally"
give Lactated Ringers in the OR...
I almost had a heart attack..
I immediatly asked how this happened as I had been very
specific with anesthesia and everyone that he can never
have Lactated ringers..which is an IV solution that raises
your lactic acid....

AHHHHH

The L in MELAS...Lactic Acidosis.....

So they drew a lactic acid and of course it is high!

Hollister is resting comfortably at this exact moment!

Team Tough is thankful for Hollister's successful day!!!

Monday, September 20, 2010 10:24 AM CDT

What a morning it has been.

Hollister just this moment went into the OR.

He got up at 4am and sat on the commonde, thank you
GoLytely prep....
Finally at 6:30 he got off to get on the cart to go to
the surgery holding area...Hollister immediately fell
asleep...

Check in..paper work done...Wait...Wait...Wait...

Finally at 9am they send us back to Hollister's room.
Dr. Moir had been called into another case. He couldn't
help but bump Hollister...We were told it would probably
be after lunch when Dr. Moir was free.

We got back to his room..Left him on the cart...Sleeping...
Finally talked everyone into his seizure meds...

Transportation came to take us back to the holding area.

WOW!

Our nerves have been all over the place.

Anesthesia seemed to have some notes on Hollister.
That I liked very much. Everyone seems to understand
the seriousness of Hollister!

Keeping thinking and praying for Hollister, his surgeon,
anesthesia, and the nurses who are helping my boy!

Team Tough is anxiously waiting for Hollister's safe
return!

Sunday, September 19, 2010 10:55 PM CDT

We made it to Rochester about 4pm.

It was a very difficult drive for me.
I did not want to bring Hollister here. All I could think of
was all of awful things that happened to him in 2006!

I cried and cried at the thought and begged Dick to just
take us home!

The closer we got the worse I felt!
I did finally get a little nap from Austin to Rochester...
and the next thing I knew we were here!

Dick pulled up in front of St. Mary's and I just felt sick!
He dropped us off and we went in...So many memories danced
through head..The lobby is exactly as it was in 2001.
Not much has changed...
I do have so many very happy memories of Mayo Eugenlo Litta
childrens hospital...but what happened in 2006 always seems
to block out any happy thoughts here!

Hollister and I head over to the admissions person and present
our paper. Of course I got the .... "how old is he?"
I of course responded "23"..."Why are you being admitted
today"...."Hollister has a very serious illness and he needs
lots of pre-op stuff" "What floor are you going to"
I said "anywhere but Domitillo 2...we would stay in our
car if we had to go there."
"Why is Dr. Moir his surgeon?"
I said..."all of his doctors are pediatric...his illness
is classified as a pediatric illness!"
"Well, sit over there, while I figure out where he is going"...

I would just like to say that I had one piece of paper from
the surgeon that told me when and where to check in. I did
not write any of the orders or make any of the decisions.
I did not have any specifics that she thought I might...
So, as Hollister and I waited for instructions on where to
go next...He was very loud and vocal and I told to him to
talk and laugh all he wanted...Domitillo made you, they
can listen to you!.....
He appeared to offended a possie of older folks, who
continued to give us the evil eye until transportation game
and took us to our destination...appparently they did have
a room and we did not have to sleep in our car!

Much to our happiness, we landed on St. Francis 2...
Peds/adolescence...Hollister has been on this floor many
times...I felt better landing here.
The Nurses have been outstanding!
Kind, compassionate, and wanting to understand what happened
to Hollister.
Hollister loved them. They were all very attentive to him!
so far so good.

He had to get an IV started...I lost track on how many sticks
there were. In the end, he does have an IV.

The surprise of the night...He is getting GoLytely bowel
prep....going to be a very long long night...Hopefully, he
can tolerate this.

He will go down to surgery around 6:30 in the morning...
I am very nervous about anesthesia. I haven't had a chance
to talk to anyone yet. I am hopeing that his doctor's have
made the necessary arrangements for a safe induction, intubation,
and extubation of my boy! There are so many unknowns with Hollister
and the list of medications and gases he can't have is
every changing!

Surgery is what is it! His gallbladder has been needing to be
removed for over two years. I am anxious to hear if his
small bowel (jejunem) is OK. This is the area that was
perforated in 2006 and had the very ugly ileus in 2007.
It is located right where the gallbladder is located.

I have every confidence in Dr. Moir. He did Hollister's
muscle biopsy in 2001. We are very lucky to have him!
Dr. El-youseff(our gastroenerologist) set this all up for
us when we were here in July. He said it was time for it
to come out. He thought Hollister looked good....
no time like the present!

They thought we would be here 3-5 days...and then everyone
laughed and said 7-10 days....this is Hollister...He always
does things in his own time!

It seemed so far away and now it is just a few hours from
now!

Team Tough is strong...
but
needs your thoughts and prayers...

Friday, September 17, 2010 12:55 AM CDT

Beaverdale Fall Fest....
Starts in just a few short hours...

I know it really isn't fall...yet,
but in Beaverdale it is!!

We love Fall Fest and all it has to offer!

If you don't know...
The parade tomorrow is FUN FUN FUN....
and it the BEST BEST BEST parade..
Can't wait!

Hillaree Mae is on her way home! Yeah! I told her to stay
in Vermillion and go to the home football game. After
their big win against the Gophers last week...the first
home game should be fun...

but my girl Hillaree thinks the Beaverdale Fall Fest will
be FUN FUN FUN!!

I can't wait to see her.

Harrison has been a busy boy with lots of homecoming
activities this week. The big game tonight should be good.
No doubt in our minds DCHS will win.

Hollister unfortunately has gotten a cold/sinus something....
that is causing him some trouble!!

Hoping to get to some of the weekends activities...
including the DCHS games...and of course the fun parade...

Team Tough is looking forward to the weekend...

God's last name is not "Dammit." ~Author Unknown

Saturday, September 11, 2010 10:11 AM CDT

September 11....
Nine years ago...doesn't seem possible!

I remember just like everyone; exactly where I was the moment
that first plane hit the tower!

Excuse me, this is one of those weeks
that makes me look back at how our life has changed..
Some along the way have made this journey much easier...
and unfortunately some have not!

Hollister was in the hospital.
It was his first hospitalization with a seizure...
It was a huge loss for me.
It started over the weekend before!
That weekend, Dick had been fishing in Minnesota with his
brothers and cousins, which I am sure will never happen again!
So, it had been the kids and I all weekend. The game on
Friday had been cancelled due to weather...
Hollister was the football manager....

Sunday afternoon, it was raining when I dropped him off at the field...
Hillaree and I decided to go get goceries and make dinner.
No need to sit in the rain for a ballgame!(now I know better...
Dowling parents would sit through a tornado to watch their boys...)
Hillaree and I came home, she sat on the counter and ate lunch
while I put supper together...Harrison was playing at the
neighbors..
I looked out the window and the sun was shining...
So, Hillaree and I loaded ourselves in the van and away we
went...We had blankets to sit on and snacks in hand..
We we talking and talking as we took our seats...It was the
first time I had been to a game at the old Valley stadium.

When we got to the game there was a time out and I could
see Hollister out on the field with his gatorade bottles..
I knew how happy he was!

Still talking to people around us, I hear a very crabby OLD
man mumble something about the delay of game...He said "he
didn't know what the hold up what was...the guy down wasn't
a player...get on with the game".....my heart stopped as I
turned to see gatorade bottles everywhere and Hollister lying
on the ground...
Mr.Lark was with him and all of the coaches...I as a parent
didn't think and took off to get him...
I had a hard time to convince the officer that I needed to
get him!
I got on that field and knelt down by him, he had had a seizure and
was very slow to wake up!
I looked up and saw the entire team on one knee surrounded him!
I almost choked.
He did get up and insisted he stay...
But after halftime it was decided that it would be best if I
took him home!
I brought him home and turned the game on for him...He was
laying in Hillaree's bed so I could be close to him....and hear the game!
Of course he had another big seizure...and Dick got home just
in time to call the ambulance and our lives have been changed
forever!
When we got to the ER, he was still seizing and sick...
I begged them not to cut off the OLD football jersery the
boys had given him...I told them cut off his jeans....t-shirt...but save the jersey!!
Thank you Laurie Gerke for that..She is an exceptional nurse
at Blank...but for a moment she heard me Mom to Mom...
and that jersey is still a prized possession!

Hollister had to be admitted...It was awful!
Unfortunately for Hollister it was the start of a very tragic
fall!

We were discharged on 09-11-01...It was a Tuesday. ,Hollister
was very tired so he rested all day! I watched every agonizing
moment of what had happened that day to our country!

What I did learn on that fall day...was that football team
in the fall of 2001 was an amazing team..It is true they
won a state championship! It is true that Pat Lawson compared
Hollister to a bossy little terrior dog..and we just did what
he said!
It is true they almost took him to Hooters....but only made
it to the Parking lot! hahaha
That I made over 200 cookies each week for the team..
"Because Mrs. Farrell, those are lucky cookies!!!"
When Hollister was hospitalized during playoffs and state I continued
to have those cookies made...Thanks to the ST.Theresa Kitchen!
I learned that 18 year old men can be so compassionate and
caring that it makes my eyes very leaky!
The visits, love, and support that year made a difference
in Hollister's life!
They even bought him a football state championship ring, to
the hospital for him. He is very proud of that...
That football team of 2001 was very special...I thank them
for all they gave to Hollister..You were the only class to
truly embrace him...His own class of 2005 could have taken
a lesson from you!

On this day of reflection...we have more than what happened
to our country on our mind...we are also remembering our
Hollister long before he was sick!

Time marches forward...but I can gaurantee that not all
wounds are healed!

Team Tough is remembering!

Go State!!!

What do I have in common with most of the Iowa fans...

I didn't go to college there either!....hahahahahahaha!!!

PS!!!! Hi Hillaree...I love and miss you..Go Yotes!

Wednesday, September 1, 2010 3:38 AM CDT

Hard to believe it is September already!!!!
Not sure where the time is going!
I guess summer is truly over!!!

Wasn't the greatest summer...It was either too HOT or
too WET...
Seemed to follow our crappy winter!

Dick and I and Hollister did get Hillaree to Vermillion on
Saturday about one. First...what an awful drive from Des Moines.
Check in and moving in was very easy... She is on the 4th floor
with no elevator. We got to the parking lot, a swarm of kids
came and hauled all of her stuff to her room!!!!
It was awesome!
It has been overwhelming taking her to University.....
(we decided we wanted to sound European and say she was going
to University and not college...hahahah)
Hill and I had some time in the car to solve lots of problems!
We did the best we could getting her stuff put away and some
order in her things...
We headed to the dome, following the class of 2014. USD had
given them all red shirts with 14 on the back...It was
awesome..
At the dome was a convocation ceremony. It was very nice.
The department heads all marched in very formal in their
respective robes. The class of 2014 sat in rows of chairs..
set up much like a graduatioin ceremony.
The speakers were awesome. The President of USD, dean of
students, student body president...and several more..
The idea was, this day is as important as the day 4 years from
now that you will gather as a class again and get a bachelors
degree.
One speaker, who graduated 12 years ago, talked about doors
shutting. He wanted to be a doctor, that was his goal. He
chose to watch Jerry Springer instead of going to advanced
chemistry.....as a sophomore....Medical school door slammed
shut, with it came about 10 more doors... He did graduate
with a biology degree....He now lives in Washington DC and
was part of Obama's campaigne....He talked about how hard it
is to open any door....and has spent the last 12 years doing that...
Convocatioin was pretty cool! Made me think...maybe I would
have kept a few more doors open while I was trying to decide
what to do!!!
There were lots of welcome activities.

As impressed as I was. The campus was beautiful. People were
friendly....

I couldn't help but feel so sad and hurt.

I am so happy for Hillaree, she is were she wants and needs
to be.
It was hard for her to go, leaving Hollister has been very
hard for her.

The closer Saturday got, the sadder and more heartbroken I
got. It would just hit me in waves...Hollister...Sending
Hillaree away first...just seemed so out of order!

I have cried and cried over the fact that he is sick....
but now life moves forward..right here in our house.
It just feels so wrong.

Taking Hollister on Saturday also made it very clear that
our life doesn't fit...
No elevator, so only one of us could be with Hill at a time.
Dick had to sit out in the hall during the convocation because
Hollister just couldn't get it was time to be quiet!

Curbs!...suck!

Pill times, food times, and potty times....Cuts into what
events we could attend. Of course it was Hot...so how long
could he be out!

We did decide to stay overnight, so we could see her Sunday.
Not sure who we did that for...Mom or Hill! She did come out
and spend some time with us at the motel on Saturday night.
She was activitied out!

Sunday, Dick and I went to Walmart and loaded her up with
food for her room. We then met her for a brunch on campus,
then it was time to leave....That was awful...She walked
away alone......
There seemed to be lots to cry about....

My heart continues to ache. I am so happy for Hillaree and
the opportunities that lie ahead of her. She is so much
smarter and able to make better choices, than I ever could!
I can't wait for her to make her "college" friends...and
find a major!
I miss her terribly!

As for Hollister, I will always cry for all of his missed
opportunities...and that I have no idea what he would be
like at 23!

Team Tough is now in South Dakota!!!!

Go Yotes!

“Those who wish to sing, always find a song.”
Swedish Prover

Tuesday, August 24, 2010 9:46 AM CDT

A busy weekend for Hollister!

He did indeed make it to the DCHS football games!
Harrison made it through his first sophomore game intact!
The first kick off, my heart was beating faster than his;
I am sure!
He did just fine! We were quite happy to see him play!
Hollister had a great time and the weather couldn't have been
better. Rained all day and at game time was perfect!
Hillaree went along. Was nice to have her still with us!

Saturday we layed low! Didn't do much of anything!

Sunday, we took Hollister and Hillaree to the fair!
It was hot, Hollister did great. We were there almost 8
hours. Hollister had a great time, he was awake and laughing
and smiling most of the time!
It was very hot and by the time we got home we were all tired...
except Hollsiter. We layed him down and he laughed and laughed!
He was probably remembering how hot and tired we all were!

Yesterday he went swimming with his girl...Esmie and he was
awesome.
He was happy and walked better in the water than he has for
months! He was tall, proud, and smiling! It was good to see
some participation!

After his shower, Hillaree and I were going over to Ambulatory
where I used to work....
To clean out my locker... Well, we had the worst wheelchair
in the hospital. It was a funny little chair. He couldn't
sit in it. He kept sliding out of it. Looking back it was
rather funny...but funny was the last thing it was at the time!
We made it halfway up the sky walk over to amubulatory and he
couldn't stay in it!
Hillaree was even losing her patience with him and she is
always so patient and kind....I was ready to chuck the chair
and leave him with it!
By the grace of God, we made it back to the valet parking on
the westside. We told our regular valet guy to throw that
chair away! He could tell we were frustrated and kept
apologizing for the chair...Really wasn't his fault!

Hollister was so tired, he was sleeping as we put him in
the car!

He slept and slept!
Didn't make it to therapy in the afternoon!
He was worn out!

Sleeping in the morning.

Counting the days left with Hillaree...
Harrison starts tomorrow!

Summer is gone!

Team Tough is not looking forward to Hillaree leaving!

Thursday, August 19, 2010 11:42 AM CDT

Hollister is up and ready to go this morning.
He got to enjoy sitting with Hillaree during the "rice is pright".
Lots of noise from both.

Hillaree had her last day of "nannying" for the summer. She now has a week
to get her things ready to head to South Dakota!

Harrison it seems is gearing up for his sophomore year! Football starts on
Friday. First game of the year is Valley...always a big one!
Will be fun for all, weather pending we will be taking Hollister.

I waited until yesterday morning for lab work results!
I knew it would be very very complicated.
The lab stick on Monday was HELL!
He was stuck 4 times and then did a finger stick and dripped blood for ALL
of the tests...Not cool!

Yesterday when I talked to the nurse she told me the dilantin was normal...
I said what was the number I need to know...Well, it was normal! I told her
normal covered a lot of numbers... Finally, she got the chart and told me what it was....
Still on the high side of normal!
Then I asked about the ammonia level....She was confused! She told me the
same level as last week! I immediately ask her what his level was on Monday....
Well, I guess it didn't get done...
WHAT!
I told her that the doctor had wanted that level to know if he needed some
medication to help bring it down.
Then she told me, that since the Doctor hadn't seen Hollister before,
he wasn't sure what his cognition was....
I almost lost it....I told her he had a chart and this "new" doctor took the place
of a Doctor who left...His chart has been a part of Iowa Health Physcians
since he was 6 years old...His pediatric chart is part of that group!
OMG....
Then I had to ask her what cognition had to do with his ammonia level.
If he were more awake, this would have nothing to do with cognition!
I thought she couldn't get dumber, but I was wrong!
I asked her what his phenobarb level was....I guess that didn't get done
either...I know there was orders for all of those tests!

I told her Hollister has known Gallbladder problems and the ammonia level
is critical for his liver. Well she told me she just didn't know anything about
that!

I am very frustrated... I feel like writing a letter to the board of nursing and
starting the push for BSN programs everywhere! Frightens me just how
uneducated some nurses are...They have no idea how to problem solve or
understand anything!

I thank God everyday for my education at the University of Incarnate Word...
Guess maybe I did learn something! Everyone who went to class with me
is as surprised as I am.......hahahaha

Football is on our minds...

Team Tough is ready to eat some Tiger Meat!!!!!

Tuesday, August 17, 2010 10:00 AM CDT

We had a very quiet weekend!

Hillaree was in DC after an overnight stay in Milwaukee Friday night.
She had a great time. Thank you Laura and Nick!
She made it home safe and sound last night about 12:15.

Harrison was either at football or some social event.
Seems there is a lot of birthdays the first part of
August.

Hollister continued to sleep a lot over the weekend.
It was finally nice enough to take him outside. He did
manage to sleep out on the back patio while we(meaning Dick
and I) did yard work. I have never seen so many weeds. I
had no idea clover could get 2 feet tall!
Some places were just to muddy to touch!
Not sure how...but our neighbor Linda's yard and floweres
continue to look perfect!
While our yard looks like a drowned muddy mess!

Hollister did make it to therapy yesterday. He liked the
floating in the pool. Wasn't very interested in standing or
working. Same thing with OT.

He continues to be tired and lethargic!

Taking him in this morning for repeat of the lab work!
Wishing the rain would stop, making it easier to get him
in and out of the car.

Harrison with his new license in pocket is my new driver and
helper!
Should be an interesting trip!

Team Tough will be waiting for results!

Thursday, August 12, 2010 5:00 PM CDT

Harrison Patrick Farrell was 16 years ago at this moment!
Hard to imagine...and earlier this morning he went and got his drivers license!!!

Sixteen years ago, it was the first friday of the fair...Eastsider's night! Everyone, who I
worked with knows how badly I wanted to be a true Eastsider.......
(instead I have to settle for growing up East of Algona....)
(not nearly as cool!)
so, it was fitting that he be born on that night!

Harrison was a prayer answered for Hollister. He had his whole second grade class
praying for a brother! We finally had to tell his teacher it might be wise to start
praying for works of good! hahaha
Hillaree just assumed at 2 years and 10 months that we had provided baby
Harrison for her pleasure!
Our hearts were broken hours before we were to take him home and he ended up in the NICU.
Shock and disbelief. He had stopped breathing and was immediately in the NICU with
all of the really new and sick babies. He seemed ginormous.
He only had to stay 4 days. He was sent home with an apnea monitor and a known
heart murmur...
WHAT!

At this point in my very young life....I knew that this was the most difficult situation
I could ever handle! I reminded God daily that I was thankful for
my healthy children.....and I was admittedly weak!

Harrison kept that apnea monitor for an entire year. It took us a long time to
get used to it and not have an immediate heart attack when it alarmed!

It took God no time to remind me again how precious life is....
Harrison was only 3 years old when Hollister had his first seizure in 6th grade.
He was only 6(a first grader) when Hollister had his stroke and was diagnosed.

Harrison's sweet little life has been changed...who knows for sure if it is truly for
the better.

Harrison and I were looking at a very sweet picture on a shelf in the living room.
The picture is of the two them. The both have jean short overalls on and they
have their arms wrapped around each other! Their smiles are contagious.
It is a very joyous picture taken for no special reason. Long before Hollister
got sick.
Looking at the picture Harrison told me he felt like he had been cheated.
He was supposed to have a big brother to teach him, visit at college and to
always be his buddy. How cool it would have been to have Hollister as my
"normal" older brother!
After I pulled myself back together, I had no words for the aches of Hollister's sweet
little brother who he had asked God specifically for!

Hollister is feeling very poorly. He is sleeping continually. He didn't even know
it was Harrison's birthday today!
His dilantin level was high but so is his ammonia level.
This also could be part of the sleepiness.
Hollister will for obvious reasons not be going to therapy tomorrow.

Hillaree is getting ready to go to Washington DC for the weekend. My Cousin
Laura and her husband Nick graciously brought her a ticket for a weekend away
from crazy town here! She loves Washington and is very excited.

We are waiting for Harrison to get home from Football, so we can see
the Birthday boy!

Team Tough loves Harrison, Happy 16th Birthday!!!!

Tuesday, August 10, 2010 2:11 PM CDT

Enough rain...
Our little house and yard have all it can hold!
Maybe too much..
Our back porch is a mess from a leaky roof!
Dick has been trying to get in touch with the idiot who put a new roof on
for us 4 years ago! He is taking away our living space....Hollister and I
spend a lot time in that porch!
And this guy is no where to be found! He won't answer calls or return them...
Dick has even stopped by his house and he won't answer the door!
Nice guy!
Making a mess of our life!

Not to mention Beaverdale and water......just don't mix!
Not to much in the basement but enough for the dehumidifiers to be working
overtime!
Hollister's room had some water this morning..Not sure why! Hoping the
gutters just need to be cleaned!

Hollister is sleepy. Way too sleepy. Not sure what that is all about. I called
the local doctor and asked to get a dilantin level this morning. So, Hillaree
and I took him in for that. I don't think he woke up once during the whole
trip. Not sure how Hillaree is able to lift him. I worry about her back!

I am sure I will wait patiently all day to find out where his dilantin level is!
He is sleeping comfortable and cool on the couch!

My Mom did very well with her surgery last week. The best news was...there was
no cancer in the tumor or polyp!!!! She made it home and seems to be doing
well.
I am anxious to see her but Hollister cannot travel when it is this hot.
He doesn't need to be around someone who just got out of the hospital.

Hillaree is heading up to see G-ma tomorrow. Will be good for Hillaree to see
her before she leaves for South Dakota in a few weeks.

Harrison had his first Student ambassador training this morning.
He was one of 40 kids chosen at DCHS to be ambassadors. He was pretty
excited at the privilege of representing DCHS not just to new students and
parents but in the community!
Then it is on to Football until 8:30 tonight. I am hot and tired just thinking
about it!

Team tough

Tuesday, August 3, 2010 1:48 AM CDT

The weekend went by so fast, seems we didn't get anything
done!

Harrison is busy with football camp, started bright and
early on Saturday morning! Boy, he is tired!
I keep reminding him he does not have to go or play!

Hillaree is busy gathering her supplies as she readies
for college! I remind her I got to take 11 very small boxes
with me when I went to Texas for school!! That is all my dad
would let me take! Apparently, in 1983 UPS was very expensive!
She just laughs and laughs!

Hollister is tired and just not himself! He through me a curve
ball on Friday night. He was lying on the couch with his
supper going. Sound a sleep. Harrison and I were playing on
the computer. I looked over at Hollister and his head was
turned with his eyes in the corner...I tried to wake him
when we noticed his hand twitching...Really disappointed me.
He hasn't had a seizure since he was in the hospital in June.
He had had his afternoon medications... of course he vomited,
so I quickly gave some zofran...
Then I decided to give extra klonipin and Keppra.
Seemed to do the trick, no more seizures...
but he missed his whole supper losing over 800 calories for the day!

More excitement than we needed! Harrison is doing a great
job of learning how to help in these situations. He is
learning how to crush pills and get stuff I need. I am
very proud of him!

Hollister didn't make it to any therapy on Monday. He is
just too tired and weak! He is even having a hard time sitting!
Not sure what is causing this! Something seems very off!
Hopefully, it will present it self soon!

Please keep my Mom in your thoughts...She is having bowel
surgery in the morning. She has a mass; that the initial
biopsy said was not cancer...but we will know more when
it is all out!
Wish I could be with her, it is just too hard to take Hollister.
and he adds more stress because most of my family spends no time
with him and he makes them all extremely uncomfortable!

Team Tough is praying for the G-ma!

Thursday, July 29, 2010 8:37 AM CDT

Never does the human soul appear so strong as when it forgoes revenge,
and dares forgive an injury. ~E.H. Chapin

This is a good place to start!
When this journal was started in November of 2004,
Hollister and I were both skeptical! He had already been
sick for 3 years, what would we say.
Our friend Julie at Blank helped us set it up as we were
leaving after a lengthy hospitalization. Hollister was a
senior in high school.
Little did we know a week later he would be back in the
hospital at the Mayo Clinic, in the PICU intubated...
This page really was a handy tool for accurate information
to DCHS and St. Theresa's. Hillaree and Harrison were still
young and this page has taken a lot of pressure off of them
trying to answer questions!

Why do I feel the need to continue writing about Hollister!
I am not sure I do. Dick and I have talked many times about
closing this page, for some reason people feel they have the
right to judge and ridicule us. That certainly is not the
purpose of the page.
Trust me, I am well aware of my shortcomings!

We have lived with Hollister's devil disease for 9 years.
It has affected Hillaree and Harrison as much as it has
Hollister. Most days, I am more worried about them, than I
am Hollister. To know that the disease mutation is there is
heart breaking.
So, if we are offending you with how we choose to take care
of our family, we are sorry. Our crappy cars and little house
are the least of our worries!

For now, I believe that Hollister's journey is worth telling,
even if the sacrifices cost!
If you have some really important, hurtful things to say...
please feel free to email me, call me, or stop by. Obviously,
who ever wrote those notes,
knows a lot about what goes on here and where we are!

Now for the upate...

We took Hollister to the Mayo Clinic this week.
The Brother's Mayo as I like to call it!
We went up Monday night as we had an early Ultra sound of
his Gall Bladder, Tuesday morning. Appointments with gastroenterolgy
and neurology. Both went well. I will talk about our
appointment with GI at a later date. He did think Hollister
looked great. He was awake and strong!
Neurology, was also pleased. No one could believe it was only a
month ago that he was in the hospital. Hollister even
was cooperative during the exam! We decided to stay on the
Phenobarbitol for another month. Not thrilled with that
but OK!
Our last appointment was with the Geneticist yesterday afternoon.
I am always a little skeptical about this appointment.
She never references him as Hollister, he is alway his
disease to her!
Hollister was awake for her also but she was less impressed
than everyone else. She did comment that she had never
seen him awake!
The good news is that the Mayo Clinic is finally starting
to do some work in genetics....MELAS specifically.
Now she loves our family....hahahaha
The cool thing is...Hollister had a skin and muscle biopsy
done in November of 2001. This is how they diagnosed the MELAS.
On the computer yesterday, she was able to locate the skin
biopsy and confirm the lab still had it!
They will be able to grow new skin of Hollister's using the
stem cells...and then sudy the MELAS and see if they can
somehow manipulate the mtDNA and fix the mutation....
HOLY COW!!!

of course this won't help Hollister....
but...
If we can help this from happening to some other child...
we are on board and ready to be studied.
She was very excited! The Doctor doing the study has the
grant money and is ready to go!!

Hollister would love that maybe he is helping!!!!

So, Hollister's journey is very important!
He is strong and healthy for a reason!

It was a good visit. It is nice to hear that we are doing
a good job. Hearing that someone is impressed...is a great
feeling!
The Brother's Mayo would be proud!

Team Tough is optimistic!!!

I would not waste my life in friction when it could be turned into momentum.
~Frances Willard

Saturday, July 24, 2010 3:46 PM CDT

“Don't ask what the world needs.
Ask what makes you come alive, and go do it.
Because what the world needs is people who have come alive.”
—Howard Thurman

“What we have done for ourselves alone dies with us;
what we have done for others and the world remains
and is immortal.”
—Albert Pike

Not sure when I will be able to write an update on this
Hollister's caringbridge site.
Yesterday there were two extremely wicked posts!
Dick tried to remove them from the guestbook before I
could see them...but I did get to see them....both!
Not sure of anything at this time!
This has added much insult to injury!

This service that you perform is not only supplying
the needs of God's people
but is also overflowing in many expressions of thanks to God.
2Corinthians 9:12

Tuesday, July 20, 2010 10:51 AM CDT

Well I missed writing a note on Friday...It was 3 weeks
at home! and the Church says...."AMEN"

Last week was a busy week. Hillaree, Hollister, and I went
to Algona on Tuesday and came home on Thursday.
Thank you Hillaree for all your help. It is a lot of work
to take Hollister anywhere...but to take him to stay anywhere...is a team!

Of course it was so HOT that we didn't get to do what we
had hopped!
We did get to see G-ma and G-pa...It had been since May.
My Mom hasn't been feeling the best and they couldn't come
to Hillaree's graduation or see us when Hollister was in
the hospital...so it was good to see them.

Thank you Aunt Judy and Uncle Tom for your hospitality.
They let us invade their home with all of "our" stuff.
Hollister was even loud enough one night to wake most
of us up at 2am...lucky lucky Aunt Judy...she got to go to
work with very little sleep!

It has been a long time since I was in Algona....

Hollister made it to theray on Friday. He was tired.
Didn't do much over the weekend....it was too hot and Hollister is tired.
Now he is not wanting to wake up!
Sleep, sleep, sleep...
Not sure what it all means!

Swimming yesterday for PT was ok. Hollister was able to relax
but didn't walkas much as he should have....
Took a nice nap at lunch before therapy in the afternoon...
but he was tired and didn't participate much!

Mayo Clinic appointments are next week...hoping to get some
drug levels to know where he sits on his seizure medications...
because August 1st....I start weaning the Phenobarbitol!

No pressure there!

Team Tough is waiting for the weather to cooperate!

Friday, July 9, 2010 4:21 PM CDT

2 weeks at home!
Certainly not a record but something to celebrate!

It has been a quiet week here! Harrison has been at wrestling
camp all week. The team goes over to Nebraska for camp.
I know he took a lot of snacks with him.
This is his second year to go, so he knows what to expect!
I have been lucky enough to get a text or two from him and it
sounds like he is having a pretty good week wrestling!

He had to miss a week of baseball, but games have only been
played on Thursday and Friday. It has been an awful year
for baseball, with all of the rain!

Hillaree is busy counting the minutes until she leave for
college. She is off to the lake again this weekend! Lucky
her!

Hollister has been tired this week. Continues to have his
sleep times mixed up. We have been getting him out of bed
around 6am...Crazy!

He has been relatively happy. Lots of lauging and smiling.
He is still pretty weak and tires easily when sitting in
the chair!

He did make it to therpy today. They didn't see him Monday
because of the Holiday. Last Friday he didn't make it there
as he was just too tired. So today, he seemed stronger to
all of the girls. Not full strength but stronger!
He was full of smiles and giggles...and certainly some
groans when it was time to stretch!

He did take a little water for Sue today during speech.
That is very exciting!

He is sound a sleep on the couch now, getting his dinner.
We are taking him to the I-Cubs game later tonight. He
loves to go there and it is so easy to get him in and out!

Team tough is happy to be home 2 weeks!

Sunday, July 4, 2010 8:58 AM CDT

Happy 4th of July!!

Who doesn't love the 4th of July.
As a kid, you knew summer was half over!
We always got to go to Wesley to see the fireworks...
They were the greatest fireworks...ever!
sitting on the hood of the car, eating candy, waiting for
the pop as each and every firework went up!!
and the OHHHH'S and the AHHHHHH'S... All I knew was it
didn't get anybetter than that! Freedom is an awesom thing!!

Last night we took Hollister out to Praire Meadows to watch some
horseracing and fireworks! We met some friends out there
who enjoy Hollister and are not bothered by him!
He had a great time. It was so nice out. He was loving all
of the fresh air, he laughed and laughed!
I do have to say picking horses by name is not necessarliy
the best theory on picking winners!

The fireworks were awesome. Hollister had his head back,
eyes open, and appeared to love them. He had a smile on his
face the entire time. He was laughing a lot!
The fireworks have definetly gotten better over the years!
Last nights were awesome!

Thought Hollister would be exhausted from his big night out...
but he got a second wind when we got home. He was pretty
chatty and excited when he went to bed.

He did not make it to therapy on Friday. He was tired and
slept and slept. He had a very busy first week at home!

No big plans today. Raining already, reminding me that I
didn't get done in the yard what I needed too!!!

Happy 4th of July! Hopefully, the rain will stop so we can
see fireworks tonight and not just on TV!!

Hope everyone has a great 4th, give thanks for our Freedom!!

Team Tough is wearing the red, white, and blue!!

This nation will remain the land of the free
only so long as it is the home of the brave.
~Elmer Davis

Friday, July 2, 2010 7:42 AM CDT

July!
Summer is flying by!

Hollister continues to have ups and downs.
He is having a hard time with sleep.

he has been outside everyday this week. Lots of sunshine
for my boy!
The weather this week couldn't have been nicer.
He seems to be tolerating it well.

Tuesday we took him to DCHS/Valley game played at Principal park
(where the I-Cubs play. We like to take Hollister there,
it is very handicapp accessible!)It was a great night
to watch high school baseball. Hollister seemed to enjoy himself!
It seems there always has to be a but.....all good times seem to have one!
I had told Hollister we were outside at a ballgame, this would be a perfect
place to use his voice! For the most part his voice is joyous noise to us!
We don't hear it that often and when he is happy and laughing it truly is joyous!
Unfortunately, the rest of the world doesn't understand! He was making noise
during the National anthem...it was melodic almost as if he were singing!
Of course there were some "elderly folks", who thought he was less than joyous...
and if looks had killed..Dick, Hollister and I would have died on the spot!
Worst part was they were on the DCHS side!
Makes it so hard to take him out of the house!
It seems so often that the people who judge him are "elderly"...
I can't imagine how hard all of this is on Hollister...One day your living life
and the next day you are a teenager watching your body, voice,
ability to communicate, vision, and hearing slip away from you.
Everything you once enjoyed is gone!!!!
He has handled this with dignity and grace you can only get from God!
And if you can't see that...
Pity on you!

Yesterday, we took him to Harrison's ballgames in the
middle of the day...He did get a little too much sun.
He was ready for a nap when we got home!!

Then we headed down to the capitol for Yankee Doodle Pops.
What agreat night! Hillaree went with us and we had a picnic.
Couldn't have been better. Hollister enjoyed him self and
laughed and smiled!
Feels great to be alive!

Made our night to see a green Hollister t-shirt on a boy
about 8. Hillaree spotted him in a crowd and it made us
all smile! To think people are still thinking of him!
BUT...
Hillaree ran into him in line for the Kaibos and asked about
the t-shirt...He had no idea and neither did his dad...
maybe a garage sale.....
then his little sister called him meatball and off they went!.....

Team tough was a little wounded!!!

Today is a therapy day for Hollsiter. He is sitting in the
chair...sleeping! Hopefully, he can rest before therapy!

1 week at home!!

Team Tough is Celebrating!

You have to love a nation that celebrates its independence every July 4,
not with a parade of guns, tanks, and soldiers who file by the White House
in a show of strength and muscle, but with family picnics where kids throw Frisbees,
the potato salad gets iffy, and the flies die from happiness. You may think you have overeaten,
but it is patriotism.
~Erma Bombeck

Tuesday, June 29, 2010 2:41 PM CDT

It does feel good to be home!

Even a very short stay of 15 days is just enough for everyone
to get out a routine and living with everyone home!

Hollister's daily routine and medications have changed just
enough...will be glad when things are back to normal....

He finished the antibiotics yesterday. Here is hoping he really is
over the psuedomonis! No way to know. Watching for temps and
increased seizures!

Hollister made it to all of his therapies yesteray. He didnt do much!
He is so tired!
He was wide awake and really enjoyed the water. He was very
verbal and certainly provided some entertainment in the pool!
OT and SPT showed how weak he really is. He had a hard time
sitting up by himself!At least he was able to go!

Last night we sat out on the porch and visited with a few
of the neighbors. It was such a nice night and was great
medicine for us all.
Hollister slept well last night!

Harrison is busy with baseball, they are trying to make
up all of the games missed due to all of the rain!
Hillaree is nannying three little boys and they are keeping her busy.
She is also trying to get some hours lifegaurding!!!

Hollister is sleeping on the patio while I try and find
anything in my flower beds but weeds!!!

Team Tough is loving the warmth of the Sun!!!

Friday, June 25, 2010 11:26 PM CDT

We have clicked out heals three times and we are
HOME!
HOME
HOME!

What a day it has been.

Just when I had resigned myself to a few more days here,
the option of coming home was again in my head!

A different ID doctor came in this morning and thought
we could finish the antibiotics orally at home!

My thoughts were...awesome
BUT.......

Is that as good as the IV antibiotics he was getting.
The continous drip he had been on for ten days was pretty
potenet stuff, could 4 days of oral medications be as good!

So I asked the intensivist, Dr. Flowers(who was the doctor
from the NTMICU, he continued to followe Hollister on
the floor! This man is so smart!I am grateful to him for
getting Hollister out of the status and heading home in
15 days!) thought it would be OK. I rephrased the question
and asked again. He told me he thought the CXR was OK, he
said it is a long way from good, but Hollister isn't very
strong yet, so he probably isn't inflating his lungs as
well as he could!
OK i can live with that, we are going home!

Now comes the hard part, getting it all together to come home!
Paperwork and perscriptions! His seizure drugs have changed,
we added one and lowered doses. I had written it all done,
so I needed it all to match!! That took some doing!
Thanks to Katie at Medicap, she always gives me what I need!

Hollister was dressed in the chair waiting for the wheelchair, picc removed...
and in comes Dr.Vermir, the ID doctor who wanted us to stay 4 more days...
he looks good in clothes, whats going on....
I gently said, we are going home!
WHAT!
I told him his partner had come in this morning and dischared him...
WHAT!
I told him that she put him on the oral antibiotic and I had talked to Dr. Flowers....
He wasn't impressed!
He hoped it would work and we wouldn't come back in a month
with the psuedomonis colonized.
I knew it..
I told him we could stay!
He gave me his blessing said to keep a close eye on him!
He reminded me gently how awful Hollister's history is
with bugs!

So, we came home with a lot less commotion that we left
the house!

I can tell Hollister is happy to be home!

I am so grateful for the MTICU, the Ruan Center Neurology,
Dr. Flowers,and the Infectioius Disease Doctors.
When Hollister came in he was in a status epilepticus.
More people die during these seizures than live.
I was told by a neurologist that if I had waited 3 more
hours at home, I wouldn't have needed to bring him in.
That slap is still stinging!

The knowledge of the Doctors together made wise decisions
that saved Hollister's life! Thank you Thank you!

BUT....

The nurses in the MTICU get the credit for getting him
better and out of that hospital in 15 days...a record!
They took such awesome care of him, every single one of them.
He was bathed everyday, including his hair! He was turned
and fluffed every two hours. They talked to him, cared for
him, and loved him in the most awesome way! The worked around
all of the tubes and wires like it was no big deal. They
kept there eye on Hollister the entire time. The called
him by name, wanted to see pictures of him, and really
wanted to know him! I get teary eyed now, just thinking about it!
Impressive and kudos! They should all get a Mercy STAR!

We are very happy to be home!!!

Team Tough is HOME!!!

Home is a shelter from storms - all sorts of storms.
~William J. Bennett

Thursday, June 24, 2010 10:40 PM CDT

CRAP!!!!

Someone here started a rumor yesterday overriding the rumor
I had already started. When Hollister is in the hospital
I am very good at starting rumors! Usually the rumor has
to do with his discharge date! So, we transferred out of the
unit on Monday. Friday seemed very logical to me as a
pending date of discharge. Then Dr. Vermeri the Infectious
Disease doctor told me, he would need 10 days antibiotics and
a CXR to confirm that the bugs were dead! I counted 10 days
and that is today...Friday seemed right...

But...
Nuerology kept telling me all week, we need to get him
out of here as quick as we can so he something else doesn't
kick his ass...
so Friday still looks good...

Yesterday, the intensivist who has followed him...told us
if the CXR looked good, maybe we could leave tomorrow...
which is today, Thursday....So, I was trying to play it
very cool about going home! Didn't want to jinx it.
Usually, I have Hollister in a wheelchair, stuff in the hall
on a cart, and the bed stripped.
I waited and waited all day for NO! So, my rumor was topped!
We are not leaving on Thursday or Friday!

Well, the ID doctor...said he needs to be here 4 more days!
His cxr didn't look as good as he wants it too. He continues
to have a low grade temp and he is coughing more!
He explained that Pseudomonis argenious has a nasty ability
to hide and chew up tissue.
That was enough of a reason for me! I trust this group of
doctors. They pulled Hollister out of a very tight spot in
2007!
He knows this nasty little bug better than I do...
So Hollister and I will be here for antibiotics 4 more
days...
The Rumor is...Hollister may go Monday....or Tuesday!!!!

Hollister had an OK day. He was definetly a little more
tired today than yesterday. He had speech, occupational,
and physical therapy today. Lots of stretching and complaining! hahaha

He is resting now. A good nights sleep is exactly what he
needs!

Hollister looks good and continues to remind me just how
tough and determined he is!

Thank you to the freshman{soon to be sophomores)boys and
their parents. Here in room 677 we are eating well. What
a treat this is for us! Thank you Thank you!
Mary thank you for looking our for Harrison. I am relieved
to know that he has you! Thank you for your organizational
ability. The meals, taking care of Harrison and all of the
boys on the baseball and football teams! All of this helps
me take care of Hollister!

Team Tough is Blessed!

Remember Hollister in your thoughts and prayers as he
continues to fight a serious preditor!

May home be the place from which you launch your dreams.
~ Mary Anne Radmacher

Wednesday, June 23, 2010 11:51 PM CDT

Oh what a day it has been!

It has been a good day. I was able this morning by myself
to get Hollister to the chair. He sat and slept well in the chair all morning.
Dick helped me get him back to bed, he did well considering
how tired he was.

Thought for sure he would nap, he was so happy to be back
in bed. He did catnap but not for long.
Jamie and Nikki his cousins came in and boy was he happy!
He was joyous to see the girls. He responded to them like
he had seen them yesterday! Awesome!

He continues to shut his eyes for the doctors and therapists.
He seems to be shuting them out. Thank Goodnes the
therapist come in and work anyway!

When he was finished with PT he was back in the chair.
He sat up for a good three hours! He is still weak but
he is getting stronger everyday.

He is finally tired and starting to sleep a little better.
That makes this Mom a little happier! I am way to old to
go without sleep night after night!

A CXR will be done in the morning. If it shows that the
pnuemonia looks better, he will be able to stop the
continuous antibiotics and hopefully come home!
Hollister is unable to cough up sputum and unable to say
how his chest feels. He doesn't follow any commands so he
can't deep breath or use incentive spiromoty. So....
this makes it difficult to know when he is better!

The seizure medications are also a problem. He is on
different dosages than he was on at home. Once he is well,
it will be hard to know exactly how much to give! He is
also on phenobarbitol, we all know this does not excite
me at all. I asked today how long he needed it and I was
told I could wean him at home...AHHHHHHH No stress!
Hopefully, they will give me protocol to follow!!!

Big day tomorrow! Hopefully, I will write tomorrow we are
HOME!!!

TEAM TOUGH is very THANKFUL!!!

Tuesday, June 22, 2010 11:17 PM CDT

Hollister decided to throw me a nasty curve ball this
morning!

He really scared a student respiratory student.
He came in and started Hollister's nebulizer treatment and
I was still "laying" in the recliner next to Hollister's
bed.
I noticed out of the corner of my eye that his arms were
jerking, I glanced over and stood straight up. He was having
a grand mal/tonic clonic seizure...
of course it was 7ish change of shift and a fire alarm!
I went out to the desk and told them he was seizing and
we needed our nurse....
The poor respiratory student was nervous!

Then a few minutes later, one of the pct's were giving
him a bedbath and repositioning him...and he starts again!

This time I knew our nurse and went and told her.
I came back in the room and the pct was on her little
transmitter asking for the nurse...Hollister made her
nervous also!

Finally, Hollister got two of ativan and then the rest of
his seizure medications...He slept and slept and slept.
It was awsome, he slept so peacefully...
Amazing to think that 2 of ativan stopped the seizure
and he was able to rest. Last week he was
given enough medication to stop and entire an zoo and it didn't touch him.
It is great that he is feeling better!

He woke up around 8:30pm, it was nice to see to his eyes and
his beautiful smile. He was somewhat interactive. He played
oppossum when the Doctor came in tonight. It is awesome to
see he is still up to his old tricks!

He did stand at the side of the bed for a few minutes with
me tonight. He is still very strong! He did get stretched
by OT and PT today. He did wake up and grumble but
continued sleeping!

A couple of changes in his seizure medications. His
dilantin is still low. I think he is starting to push the
envelope with all of the seizures!

Here is a very short description of what Hollister's
disease is. I do know how awful it is.
His specific illness is MELAS....
Mitochondrial Encephalomyopathy Lactic Acidosis and Stroke.

Hollister has a very specific mutation in the DNA of his
mitochondria. It is maternally inheritated mutation.
Hard to imagine a mother would pass this awful disease on
to her child!

This is a generalized overview of what a Mitochondrial disease is.

What is Mitochondrial disease.....from the UMDF...
Mitochondrial diseases result from failures of the mitochondria,
specialized compartments present in every cell of the
body except red blood cells. Mitochondria are responsible for creating
more than 90f the energy needed by the body to sustain life
and support growth. When they fail, less and less energy is generated
within the cell. Cell injury and even cell death follow.
If this process is repeated throughout the body,
whole systems begin to fail, and the life of the person
in whom this is happening is severely compromised.

His disease is very complicated.

Team Tough is very hopeful!

Two more days of the continous antibiotics and a CXR
will be done to see where the pnemonia is. Hopefully the
seizures will be stopped!
And we will be headed out the door!

Lots to think about and pray for!

Tuesday, June 22, 2010 2:09 AM CDT

Hollister rolled out of the unit yesterday afternoon!
It was awesome.
He was awake, laughing and in a recliner.
Couldn't have been better!

His ABG in the morning were good!
I am always happy with good!
Better is generally the evil of good, especially in the
hospital!

No seizures since Sunday. His dilantin was 9 still low but
getting better!

Hollister is now in the north tower, 6th floor.
This is a neuro/medical floor. All the years I did anesthesia
round, I was in and out of these! I would have never guessed
that anyone would be a patient here, especially my boy!
Weird. I forgot how little these rooms are...but they are
private and that is what is important for him!
Everyone knows that I am not impressed by the surroundings,
good care for Hollsiter that impresses me! So far so good!

I was very impressed with his care in the NTMICU!
He got out of there safely without picking up any other
bugs...his breathing and lungs improved. This is all
because of good nursing care! His skin is intact and looks
good! WOW! Thank you to everyone who helped him get better!
Eleven days in the unit is not out shortest or longest stay
in an ICU situation but this was one of the best!

Hollister is still not sleeping! He is happy and smiling.
He has to be exhausted! He looks tired. he slept from 9pm
until now. He looked so peaceful!

Transferring him from the recliner to the bed was easier
than expected. The PT transferred him in the morning. He
was so happy I left him there for a while! When I stood him
he did great. He stood for a minute or better with minimal
assistance from me! WOW. Takes a lot of stregth to stand
and smile at the same time.

I never tire of his smiles or laughter!

I now realize just how sick he was at home!

Team tough has moved and we are hoping to keep on moving...
6N is a lot closer to the door!

Monday, June 21, 2010 4:04 AM CDT

Hollister continues to breath on his own!
That kind of information fills a page.

But

Of course I have more to say.
Hollister would expect that I would have a lot to say!
He used to beg his therapist at Blank not to talk to his
Mom!
She talks too much and we have places to go!

He is doing OK.

He is still breathing fast. The concern is that when you
breath fast you don't always airate your body well.
I think his color looks good and I am continually asking
all of the nurses and respiratory people what they think!

He is getting ABG's done this morning! I am more than
hopeful they will be good!

Hollister sat at the edge of the bed yesterday!!!!
The nurses were king of shocked....
I just told them that is how we roll! hahaha
One of the nurses last night told me I was pretty tough on
him...exactly what he needs.
I reminded her I am selfish in my "toughness" and actions...
I want him HOME!!!!

The last time he sat with some assistance for 30 minutes!
This is what will make his lungs stronger!

He continues to have some seizures!
His dilantin level is still critically LOW. He did get
another IV bolus yesterday afternoon! Hopefully today it
will be therapuetic!

Early on this Monday morning, as Hollister is awake and so
am I!. I have so much to be thankful for!
He has come a long way in 11 days!!!
He does need to get his days and nights switched back to
what I consider normal!

The goal for the day is he will get to move out of the NTMICU!!!!!

Team tough is on a roll!!!

Saturday, June 19, 2010 1:49 PM CDT

HOLLISTER IS EXTUBATED!!!
HOLLISTER IS EXTUBATED!!!
HOLLISTER IS EXTUBATED!!!

That felt so good to write, I felt the need to do it three
times!

I had a long talk with respiratory yesterday about Hollister,
extubation, and the possibility of a trach.
He told me that in the NTMICU they only like to keep patients
intubated 7-10 days before they get a tracheostomy!
He told me, Hollister really needed to get off the Vent
by Monday morning!

Today is day 9!!!
This is not a record for Hollister being intubated....
but we are playing with the big kids now in the adult world
and there is no gray area in the adult world.

Last night he rested well. The nasty NG tube was pulled
around 1am. They started to use his Mic-key button.
Buttons are not common in adults! So, they all liked the
huge salem sump that was in his nose. I can only imagine
how much Hollister hated it.

This morning they came and did the EEG which was good but
it interfered with his breathing! He had to be put back on
fully vented mode afterwards...and I feared we were done
weaning for the day....
Respiratory came in and checked his ABG's to see where he
was.

Much to my happiness they were good. The Doctor came in
and talked about extubating him and the unknown's with
Hollister. It seems all I know with Hollister is the unknowns!

He said we could try it, if he fails he would reintubate and
we would go from there.

It all happened so fast...I was nervous and couldn't help
have a few tears. Respiratory and Hollister's nurse came
in and he was tube free...10:15 this morning. He is tube free.
He coughed, gagged, puked, and smiled...my nervous tears
were immediately tears of JOY!!! Only Hollister could be
extubated and smile!

His throat appears to be sore! He is happy! He heard Hillaree's
voice on the phone and he laughed and smiled!

He is holding his own. He needs to get stronger but so
far so good!

His dilantin level is only up to 6 so he got another
bolus. his EEG was not excting at all, a few spikes but
no real seizure actvity!

Now comes the hard part! Hollister is very weak from lying
in the bed. He needs to get strength. Keeping him from
acquiring any of the nasty hospital bugs is the real job
in front of us. He still has a picc line and a foley.
Hollister behaves like a paper towel. If there is a bacteria
or virus around, he soaks it up!

Thank you to everyone who has been so nice to us!
We couldn't survive Hollister's journey if it weren't for
all of you.

“Imagine what a harmonious world it could be if every single person,
both young and old,
shared a little of what he is good at doing.”
-Quincy Jones

Team Tough is JOYOUS!!!

Friday, June 18, 2010 10:40 PM CDT

What a day it has been!

Rain, Rain and more Rain!
I think there is no worse feeling than knowing your loved
one is intubated on a vent and there is a tornado warning/watch.
I have no idea what the difference is but one I believe is worse than
the other!
The nurse came in and shut the blinds and the then the door
as she left. Even the dog knows to hide in the basement
under Hollister's bed! Lucky for us this was not the first
time.

Hollister had a pretty good day yesterday. Until...
around 6pm...he started in with the seizures...
and he got more ativan and continued with the seizures.

I started thinking! Scary, I know but I was starting to
get nervous about these seizures!
I noticed a pattern. His seizures seemed to be starting at
6am or 6pm. Weird!
Then I remember the nurse going over all of his medications
on Tuesday. I pointed out to her that his dilantin was
not the dosage he was on at home. But.... the neurologist
and I had talked on Monday and he told me he would adjust
all of his medications as soon as he was awake and extubated!
So, the nurse and I thought it was all OK..and the phenobarbitol
would cover him!
I was trying to eliminated variables, as we all know I do not
like them!
and the seizing continued.
It wasn't until 9pm or 9am that he would get dilantin. so
Seizing at 6 meds at 9. Something is wrong!!!

The Mayo Clinic has always told me, if he is seizing close
to his medication times, it doesn't necessarily mean
he needs his medications and if his levels are that low,
then they are not controlling his seizures. He should
be able miss a dose or two before his levels drop low enough
to have a seizure.

Last night, I realized that he had missed 50mg of dilantin
daily for 7 days...this would be enough to drop a level
causing seizures! The nurse agreed to have a level checked
in the morning. I tried to get it done last night, they
were all skeptical..
Then he seized again at 6am this morning! I was anxioius to
get a level. He was sedated with a lot of Ativan and
finally a level was drawn and his morning meds given at 9.

11:00 his level was back and it was 2.8!!!
Ah ha! I was right....therapuetic is 10-20!
He got an IV bolus and has slept all day!

So...another day of rest..
a step to the side at least if not a step back!

He remains intubated and vented at this time. No weaning today
as he was way too sleepy!

Good news!
PT came in this morning and stretched his arms and legs.
She was pleased the he was not as tight or had as much
tone as she thougth. She was thrilled that he has been
wearing his arm/elbow splints!

Neurology came in and checked him over. Hollister will get
an EEG in the morning to make sure he isn't seizing and
we can't see them. It was someone we hadn't met. He asked
some questions about Hollister. He validated my entire
existence in about 4 minutes. He said "guys like Hollister
need a lot of therapy!" Incredible!

It has been a very long week in room 8! There has been
an amazing amount of soul searching! Hollister has once
again showen his true spirit. I am ever thankful that
he is such an extraordinary young man that he is able to
life me up with him as he goes.

Hoping tomorrow brings extubation for Hollister!
Praying for strength and courage that he will breath on
his own!

Tonight Hollister sleeps peacefully, covered with a sheet!
Hope it can last!

Team Tough is anxious!

Thursday, June 17, 2010 3:01 PM CDT

It is already a week that Hollister has been in the
MTICU. That means it has been a week that he has been
intubated, lying in bed. This is definetly not good!
Not good for so many reasons.
His body needs to be up and moving.
I am starting to get very antsy about getting the endotracheal
tube out!!!!
Everyday someone comes in and tells me that it "MIGHT"
not be possible to extubate him! Everyday I have to
remind everyone that this is Hollister and he will be
able to get that tube OUT!
That's the way he rolls!!!!

He has a had a dose of lasix the last two days trying to
move some fluid out of his lungs. Fluid has moved! Not
sure it is out of his lungs! His CXR still looks awful.
I want him up sitting in chair, this will help! No one
has jumping at my idea of sitting at the bedside with him!
I do know it can be done, Hollister sat at the bedside
intubated in the PICU in 2007!

He has more moments of awakeness last night and today.
He is crossing his legs in bed, moving his arms all over,
and moving his head looking around the room.

He continues to have some small seizures. He is getting
the ativan a couple times a day to control them. He isn't
get any sedation other that the crazy amount of seizure
medications to control. He is sleeping quite a bit which
is good or he would have all of the tubes pulled out.
He is able to pick off the EKG pads when we have his
hand and arm splints off!

A PICC line was placed in his left arm today. Waiting for
conformatin we can use it. The Nurse who put it in told
me she had some difficulty getting it to pass. I told her
that was just Hollister. I explained that Hollister never
does anything easy or lets anything be easy for anyone
else. He works hard and was a very smart thinker....
so he pushes everyone to their limits! Ask anyone who
has had the priveledge of taking care of him!

A PICC line was needed as he has had the central line in
his jugular for a week and that is a HUGE potential source
of infection.

The good news of the day....
The blood cultures so far are negative!
The C-diff first sample negative!
His temp has been staying under 100
That is awesome.

The bacteria that is in his lungs is Pseudomonas. The
good news is that one of the antibiotics that he is on will
cover it. So, they are able to stop the one he doesn't need!
This is good, antibiotics at this level and strength
are really hard on your gut!
I am grateful for a Mircbiology teacher in college
who actully taught us something...
and told us someday we would remember and use it...
Never thought it would be talking to infectious disease
about Hollister!

"The generic name Pseudomonas created for these organisms was
defined in rather vague terms in 1894 as a genus of
Gram-negative, rod-shaped and polar-flagella bacteria."

The ID Doctor told me it was kind of odd that Hollister
has pseudomonas, usually it shows up in patients who have
been here a while and intubated or recently in the the
hospital. Hollister may have brought this in with him!

Now, that I have had time to think.... I have questions.

Hillaree had a great time in Venezuela. I am so grateful
she has a role modle like Father Kirby in her life.
Those little girls of Casa Hogar bring so much to Hillaree's life.
She saw a need when she was there and is already figuring
out how to make it happen!

Harrison is finally playing some ball. Crazy rain, I was
wondering if any games would get played. Wishing Hollister
and I were sitting in the stands...Soon I hope.

I am anxioius to get that tube out! I have faith in
Hollister that he is strong and willing to be breathe
on his own!

Thank you, your prayers are being heard and answered
and we all feel it!

God is Good!

Team Tough is Hopeful!

Wednesday, June 16, 2010 7:45 AM CDT

Morning and the sun is shining.
Wasn't sure what it was!!!
Hollister's room almost had a ray of heat for a moment
then the fan was turned back up!

Not sure how he is handling such cold. His feet and
arms are freezing, he would be very unhappy if he
realized it.

He rested via some sedation yesterday. He kept his temp
under 100 with cold, medications, and antibiotics.

His CXR continues to show a very large ugly pnuemonia in
his right lung. I am anxious for it to start improving.
I keep reminding myself that CXR can lag a day or two
in what they show...weird!
Not sure if this is true but someone toldme this one time and I am going with it!

He is definetly growing something nasty in his lungs.
The Infectious disease doctors are waiting for it to be
identified to know we are treating the exact bugs.
I am hopeful that the antibiotic change was the right one.

Hollister had a couple of small seizures around 4am..
They did treat with some ativan and his regular scheduled
medications and it hit him...
He seems to be resting very comfortably with all of the
sedation and I am sure he is exhausted.

I appreciate the nurses coming in every two hours and
turning him, this has to be helping his lungs as well as
his skin and muscles.
this makes him cough and cough and as awful as that is,
this has to be good as the nurses suction out a lot of
crap!

The intensivist was in this morning and said to let him
rest another day. He didn't leave me feeling as confident
in the rest idea as he did yesterday. I am starting to
feel very anxiouis as Hollister needs to start moving
forward...most importantly he needs to not step back!

I keep reminding myself...that what Hollister needs is
time...
Time to rest....
Time to heal....
Time to gather strength...
Time to let all the medications do their jobs....

Well all I have at this point is time!!!

Team Tough is in need of thoughts and prayers and Time!!!

Tuesday, June 15, 2010 4:32 AM CDT

not sure where to start...

I went to post my journal to this page and the computer
left the Mercy system and my journal entry was gone...

AHHHHHH not sure I have enough energy or brain cells left
to write it over!

So much has happened since Sunday night at 11pm.
He rested well on Sunday afternoon and was up and ready to
go at 11pm. I stood and talked to him for a long time.
He was looking around, it appeared that he was trying to
figure out what had happened.
The problem is he was up all night!
When the ventilator was changed to "smart" mode. To get
Hollister ready to be extubated he had to work very hard
to breathe.
The resiratory therapist was showing me that he was
doing well.
until, he had some huge coughing episodes and couldn't
catch back up.
at the same time it was noticed that he was having some
myoclonic jerks, so an EEG was ordered to make sure
he wasn't heading into another Status situation..

The ventilator was switched back to breathing for Hollister
again. He was having a horrible time coughing and was
trying to push out the tube with his tongue.
The EEG was done and he was trying to get up and move
during that.

He was given some tylenol for a little temperature..around
100..
He was tired and struggling. He just couldn't get comfortable.

In the early morning hours he started pooping. It was that
ugly smelly poop and there was a lot of it. Knowing that
he is on some really strong nasty antibiotics that kill
of your "normal" flora with the bugs...I asked if it could
be C-Diff...no one thought so.

Around 3pm, neurology came in and said the EEG was
"normal" well not "normal" but without seizure activity.
This was very good news. He was recommending that we
move forward with the extubation tomorrow.

Then around 5pm, I looked at the monitor, which I hardly
every do...
His temp was 102.5...I got the nurse to get more tylenol.

Then around 5:45 I noticed he was having a grand mal seizure.
We looked at the monitor and his temp was going up...
FAST!
We cleaned him and I begged for a stool sample to be
sent...Crazy I know..but something is wrong!

Every number his temp went up I felt like a little piece
of my heart melted. There is no control in the hospital

I then asked for Motrin..We put the ice packs all over him,
the fan was blowing...
Waiting and waiting for the cooling blanket and motrin
to get here.
I have no patience on my best day...
The cooling blanket on, iced towels over him, and finally
the motrin given.
Blood cultures sent..urine sent...
Versed given to help him calm down and rest, stop
working so hard!

7:45 temp was....104.1

Not good, his brain is hurt on his best day and now I
imagine it frying inside of his skull, not to mention
other important organs...liver, kidneys, and gut!

His temp finally started going down around 8pm first it
was very slow. By 10pm it was under 100!!!

AMEN!!

We took the wet cold towels off first, ice bags, and then
the cooling blanket was turned off. The Fan was turned off
also. Hollister was cold! The nurse did not want him
shivering, which could lead to another seizure and start
a whole nother round of hell!

He cleaned him up, gave him more versed and he looked
pretty good.

He is hovering at 99.6, no blanket, just a very cold room
and a hospital gown.

Infectious disease was called and he remembered Hollister
from the Yeast in his blood at Thanksgiving 2007.
I was glad to see him.
The antibiotics for his lungs must not be covering all
of the bugs/bacteria. Which is probably responsible for
all that went on today.
He was very glad that a stool sample was sent...Yeh Mom!!
He put Hollister on continuous antiobiotics..I didn't
realize you could do that!
He sent some other cultures...most importanly to check
on the yeast!

I am hopeful that he figured out the bugs(antibiotics),
that will kill the (bugs)infections making Hollister better!

It has been very long day!

Hollister is resting/sedated well. He looks comfortable..
if you can with an endotracheal tube in...

He took some very serious steps back today!
I do feel very lucky he wasn't extubated when his temp
went up. It is always harder to re-intubate someone!

I am grateful that his brain is not seizing continously
on the monitor and it is considered his "normal"!!

God is here!
and he is Good!

Hollister has strength beyond what I can know.
His ability to fight has always carried me through the
worst of it.

He is my Hero!

Hollister is Tough....Team Tough

Sunday, June 13, 2010 10:04 PM CDT

Team Tough made some progress today!

Hollister's got the continuous EEG discontinued today.
The epitologist feels confindent that the seizures are
stopped. He is therapuetic on ALL of seizure medications.
This is a good first step!

It was great that as soon as the EEG was gone our
nurse came in and washed his hair. What an awesome
thing. I can only imagine how good that must have felt.

It was also a great thing for me to be able to touch
his hair and face! I believe that has helped us both!

He remains intubated but he is breathing quite a bit
on his own. Hoping tomorrow he will be stonger and able
to be extubated...I am keeping my fingers crossed but
will not be disappointed. He has been through a lot
the last few weeks/months. Not to mention the crazy
amount of medications he recieved, and the energy he
has expended...he is exhausted.

He did open his eyes quite a bit today. He even shook
his head NO once at the nurse. He has interacted a
little bit with me but not enough.

His pnuemonia continues and of course it is enough to
show on a CXR. He has fluid/pnuemonia in the bases of
both lungs. It is unbelievable the amount of "gunk"
suctioned out. Certainly isn't very nice, but has to be
done!

He had his bath already and he is tucked in until he is
turned in two hours...Hopefully, he will rest tonight and
be ready to work tomorrow!

This is an awful week for Hollister to be sick...
Harrison has baseball games everyday this week!

Hillaree is finishing up her trip to Venezuela. I know she
is having an awesome time with those girls. I can't
wait for her to get home!!!

Team Tough continues to need extra thoughts and prayers!!!!

Saturday, June 12, 2010 0:02 AM CDT

Hollister continues to add to his struggles.

Today was one of those days...

The seizures appear to be better.
The question is will they continue to be better when they
start to wean the medications to wake up. Lots of variables...
and we all know I do not like variables!!!

Hollister looks comfortable! finally. It is awesome to see
his body resting. He has to be exhausted from the last 6
weeks of seizures...and the crazy amount of medications he
has recieved.

He does respond by moving or opening his eyes and most of the
time it is very purposeful and appropriate.

Hollister is growing gram negative cocci in the blood culture
that was drawn in the ER..not good!
and he also has pneumonia...also not good.
Hollister likes to grow bugs...we sure learned that the
hard way in 2007...

So we need him to get better so we can start for the door,
before anything else shows up!!

They repeated several blood cultures from the central line
in his neck...
and got some nasty sputum for his lungs via the endotracheal
tube. He does not like to be suctioned at all. It is very
awkward as it makes him cough and cough on the tube!

Also urine was sent from the Foley catheter. another
line for bugs!!!

The plan is to start weaning him off the went in the
morning. This is always difficult for Hollister. He needs
to be extubated because of the pnuemonia.
It may be hard for him to have the strength or desire to
breath on his own. This is always a very scary place to be!!!!

Hollister is finished with his bed bath and looks very
peaceful. He smells good. Hollister has had amazing care
since was brought into this unit. It is very comfortable and
everyone has treated him so well...

Last night, I was explaining to the nurse about how difficult
the transition from pediatrics to the adult side has been.
For the obvious reasons....but I told her it was because his
nurses in peds....LOVED HIM! and not that this isn't an
awesome place, and the care is great....but it has been
so comforting to be with people who love him...
She was very empathetic to my concerns....and assured me
that they were capable of loving him also!

Team tough continues to be hurt...and needs your
thoughts and prayers....

Friday, June 11, 2010 1:03 PM CDT

Hollister continues to be sedated and intubated.

This morning the epitologist came in...
First I have to say I am quite impressed that Mercy has
an epitologist!!!
If you have been following Hollister a long time, you know
how fond I am of the epitologist and how grateful I am for
them...
The ones I have met all seem very similar. They are very
knowledgeable and like to explain... Which is very good for
Hollister and I.

Hollister has been having no apparent seizure activity.
He had a very quiet night after the second loading dose
of Phenobarbitol. He is getting a regular dose every 8 hours
and his regular seizure meds.

But...
The epitologist explained that he is having some seizure
spikes coming from the right side of his brain....
Which is very odd since most of the activity was coming from
the left side yesterday!

Hopefully, the medications will get all seizure activity to
stop!

His temperature is down a bit, so the fan is off but this
room remains very COLD!!
The nurse asked me how I thought he looked...and I told her
he would be very mad at her...He doesn't like to be COLD!!!
and he would be freezing!

Thanks to everyone who has stopped by and sent messages..
Keep them coming! Team Tough is gaining strength from all
of you!

Team Tough...especially Hollister is needing all of your
continued thoughts and prayers....

Friday, June 11, 2010 0:18 AM CDT

Team Tough is hurting!!
Hollister is at Mercy in the NTMICU...
Where grown ups go!

He is intubated with a continuous EEG in place and on some
ginorous medications!

It has been a couple of very long days for Hollister.

Last night he was so weak and lethargic that we couldn't
get him on the stair chair to the basement.
I didn't want to bring him in last night...
Seemed awkward at the time!

So Hollister slept on the couch and I slept on the cot next
to him...OK...there really wasn't much sleep!

I checked his blood sugar before bed...and it was 125...
which is good, but I decided to run a little gatorade with
a little extra salt in it....I would have rather have
pedialyte..but at midnight you go with what you have!!

I started giving him meds around 5am. I continued to give
him any and every medication I could have to stop the
seizures....I gave the last of what I could at 1:45...
and it seemed his seizures where getting bigger...and
he started to vomit...I consulted with my helper Harrison
and it was decided that it was time to call 911!!!
Why is it the phone is never charged or useable when you
really have an important call????
Then we heard the ambulance in our neighborhood....
I hadn't even called yet...
It was squad 9 and they were out...Squad 5 came and took
Hollister in...There wasn't much messing around...
and I am not sure they were impressed or shocked at the
amount of drugs I had given him!!!

I wasn't excited about coming to the ER...after what
happened last month...
and this visit was starting the same way...
We were put in a room with several other people..
Hollister seizures where 5 minutes apart and getting
bigger....

I was very very anxious...He was having what I call the
cluster seizures...and nothing good can come from this..
I don't get crazy when he has one or two grand mals...
but the cluster continues...and bad things happen!!
I even said that out loud...Trust me, this is not headed in the
right direction...Nothing good will come from this!

So, I was very busy trying to get my point across..
I was told many years ago....(by Shawn his SPT at Blank)
That I was the airway protector...I take my jobs very
seriously...So I was too busy with seizures and coughing
to worry about paperwork..

Not long, we were moved to a single room in the ER...it was
small, but no one could see Hollister...
His seizures continued...I of course want things to move
as quickly as I can get stuff at home...seems everything
needed to come from somewhere....
I will say that I was very very impressed with his lab
stick...She was awesome..One stick...and I never saw so
much blood. KUDOS!!

Then out of no where..in comes a neurologist..
He was ready for business..
He called the NMICU intensivist and really meant business..

He had big drugs and wasn't afraid to use them...

He moved us to an even bigger room...

I did ask if we would be charged a room charge for 3 rooms..
I was trying to be funny...but the nurse said.."that's not
the way it works...."

By 5:27 Hollister was intubated
and a few minutes later he had a central line..

WOW!!

Unfortunately, the seizures continued...

At 6:00 they started him on Versed...50mg and hour...
I could hardly believe it...
He was still seizing every 15 minutes...
CRAZY!!!

We left the ER at 6:45 and Hollister stopped and got a
cat scan on his way to the unit...
(I hate for him to have scans.....)

We are in with the big people now...
We had to wait in the waiting area while he was admitted
to the unit...That was hard....I reminded them we are from
pediatrics...

When I got in his room the Versed had been uped to 100mg
an hour and he was still seizing...my heart ached..
my eyes hurt just from looking at his bloodshot seizing
eyes...

Around 9:00 they switched him from Versed to Phenobarbitol..
and gave him a hugemongous loading dose and he was
still seizing...so at Midnight..they ordered one more ginormous
dose for him...hopefully this will work...

His white count is elevated and his temp is up...
antibiotics have been started...
He has a foley catheter, and endotracheal tube, and a
central line....I can't help but feel nervous about YEAST!!!

His labs have all been pretty good. A couple of things
out of whack...
but no real explanation of what has been going on recently.

It is now almost 2am...Hollister looks very comfortable.
The nurses have been in and bathed him and repositioned him.
and he seems very sedated... I believe...Phenobarbitol coma....

Hollister needs lots of prayers and thoughts....

Team Tough is adjusting to life in the adult world.....
so far so good. Everyone in this unit has been very nice,
informative, and are taking very good care of my boy!!!!

and....

The Neurologist said as he walked out of the room....
We can fix this!!!!

Monday, June 7, 2010 8:40 PM CDT

Summer is here...

Harrison finished up with his school last week.
He had a very success freshman year. He is busy
with the freshman baseball team and finishing up drivers
ed. Then he can finally get his school permit.
This will help as he has to be at DCHS pretty much all
summer! Speed and agility and weight training for football
and wrestling...not to mention baseball practice and games.
Wrestling practice with some tournaments and the Nebbraska
camp thrown in for fun!!!
It all goes by so fast!!

Hillaree has been enjoying her time at home since graduation.
She has been busy getting ready to go Venezuela to Casa
Hogar. I am so proud of her, she works and babysits alot
to pay for her trip. She has paid her entire way all three
years she has gone. She has also fundraised or paid for
all she is responsible to take to the girls. She is very
committed to those girls at the orphanage.
Lucky for me, her heart is so full that it spills over into
mine!!!
The group is leaving tomorrow afternoon, headed to
Barinas Venezuela!! Those sweet little girls will be
lucky for a week!!

Father Kirby has a blog that he writes on.
He tries to update daily if he can. He also will download
pictures...and notes can be left!!
Hillaree would love to hear from lots of you!
Feel free to browse the website and learn about the
girls Hillaree loves so much!!!

http://web.mac.com/jkirby1/terra_livre_2008/June_Mission.html

Hollister is still struggling. He had another one of those
hugemongous seizures on Saturday morning....
I had Hollister in the shower and we were home alone...
It was no fun!!!
Somehow, I got him to the family room couch...He started
to seize again, I gave him diastat and he slept until
9:30pm!!
Hillaree got home from babysitting around 2am
and she helped me get him to bed,
unfortunately he didn't sleep.
He did sleep from 9am to 3pm on Sunday....and he didn't sleep
at all last night.
finally got him up at 7...went swimming at 10... he did
OK, but he was tired! tried to sleep through his shower.
Took a 20 minute cat nap and went back to therapy at 2:30!
He didn't do too bad! I thought he would be ready for bed
when he got home...Nope...he was happy and laughing. He
looked good...
He hit the wall at 7:30, I was talking to him, his right
hand started twitching, I could tell he was going to seize.
Time to get to bed. He did seize on the toliet..as usual!!
I had given the meds I could at that time...and he finally
sleeping comfortably!!!!
Momma is tired...Sleep has been hard to come by the last few days/week!!
I am pretty sure I hit a wall about a month ago!!!haha..
Now, tonight...my sleep will be one eye at a time,
as I have to keep on eye on him!!!

Good news is no therapy tomorrow and Hollister and I can
lay low as we wait for Hillaree to leave!!!

Headed to the Mayo Clinic next Tuesday.
Will be glad to talk to the Neurologist!!

Team Tough is excited for Hillaree as she heads to
Casa Hogar to share her beautiful spirit with those
sweet girls!!!

Thursday, May 27, 2010 11:55 PM CDT

We made it through the Baccalaurate Mass last Thursday
and Graduation on Friday night.

Both events were very classy reminding us why we choose
to send out kids to DCHS. I am always so impressed with
the quality of education the kids have gotten. Not to
mention that senior class did over 43,000 hours of
community service. Very proud of Hillaree she did get
a service chord for having well over 300 hours.

I made it through both ceremonies without a tear....I am
sure August will be tough, when she actually leaves for
college.

Her party was Saturday night and it couldn't have been
nicer. The weather was perfect. Thank you to everyone
who came. It was nice to see so many people "loving" Hill!
I enjoyed seeing all of the little people that she babysits
for!!!

Hollister continues to struggle, he had a hugemongous
seizure on Thursday, Friday, and again during Hillaree's
party. Him and I got to rest in his room for quite a while!

Hillaree had a great time and we tried very hard not to make
a big deal about Hollister not feeling well!!!
I told Dick, I felt Ok as one of his Favorite nurses from
blank was here...Susie a Peds flight nurse...If I needed
help! Looking back, I wish I would have had her start and IV!!!!
I did give him diastat and he rested and was ready to get up,
so around 9pm we took him up to hang out...
He seemed to have a good time. Went back to bed around 1am...
he was very tried on Sunday, Monday, Tuesday and Wednesday!
Oh yeah...Today too!

Hillaree and I did take Hollister to the Sex and the City 2,
movie today. He loved that show!!!Has the whole series on
DVD....He slept through most of it...Made Hillaree and I
sad! knowing how much he would love to see it...He loved
Carrie!!!

Team Tough is very very proud of Hillaree!!

Team Tough Cheers for Hillaree!!!

There is no need to reach high for the stars.
They are already within you - just reach deep into yourself!
~Terri Guillemets

Friday, May 14, 2010 8:56 AM CDT

The sun is shining and it is B-E-A-U-T-I-F-U-L!!!!!!!!

Hillaree just left to finish her high school days...
Took a picture of her....like I remember taking a picture
of her as she headed off to kindergarten....
I have that same feeling in my gut, and it is shamefully awful!

Eighteen year olds are awesome! This last day of school is
no big deal! Another milestone passed! I am sure I will be
full of "Hillaree-isms" the next week.

We did miss the STS senior dinner that Mr. Gaffney does for
the kids. Hillaree and I were very sad, Hollister wasn't
up to it and Hillaree was not feeling the best last night either...

Wednesday turned out to be very stressful for Hollister...
well not really for Hollister but for me!
He slept ALL day. I tried to get him to up to shower at
10:00, he did not want to get out of bed. He fell back asleep
and didn't wake up....and didn't wake up....and didn't wake
up.
It was like he was sedated!
Finally, I think all of the seizing, not sleeping at night,
and the increased Keppra hit him and hit him hard!
I stayed in the basement all day just watching and checking
him!
Wondering if I should keep giving his meds...

Finally, around 10pm when Dick got home, we got him up for
a few minutes to sit in a chair. He was back in bed asleep
within 30 minutes. It was time for more meds....

So, we slept with the lamp on again! I ususally just leave
the TV on so I can always see him...but the last few nights,
I have felt so uneasy about him, I have left the lamp on!

It was almost funny, around 3am he was awake. He appreared
to hit me. It was like, hey I am awake...notice. So, I
turned to see him very bright eyed. Boy, was I happy to see
him... I hugged him and talked to him about how long he had
slept...

Finally, when Dick came down around 6:30 we got him up and
brought him upstairs...first time since Monday!
He was up all day! I even layed him on the couch at lunch
time thinking he was tired, nope! He as just lying on the
couch smiling!

Supper was another story... Projectile vomiting started
halfway through his feeding! Not sure where that came from!
Thank goodness we weren't at the STS senior supper.
That would have been awful!
He appeared to be so tired. Couldn't stay awake...
He did perk up and didn't get to bed until 10... He slept
well for the first few hours....he has been awake, patiently
waiting to get up. laughing and giggling. Hopefully, I can
get him out of bed and to the shower!!!

Therapy this afternoon. Hoping the twitch is gone...and
he can focus and work hard! It is time to start gaining some
lost strength!!!
He is still so strong and I can see so much in his beautiful
blue eyes!!!

Team Tough is happy it is Friday!!!!

There is a thin line that separates laughter and pain,
comedy and tragedy, humor and hurt.
Erma Bombeck

Wednesday, May 12, 2010 11:26 AM CDT

Another Rainy day!!!

Hollister has the right idea, he went back to sleep!
I tried several times this morning to get him up. He
would have nothing to do with that. He is very strong
and stubborn when he wants to be. I guess, he wasn't ready
for the day!

I am sitting in the basement with him, so I am getting a lot
of laundry done.hahaha

That horrible twitch/seizure is lessoning but it is still
there. I am waiting to call Rochester to see if the
increased medications will help. I know the Neurologist
thought it they would be stopped by Saturday night!
I am giving it a little more time, knowing that Hollister
doesn't metabolize anything the way he should!

He is definetly more tired with the increased Keppra!

He enjoyed the pool on Monday. He was very relaxed. He
didn't want to walk much, but he seemed to enjoy the
floating in his therapist arms...(oh yeah, she is young,
blonde, and very cute!!!) I remind him of that....always!

He was relaxed for OT in the afternoon and let her stretch
his arms, back, and hips...for SPT he was almost funny!
He seemed to be saying no to everything!!!

Track is over for Harrison, the weather didn't allow us to
make it to one meet. I think he is glad it is over...He
did make the freshman baseball team. He was pretty excited
about this. There were lots of kids that tried out and he
made it through both cuts!
He will have a busy summer with baseball, football training,
and wrestling...Today, he has his first job interview for a
lifegaurding job with the city of Des Moines. Crazy to think
Harrison with a JOB!!!

Hillaree is done with school on Friday. She has finals the
next two days...and I can't even think about it!
Last night, she had to finish a big project for her
environmental science class...she had to build a house that
is very Green...Of course we were up late last night finishing.
Turned out cute, she and Dick did a good job...
but, we had to laugh that she was leaving high school pretty
much how she has lived the last 13 years of her life! Up late
with a project...I can't count how many times this has
happened!!!!

Hoping Hollister will feel up to therapy today.
Hoping that the twitch/seizure will stop, today!!!

Team Tough is Hopeful!!!!

Sunday, May 09, 2010 11:00 PM CDT

Happy Mother's Day!!!

Giving birth is little more than a set of muscular contractions
granting passage of a child. Then the mother is born.
-- Erma Bombeck

Turned out to be a sunny day here!!!

Hillaree and I were tired from staying out until 5am...
at the after Prom..

I finally did get to talk to the Mayo Clinic(a neurologist)
on Friday at noon!

He was happy that his lab work was all normal for Hollister.
He still believes that the twitch in Hollister face is
seizure activity.

He increased one of his medications significantly.
I was a little alarmed because I was told that 6000mg was
the most he could have in a day...and he assured me looking
at his lab values he could increase it safely to 7500mg
a day. This is a very very large dosage!

He thought the twitch would be stopping after 5 doses of the
increased medication...So, by Saturday night we should
see a difference...
Hasn't happened yet. Maybe with Hollister's metabolilsm it
will take a day or two....

He did have another HUGE seizure Friday night at bedtime..
This is the worst! Makes a long night for me...Hard to sleep
not knowing what will happen!

Not much went on here today...
Dick did some yard work.
Hillaree was working on her last project for school.

Hollister has been very tired with the extra medications...
lots of sleeping!!

Here's to a happy Mother's Day...especially to my Mom!

Team Tough Loves Mothers!!!!

When you are a mother,
you are never really alone in your thoughts.
A mother always has to think twice,
once for herself and once for her child.
~Sophia Loren

Friday, May 7, 2010 8:55 AM CDT

Hollister is up and ready to go!
He looks pretty good this morning, twitch and all!

The past couple days have been rough!

Wednesday morning I finally talked with the nurse from the
Mayo Clinic. The doctor had decided the twitch was more
than likely partial seizures.
He wanted Hollister to get blood levels on all of his
seizure medications and an EEG. He wanted Hollister to go
to the emergency room to get this done and to be evaluated
by the ER physician and he wanted all of the results!!!
He told me that the EEG may be negative, but he still believes
the twitch is seizures!

So....

I called Hollsiter's local Doctor and talked with his nurse.
I asked if there was a way to do this all outpatient
because I HATE to take Hollister to the ER!!! Labwork wouldn't
be a problem but there was no way to get an EEG scheduled for
the same day...
That seemed really STUPID to me, so I called the Mayo Clinic
back and we agreed to go to the ER. All the orders would
be faxed to Hollister's doctor here and we would take them
to the ER.

This doesn't sound difficult at all..
and I was very happy to think that we might get to the bottom of this!

WRONG....

Hollister's physician is affliated with Methodist...
and we take Hollister to the Mercy ER...Hollister's doctor
has no problem with this. He understands our decision is
based on POOR care in the Methodist ER.....and Hollister's
cardiologist likes us to use Mercy...This decision was made
4 years ago!

It has been a horrible transition from pediatrics to adult
care. MELAS is considered a pediatric illness, especially
since Hollister's onset was 14. Just like other pediatric
diseases...pediatric specialist will follow these young
adults as long as they are alive...It would be awesome to
know Hollister has an unlimited life expectancy and he
was a normal 23 year old...but he has surpassed his prognosis......

SO....

We take Hollister and his orders from the Mayo Clinic to the
Mercy ER..(we have only had him there three times,
he came in by ambulance and has been very very sick!)

The receptionist asked why we were there if his doctor
was a Methodist doctor...
I said, "we have insurance and can go anywhere
and the orders are from the Mayo Clinic!!!!"
What I wanted to say was...."WHAT!!! are you kidding me!!!
I worked here for over 17 years...this is not how "we"
treat guests! and please stop flossing your teeth in front
of us!"

Finally we make it to the back and into a room...
Hollister was happy, he almost seemed relieved, like he
knew he was getting help...

BUT....boy were we wrong!!!

Our visit to the ER couldn't have been more awful!!
The nurses and doctor were so horribly condisending and
uninterested in Hollister, MELAS, or why we were there!
The unprofessional behavior and "flirting" at the desk
made me wonder if we had some how stumbled into and
episode of Gray's anatomy or Mercy.....

We did get the EEG and some lab work and an IV was started
to give Hollister IV fluid, no one cared that he should have
been getting Dextrose in his IV....(blood sugar was only 88 after his breakfast!!)
Again AWFUL!!!

We left as soon as the EEG was done...and came home!

Hollister was exhausted and slept most of the night.

Yesterday, he was up early and looked pretty good, still
twitching but he was more animated!!
He napped from noon until....
He had a HUGE Grand-Mal seizure at 5:30!! It was a biggie.
took him a LONG time to recover. Watching him turn blue
and then gray is a little hard to watch...and being so
helpless!!!
I am so grateful for Hillaree. She is the best help!
She is always so calm and she will do and get everything needed.
Last night while we were watching him slowly recover,
she asked some really good airway questions...
She has taken first aid and CPR several times for lifegaurding.
Her questions and thoughts are so smart!

He looked bad and the twitching was non stop all night.

He did sleep pretty good last night. First night all week
that he hasn't thrown up in the middle of the night.
I did remember to give some zofran at bedtime and he
didn't have supper and I only gave his seizure meds at
bedtime, he didn't get the whole cocktail!! Trying to get
his gut empty!

Will feed him at lunchtime and see how that goes!

Waiting to hear from the Mayo Clinic. I am hoping that the
ER did get everything sent up to them. Keppra and Lamictal
levels have to be sent out, so they take a few days to get
the results...
****0955*** Just talked to the Mayo Clinic Neurology Department.
I called because it is Friday and I don't want to wait an entire weekend!
Nothing from Mercy has been sent, no EEG, no labs, no CXR, no EKG...
NOTHING!!!

It has been a long frustrating week, I can't even imagine
how Hollister feels! When I think about it, I just get
weepy...
Imagine in the middle of the night...throwing up, not being
able to move, yell to get someone's attention..
Knowing that I am right next to him sleeping, if I don't hear
it right away he could choke, fill his lungs....and he can't
get my attention, he can't coordinate his movements to hit
me, yell MOM...
Not to mention, over a week of this awful facial twitch...
he can't say or do anything to help!

On the cloudy rainy day, I "patiently" wait for the
Mayo Clinic to call with a plan!!!

Hopefully, Hollister will feel up to therapy later!!

Team Tough is lucky to have so many who care!!

Patience:
A minor form of despair disguised as a virtue.
~Ambrose Bierce

Tuesday, May 4, 2010 4:13 PM CDT

I have to write again today how much I hate MAY....
May came in pretty much like it did four years ago...
KICKING Hollister's bum!!!

Friday, Hollister's day was pretty awful...
We did get his blood drawn and a CXR...just to make sure he
didn't aspirate anything...the good news is that he hasn't!
His lungs look OK. Again, I made them let Dick and I stand
him which wasn't easy but worth it!!
Even got his blood on one stick...but not sure exactly what
was drawn. I didn't see any ice so I am sure there was no
lactic acid...which is silly, because this is a marker for
Hollister and where he is metabolically...

We had time to wait before therapy...so we sat in the Blank
lobby. got to see lots of people we hadn't seen for a while...
but, Hollister fell out of his wheelchair...of course there
went his head on the ground...Thank you Kim for helping get
him back in his chair.
Therapy was a bust...He didn't do much!
He has been drooling and drooling..and his mouth is constantly
jerking to the right....He did stand for a short time but
he wasn't able to do anything in Speech.

So we came home and decided to put him to bed...but
he fell out of the Wheel chair again...this time on the
tile floor...hit his head exactly where he had earlier....

It was AWFUL!!!!

He was in bed sound asleep by 4!!!
His mouth twitched and twitched...
this in the past has not lead to anything good.
Usually this when he has a stroke!!!

His labs looked OK...but his Dilantin as high...this
makes no sense!

Of course Friday night was DCHS night at the Iowa Cubs...
A fundraiser for the freshman class...and Harrison is the
class president and he was responsible for a lot of the
"goings on" at the game....but...Hollister and I stayed
home again....

He looked a little better Saturday morning...awake and
somewhat alert...but that lip twitching continues....
by 4, he was ready for bed. this time with some diastat.
I have been giving him Klonipin every 4-6 hours..hoping
to stop the constant lip movement...

He is exhausted....he is sleeping a lot...but awake at night!
He has no energy...seems to be using it all in the face/mouth...
He looks miserable and this has to be painful!!!

Therapy Monday...he did get in the pool, but didn't want to do much.
We did call the Mayo Clinic after swimming...
he just isn't getting better....
As usual, most of Neurology department is at a conference....
AHHHHHH
So, finally a nurse called me today...and I am still waiting for her to call back!
She was going to talk with someone who didn't get to go....
She assured me, that he knew Hollister....
he did all of residency at the Clinic...

I am giving him the max on all of his drugs, extra food,
and have increased part of his cocktail...
hoping that something will help him...

This is the part of the disease that stinks....
There is never an answer....and hard to find anyone
who cares...

Team Tough is anxious for answers!!!

Thursday, April 29, 2010 8:12 AM CDT

Here it is almost the last day of April....

I am starting to have anxiety over May 1st...
I can't believe it has been four years since Hollister and
I sat at the table making May baskets out of construction
paper for all of the neighbors....I remember Dick coming home
at lunchtime teasing us, as we looked like a craft segment
right out of the Magic Window with Betty lou...(a local chlddren's
program that was on during my childhood...during lunchtime)
It wasn't a very good show...and the "Cartoon" wasn't a
cartoon at all...it was rats talking and going about thier lives...
Right down creepy...but she always did a craft..and boy could
she cut construction paper and use a glue stick!!!

Hollister and I made cute little woven baskets that year..
We had fun. We got candy at Walgreens and our finished
baskets were a joy to behold..hahahaha
It is a great memory...

As we all know things changed that day...and the next week
was tough at home...not to mention the entire summer spent
in the hospital...

May Day no longer brings a smile or baskets of popcorn and
left over Easter candy....

Hollister continues to be all over the place.
He did great in the pool on Monday...Was very happy and
walked and walked and walked. He was tall and ready to go!
He didn't do to bad Monday afternoon with OT and SPT.
He was very happy, laughing and somewhat cooperative!

Monday night and all day Tuesday he was sickly...Vomit was
the word of the day...I really think it was from missing a
couple doses of Claritin...he had a lot of phlemy drainage
that I believe gagged him...everytime he had a stomach full
of food(sludge)...
Yesterday that seemed better.
Therapy he again worked hard for PT...walked OK in the Arjo
walker..with lots of help...Thank you girls...
OT, he sat on the ball well, but wouldn't interact with
the therapist...and the same for SPT...he was very very
obstinate with her!

Lots of personality this week!

I don't always think his changes are for the worst...He is
very weak right know, but I really believe it is because he
hasn't felt good. Drug levels have been all over the place...
too much....lethargy and vomitting...
too little.....seizures...
He uses a lot of his energy just trying to get through the
day....not to mention showering, sitting, standing...and
laughing and yelling at me!

I like to imagine that when he has "brain "changes...
that possibly one of the many medications he is taking is
opening some new pathway in his brain/stroke...He takes
the L-Arginine just for that purpose...So, there is no
reason that good things can't be around the corner!!!

I would love for a good thing to happen on May 1st...
That would be AWESOME!! I keep reminding him that he needs
to keep working hard to come back to me/us!!! I tell him
multiple times a day that his MELAS is stable..he is not
sick...and he can do it all...eat, walk, talk, and most
importantly... go to college.....and move out!!!
Sometimes, his eyes are so expressive and he kind of laughs
with me...and other times...he is very weepy...and cries!
and everytime...my heart aches!

So as we head towards May, the anxiety builds....

Team Tough is together and very strong!!!!

Some see a hopeless end, while others see an endless hope.
~Author Unknown

Thursday, April 22, 2010 2:32 PM CDT

Earth Day....

Suburbia is where the developer bulldozes out the trees,
then names the streets after them.
~Bill Vaughn

I started this journal entry hours ago...
Truly days ago!

My thoughts are all over the place!
As is Hollister.

Of Course I jinxed him last week, when I said he had
been a week without a seizure...Too many to count this week!

He is still not himself. He is exhausting him and me at
the same time!

I wish I had a crystal ball to make him feel better...and
to let me know what I should be doing!

Therapy was tough yesterday also. He continued with his
not willing to cooperate mode. He appears very weak, but I
think some of it is that he just doesn't want to do it!

He has been impossible in bed at night. He is busy.
Laughing, screaming, kicking, sitting up, swimging his
arms...I think he uses all of his limited energy supply
during his rampades at night!
Tuesday, we got him up at 0430...hoping to break the
cycle!!

Finally after 6 weeks and 3 days...Hollister's shower
is usable again! He did get to use it; when we got home from therapy.
6 weeks is a long time to remember what a shower is and
what needs to be done. He did OK. He was definetly glad
to have lost the Grizzly Adams look.
He can grow quite a beard in a week.
Getting his teeth brushed was quite a challenge!
He was pretty happy last night...feeling clean is a wonderful feeling!!!
He was loving it!!!!
The new shower is awesome! Finally, I can get him in and
out by myself!!! Life is good!

Hollister was up early and looked pretty good..until about
11:30....He started the gagging and puking
and this went on until about 10 minutes ago
when he finally got to lay on on the couch...
He looks rough...pale, week,...
and it finally dawned on me....I bet his Dilantin level
is HIGH!!!!! Makes perfect sense....what went on here
this morning!

He is finally resting. He looks tough! but he is no longer
dry heaving and wretching! quiet sleep!!

Hopefully, before therapy tomorrow...we can take him to
finally get a dilantin level!!!!

I have been waiting for him to get to high...as I have given
a lot extra because of the seizures...
Not a fun game to play!

It is Earth day...Hopefully everyone has done something
to make a difference today!

My kids know I am a crazy recycler...I love recycle Monday....
I am the crazy mom hauling empty bottles home from ballgames...
Going through garbage bags or the trash can...looking for
missed "garbage" to recycle...
Between that and my pop tab obession...(for Ronald Mc Dondald house)
I could drive people crazy.
I like to think I am making a very small difference...
Don't get me started on light bulbs....
I wish I could do more, but I am very aware and so is my
family!!!

Hollister's journey continues. Hopefully he will rest now..
I will hold the Dilantin tonight..hoping this is enough but
not too much to cause a big seizure....

Team Tough continues to struggle in so many ways!

Team Tough continues to have and be hopeful!!!

After a visit to the beach,
it's hard to believe that we live in a material world.
~Pam Shaw

Thursday, April 15, 2010 9:54 AM CDT

TAX DAY!!!

Taxes: Of life's two certainties,
the only one for which you can get an automatic extension.
~Author Unknown

One of the days Hollister Farrell dreaded.
Which seems so silly, he never had to file a tax return.
But, he talked about taxes and worried about paying taxes!

He often reminded us that he did work for a couple weekends
at Porky's, washing dises. Luckily, they paid him in CASH
so he never had to pay any taxes on that money!
He also reminded us that he would have continued to work
but he got that stupid disease. It was better for him to
use his energy to go to school than work...
It was also at that time he told me he couldn't clean the
bathroom anymore, he shouldn't be around so many chemicals!!!

Hollister was always a thinker! He was worried when he turned
18, he would have to pay taxes...
He would be happy to know he is now 23 and has paid no taxes!!!
He is living the dream!!!
Which is interesting because Hollister is very much Republican
in his thought process. We have known this since he was very
very little. We often called him the moral majority in this
house. He is Texan, he is Republican, and he is my child!

Hillaree unlike Hollister has had to file a tax return and
has had to pay in the last two years. Just seems awful!
No, she doesn't make any money! She was considered a contract
worker at her old job and so they didn't pay in any taxes for her!
So she got to pay it all in!!!
Coach Morris at DCHS did her taxes and helped her find every
last cent she could deduct!!!! Thank you Coach!
What a painful lesson for a child!

I would love to know Hollister's take on Hillaree having
to pay in!!! He would have something very interesting and
philosophical to say...

Much like my own dad....when I got that first big detasseling
check. I had figured out exactly what it would be...It was
1977, $2.40 cents and hour...40 hours...X amount of overtime
hours at $3.60....Oh, I was gonna be rich!!!
Check came...and a lot of it was missing....I was very
upset...My Dad explained to me that some of that money was
going to Social Security, which was going to my Grandparents....
Well, I was OK with that..I guess!!
1988, I graduated from Nursing school...First paycheck with
real money...$10.40 an hour...$416 a week.. I was excited...
Again....very disappointed at how much was missing...
I immediately called my Dad and reminded him of the
detasseling money...and social security...Now they were
taking more and my Grampa...was dead...so I was paying more
for less people...That made no sense!!!

I am sure Hollister would have it all figured out by now!!!

I had a little set back getting our taxes done...Our guy
is very nice and extremely patient!! as I try and keep track
of every medical expense, mile, and pill!!! Can be overwhelming!!!
He looked at me and asked where my W-2 form was...
I had to explain, that I didn't work at all last year. I
was taking care of Hollister...He said, "I'll just type in
that you are a homemaker"...I of course said..."No, I am a
nurse..." for 22 years I might add!!!
"but, you have no W-2"..I almost started crying and it has
taken me well over a month to "Get Over it"!!!
I tried to make a joke of it...."Well, if you have been to our home...
you can tell I am no homemaker..."
I had to fight back tears...It was like, the last defining
piece of who I am is now gone....
I really loved my job in the Operating Room...and a small
piece of me died that night!

Not that being a homemaker would be bad...but that was NEVER
my desire...I don't really have any homemaking skills!!
I hate laundry, I don't dust, I hate the vacuum...The last
time I tried to use it it wounded my leg...I don't cook,
clean, garden, I have no craft abilities...
I don't drink coffee, grocery shop, and I certainly can't decorate...
I don't volunteer, run a carpool, make cookies or have time to go to a gym.....
Most of the time, I am just not that nice...Not even neighborly!!!
The only skills I HAD were nursing...and now the government
has labled me a homemaker....I guess I will need a new handbook
and job description!

Hollister looks pretty good this week. He was somewhat crabby
again at therapy yesterday. I want so badly for him to wake
up and be ready to work.
I hate so say it out loud, but he hasn't had a seizure for a week!!!

We have been enjoying the nice days. Hollister and I try
and get out each day. He is getting a nice spring tan!!!
Last night we took him to see Harrison play a spring baseball
game. It was nice to be out...Fresh air helps us all sleep.

Hollister is just starting to wake up. We are stuck in the
basement today, Dick went out of town and I can't get him
up stairs by myself!
Will be a relaxing day...maybe watch a coule of movies and
hang out!!! lucky for him the therapy ball is down there!!!

Can't wait to tell him it is TAX Day!!!

Team Tough is hopeful for all the good to come!!!

Did you ever notice that when you put the words
"The" and "IRS" together, it spells "THEIRS?"
~Author Unknown

Tuesday, April 12, 2010 11:40 PM CDT

Lots going on over the weekend...

Harrison went on the freshman re-treat, Metanoia at
the St. Thomas Moore Center. He made it back to school
safe and sound just in time for track. He was very
tired last night. It sounds like he had a very good time....
He told us lots of amusing stories from his journey, I finally
asked if it brought him any closer to God...OH,that was good too.....

My parents made it home from there short trip to Arizona.
It was great to see them. I am glad they got to go, if only
for a month. Mom finished her treatment and they left!
Mom looks much more rested. I am already nervous for the
Pet scan which probably won't be until the first part of June...
She had appointments at the end of the week for blood work!
Now, they are going to figure out what is going on with her
leg. Mom needs to get some of her mobility and independence back!!!
Dad looked a little tired. Could have been from the long
trip but I think it might be from being such a devoted
caretaker to Mom. This rough ole guy, is really just a big
softee!!! I wish I would have known that in my teens!!!
Hoping the weather cooperates so he can get his yard work
done and garden planted!!!

Sunday, we were all enjoying the sunshine sitting on the
front porch! couldn't have been nicer and more relaxed!
Hillaree was playing some basketball and rolled her ankle
on a crack in the driveway... She quietly took her shoe off
and said "Mom, I am hurt..." I started toward her and kind
of laughed...I looked at her ankle and knew it wasn't right!
I told Dick, he did the same thing, until he looked at her...
Wheelchairs are handy, we got her up and into the car...
Got her 800mg of Motrin...
I called my friend Julie because an OR nurse would never
go to the ER without knowing who is on call for Ortho!!!
Off we went. We couldn't have had a better ER experience
than we did. Right in, evaluated, x-rays, talked with the
trauma/ortho doctor....
Thank you God, it was only a horrific sprain!!!
She is in a boot with crutches..but no break!!!
Makes Graduation much easier!!!
Kudos to the nurses and Doctors at Mercy ER!! We were in
and out in no time!
Made it home in time for a burger and pie!!!

Hollister had therapy today. He was a little crabbier than
he should have been. Working is difficult when you are fussy!
He did enjoy his pool time. He wouldn't open his eyes. Not
sure what that was about!

When I look at him and look deep into his eyes... I know he
is still my sweet Hollister. I know that he wants to be
whole again. I know he is smart and has so much wisdom to
share. I will wait by his side for that opportunity.
We will continue to work hard and give him the best that we can.
I know he can make it back to us!

We are enjoying this warm weather and watching the plants
grow..It almost seems you can see them growing! The spring
flowers are so awesome...Actually had a tulip bloom on
Sunday...just for Mom and Dad...hahaha
Dick tilled the garden and got some potatoes planted...
Never planted them before. I did remind him he was late as
we all know potatoes go in the ground on Good Friday!

Spring is joyous!

Team Tough is working hard....and praying to God
for Hollister's brain to be whole!

Friday, April 9, 2010 8:27 AM CDT

The Sun is shining...Nice to see especially on a Friday!

Hillaree and Dick are up in Vermillion today. She is registering
for her classes in the fall. They went up last night. I wanted
so badly to go with her, BUT.......
I had to stay home with Hollister.

If I haven't said it for a while...I hate MELAS...and all
that it has done to our family!!!

Harrison was a big help to me gettting Hollister down stairs to his bed.
The stupid stair chair is too high and you have to lift Hollister...
and I can't do it....
So Harrison was very helpful. It wasn't pretty,
but we made it!
So, when Hollister wakes up, we will sit downstairs...
missing the sunshine...waiting for Harrison to get home...
hopefully Dick and Hillaree won't be too late.

Of Course Hollister had a seizure last night as soon as
we got downstairs....Again, Harrison was awesome...He is
turning into excellent help!

Not sure why the seizure???? He is still sleeping now,
hopefully, he will wake up in a good place!!!
He is making me think a little too much!!! haha

He did well at therapy on Monday and Wednesday. He was
very cooperative. He did well in the pool. He was even
on his best behavior with Sue(SPT). He let her put Peanut
butter in his mouth....I was very excited! So we tried
some mashed potatoes and pudding at home...He did OK, but
he is a long way from eating...just allowing us to put
small amounts on his tongue and lips is HUGE!!!
No therapy today...I have no way to get him there without
Dick or Hillaree.

I can't wait for Hillaree to get home. I am so excited to
hear about her classes. I am sure she will go by her dorm
to check it out. This is the second important day at USD
with Hillaree that I have missed....

But, life goes on....

Tonight is the MORP dance at DCHS...
MORP is is prom backwards, it is a senior dance for DCHS
students only. It is a costume party... When Hollister
was sick his freshman year, some of "the senior guys"
came to visit him...and he thought it sounded and looked
so fun!!! He so badly wanted to go, but he was very very
sick in the hospital that night and didn't get to go...
Hillaree isn't sure she wants to go.....

Again....MELAS SUCKS!!!

Team Tough is..........

Sunday, April 4, 2010 00:30 AM CDT

Happy Easter....
Hope the bunny is on his way..
Bringing lots of Easter Joy!!!

He has not been here...YET!

But, No one in this house is asleep in bed!
That is a problem for the Easter Bunny!!!

Dick and I just got home a short while ago from Easter Vigil.
On our way we almost ran over what appeared to be a rabbit
quite possilbly carrying a basket. Ran right out in front
of the car!!!

Thanks to Hillaree and Harrison for watching and taking
care of Hollister on Thursday, Friday, and Saturday night.
Making it possible for me to attend all of the masses and
services at Church!!!
We can all never be at the same place!!!
They did a great job with him and I know he is safe!!!

Friday night, after we got home from Good Friday service,
we watched the Passion of Christ. Hillaree and Harrison were
too small to see it when it came out. Hollister was still
in high school, so he saw it with his religion class.
They both thanked us for not letting them see it when they
were little!
It was as good as I remember. It was also as disturbing as
I remembered it.... Hollister seemed to be paying attention
until he had a big seizure!!!(wondering about the dilantin
level)
The movie gave us lots to think about!!
The brutality of it is overwhelming!!!
I for one am tortured over his Mother, Mary. I have prayed
to her for help on so many occasions, often begging her on
Hollister's behalf. To see her suffering as she watched her
child being tortured and put to death...is so painful!!!

I have seen that look in Mother's eyes at Blank, Mercy
and the Mayo Clinic. It is an unforgettable look!

The Easter Vigil tonight was the first time that Dick and I
had gone.
It was beautiful. It was over 2 1/2 hours just like we
were warned, but it was well worth it! We both enjoyed it.
The music and the rituals and ceremonies were awesome. I think
the people of St. Theresa's did a fantastic job. I was very
glad I went!

Hillaree and Harrison dyed easter eggs tonight with Hollister.
We have some very unusual eggs this year, but I am sure the
Easter Bunny will love them!!!! Most importantly, I think
they had fun...Most importantly, the mess was picked up....haha

Hillaree and Harrison have to get up early to got to Mass..
I guess 8:30 isn't that early....

As we head to bed visions of Chocolate bunnies and Easter
eggs fill our head...Dreaming dreams of jelly beans and
malted milk ball eggs....life is good!!

Team Tough is so happy that Jesus Christ is risen today!!!!!

What the Easter bunny taught me

ALL I EVER NEEDED TO KNOW ABOUT LIFE
I LEARNED FROM THE EASTER BUNNY

Don’t put all of your eggs in one basket.
Walk softly and carry a big carrot.
Everyone needs a friend who is all ears.
There’s no such thing as too much candy.
All work and no play can make you a basket case.
A cute little tail attracts a lot of attention.
Everyone is entitled to a bad hare day.
Let happy thoughts multiply like rabbits.
Some body parts should be floppy.
Keep your paws off other people’s jellybeans.
Good things come in small sugar-coated packages.
The grass is always greener in someone else’s basket.
An Easter bonnet can tame even the wildest hare.
To show your true colors – you have to come out of your shell.
The best things in life are still sweet and gooey.

Author Unknown

Tuesday, March 30, 2010 8:41 AM CDT

It seems that March is heading out like a lamb.
We are enjoying a few nice days! Nice to take Hollister
out without a big coat. Lot less work!
Loving the green grass and always makes me happy to see some
of my plants coming up!!! I love to hear the birds singing
early in the moring!!! It is all good and some how makes the
awfullness of winter disappear!

Oh yeah!!! I LOVE SPRING!!! This truly is the best time of
the year!

Hillaree reminds me everyday how many days of high school
she has left! She is breaking my heart! It seems the knife
digs a little deaper each day!!! "Your Killing me Smalls"!

I fear Hollister knows this is Holy week and Easter is looming!!!
Reminding myself just how much he likes to be sick during
a Holiday.
He actually had his second stroke on Holy Thursday 8 years
ago...Just the thought makes my heart beat a little faster!!!!

Hollister is all over the place. I have no idea what is
going on. Last week he had an appointment with his regular
Doctor here in Des Moines. This was his second time to see
his grown up Doctor....and of course he is leaving for
Stanford this summer to do another Fellowship.....

So, at the appointment at 8am...Hollister looked good.
But, I was wondering about that D--n Dilantin level.
The Saturday before the appointment, Dick had gone to get
the kids from the Amtrac in Osceola(Which is an hour from
here)....and of course Hollister had a big ole seizure!
It was big and weird!

I asked the Doctor if we could check a Dilantin level....
I thought it would be perfect time, he hadn't had his
morning dose yet...so after 8 sticks and it was now 9:45,
we left...to head to swimming at 10. Our Plan was to head back
to get the blood after swimming. My orginal plan was to
get blood, give the seizure meds and then go swimming...
Instead we went straight into the pool!!!

He did great. He was awake, happy, and walked with his
PT(Esmie) all over the pool! He did great. He loved it....
We got him on the shower chair turned the water on...and
SEIZURE!!! just like saturday night...Now I was really mad
we hadn't got the blood earlier.. I gave him his seizure meds and
quickly finished the shower and brought him home...

He slept for Hours. I decided his dilantin level must be
low, I gave an extra big dose of dilantin when we got
home...and then decided to up if for the week. No more
seizures, but his behavior is something.

It seemed Tuesday night he decided he didn't need sleep..
Which makes no sense with the increased doses of dilantin!!!

He has been all over the place laughing, talking, bouncing
in his chair..and not sleeping....He catches up about 5 hours
at a time..
I wish I knew what was going on!!! That is one of the worst
part of the illness...there is no one who knows...I only
have my own knowledge of Hollister and MELAS to go on....
One resource/support person would be a gift....
Instead Hollister and I sit here daily and play the what
is going on with Hollister game and what can I do?????
Even when I call his Doctors, they always ask me what I
think and what should be done.....

Therapy has been a hit and a miss...but last Thursday night
Hillaree and I did finally get to take Hollister out to
Child Serve to swim. We had a blast!! He loved it and was
so relaxed. Hillaree did a fantastic job with him. She
basically pushed me aside and told me he was safe with her,
she is a life gaurd...She was so good with him.
(We also thought he would be so tired he would sleep all night....)
HAHAHAHAHAHA

Today he is up, sitting in the chair laughing as I talk about
cooking like Martha Stewart... Even he knows a good joke,
when he hears it...

Hoping to get him on the Patio later today...
Soak up some Vitamin D!!!

I want to say Happy Easter to Mrs. Johnson's class up in
Jackson, Minnesota. Those kids have been faithful to
Hollister for years. I appreciate Mrs. Johnson encouraging
them to follow Hollister.
We all love their notes to Hollister.
They make us smile!!! Thank you Thank you!!!!!

Team Tough is looking forward to Easter!!!

Wednesday, March 17, 2010 5:09 PM CDT

Happy St. Patrick's day!!!
Wearing of the green!!

Hollister woke me up at 5am seizing...
Which is why I sleep with him! I was having a very weird
dream...and the noise and movements just seemed to fit
right into my thoughts...until of course I woke up!
He was seizing and trying to throw up....
I called Dick on his Cell Phone...Hollister and I sleep in
the basement...and he came down, so I could try and figure
out what medications I could give him!!!
What a tortorous way to wake up!!!

He slept hard until about 10am and he woke up happy and
very smiley!

He did make it to therapy today. He did ok. He was somewhat
tired and quiet. Nice change that he wasn't yelling at
everyone!

No big St. Patricks day for Hollister. He always loved
the wearing of the green!

Hillaree and Harrison are enjoying there Spring Break out
in Washington D.C. The rode the amtrac out there last Friday.
They both deserve a break. Vacations are few are far between here.
Not as excting as Mexico and Florida like most of the DCHS
kids...but they did get a little break from the stress in
this house!

Can't have a St.Patrick's day with out thinking of
Grandpa Ed. He loved his heritage in a very big way!!!
If you were in Algona for St.Patrick's day 1991(I think)
then you would remember Hollister driving his little red
car in the parade after his Papa in the golf cart....
Was a big day for all!!!! Hollister was very proud!!!

Team Tough Loves St. Patrick's Day!!!!1

May your blessings outnumber the shamrocks that grow,
And may trouble avoid you wherever you go.
~Irish Blessing

Tuesday, March 9, 2010 0030 AM CST

Happy Birthday to Hollister!
23 years old today....

------------------------------------------------------------------------------
This is a note from the last Birthday
Hollister celebrated with us. It seems
my insight from that day....is overwhelming!!
I am so grateful that God let me enjoy
every moment with him!!!
I miss him so much, especially today!
I thank God that he is still with me!!!
------------------------------------------------------------------------------

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 Patrick Farrell!

Monday, March 1, 2010 9:10 AM CST

Finally, March has arrived!!!
Lamb or lion is hard to know with all of this snow....
The sun is shining!!!!

Good things in March...
Hollister's Birthday......
St. Patrick's Day......
SPRING!!!!!!!!!

February went out like a........

My Mom was admitted to the hospital last Thursday.
Her last three radiation treatments were postponed last
week, as her WBC's were gone...happens in Cancer patients
on Chemo....by Thursday, it was time to be admitted!!!
She is still there...hoping her counts are high enough this
morning to start those last 3 radiation treatments...
She has been a trooper!
I had a small breakdown, knowing that I can't be there!!!
Did I mention how much it all sucks!!!!

My sister Judy, admitted her Mother- in- law to the hospital
yesterday. She is very sick, cancer also...and not doing
well...My heart is with her and Tom and their girls....
Tom's Mom, Addie, has been one of Hollister's constant
prayer warriors...and I remined Judy to whisper in her
ear that Hollister still needs those prayers....

Hollister's seizures seemed to be doing better. He even
made it to therapy 3 days last week...and worked very hard.
He seemed extra crabby, but he worked hard.
I think he is also has cabin fever. We havn't taken him anywhere.
He is in desperate need of a haircut, but not in a big hurry
to take him.
He doesn't have much of an immune system, and where there
are people there are germs.....so, poor guy....Stays home!!!

Yesterday,
Harrison and Dick had gone to baseball. Hollister was on the
commode, Hillaree and I were looking at prom dresses on the
computer....
Hollister started seizing....as usual he was on the commode!
Hillaree kept him safe and I got his meds and
gave them...he seized again immediately...so I gave him
more dilantin and klonipin....and he seized again.....
so I gave him the 20 of Diastat...We moved him to the couch.....
and he seized again and again...I was about to give him 10mg
of Versed......
This all happened in about 20 minutes....so the nurse in the
me decided against it and called 911......
Of course squad 9 was out on a call, so squad 5 came...
not as close, but equally as awesome!!!
When they came Hollister was quiet. Looked restful....
so we debated on taking him or not...Of course I had convinced
them that he was OK....
and....
He seized again...and started the vomiting....
They picked him up and we went!

He vomited the entire way to the hospital. Thank you
paramedics for keeping his airway and lungs safe!!!!!

Of course the ER Doctor had never heard of MELAS....
and looked at me like I was speaking german....
(this was before noon....later he was cheering for Canada
in the Hockey game....that hurt!!!)
I think he did a good job, he called the local pediatric
neurologist and the Mayo Clinic....

Finally got an IV in his foot after multiply sticks....and
I begged to leave it in and bring home, so I am still running
fluid today....

His blood draw was a little tougher....even after a fail
arterial stick....The Doctor came in and did a Femoral
stick in his groin....Hillaree said later she almost fainted.
That was tough.....Hollister didn't like it much either!!!

His dilantin level came back very very low, 6.3!
Two weeks ago it was over 18....
Something isn't right...
He did get an IV bolus of dilantin....so hopefully that
will help.

When the doctor asked what I wanted to do....I of course
said "we want to come home!!!" There are way too many sick
people in a hospital for Hollister. He slept and slept...
and now he is screaming mad about the IV in his foot....
Very loud and crabby!!!

He looks pretty good today but he looked good yesterday
morning before he started seizing...

Labs were faxed to the Mayo Clinic...waiting to hear!
Hollister missed swimming this morning and will miss
therapy this afternoon!!!

I am glad February is over!!!

March is a whole new month of opportunity!
and the re-birth of spring!!!

Team Tough is tired, but we are hopeful!!!!

When I stand before God at the end of my life,
I would hope that I would not have a single bit of talent left,
and could say, "I used everything you gave me."
~Erma Bombeck

Monday, February 15, 2010 10:07 PM CST

HAPPY BIRTHDAY TO DICK!!!!
or as Harrison once called him....
"Dick Richard Allan Farrell"
Happy Birthday to you....

Not that he had a very great birthday...

First work...
Then came home at lunch time and moved snow....
Then he got to clean the kitchen and make supper...
A delicious supper it was!!!

Oh yeah...I spent my day with Hollister.. He had another
seizure and Hollister didn't go to therapy...
Giving Dick time to move snow and work in the kitchen all
afternoon. Three afternoons and 1 morning each week,
Dick has to be available to take us to therapy.
Plus, he is Harrison's Taxi to and from all of his activities....
Sometimes, it makes it even more difficult for Dick to make a living!
If I don't say it or write it enough,
Thank you Dick Richard Allan Farrell!!
A weaker man would have left this mess!

Happy Happy Birthday!!!
You are loved and underappreciated!!!

Hollister's seizures are now happening ALL THE TIME!!!
Friday we took him to get some blood work. Thank you
for letting calling in the Peds Trasport(life flight for
the kids)after one stick!! Hollister is an impossible stick!!!
Peds Transport nurses...we love them, not only because they
have flown Hollister to Rochester...multiple times, but
because they love him...and treat him like he is a king!
He has outgrown Blank...but the Peds Transport girls always
come to see Hollister!!! He was so animated Friday with
Jamee, he seemed to be laughing with her and interacting
with her very appropriately...
We both thought he seemed happy to be at Blank, he seemed
to know where he was... Was good to get out even for a
blood draw!!!

Had the blood work sent up to the Neurologist at the Mayo
Clinic...I hate to call...but it has been over a year so
I thought I could!!!(that is me being stubborn, I think
they wish I would call more oftern)
They are so nice! I love that I always get to talk to the
Doctor...He is always willing to call me back!
He respects my judgement call for Hollister...and
listens to what I think is going on. He always wants
to know how I have assessed the situation...He knows that
I eliminate all the variables that I can first...and then
I call...
(or he thinks I am crazy and is afraid of me...hahahaha)

He decided to up the seizure med that is the most benign.
We will try that for 2 weeks and see where that gets him!

He looks good today...up early...and ready to go!
He is bright eyed with lots to yell about!!!
Could be the sun coming in the windows..
Might not know what it is...hahah

Happy Birthday to Dick....

Team Tough is hanging strong...

A story of love...

A farmer had some puppies he needed to sell.
He painted a sign advertising the 4 pups and
set about nailing it to a post on the edge of
his yard. As he was driving the last nail into the
post, he felt a tug on his overalls. He looked
down into the eyes of little boy.

"Mister," he said, "I want to buy one of your
puppies."

"Well," said the farmer, as he rubbed the sweat
off the back of his neck, "These puppies come
from fine parents and cost a good deal of money."

The boy dropped his head for a moment. Then
reaching deep into his pocket, he pulled out a
handful of change and held it up to the farmer.

"I've got thirty-nine cents. Is that enough to take
a look?"

"Sure," said the farmer. And with that he let out
a whistle.. "Here, Dolly!" he called.

Out from the doghouse and down the ramp ran
Dolly followed by four little balls of fur.

The little boy pressed his face against the chain
link fence. His eyes danced with delight. As the
dogs made their way to the fence, the little boy
noticed something else stirring inside the doghouse.

Slowly another little ball appeared, this one noticeably
smaller. Down the ramp it slid. Then in a somewhat
awkward manner, the little pup began hobbling toward
the others, doing its best to catch up...

"I want that one," the little boy said, pointing to the
runt. The farmer knelt down at the boy's side and said,
"Son, you don't want that puppy. He will never be able
to run and play with you like these other dogs would."

With that the little boy stepped back from the fence,
reached down, and began rolling up one leg of his
trousers. In doing so he revealed a steel brace
running down both sides of his leg attaching itself
to a specially made
shoe.

Looking back up at the farmer, he said, "You see sir,
I don't run too well myself, and he will need someone
who understands."

With tears in his eyes, the farmer reached down and
picked up the little pup.

Holding it carefully he handed it to the little boy.

"How much?" asked the little boy. "No charge,"
answered the farmer, "There's no charge for love.."

Team Tough is very very grateful....
"THERE'S NO CHARGE FOR LOVE...."

Tuesday, February 9, 2010 10:20 AM CST

Apparently, "Old Man Winter" is not going away any time
soon!
He likes to act up on Hollister's therapy days...
Makes it all the more difficult getting him in and out of
the car!!!
A couple of weeks ago when we had all that ice. He ended
up in the middle of the street in his wheelchair. It was
funny, only because he didn't tip over and hit his head!!!
The look on his and Dick's face were priceless...

If a person could go back in time...there are some obvious
things I would want to change....but I would certainly go
back almost 15 years ago...and buy a different house! We
bought this house because...we like the neighborhood, and
my Grandmother's dining room set fit, and there was a room
for all of the kids...Never thought about the one bathroom
upstairs, Hollisters room in the basement...and the small
garage that doesn't enter the house....
Certainly never thought how long we would live here....
or Handicapp accessibility...Why would I think I needed to
worry about that at 30????
We knew we loved this cute little capecode and the Beaverdale...

Winter just makes everything more difficult...
Spring will eventually come! I hope!!!

On Monday's Hollister when he has swimming has to go out
of the house twice...Seems to be yucky every Monday!!!

He did have swimming on his schedule again..That makes
me very very happy. He loves it. It is a lot of work for
45minutes in the water...but worth it....It takes us 45
minutes to get showered and dressed after...and he is tired.
He has time for a nap and a little lunch before therapy
in the afternoon....

He did well in the pool. He relaxed and floated with his
PT...and then he walked and walked all over the pool...
I swear he tried to drown me...haha
I did put his face in the water a couple of times, he didn't
really love it...but I think he will get the hang of it.

In OT he played Wii bowling again. He did better.
Speech therapy was a big fat nothing again...He is totally
ignoring Sue. She is awesome and said that she thinks it is
because he knows this is hard. She said it is very hard
work waking up his brain, he is aware enough that he knows
what we are asking him to do is so simple and he can't do it.
She has her work cut out for her. She also reminded me
again he is in there...and wants to get out!

Not sure what is going on with him. He is not sleeping as
well as he should. Last Thursday, he was up all night.
He finally fell a sleep around 11am...then he slept most
of the day.
No therapy on Friday.....

I was starting to wonder if he is being overserved with his
seizure medications.....

Early evening, we were sitting with him. He looked good.
and he flopped over in his chair...Grand Mal seizure...
They are getting bigger and lasting longer...
Not sure where or why....Starting to iritate me!

He got his medications and slept all night....again....
What is going on???

He is up now, I am sure he had a big fat headache this
morning...he kept pounding his head. 800 of motrin is
40 ml of the kids liquid motrin...seems like a lot of
mixed berry syrup on a stomach with a headache.....
but he has kept it down!!!
He is listening to the "Rice is pright"...
Would love to know what he is thinking!!!

Hoping the seizures are done!!!

Not much on the agenda today....

Keep my mom in your thoughts as she continues her fight
against this stupid cancer. She his having lots of fatigue
and some blood work issuses....

Team Tough continues to need all of you!!!

A boil is no big deal. On someone else's neck.
~Jewish Saying

Tuesday, February 2, 2010 12:45 AM CST

Punxsutawney Phil....
saw his shawdow this morning!
This is not news to those of us in the Iowa.
We all wish we only had six more weeks of winter.

Hollister only made it to therapy one day last week.
Seems, when I feel like life can't suck anymore...
He reminds....
Wednesday moring Hillaree was at home after an appointment,
she was helping me get him up before she left. We had just
moved him to a chair....
He had a huge grand mal seizure. I was thankful she was home
so I could get the medications I needed while she watched
him and protected his airway and head. She is awesome, she
knows what to do without being told!
Finally stopped and then he slept and slept...12 hours straight.
I sat in the dark next to him...way to much time to think!

Sleeping for 12 hours made me realize that he was probably
seizing on Tueday night, looking back, he was having some
goofy eye movements, and staring off...absense and
probably petit mal seizures....and then WHY??? Where did they come from???

Thursday he was tired also. We did take him out Thursday
night to the wrestling meet, he did ok.
He did finally make it to therapy on Friday. He worked hard
for PT and of course did nothing for speech!!!

We did make it to therapy on Monday; he got to play Wii
bowling. I wish I could say he liked it more. He does seem
more excited when we play with him at home.
Speech again was dropping his head and shutting his eyes...
This is very difficult for me!

He looks good today. Eyes are bright...and he is strong!!!!

Hillaree made it to Washington D.C. and back. She went all
four years to the march for life rally. I am very proud of
her. She also had to talk at Mass on Sunday about DCHS for
Catholic Schools week. Kind of ironic, that Hillaree had
to do this. I reminded her it wouldn't be good to lie at
church...haha. Her experiences at DCHS have been less than
good. I feel so bad for her. It wasn't her choice to go to
DCHS, she went there for Hollister. He got so sick during
her 8th grade graduation. She had made the decision to go
to the public school....she changed her mind to go to DCHS
to honor Hollister......and it has been tough. For her
graduation can't come soon enough. She said she will never
look back, no one in her class will think of or remember her......

If only if only....She could see her as I see her.
If only if only....others could see her as I see her....

In the end, Hillaree did a fantastic job at church, she
made me a believer out of me.
I am very proud of her 300 service hours...
She has made her mark, wether she believes it or not!!!

Team Tough continues to believe!!!

Mr.Punxsutawney..........

This is from the 1993 movie
Groundhog's day....Sometimes, Hollister and I feel like
we live that movie!!!Not much changes for us day to day!!!!
Maybe when we get it right, life will move forward!

Phil: "There is no way that this winter is *ever* going to end
as long as this groundhog keeps seeing his shadow.
I don't see any other way out. He's got to be stopped.
And I have to stop him."

Monday, January 25, 2010 12:59 AM CST

SNOW!!!!
At least the new snow is making the old snow look clean
and white!!!

Kids are getting our of school early...
No wrestling meet tonight, practice goes one!!!
Hopefully Harrison will be able to eat supper tonight...

No therapy for Hollister today... When the law enforcement
folks say stay off the roads, no need to take Hollister to
therapy. Probably just as well he is very CRABBY!!!
His latest torture for him and me is screaming and yelling
at the top of lungs...for hours on end...
I know it will end soon for me as I am almost deaf!

We are also being tortured by the weather...Enough already!
The short warm up and rain did us no favors...The roof
leaking all over the back porch, where Hollister and I
are sleeping so he can be upright on the couch...since he
has had a cold....for this gigantic mess..THANK YOU!!!!

To the company/people who replaced this roof, I can't
imagine a torture rough enough for you!!!!!!
Speaking of torture, the constuction folks who are responsible
for Hollister's "handicapp" bathroom falling apart....
What is wrong with all of you!!!

Men are not punished for their sins, but by them.
~Elbert Hubbard

If only we all could remember Hollister. His life is
difficult already. If even the smallest thing can bring
him some happiness, then that is the goal. The outcomes
should reflect this!!!!!

We in this house have all made great sacrifices for the
benefit of Hollister and our family. We have done so
without complaining and graditude for what we have.
I can't imagine not having Hollister with us, broken and
not perfect..we will continue to cherish every single smile,
laugh, yell, and all of the anguish that is his life!
We thank God everyday, no matter how difficult it all seems!

Hollister did do some amazing things at therapy.
He walked with the arjo walker...it was a lot of work for
the therapists..but he did it.
He stretched on the ball and the wedge and he bowled in OT
on the Wii. He almost broke 100 with his right and left arms...
Speech, he is just not cooperating....Sue is a trooper and
continues to push..(I p.u.s.h. right along...pray until
something happens...)!!!!

2010 is off to a rough start!!! Too many things going wrong
to mention!
Hoping as January ends and February starts only good things!!!

Team Tough is TOUGH!!!!

Somedays you eat the bear....
and somedays the bear eats you!!!!

Thursday, January 14, 2010 10:14 AM CST

The sun is shining again today...
Might start to get used to this...
took Hollister to therapy with only sweatshirt on...
Makes my life so much easier!

Hollister's is slowly on the mend. He was up most of the
night coughing...Hard for any of us but for him it is torture!
He doesn't have the ability to just spit it all out!
Goes on and on! Sleeping on the couch almost sitting up!
He is finally resting comfortably.
He is still very short of calories and fluids...
Makes it hard, his energy levels are very low!

He did make it to swimming on Monday morning. He likes
to go to the pool! It would be nice to have that option
available to us at other times, when we could take him.
The water is amazing for him. He relaxes his whole body,
his tone in his muscles decreases...and he is able to walk.
He still has the reciprical ability in his brain. This is
a very GOOD thing! Would be awesome to swim often!

He also made it to therapy Monday and Wednesday afternoons.
He did ok.. Nothing spectacular, but we were there. I get
the most anxioius during speech. His new therapist is
awesome and she is trying to do all different things...
She is very very patient!
We will see what happens tomorrow!

Good news, my sister Judy is finally done with her
radiation for her breast cancer. Yahoo!!!!
Has her first check in three months!!!

Hillaree and Harrison are suffering through their first
full week of school since before Christmas. Everyone seems
tired. Lots going on!!!

Team Tough is loving the sunshine!!!

Enjoy when you can, and endure when you must.
~Johann Wolfgang von Goethe

Tuesday, January 12, 2010 7:31 PM CST

When I read this poem, my heart ached...
Hollister does not have cancer but we have lived
this for the last 8 years....

Unfortunately, we have known far too many sweet innocent
children who have cancer! It has been so sad to know how many have died!!!
My life is forever changed because these children!!!

HOPE...
I hope you never have to hear the words,
"Your child has cancer."

I hope you never have to hear,
"The prognosis is not good."

I hope you never have to prepare to undergo radiation or chemotherapy,
have a port surgically inserted into their chest, be connected to IV poles.

Look at you with fear in their eyes and say,
"Don't worry Mommy, everything will be okay."

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the "cure" you pray for slowly take away their identity,
as they lose their hair, become skeletal, swell up from steroids, develop severe acne,
become barely or unable to walk or move, and look at you with hope in their eyes and say,
"It's going to be okay, Mommy"

I hope that you never have to stay in the hospital for weeks,
months, or years at a time, where there is no privacy, sleeping on a slab,
with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled in a dark hospital corridor...
crying quietly, after just being told, "There is nothing more we can do."

I hope you never have to watch a family wander aimlessly minutes
after their child's body has been removed.

I hope you never have to use every bit of energy you have left,
with all of this going on around you to remain positive, and the feelings of guilt,
sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid)
in a wheelchair because the chemo and radiation has damaged their muscles,
35 pounds lighter, pale, bald and scarred.

And they look at you with faith in their eyes and say,
"It's going to be okay, Mommy."

I hope you never have to face the few friends that have stuck beside you and hear them say,
"Thank God that is over with,"...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's
and you try to get your life back to "normal".

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...

"The cancer has returned" or "The tumor is growing"

And your friends become even fewer.

I hope you never have to experience any of these things...
Because...
only then..
Will you understand.....

Author: Carol Baan

Thursday, January 7, 2010 9:32 AM CST

SNOW DAY!!!!!
For me, the only good thing that comes from another "thump"
for old man winter...is that Hillaree and Harrison are
home...and the house is alive! Tomorrow is a teacher workday,
so the kids now have a 4 day weekend!
Hollister would have something to say about that!

Not a bad start to the first week of school for this year!

Hollister has had an very difficult week. Last Saturday night,
he started showing some signs of having cold. Dick, Hillaree,
and Harrison had terrible colds between Christmas and New Years...
and now, Hollister.

Unfortunately, for Hollister it is much more difficult.
He has had a hard time keeping anything down, because of
the cold. I knew a seizure was looming! When he is sick
his seizure threshold is always low and then add in that
he didn't keep his siezure meds down....

So, Monday morning bright and early.....after Dick and the kids had left.
He was up and I had gone into the kitchen,
I noticed him moving...Seizure! Grand Mal...I was
very grateful he didn't fall off the chair. Some how I was
able to get him to the couch...again..thank God!! normally,
I can't dead lift 150 pounds...but I did on Monday!
He seized and seized..I gave all the medications I could
give and he slowly started to come around. But, you never
get used to the no breathing and the agonal breathing after.

So, the week was off and running. I have been playing catch up
with his medications, calories, and fluid intake.
It has been very challenging but we are still home!

No therapy this week and I can tell he is very very weak!

My Mom finally has some answers...It has been a very long
8 weeks. She will start radiation and chemotherapy on
Monday. The good news is the MRI of the brain is clean and
the spot on her chest was not cancer...but the node by
her throid is where the cancer is...Please keep her in your
thoughts...and my Dad also! They have to drive to Mason City
everyday for treatment...weather needs to cooperate!
Oh Yeah..CANCER SUCKS!!!!

It has been a long week here. I am ready for it to be over!

Team Tough is hopeful!!!

To shorten winter, borrow some money due in spring.
~W.J. Vogel

Friday, January 1, 2010 0:21 AM CST

Happy New Year!!!!!!
2010..Who would have thought!!

My Mom and Dad did finally make it down for Christmas/New Years....
We did actually see the ball drop in New York...
Hillaree, Hollister, and I watched it again live for us in
the central time zone!!
Was a pretty quiet New Years Eve...Harrison ditched us to
go to a party with his friends...and it was so cold I couldn't
talk anyone into going out and running around the house banging
the pots and pans...good thing they did it when they
were little, besides...new neighbors.....

2009 is over, another year has passed...
Not only a year but a decade...
It has been a very long hard 10 years for us!
For us, Hollister has been sick most of the last decade!
It is geting very hard to celebrate holidays and pass
milestones...These are the days that the "What ifs???"
get to be too much! Traditions are just not the same
without Hollister participating!
We keep looking and trying new things...

Looking back, I do have so much to be thankful for...
My sister Judy is finally on her way to recovery. Her
infection/abscess is getting better. Her radiation is
going well. Hoping her 2010 is healthy!!
My Mom is still waiting...she has been amazingly patient.
After 8 long weeks, she will know what is coming next Monday!
Dick, is still employed at Metlife. Yahoo... He did have
the, "We have used a lot of insurance talk...do I need to
look for a new job,"...talk with his boss
and he reassured Dick that has nothing to do with his job!! ...
Wow, what a nice change for Dick...
after his very poor experience with Sysco foods and PFG...
I would be never buy a thing from either company!!!
Hillaree and Harrison are healthy....That is all I need!
Hollister has been blessed this year his disease is
stable...and he is getting more therapy!!! Prayers are
answered every day!

Team Tough is thankful!!
Much has been done for us in the last 10 years!
Each and every journal entry is a joy for us to read.
We have loved all the meals, yardwork, and thoughtful
treats brought.
If you have sat with us, shared a meal with us, done work
for us, or prayed with us; we have felt your presence and
we are grateful!

Team Tough survives because of you!

The beauty of a New Year is once again lives can be filled
with hopes and dreams...a fresh start!

Gratitude unlocks the fullness of life.
It turns what we have into enough, and more.
It turns denial into acceptance, chaos into order, confusion into clarity…
Gratitude makes sense of our past,
brings peace for today,
and creates a vision for tomorrow.
~Melody Beattie

Happy New Year!!!

Friday, December 25, 2009 1:49 AM CST

Merry Christmas!!!

Not a creature is stirring not even a mouse...
Well, I guess I am still up.

House is quiet, waiting for Santa.

Sitting here after Midnight Mass (at 11:00) with lots
going on in my head....
Sometimes, you can't shut the thougths off!!!

Because of the weather, it made it impossible for my Mom and
Dad to make their way here. I was very disappointed, even
sad. I miss having them here and I will miss them in the
morning eating Monkey bread, opening presents, and my
Dad throwing wrapping paper at Hillaree and Harrison....

But, Most of all I miss Hollister. I know he is still here....
But, I miss his words, and his touch, and his sense of
humor, and how he chewed his food. What he liked to eat,
wear, watch....everything about him.

I pray Hollister could be my Christmas miracle.....
I do know that he already is an amazing miracle and a gift
from God...but it is Christmas...I felt I should ask for more!!!!

Thank you to everyone who did so much to help us have
a wonderful Christmas. We recieved so many wonderful
cards and we cherish each and every one. Our Christmas
is blessed by the kindness and generosity from friends
and neighbors....Thank you for all you do for us!!
To our annoymous friends...you amazed and thrilled us....
once again...Thank you, thank you!!!

We have learned in the last 8 years, that Christmas can
be anytime...any place.
Gifts no gifts....big meal....no big meal...What matters
is being with people you cherish and remembering what
it truly is all about....Jesus is the reason!!!

It was snowing when we left Mass tonight, makes the world
seems right...

I am sure Santa is waiting for me to get to bed and take
crabbly old Hooch dog with me....

I hope that you all have a Merry Christmas...
Enjoy all the people in your lives that love you!!!

Team Tough is Merry!!!!

Merry Christmas to all,
and to all a good night!!!

Tuesday, December 15, 2009 11:26 PM CST

The 15th of December..
Seems the calender is playing tricks on me!

Today was the Candlelighting at DCHS. This is one of those
joyous activities..that can take me through a wonder of
emotions!

Eight years ago, Hollister had returned from Rochester from
his first stroke...and diagnosis...as broken and devestated
as we felt....We took him back to DCHS for the first time
for a little program called Candlelighting..I don't think
I was prepared for the emotions and filled me.
I will never forget when Dr. Deegan annouced that Hollister
was in the gym with the rest of the student body, there was
applause and cheering! That was a beautiful program and
to see the outpouring of love from the students afterwards,
so many of those senior football boys came up to Hollister...
There little man was back!!! Father Kirby took an awesome
picture of Hollister and Ben Carpenter..That picture sits
on Hollister's shelf and I look at it daily..

Then,, when it was Hollister's turn to be a senior involved with
Christmas baskets, he was intubated at St.Mary's in Rochester..
There was no Candlelighting for us that year...and again
I remember weeping for what wasn't to be!

Now eight years later, we sat in the same spot in the gym..
Hillaree is a Senior, she loved helping with Christmas
baskets and did a great job leading her team..I felt so
proud, knowing that 116 families(500people) will enjoy
Christmas because of how Hillaree and her kind spirit helped her class!
When she walked in the door from delivering thier Christmas
Basket, including a tree and trimings, groceries and many
many gifts...she looked like she had won the lottery. She
was so filled with what I believe was the Holy Spirit that
she was glowing!!! May we all be so lucky!

It was also a very special Candlelighting for Harrison.
He is the Freshman class president, so he was responsible
for reading the Freshman prayer. He did a fantastic job.
He loved that he got to "tell" the sophomores to sit down!

I couldn't help but think of Dick's Dad yesterday...It has
been 15 years that he died. It is amazing to me that sitting
in the dark, lighted by the glow of candles that so many
emotions can fill your heart....
It was as usual, beautiful. I love the music and the Christmas
Carols...DCHS has some amazing talent!!!

We are all home safe and sound! Hollister has had some
amasing opportunites this fall. Prayers have been answered!
He is getting more therapy!!!
It was very hard for us to leave Karen at Blank, she has
stayed with us for the entire 8(long) years. We have been
told many good things and I know, if Karen hadn't continued
to stretch and move him...Hollister's goals would be limited!
Thank you Karen...we will miss you!!Drill Sargent Torture!

Hollister will now be having Therapy at Mercy Riverside...
He will have OT, PT, and SP three times a week. He will get
to do his PT at the pool on Mondays...How awesome is that!
We have 6 weeks scheduled, so we need to continue to pray
that the goals are small enough that Hollister can achieve
them, so we can continue!!!

Christmas is coming...I am totally unprepared this year.
Seems time has gotten away. Hollister is keeping us on our
toes. He is more interactive and needs much more postive
stimulation...We have all learned so much!!!

Now, 10 days until Christmas...I haven't shopped, got a tree,
or baked a thing...When I realize Christmas will be here
in 10 days...AHHHHHH
Good thing, stores are open LATE!!!
It is what it is!!

therapy first!

My Mom is still in limbo...Her brain MRI was clean...
Thank you God!!! She will have a biopsy of the node by
her lung on the 23rd....She is being so brave, but I know
she needs lots of thoughts and prayers!!!!

Finals started today...We will all breathe easier Friday
at lunch time!!!

Team Tough is Joyous!

"We elves try to stick to the four main food groups:
candy, candy canes, candy corns and syrup."
Buddy the Elf

Wednesday, December 2, 2009 11:25 AM CST

Where to start....

Hard to believe, December is here!
First week of Advent is going fast.
Kids are busy with Christmas Baskets at school.
Many many families will be helped through all of the hard
work of these students and teachers. It is so amazing!
If any finds themsleves feeling very generous or lucky this
advent season, there are many ways to help with Christmas
baskets...and it is not too late!!!! Contact the school or
any senior!

My sister Judy has started her radiation. First visit was
tough, but the second on yesterday was easier. She goes
everyday and will have 30+ treatments...seems to change daily!

My Mom continues to need good thoughts and prayers.
She has to have an MRI and another biopsy. Then they make
you wait another week to find anything out. Oh yeah and we
all know, I have no patience!
I started praying for patience the minute Hollister was born...
STILL WAITING!!!
Did I mention I hate Cancer! Cancer SUCKS!!!

Hollister had his appointments at the Mayo Clinic yesterday.
I thought the appointments were next week, so we were
unprepared for the day to start at 8am. Normally we go for
2 days and stay over night...
We got up at 3am yesterday and left by 4 so we could be
there for an 8am EKG.....or so I thought...
We have been going to the Mayo Clinic for 8 years, we know
where most of the appointments are.
EKG are on the first floor of the Gonda building....
His appointment was on the 6th floor South in the Gonda
Building. I was puzzled....Went into the exam room and they
are set up for an Echocardiogram...and it was scheduled for 2 hours...
Panic, who scheduled this and why....our cardiologist is
in Des Moines.
When I finally had a chance to look at my paper, it was
indeed scheduled as and Echo...
I guess I need to up my reading skills...

Dick said, they had to do some "ultrasound" since the
gastoenterologist is out of the country and Hollister wasn't
scheduled for the gallbladder ultrasound...something about
our appointment $$$minimum...haha

Hollister did surpringly well.

Our day just got wierder...after we left, it was time for
Hollister to get his pills...and Lab work was at 10:20.
Not much time for a very hard stick.
So we went down a little early, wow what a zoo. They seperate
the wheelchair folks to another side of the lab. I have
never seen so may people there. Finally Hollister gets
called in and their is panic, he is a hard stick. So he
get lots of warm blankets and out we go, back to the waiting
room zoo. It is now 11:00. Our Neurology appointment was at
10:45. So, Dick call upstairs and talks to the office.
Apparently, they changed out appointment to 3:00....
We were hoping to be on our way home by 3:00....

After another 30 minute wait for the lab, we finally made it
back in. One guy, Jorge, who was helping hold Hollister,
told me it was 2 for 1 Tuesday...a coupon in the paper...
haha...That is why they were so busy!
A different girl came out...She remember Hollister from 6
months ago....She got him on the first stick...and they
were laughing about his "order"...filling what was most
important first....and his sorry little vein kept giving...
He was able to give the 35ml needed....I was so impressed.
I started clapping for our girl stephanie and and her
holder/helpers....Impressive...I even reminded them to take
a little extra as something will be added later, she laughed!

We were able to have a short break before our next appointment
at 12:45....
Hollister was doing pretty well. He was still awake and looked
good.
Our first appointment was with Dr. Driscoll, PMR. She has
been following him the entire 8 years. She was thrilled
to see Hollister. She thought he looked better than 6 months
ago.
She was encouraged by some of the work he has been doing
the last 6 weeks. She gave us some other ideas and is
encouraging therapy at least 3 times a week....OT, PT, and
SPT....Yahoo....

Then we went on to Genentics....Hollister feel asleep in the
chair and he was tired.Her impression is that his MELAS is
very stable. He looks good. No changes were made to his
mito cocktail. His lab work was STABLE...His lactic acid was 2.2!!!
NORMAL....Everything else looked good!
She was very interested in that he has had the flu shot,
H1N1 shot, and pnuemonia shot without difficulty. She was
very pleased with that inoformation.

She did indeed order the echocariogram of Hollister's heart.
She wanted to see it and compare it to the last one there
which was done inpatient in 2004. GREAT news, his heart looks
exactly like it did in 2004. After all of the crap that
happened in 2006 and the surgery in 2007...his heart looks
like it did before! That was fantastic news!!!!

She was thrilled!
She is wondering about and MRI of the brain.
Hoping she doesn't schedule that when we go back in 6 months!
I hate to have it done. I know it looks bad and it generally
gets everyone all excited....
but not going worry about that until I have too.

Then off to see Dr. Patterson Neurology, we were running very late.
He too was very happy, he was able to check the rest of the
labs. When we told him all that had been done in the last
6 weeks, he was exstatic. He believes good things can still
happen for Hollister. It is going to take time.......

He wants to keep things status quo....I reminded him that
I really would like to lose the Dilantin, but...don't fix
what isn't broke....

Then, we had to go back to genetics about some paper work and
more lab work...The needed 20mls more from Hollister, I told
them we would get it the next time we are there......

So, our day turned very long.....We left the Clinic at 5:15....

We didn't get home until 9pm....What a day....

Hollister was exhausted, but was ready to get up at 5am...
"You are killing me smalls...."

We are praying a prayer of thanksgiving for Hollister's
appointment. It was so great to be encouraged by the
all of the Doctor's.....More than we ever hoped!!!!
His lactic acid hasn't been 2.2 since early in 2006!!!!

God is Good!!!!

In the spirit of Advent, we all need to do good deeds and
quietly offer them up.....That is something I have always
ask my kids to do when Hollister has been so sick....
Take no credit and it give it back to God.....
Now we can offer it up for Grandma Jo!!!
even the smallest work counts especially to God.....

Team Tough is Humbled....

Thursday, November 26, 2009 10:33 PM CST

Happy Thanksgiving...

The end of the day is drawing near...
and we are tired! Hollister is snuggled in bed..
the rest of us are not far behind!

Hillaree and I aren't going on our shopping extravaganza
tonight...hopefully, we will get out tomorrow. It certainly
isn't about shopping but people watching and spending some
time just being silly!!!I know she is disappointed and so
am I....I do love my time with her. She is very fun!!!

We had a nice day, decided to drive up to Algona and
spend the day with my Mom and Dad. Hollister and I hadn't
been to Algona in a very long time.
Our day was good.
Hollister did great. It was so nice to have him sitting
at the table as we ate. He didn't eat anything but he
appeared happy to be with us. The food was awesome....
Something about Mom's cooking that is so comforting!

We also enjoyed a few hands of scat( a card game we have
played our entire lives....) Hollister continued to sit
at the table. He seemed so happy!
Then we moved on to Huckley buck( or as Hollister used to
say...Huckle buck) and Harrison had beginners luck and
won 2 games...( he went home will well over $3....

Drove home and made it back....just in time for BED!!!!!

I have so much to be thankful for this year....
and believe me, I am!

Team Tough loves gratitude!!!!

Happy Thanksgiving!

Friday, November 20, 2009 1:02 PM CST

Another month almost passed.

I have started several journal entries, some have been
lost(stupid computer) and some have been closed.

November is a difficult month for me.......

It has been 8 longs years that Hollister has been fighting
this awful beast! It has been 8 years ago that we got
thrown under a bus and are still trying to get up!

Who knew what MELAS was 8 years ago....

It has been a lot harder this year. Watching everyday on
the calender and remembering how our lifes were being shattered and
torn to shreds is very very difficult and time consuming!
I can remember every detail starting on that fateful Saturday, November 3rd.....

Looking back is no more painful than looking forward. It is like living everyday
constantly fearing what could come tomorrow.
Knowing all of your hopes and dreams are shattered!
I can't even recognize any aspect of the life I knew 8 years ago......
Time marches on...

Eight years ago, friends and family were plentiful. People
were anxious to now how Hollister was and if Hillaree and
Harrison were OK....fortunately, now I don't get out much,
but when I do...I see people look away or avoid us all
together. In this case abscence does not make your heart
grow fonder. It makes one's heart very sad.
It seems so surreal to me that this is now my life.

What I have learned in the last 8 years is Hollister is
very tough! His will to live and survive is so strong that
he is able to propell us with him.
He truly has an amazing gift from God!
For everyone who averts there eyes, no longer is our family
or friends...I am so sorry in the last 8 years that you
missed an amazing opportunity to grow as a person and in
your faith!

As November draws to a close, I will be able to focus on
the things that I am so thankful for!
Most importantly to the kind hearted souls....you all know who you are!!!!
THANK YOU!!!!!
You have improved Hollister's life and ours...
We are grateful!!!!

Happy Birthday today to my Mother....JoAnne
Hollister is named after her, maybe that is where
he gets his toughness!

Please keep G-ma Jo in your thoughts and prayers.
She has hit another bump in the road with CANCER....
She will find out what needs to be done in the next
week or two!!

Team Tough as always, needs your thoughts and prayers!

Keep the faith and hope alive!

Sunday, November 1, 2009 11:14 PM CST

Halloween came and went...
Trick or Treat in Des Moines was Friday night....
Beggars night...Boy was it crappy out...
Only had a hand full of kids!

Not sure how the month of October got away from us.....
I think it has something to do with the weather being so
horrible!

Yesterday was OK but today was nice. Felt good to get
Hollister outside to sit in the sun for a while. Was great
to have the sun in my eyes!
Dick and Harrison did get a good start on the yard work.
Always so sad to see your summer plants sleeping for the winter.
Hope and optimism that they will come back next spring!

Thankfully, my sister Judy is doing well. She is recovering
from her surgery. Her sentinel node was negative, so that
is very good news. She has one more pathology report.
Hopefully that will be back this week. Then after she
recovers she will start the radiation and the hope is still
no chemo!!!!!

Harrison did get in the last football game. His ankle passed
all of the tests...but this mom was still very hesitant...
It was very cold and pouring rain. It was miserable.
He did get in a couple runs and then came out and his ankle
got stiff....everyone was a little nervous.
He is fine and started wrestling. He is also busy working on
his Duo for speech and debate.
Crunch time to get to some competitions...

Hillaree finished up diving and swimming. She mostly dived
this year. She finished at districts last Thursday. She
dived her personal best. She did get the douible last week and
she has the very bruised back to prove it!
I am so proud of her. She worked hard!
I encouraged her on her last dive to run off the board and
do a cannonball and splash the judges...
She told me she really wanted her points..

Hollister is doing well. He looks good and is working hard
at therapy. Hoping that the nausea and vomiting are truly
gone. He is strong. He tolerated the H1N1 vaccination.
I was concerned.I asked the geneticist if he should get one...
and she told me that he definetly should get the shot for
the swine flu...made me chuckle...The media in Des Moines has
been so careful not calling it the swine flu...H1N1...
But the Mayo Clinic called it the swine flu.
We all got ours...so we are good to go!

Tomorrow night DCHS plays East in the football playoffs....
doubt I will take Hollister but we will be listening on
the radio.

Go Big-D

As November starts and Thanksgiving nears....
I know how much I have to be thankful for!!!

Saturday, October 24, 2009 6:19 PM CDT

Story : The Penny says “In God we Trust”

Several years ago, a friend of mine and her husband were invited to spend the weekend at the husband’s employer’s home. My friend, Arlene, was nervous about the weekend. The boss was very wealthy, with a fine home on the waterway, and cars costing more than her house.

The first day and evening went well, and Arlene was delighted to have this rare glimpse into how the very wealthy live. The husband’s employer was quite generous as a host, and took them to the finest restaurants. Arlene knew she would never have the opportunity to indulge in this kind of extravagance again, so was enjoying herself immensely.

As the three of them were about to enter an exclusive restaurant that evening, the boss was walking slightly ahead of Arlene and her husband. He stopped suddenly, looking down on the pavement for a long, silent moment.

Arlene wondered if she was supposed to pass him. There was nothing on the ground except a single darkened penny that someone had dropped, and a few cigarette butts. Still silent, the man reached down and picked up the penny.

He held it up and smiled, then put it in his pocket as if he had found a great treasure. How absurd! What need did this man have for a single penny? Why would he even take the time to stop and pick it up?

Throughout dinner, the entire scene nagged at her. Finally, she could stand it no longer. She casually mentioned that her daughter once had a coin collection, and asked if the penny he had found had been of some value.

A smile crept across the man’s face as he reached into his pocket for the penny and held it out for her to see. She had seen many pennies before! What was the point of this?

“Look at it.” He said. “Read what it says.”

She read the words, “United States of America”. “No, not that; read further”. “One cent?” “No, keep reading.” “In God we Trust.” “Yes!” “And…?”

“And if I trust in God, the name of God is holy, even on a coin.

Whenever I find a coin I see that inscription. It is written on every single United States coin, but we never seem to notice it! God drops a message right in front of me telling me to trust Him? Who am I to pass it by? When I see a coin, I pray, I stop to see if my trust IS in God at that moment. I pick the coin up as a response to God; that I do trust in Him.

For a short time, at least, I cherish it as if it were gold. I think it is God’s way of starting a conversation with me. Lucky for me, God is patient and pennies are plentiful!

When I was out shopping today, I found a penny on the sidewalk. I stopped and picked it up, and realized that I had been worrying and fretting in my mind about things I cannot change. I read the words, “In God We Trust,” and had to laugh. Yes, God, I get the message.

It seems that I have been finding an inordinate number of pennies in the last few months, but then, pennies are plentiful!

And, God is patient…

-Author unknown

In God we trust...

Lots going on...and have been very busy.!!!
God may be patient...but Momma isn't!

Will write a real note very soon....

Friday, October 9, 2009 10:38 AM CDT

I am not sure where the time goes!!!
or...
sun, heat, and an enjoyable fall!

I have always hated fall and this re-inforces my dislike!!!

Spring/Summer come back.........

What a week it has been!

Hollister continues his ups and downs...
One minute, I swear he is ready to get up and walk out of
here...
and the next he spends a day throwing up everything...
He is confusing me and frustrating me!

Hollister and I did have an outing this week...
We spent Wednesday in Mason City.....Unfortunately it was
at the Mercy Hospital.
My sister Judy has breast cancer...(CRAP!!!!)
Those are really hard words to write! She is only 51....
She had surgery and did fantastic. She went home yesterday....
She has to wait for the breast to heal to start Radiation....
Her sentinnel node was clean so far, will wait for the final
pathology report...but so far she will not need Chemo!

Working in surgery the last 20 years, made Wednesday all the
more difficult...It is a lot harder to wait in the waiting room,
than to be scrubbed in the OR....Knowledge is power!!!
I guess, looking back I really liked my job and I do miss working...

This is one of those times when I feel so helpless...
Just like when my Mom was going through treatment for her
lung cancer...I can't be there to help and take care of them...
I can't leave Hollister...
sometimes life makes life so difficult!!!

Hollister did great on his day out. He made it so easy for
me to take him! I know he loves to go. When Dick and I got
him up at 6am and told him we were going on a road trip,
he was happy. Dick had appointments all day in Northern
Iowa...so he drove us. Hollister did great in the car and
stayed awake the entire 2 hours...He was happy to see his
cousins and G-pa and G-ma...

Yesterday, he was tired. He did make it to therapy, but he
was sleepy.

Weather is probably not cooperating well enough to take
Hollister to the DCHS game tonight!

GO Big D!!!

Team Tough wants to remind all our "girl friends" to get
a Mammography done every year.......

Friday, October 2, 2009 12:31 AM CDT

Happy Birthday to Hillaree...
Happy Birthday to Hillaree...

Kind of sweet, she and I were both up at Midnight...so I
did get to spend her last moments of her childhood with her.
I was also the first to hug her as a legal adult...I am sure
it meant more to me than her...She was trying to get her
homework done and I was bothering her!!

Hard for me to believe my sweet little Hillaree is 18!!!
Where did the last 18 years go... I have done a lot of
reflecting and soul searching this past week. What
frightens me is what the next 18 years will bring....

Hoping that her birthday is all she hopes... I know her
day will be busy with swimming, school, diving, and football
game...hopefully she will squeeze in a little time for her mom...
If not we will spend time with her on Saturday, the G-pa and
G-ma are coming...

Hollister, well the CT scan was an ordeal....The Tech came
out and tried to give him a very large cup of Kool-aide with
the contrast in it...I glared at him and said...he doesn't
take anything by mouth...all he could say was.."OH"
He takes us back and said he would start and IV and at
least give him the IV contrast....
Again...I am thinking to myself...GOOD LUCK!...I really wasn't
very excited about any contrast for Hollister. One more
thing to metabolize and get rid of....and he is already
struggling. When siging the consent for contrast...the
tech made sure to tell me that...ya know he could die from
this...Great, patient skills!!!
I was starting to get very irritated!
But....
He was pretty confident that he could get that IV started...
I told him he was generally a life-flight stick...and usually
and arterial stick... I told him Hollister had been sick for
8 years...
He still was acting very confident! Probably because he wasn't listening!
Finally, he realized he was in over his head..and thankfully,
Hollister wouldn't straighten out his arms...So, it was
decided to do it without any contrast...YEAH...

But, by now the tech was frustrated also...so Hollister's
positioning was less than perfect. So the report for the
CT was less than perfect!

So, the plan is to re-draw the blood work to check those
liver enzymes when Hollister feels better...

AHHHHHHHHHHHHHHHHHHHHHHHHH!!!!

I feel like I know less...He is all over the place.

It appears our nice football weather is over. We will
probably be listening to the Maroons on the radio tonight!
I miss summer already!

Happy Happy to Miss Hillaree Mae...
May all your birthday dreams come true!!!!

Friday, September 25, 2009 2:18 PM CDT

The roller coaster ride continiues....

We took Hollister to the new internist on Monday.
I guess it was time for Hollister to have a doctor that takes
care of Big people...
Strange, if he were a non sick 22 year old, this transition
would have happened 4 years ago....
Hollister's illness is considered a pediatric illness...
meaning that adult doctors have no idea...Truly most Doctors
have no clue when we say MELAS...but the doctors who have
taken care of him for the last 8 years have learned....

It was time....

So far so good. The new Doctor seems very interested...
He is closer to Hollister's age than mine...that is a little
creepy!

We talked about Hollister's increased vomitting, which has
improved....but he has lost 10 pounds since June....
He was worried about Hollister's gallbladder and when he
assessed him and palpated his abdomen...of course he screamed as if he were dying..
So, he orded an ultrasound of abdomen and added some other
labs to his monthly draw, which we did on Monday....

Tuesday at therapy...was a bust. Hollister was tired and
wouldn't stand up. He was crabby...

US bright and early on Wednesday....The tech, scared us to
death...and Hollister didn't like his tummy being touched.
He totally reacted like it was very very painful....

CRAP!

Ran into our new Doctor in the hallway and told him that
the US was done. He did tell me that 2 of Hollister's liver
enzymes are elevated...CRAP!!!
Reminded him to send it all to the Mayo Clinic to his
gastroenterlogist...

Hollister was exhausted and sleep the entire day. He had no
idea, how stressful my day was waiting...no knowing and
waiting....
Finally talked to The Mayo Clinic his gallbladder looked very
similiar to how it looked this summer...so that is good...
Why his liver enzymes are elevated is the question...

Hollister will have a Cat Scan of the abdomen on Tuesday.
This will help rule out pancreatitis...

Hillaree is very upset! Why didn't they take the stupid
gallbladder out last summer....This is way too much pressure
for Mom.....She get's it!!!

Harrison had his ankle check this morning. 4 weeks have
passed. WOW. It is healing...he can now use 1 crutch and
slowly start to weight bear on it. Gonna take a while for
it to get strong! I know he will work hard.

Homecoming this weekend, game tonight and dance tomorrow
night. The kids have had fun at school this week. They like
any reason not to wear the uniform!

Hoping to take Hollister to the game tonight..
Big game DCHS and Ankeny...
Go Big D!!!

Team Tough needs a few extra thoughts and prayers..

Wednesday, September 16, 2009 1:19 PM CDT

Another B E A U T I F U L day..

I wish Hollister felt better so we could get out there and
enjoy it.
For the last week, Hollister has had lots of vomiting...
comes with no warning. Over the weekend I held most of
his food. Hoping he would get over it.
I have given the Zofran every six hours for a week and
just when I think we are past it, he pukes and pukes...

Monday when I got him up, he cried and cried...I have to
wonder is this the gallbladder??? I pushed on his right
upper quadrant...and he stopped crying and laughed at me....

He makes my brain tired!

He was suppose to get his Flu-shot Friday with Hillaree and
Harrison, but with the vomiting I opted for him not to get it...
so now I am anxious for this to stop so he can get it.

Then in a moment's notice, he looks well and happy.

Yesterday was a big day here....
Harrison was elected President of his Freshman class.
There we 7 other kids running for that office...
He was excited...his first Student Council meeting is on
Thursday.
We are very proud of Harrison. Wish his ankle was healed
so he could get back on that football field...

Here's hoping Hollister can get over this...soon!!!!

Keep thinking of Team Tough....

Welcome back to Mrs. Johnson's students.
I love reading your notes to Hollister.
They thoroughly brighten my day.

Monday, September 7, 2009 1:37 PM CDT

I hope as I write this, you all are watching the
Jerry Lewis Muscular Dystrophy Telethon.

Jerry Lewis is certainly a HERO!!

What he has personally done for MDA...
and Neuro Muscular Disease.....
is truly amamzing!

Hollister has never gone to any of the camps...
but what an awesome thing.

Hollister did indeed have an appointment with MDA
clinic here in Des Moines at the Iowa Methodist Hospital.
The facilities are somewhat less than desireable but
the Neurologist was awesome. I love knowing that he is
in Des Moines. It was also very nice to have a doctor
know exactly what MELAS is!

We have borrowed lots of different equipment from the
MDA loaner closet..saves us and others lots of money...
so remember if you have medical equipment you can no
longer use the MDA as well as Easter Seals have loaner
programs...

Hollister is laughing and giggling as I write this..
both hearing aids are now on the floor!
He thinks he is so tricky.

He continues to have his ups and downs, have'nt figured
out what is going on...or where he is.

Happy Labor Day....

Be generous to the MDA....
Your Dollars may be the cure!!!!!

Team Tough loves the MDA and Jerry Lewis!

September 3, 2009 9:00am

Those are not tiny little puppy paws on Hollister's page
today....those are tiny little tiger paws....and the
Maroon's are going after em.....

Today is the Freshman football game against the Valley
tigers...this is more than a game...
Harrison will of course not be playing, but a victory is
wanted and needed!

Harrison is tough. It has sunk in that he isn't playing!
He has been going to practice and standing on his crutches
the entire time. Tuesday he was shot! We have told him to
sit and take it easy, he refuses...If I am not up by Coach
listening to th plays and watching, how will I know what is
going on.....
He is tough like Hollister!
Maybe even a little crazy!!!

I know that it is only a broken ankle...and in my most
sane moments, I get it....but my coping abilities are
continually stretched...that this broken ankle is like
a giant sledgehammer on my heart and soul!
It is more than Harrison missing a "few" football games...
It is an opportunity for me to get out of the house as
normal people...
Sure we will make it to some of the games but it isn't the
same!

Hillaree had her first swim meet last Tuesday. We did make
it to that. Swimming is different that football.
She too is very tough. She finished her six dives, then
immediatly swam the 500 meters race...which she hasn't been
training for...and then swam in the next relay another
50 meters...and then swam the last relay....another 100
meters..she was exhausted...not sure what the coaches were
thinking...but it was cruel...She swam 650 meters of race
in a very short time....
But, she too is hurt...shin splints
AGAIN!!!
The trainer is working with her....

Hollister also looks rough. Not sure what is going on.
Has to be autonamic...One minute he looks good, the next
minute he is hot/cold, fever/chilling, vomiting, tired,
awake can't sleep....Not sure what do do...
but,
When he looks good he looks good.
I have been working on the hearing aids.
I do believe it is getting easier. Last Friday, I spent the
entire day picking up the hearing aids. If I turned my back for
one moment he got that left out and it was on the floor.
AHHHHH
I don't know if you know but hearing aids are very expensive....
and some what delicate! Not met to be slammed into the tile floor!!!
He was making me crazy.
He has gotten better, somewhat! He will leave the right one
in most of the time, I still have to keep a very watchful eye
on the left one!
I do think he is maybe getting the idea of hearing,sometimes.....

They are all keeping me on my toes this week!

We are excited for the game tonight...
and more excited for the Varsity game tomorrow night...
Hollister loved his Maroons...and he loved this game.
I remember his freshman year at the pep assembley.....
Those varisty players lifted Hollister high in the air and
passed him about...It was a very happy moment and a very
happy memory...

What do we eat?!?!?!?!?!
What do we eat?!?!?!?!?!

TIGER MEAT!!!

Team Tough is football crazy!!!

Go Dowling!

Friday, August 28, 2009 10:53 AM CDT

Team Tough was not ready for football....

Yesterday turned into a disaster!

Hollister for some reason threw up all of his morning medications.
The problem is, I never really know if it is all of his medications.
I know it was a lot...but was it the seizure medications....

We did indeed get the new hearing aids! He will have to
get used to wearing them and possible hearing again.
Now, his brain needs to learn how and what to do with the
hearing!

We did indeed head to Fort Dodge...and the rain did stop!

On our way, Hollister needed to stop and use the facilities...
Which is like a toddler needing to toliet!!
Except we need a big bathroom, where he can get the assistance
he needs.

We were almost to Webster City and one of the Caseys has
Ok bathrooms...well our first stop was at a Caseys that
has only the little bathroom behind the counter...we didn't
realize that until we had him out of the car....AHHHHH

We got him back in the car and headed to the other Casey's...
He did indeed make it and definetely had to go!
We we very happy, a future disaster averted!!!
Yeah for Team Tough!

The time was shortly after 4pm...We were still on time!
I said to Dick, I should give him his meds...remembering
that he may not have his medications from this morning.
Knowing that we needed to keep moving, I said I would give
him his meds at 5(normal time is 5-6) when we got there....

We were on our way....

Hollister was quiet, I looked back and Hollister was having
a grand mal seizure...he looked tough!!
Dick pulled over on the side of the road and I gave him his
medications and some extra Klonipin...He seized a long time.
Then it was realized that his brand new hearing aid was missing!!!!
We know that he had both of them in his ears after Caseys.

Now we are tearing everything out of the car, and when
we take Hollister even for a few hours, the car is loaded...
Lots of TENSION!!!!

Dick finds it!!!!
AMEN!!!!

Hollister looks better so we head to Fort Dodge...We only
had a few miles to go...We decided, if Hollister had another
seizure it would be better to be in Fort Dodge.

We missed the first quarter of the game. So we were anxious
to get there. Harrison was pumped, he was going to be
playing both ways and could see lots of playing time...
Dick had the video camera, Hollister was snoozing in his
chair...
We get in the gates and I don't see Harrison on the Field..
I scan the sidelines...and I see him with his helmet off
sitting on the bench...Doesn't look happy!

We get to the stands and the trainer calls us over...
The first play of the game, Kick off...Harrison gets a big
tackle!..yeah...but his foot slips and he is hurt!
Hoping this is just a sprain..some tylenol and ice and we
would see our trainer at DCHS this morning...

On the way home, we called Hillaree. She was talking with
her Diving buddy Alex...whose Dad is the orthopedic surgeon
who graciously saw Harrison this summer, when he had a bad
sprain...Alex tells her dad that Harrison is hurt..
So, he makes plans for Harrison to see him at 8am, if the
trainer thinks he needs and x-ray...

Of course, Mr. Lark(trainer)wanted and x-ray to be sure!
He then went to See Dr. Weresh...and it is broken, his
tibia through the growth plate....He is in a boot for the
next 6-8 weeks. He will get rechecked next week.

Harrison is very bummed. I am very sad!

Hollister is still sleeping this morning, tired from his
big day yesterday...

Suppose to go to the DCHS first football game of the season...
I know how badly Hollister would want to go, but not sure
my heart is into it....

I do know what Hollister would say....
"He is the only one who has never had a broken bone!!!"

Team Tough is bruised...and one broken ankle!

Thursday, August 27, 2009 8:14 AM CDT

Rain Rain go away....

Today is Football Thursday!
The first football game of the year for us.
Harrison and his Freshman team play today in Fort Dodge!
It warmed my heart to see him off to school this morning
with his dress shirt and tie. Reminded me of a few years
back when Hollister was a freshman and he always wore a
shirt and tie on game day....Those are the happiest of
thoughts!

Look out Dodgers...the Dowling Maroons are coming your
way...from the sounds of it...Harrison said they are ready!!!

Thursday also means breakfast for the swim team at 7am....
It was our turn to cook...so two egg casseroles went in the
oven at 5am....Thank goodness it is a team effort...
Dick said it went well and Hillaree said they were OK...
High praise!

and most importantly....

It is finally today....

HOLLISTER'S NEW HEARING AIDS ARE "HEAR".....
I can't wait to see if these new ears give his life much
more quality!!!
It drives him crazy that he isn't hearing and he touches his
ears constantly....sometimes it's about every 6 seconds!!!!
One o'clock can't get here soon enough!!!

Then he will see Karen for PT for a minute or two and off
to Fort Dodge...

Team Tough is ready for some football!

Thursday, August 27, 2009 8:14 AM CDT

Tuesday, August 25, 2009 2:24 PM CDT

Just getting home from therapy and Hollister is already
sleeping on the couch.
He was very crabby at therapy. He even had a couple of very
large temper tantrums....Used a lot of energy not working
but acting like a "turd"!
Now, he is very very tired!

He has had couple of big days.

On Sunday, Dick and I were able to both make it to Hillaree's senior
mass at DCHS. It was nice to finally make it. We missed Hollister's senior
Mass as he was very sick at Blank. I missed Hillaree's freshman Mass,
Hollister was very sick at Blank. Dick was able to attend and he even had to talk.
I always feel very very sad when I miss things...That is
truly on of the hardest parts of this whole mess.

Hillaree, Dick, and I generally can't all be out at the
same time without Hollister. It is really difficult for us
to leave him. His seizures are so unpredictable.
Thanks to our friend Deb (who is a PA) she steps in a lot
when I need her....But her baby is also a senior at DCHS
so she needs to be there when we do!

Sunday afternoon, we headed to the Fair.It was great fun.
I do believe that Hollister enjoyed himself. He was sitting
up and smiling most of the time. We are so thankful that
Karen (Hollister's PT) orded us a wheelchair that fits
Hollister. We were still using an old free one...and it
has seen better days...
That wheelchair has made Hollister's life much more enjoyable...

The fair was fun. We ate lots of good foods...and saw
lots of interesting things....I do love the cheese curds...

Monday, Hollister had his appointment with Dr. Mooradian,
his cardiologist. His chest x-ray looked good. His crazy
over bearing Mother made them stand Hollister up for the
film...I know they all think it is a little more work than
needed...but the films look good!
He was happy with how he looked and how his heart looked and
sounded.
The window is working and his heart appears stable...

Of course Hollister played oppossum when he was in the
room...
but, woke up when our friend Jan Mackey stopped in. She is
the greatest social worker...Mercy is lucky to have here...

and today therapy...he is tired.

Hillaree and Harrison are getting in the routine of school.
They seem so busy, lots of homework already!!

Team Tough is tired!

Thursday, August 20, 2009 8:00 AM CDT

This is my Horoscopes for yesterday...

I have never put much thought into ones horoscope, but
occassionally I will read mine. Sometimes, it seems so
appropriate.
(I do know, it is how you interpet what you read and or
hear...just like at Mass sometimes I feel like Father is
talking directly to me....)

Aries...
Your Team will win. Rally together to celebrate.
After the victory moment has subsided, privately make
a list of what you did to contribute to the success.
Recognize yourself both as an individual and as part of
the group....

Well, that horoscope is as good as it could possibly be.
My team is Team Tough....and A Win would be fantastic.
Hollister, I do believe is trying...He is amazing!

He is so alert and awake and wanting to badly to move...
I can see him in there.....

It is official. Hillaree and Harrison are at DCHS at this
moment. School is starting at 8!

Seems so sad, no big school shopping. I never thougth I
would miss those crazy lists...and wondering who made them
up and why? No glue sticks, no crayons..(24 pack only),
no ruler, no cool pencil box, and no stickers...It is a
very sad day for this Mom...
We didn't even get new Tennis Shoes....
Harrison did tell me this morning he would need a german to
English dictionary...well, that certainly made me feel better...hahaha

Can't wait for them to get home to hear all about it!!!

No one ever told me, that they would grow up this fast....

Hollister has therapy today, and I have stinky football
clothes to wash and swim suits....

Hollister has therapy...Hoping for a good day.!!!

Team Tough is winning!!!

Tuesday, August 18, 2009 8:40 AM CDT

Harrison is officially a freshman.
He is at orientation today until 2:30.
He has tomorrow off and school starts on Thursday.

We had to meet with his counselor this morning, changing
his schedule already. I am sure she is thinking...this is
the third kid you've sent here...get with the program already!
Harrison needs one more hour of school to take
all of the classes he wants too!...
this has never happened to us before..haha

Pretty painful watching him leave in his DCHS uniform...

Tomorrow Hillaree has orientation...and graduation gown
fittings...AHHHH

Orientations all around with most of the construction
finished...DCHS is very impressive!

No way am I ready for Thursday...

Sunday went to the Freshman Mass and parent orientation.
This is way harder than any kindergarten round up.
Choked a few times...and there was a couple of pictures of
Hollister in the video...Very nice!

The school year is upon us...full steam ahead!

Hollister has therapy today. Hopefully he can do something
for Karen. He has been standing better at home...and more
often.

Still waiting to hear about more therapy...We are keeping
our fingers crossed....

Enjoying the cooler weather, easier to get Hollister outside.

Tonight is the football parents meeting...and the scrimage.
Will be a very long day for Harrison. Hoping to take
Hollister. He loves football and any chance he has to be
at DCHS.

Team Tough is Hopeful!!!!

Wednesday, August 12, 2009 1:32 PM CDT

Happy birthday to Harrison....
Happy birthday to Harrison....

I am having a hard to believing that my baby is 15...
That is crazy...
I remember the day he was born, like it just happened....
He was born on Eastsider night at the Fair...How awesome
is that...I have always loved the first friday night of the
fair...I am an Eastsider at heart...just ask the nurse....
and Doctors I worked with at Mercy...Parking cars in my yard...haha

I remember how happy Hollister was on the day his little
brother was born...He was there when he was born...and
touched him first....a bond that was always very very strong.
It is truly agonizing for me, to know what Harrison has lost
out on with Hollister being so ill.

Harrison's birthday will be busy...
I did get to take him to breakfast this morning....
He needed to be at DCHS for speech camp and Hillaree had
a Doctor appointment...so I got out to take them both...
It was fun!
Harrison will leave speech camp and head to football at
three and come home around 8:30 or 9:00..He will be tired..
High school is tough!

He is really excited about the speech and debate program.
He did sign up for the class. The good news is that his
partner Katie (from last year)...will more than likely be
his partner this year...They are a great team...It could be
a good 4 years for them!!!

Hillaree and her friend Lindsey took Hollister to therapy for
me yesterday...and Holy smokes...Hollister did well.
He walked 80 feet and Karen was happy!!! It was a good day!!!
I need to stay home more often....

Today was the Metlife summer outing. We were down at the
Iowa Cubs game.....and Hollister had a grand-mal seizure...
and started vomiting...CRAP!! Hillaree was able to drive
Hollister and I home and get back for the game...
Hollister is sleeping and we missed the game...darn!

That was unexpected..He looked so good this morning.
Up early and showered ready to go...He was enjoying the
tailgate..and bam!
Ya..just never know!!

Tomorrow is Hollister's audiology appointment...I am very
very hopeful that new hearing aids will give him back some
hearing...

As Hollister rests...I sit and reflect..
.
Today I reflect on all of the happy and goodness that
Harrison's life is full of. I do believe God has bestowed
him with many gifts!

Team Tough is celebrating a birthday!!!!

Thursday, July 30, 2009 3:52 PM CDT

Quiet afternoon here...
Hollister is napping on the couch after therapy...
and Hillaree and Harrison are out at Adventureland...

Hollister did a little better at therapy today. I am
happy to see even the smallest move foreward. He still
grumbles at Karen when she stretches him!

We are patiently waiting..haha to hear about Hollister's
increased therapy which will include speech therapy and
occupational therapy...hoping and praying for good news..
We have the orders from Rochester....

Labs yesterday proved that I was accurate in my assessment
that his dilantin level was too high. It was, so I changed
his dose a little...back where it had been.
Hopefully, he will stay seizure free and not be so tired
and sleepy.
To quote the kids...quoting one of their favorite movies...
Sandlot....
"You're killing me Smalls...."
He is killing me with the lack of sleep. I am tired.
He can't stay asleep..so he is taking lots of little cat naps
during the day. He is wearing us both out. When he is up...
he is sleeping in the chair. When I lay him down he wakes up....
CRAZY!!!
The last couple morings we have gotten him up at 0430...
it is still dark out and the paper isn't here yet...
Even Hooch is tired..haha

Harrison starts Football camp on Saturday...High school...
I keep telling him it will be Ok with me if he doesn't
want to play football in high school.. I would be fine if
he sat out, or maybe ran cross country or maybe cheerleading...haha
He shot me down and said...."This is high school football...
are you kidding me!!! You're killing me Smalls..."

Hillaree is headed to CYC on Saturday for the week.
She is counseling up there for the week. She will be
spending her week with elementary kids...She is very excited
to get to do this...Hollister counseled twice while he was
in high school and he loved it...Kind of like walking in
his shoes...doing something cool and fun that he was able
to do!
Lucky kids who get to spend the week with Hillaree...She is
so fun!

We have gotten Hollister out of the house..took him to an
Iowa Cubs game...he loved to go there..He was always the
guy with a pencil and a score card!
We went up last Saturday to the Rieman gardens up in Ames...
Wow, what a beautiful place. I do believe Hollister enjoyed
his time there...
Yesterday we took him to see the DCHS boys play at the
state baseball tournament...It was fun...I kept telling
Hollister our "little" neighbor boy Jake was playing third
base...(he isn't so little now..haha)
Those kids played hours and hours of whiffle ball...
how fast they all grow up!

Team Tough is only as strong as our weakest member!!

Monday, July 20, 2009 9:27 AM CDT

Middle of July already...
so much for my updates...
My intentions are good!
and I do know the old saying what good intentions do....

Our fourth of July was good. We didn't see any firworks...
First time ever.....It just didn't work to take Hollister
out!

My heart ached last week when Harry Potter 6 game out...
Harrison spent 18 hours at the theater watching all of the
movies, leading up to the new one at midnight...
Hillaree also went at midnight to see it...
Harrison was exhausted from sitting that long...
It broke my heart to know that Hollister would have been
there with him...He loved Harry Potter...He read of the
books...I can't wait for him to see it....I know one day
soon, we will catch him up on the last two movies!!!

Hillaree and Harrison are taking the week off, from all
activities...a well deserved rest!
Hillaree and her friend Lindsey took the train to Chicago
on Saturday. It sounds like it was a good time.
They are staying with Lindsey's cousin and sight seeing
every day. She is having a great time. She loves Chicago!
Going to all the museums, Navy Pier, and shopping...
and a Cubs game!!!
She will be back sometime Saturday!

Harrison is at CYC(catholic youth camp)...
Will be a fun filled week for him. He went on his own...
No cabin mates...but he did know a large group of girls
that were going this week...Dick dropped him off yesterday
and he was surrouned and didn't even notice when he left!
He will be home of Friday....
He will spend his time on the rock wall, zip line, canoeing,
swimming and hanging out with the girls....

The house is very quiet....expect for Hollister laughing
at this moment!

I do know I will have less laundry this week. I will not
be washing any stinky football clothes or swimming towels...
Friday and Saturday will bring laundry galore!

Hollister has had some ups and downs...
The seizures are slowing..but will have one our of the blue!
He has his sleep times slightly confused...He has been ready
to get up by 4:30 am...This is tough...
Then he naps and sleeps through part of the day...
It seems like 1 day a week his sleep hours are through the
night..CRAZY!!!

He also has had increased nausea and vomiting...again out
of the blue...I can't get the impending gallbladder doom out of my head...
I did withhold his food for 24 hours and gave him lots of
zofran and 7-up...and he appears to be better...maybe it
was a bug of somekind...

We are enjoying the cooler weather, the last few days...
Makes it so much easier to get Hollister outside. I know
it can't last but it certainly has been a gift!

We are still working on more therapy...hopefully we will
know something soon!!!

Team Tough is strong!!!

Once you choose hope, anything's possible.
Christopher Reeve

Wednesday, July 1, 2009 7:07 AM CDT

July already....
Where is summer going...

We came up to Rochester on Monday night.
Again a change in the weather...Cool..only 57 degrees.
I am glad I threw in a long sleeved shirt for Hollister.
The Mayo Clinic was chilly.

Hollister had a speech evaluation on Tuesday morning.
It is all about timing. Trying to figure out his feedings
and medications...and a shower. Unfortunately, Hollister
did not sleep much during the night. I am sure we made no
friends, he was very loud and vocal! He is sometimes very
unpredicatable with his ability to sleep. No way to know
when his brain will be ready to go. At home, we are somewhat
used to it.

His appointment was at 9:15, I was thinking.... get back to the hotel
by 10:30 or so and give his medications...right on time.

The evaluation was very important, we are trying to get him
speech therapy. This Dr. Duffy is somewhat of an expert in
brain injuries. Hollister, I believe met him during one
of his stays in the Rehab unit of St. Mary's. He is very
thorough.
Hollister was TIRED. I kept reminding how important this
visit was.

Around 10:00 as the visit was ending, Hollister had a
grand-mal seizure. AHHHHH
Fortunately, I always carry some Klonipin and Diastat in
his bag. Dr. Duffy couldn't get out of the office quick
enough. I thought it was interesting that no on came and
checked on us. As quickly as we could we moved Hollister
through the Clinic and to the car. We got back to the Hotel
about 10:30 and he rested.

The good news is that Dr. Duffy agreed with me that Hollister
definetely needs speech therapy. His goals need to be written
very very simply so they are attainable. He saw some good
things. He was trying to understand why he hasn't had
any therapy since 2006. One brief month in 2007 certainly
didn't prove anything. I have no answers.

We took him back to the clinic at 3:00 to meet with the
surgeon about the granulation tissue at the Mic-key site.
We were anticipating surgery on Thursday.
Hollister as usual was very impressive. The granulation tissue
was the biggest that the pediatric surgeon had ever seen.
Amazing...and this is the Mayo Clinic!

It was decided to treat the tissue, which looks like a small
lobe of the liver...(I can say that after 20 years in surgery)
with silver nitrate stick at home. Oh boy...I am excited!
I am going to try and burn it off so he doesn't need surgery.
BUT, it is doubtful I can get the whole thing.
Thankfully, I have the skills needed to do this. I think????
It will not be easy...on touch of the skin....OUCH!!!
So, surgery is more than likely in a few weeks...AHHHH
I was disappointed, we were there....ready and willing!

I do apprecite the fact that his mitochondrial disease was
considered. Anesthesia and drugs are difficult for Hollister.
First time in 7 years that an office knew and understood!!!

When the appointments were done, Dick and I took Hollister
out and about. Rochester has changed and grown so much in
the last 7 years, it is crazy! We wondered around a few
stores, it appeared that Hollister liked looking around.

Hollister seems to like to be away from home. He always loved
to go somewhere anywhere. He does surprisingly well in the car
and Hotels. I guess we sit in the house a alot!

The visits to the Mayo Clinic all went pretty well.
Everyone agreed that his MELAS is stable. Now is the time
to move on his therapy. I felt like we were heard!
That is an overwhelming feeling for this mother of her child,
with a rare unknown disease! AMEN....

On our way home!!!!

Team Tough is motivated!

Team Tough is looking forward to Fireworks....
and thanking God for a country worth fighting for....
FREEDOM!

Friday, June 26, 2009 9:18 AM CDT

We made it home last night....
just in time to make it to Blood donor day!!!
I was told several times...Thank you for coming, there is
an extreme shortage for your type. We are desperate for A-
donors...I felt so popular!
I always wonder if only 6 in 100 people are A-...
Then that would mean only 6 in 100 sick people are A-.
how much do you really need?...
But, I appreciate them being so thankful...
Everyone should take time to donate..especially in the summer.
I know when Hollister got blood a couple years ago, it is
very touching to know that someone somewhere, said yes and
rolled up their sleeve to help a stranger...who was my boy!
If that isn't a good enough reason...FREE COOKIES!!!!

The house is quiet, everyone is still sleeping...even the dog!
Hollister was tired when we got home.

He did well at his appointments. First thing yesterday,
he got his blood drawn. That is always a struggle.
I remember, when he was well enough to go in by himself.
It would take forever and ever!
He would come out with gauze wrapped over both arms, wrist,
elbows..he looked mummy like..
(the Mayo Clinic doesn't use tape or bandaids!)
He would always shrug and say..." and this is the Mayo Clinic..
best health care in the world..." he would laugh and
say "they can't even get blood from a kid!!!"
I think that everytime, we role into the lab in the Hilton
building! Makes me smile...I know what he is thinking!

As usual, the lab drawing process was torture...
They were looking and looking...taking way too much time...
and out of no where, Hollister put his hand on the table
and stood up. I couln't believe it. They were telling him to sit
back down...I told them all this was huge. He stood up on his own.
I hugged him and cheered. Told him how proud I was of him!
I then told the 4 lab techs that this hasn't happened in
THREE years...WOW...
I told them all, they would have to come up to PMR to tell Dr. Driscoll,
what they had witnessed!
Highlight of my day!

The rest of his appointments went well. Neurology thought
he looked great. Agreed no more generics..."don't fix what ain't broke"
PMR defientely believes now is the time for therapy...
Speech, OT and PT...
Everyone seemed to agree that he is too young to just let
it be. Who knows what he is capable of.
I felt like I was heard!
Still no answer on where a 22 year old "kid" with a pediatric illness goes.....

Hollister could't have done better. He was awake and alert.
He was interactive and Dr. Driscoll said Hollister was
definetly there, even his smirk!

Harrison leaves for wrestling camp on Sunday. The DCHS
wrestlers go as a team. Lots of wresting this week before
they go. He is excited, a long bus ride to Lincoln, Nebraska...
but a week of wrestling and fun!

Team Tough is glad to be home!!!
Yard work waits!!

Wednesday, June 24, 2009 8:49 PM CDT

It was a very long day.
We got Hollister up at 0330 to shower him and feed him
his breakfast. We left for Rochester at 0630.
Hollister's first appointment was at 1015. There was way
too much road construction....we were late.
We met the new Doctor in genetics. She isn't a geneticist
but a neurologist. This is our 6th genetics doctor in 4 years.
Not sure how long she will stay...this time I didn't ask!
My first impression of her was she seemed to have some working
knowledge of MELAS...
She thought Hollister looked good and will know more about
him when she sees the labs.
She is very optimistic about his brain..."Young people's brains
are amazing...and she had a young girl like Hollister who
did indeed get her abilities back....
I explained a lot of the negative history that Hollister had
happen to him...she was shocked and in disbelief...
When I told her that a Radiologist at Blank told Dick and I
that his brain looked worse than a dead drowned patient...
She looked horrified....She said that couldn't be true....
I also reminded her this was a few days after he perforated
Hollister's jejunem...
Again...disbelief!
She was very encouraging..and agrees that treatment needs
to be alittle more aggressive.

We also saw the GI doctor. I really like him and trust him.
He is very smart. Hollister's gallstones and polyps continue.
As long as they remain asymptomatic, we will leave
them were they are...He did refer us to a surgeon. Hollister
has a very large granualtion tissue around his button. I
have been treating it with ointment, he prescribed. He told
me no amount of ointment will help that! He reassured me that
these happen to everyone and I didn't do anything to cause it.

Hollister did well today. He looked good and stayed awake.
He came back to the hotel and stretched out in the bed.
He finally fell asleep around 7. I think he is down for the night!

Tomorrow is another big day...

Keep Hollister close to you thoughts!
Team Tough is looking for answers!!!

Rochester is full of extremes....
When we were here in January...
It was COLD!!! 55 degrees below Zero... Including the wind chill!!
This week with the Heat index...it is 108 degrees...
Wow!!!!

Friday, June 19, 2009 1:48 PM CDT

A gloomy Friday afternoon it is.
The sun was our for a short time this morning and it was great!!!

In the storms on Wednesday night, a huge branch broke out
of the "ginormous" maple tree in our back yard. Took Dick
and Harrison all morning yesterday to cut it up and tie
bundles..and it was hot and messy. Almost felt sorry for them!!!

Hillaree got home from Venezuela on Monday. I was very happy
to see her. I missed my girl. She had a great time and loves,
those girls. I thank Father Kirby for taking those kids
with him. They come back changed! Kirby is trying build a
new dorm for the girls to sleep in. They sleep now in an
old converted horse barn. Hillaree has mentioned how horrible
it is for those girls....Very sad....So, if anyone has any
ideas for fundraisers or would like to make a donation to
his Tax deductable charity....let me know... He found out
it will cost nearly a million dollars to build it.
I look at those pictures of those girls and my heart breaks....
I always tell Hillaree that I would like to go with her...
and she always tells me that I can't, because...she thinks
it would be too hard on me to see all those beautiful little
girls that no one wants!!! I know she is right!

Hollister looks better! It is amazing, when you get the
the right meds and he can maintain a level. It has taken
us a while but I think he is getting there. He is sleeping
less, is more awake and alert! He is standing better....
even took a few steps for Hillaree and I this morning.
We both cheered....
He still has some off moments....but they are fewer.
We remain hopeful and optimistic!!!!

Tomorrow is Hooch-Dog's birthday. He will be 10 years old.
It was the summer between Hollister's 6th and 7th grade,
he was having a rough time with his friends. He had always
wanted a dog, Dick doens't like animals especially in the
house...but for the good of the child, we got the cutest
little beagle puppy...ever!!! That first night, Hollister
slept on the floor by his Kennel so he wouldn't be afraid.
He has turned out to be a great dog. He is very independent,
which he needed to be when we were gone for months at a time....
and he is mellow....and he loves us when he needs something....
like food!!! haha

I remember when we decided to get a beagle, we had learned
that beagels are prone to seizures...and Hollister said...
"just like me..."

Team Tough is looking forward!!!!

Thursday, June 11, 2009 9:29 PM CDT

Time certainly does pass...

I am certainly glad May is over.....
I was dreading May this year....
and It was truly worse than I thought it would be!

Hollister has had some very rough days. His seizures
continue....Finally on Memorial day....He had some big
grand Mals with airway/breathing difficulties so an
ambulance was called and we headed to Mercy pediatrics...
He spent two nights in the PICU...Lots of IV fluid, blood
work and a 24 hour EEG. The pediatric neurologist at Mercy
said it had to be the drugs....She was very very angry
that our insurance company changed a seizure med without
talking to his doctor!

About 2 months ago...one of his seizure meds was switched
to a generic...I was very angry but our "young" pharmacist
said it was all the same...and our insurance company said
it had to be changed...also at that time she has changed
6 of his other medications.....The seizure med was going to
save our insurance company $1000 a month...
No one but me was concerned...Remembering that his MELAS
prevents him from metabolizing some medications....
So, I am very cautious with anything new...I am very
thorough and meticulous with his medications and care....
All of these changes have been made without the consent of
a Doctor! I will be addressing this at our Appointment this
month at the Mayo Clinic...

So, Hollister is weak, tired, worn out...He has difficultly
holding his head up, standing, and sitting! He hasn't had
a chance to recover from stopping the phenobarbitol...
He started the generic lamictol the time the phenobaribitol stopped...

Not to mention all of the lost time at therapy!!!
He has missed more than he has been at...

I am very very angry!!!Oh and it cost $13,000 to stay 2
nights in the PICU!!! That is the savings for that generic
medication for a whole year!!!!

AETNA can eat it!!!
Unfortunately, we get stuck with a chunk of that!

I am proud of both Hillaree and Harrison.
They both recieved scholorships to DCHS next year...
Hillaree recieved the Vonnie Hess award...I am so proud
of her. This is an award that teachers nominated kids
for. It is given to a student who lives a Christ centered
life...
Harrison got one from the Critelli law firm for finishing
in the top 10 three years in a row for mock trial.
Harrison and Mary Downey were on the same team for three
years...and even in the 6th grade finished in the top 10
in the state!!!

I couldn't be prouder!!!

Harrison did graduate from the 8th grade...I told him he
didn't have to go to high school...that he was ready to
head out into the work force!!! He did get lots of awards
and I hope is headed in the right direction.

It was very diffficult to see him finish at St. Theresa's.
We started there 17 years ago with Hollister. When Hollister
graduated the 8th grade Harrison was in Kindergarten! I
can't believe how fast that time went!!!!
I will miss having students there...

Hollister should have graduated from College....His DCHS
classmates graduated...I saw many names in the paper or
church bulletin....Every time I saw a commencement on TV,
I almost choked....A milestone not achieved....
Now some will go to graduate school...and many are getting
married.....
This is all very painful!!!

To answer a really dumb question about Hollister....
and What he does all day???

"Well he gets up, goes to school, work and dates
beautiful girls and his life is perfect....."

HELLO!!!!!

He sleeps on the couch until I get him up and he sets in
a chair!Then, I put him back on the couch and he naps
until I get him up and put him back in a chair and then
I put him back on the couch to sleep for the night...If it
is warm enough he sometimes naps on the patio lounge chair...
2 hours a week we drag him to the car and take him to
Blank for therapy...

He had another big seizure on Monday morning...Gave all
the medications I could and he finally slept it off!!!
He did go to therapy on Tuesday.....He was tired and stiff!
Wednesday he looked a little better...
Today he slep until 4pm...He was very very tired.
He sitting with his hand splints on..and he hates those....
Tomorrow will be better...maybe even get outside!

I will try to update more frequently...
Thank you to everyone who checked on Hollister/me
this last month...I just didn't have the words to write.
I am ready for him to start making some improvements...
Now, that his seizure meds are hopefully straightened out!

Hillaree is in Barinas, Venezuela at Casa Hogar with
Father Kirby. I am sure she is having a great time...
I am very proud of her...She saw a need last year, that
the girls needed new polo shirts...school uniforms...
So, she made that happen and took 50 beautiful new shirts
to the girls...Thanks Coach Smith!!!

Check out the website: www.casahogariowa.org

Team Tough is Rock Solid!

Wednesday, May 5, 2009 11:36 PM CDT

Happy Cinco de Mayo....

Hillaree insisted we have Mexican food for supper tonight.
Thank goodness for carry out!!! We have a great little
Mexican place right around the corner and it is pretty yummy...
Everyone likes it...

Two days before Hollister had his first stroke, we ate
there for lunch...(no school, conferences). While we were
eating, I insisted he eat some of the rice...He needed the
calories and he loves rice...but he never did like the
mexican rice..only white and fried....
but, that day he begrudgingly ate some of it...

3 Months later, we are eating there again for lunch...
Probably after therapy...just the two of us.
He was on a very crazy diet with carbohydrates restricted...
He smiled and said "you know what this means....I never have
to eat the rice here again..." hahaha

Truly, Hollister had an amazing ability to make the best
out of the worst!!!

He did make it to therapy today with Karen. He was tired.
He got up very early. He did stand well and take a few
steps in the pacer. He did not like being stretched. He
shut his eyes and tightened up!

He still surprises us with seizures. Today I was getting
ready to take him to Harrison's track meet and he had
a seizure sitting in the wheelchair. I think he was too tired...
Mad me sad, it was such a nice day I was hoping to get out!

Hollister continues to be strong and make some improvements.

Team Tough is going strong!

Friday, May 1, 2009 8:46 AM CDT

May day....
No longer a day filled with may baskets for me....
I spend this day looking back with great saddnes and tears....
Hard to believe it is three years since that last good
may day...I am very grateful he is here with me, but I
miss him so much! I am grateful to kiss his lips and hold
his warm hands...but what I wouldn't give for a kiss back
and even a word or too....
I am selfish, I want all of him!

A lot has gone on since Tax day...
Harrison made his confirmation...This too was a difficult day
for me.
I had to make the decision to leave Hollister home!
Hollister should have been his sponsor, instead he had to
stay home, because his outbursts are so unknown.
Harrison did find the a great sponsor and they worked very
hard getting him ready for the Holy Spirit. I know this was
a very difficult decision for him and I am very proud how
much thought and effort Harrison put into his sponsor. I know
he will mentor Harrison for life!
It was three years ago at Hillaree's Confirmation that our
family was together at Mass the last time. Hollister was
still well and able to partake in the Eurcharist. It was a
very difficult moment for me, knowing Hollister was at home!

We took Hillaree on two college visits. Last Sunday we went
over to Creighton and on Monday we went were at the University
of South Dakato. Hollister of course had to test us! He had
a seizure the minute we got in the door at Creighton and then
he had another one a few hours later in the auditorium...
He is testing my patience!!!and Brains...!!!
Hillaree like both schools. Lots of good things at both!!

When we take Hollister any where it is quite a production.
The amount of stuff he requires even for one night away is
rediculous!
Food, food pump, food supplies, medications, medication supplies,
Mic-key buttons and supplies, emegency medications....
the list goes on and on.....
and lots of clothes...accidents happen!
So, Sunday night we are in the hotel....I had finished
showering him and was looking for his clothes!!!!!
Apparently they were on his bed at home...they never made
it in the car...AHHHH funny!
Fortunately, there is a Walmart in Vermillion...So, Hillaree
and I head to Walmart to get him a Sweat shirt...
We are bouncing around and Dick calls Hillaree....
His button(g-tube) is out!!!!AHHHHHH
You only have a short time to replace that tube before there
is a problem that requires a surgeon...
Again fortunately, Walmart is very close to the Hotel
because Vermillion is very very small!
I made it back, was able to get the new Mic-key button placed!
Thank God, we didn't forget that!
Hillaree and I then went back to Walmart, where I am sure
they thought we were CRAZY!!!!

Hollister has had some moments the last few weeks. He is
very unpredictable! This is very difficult for me!
I hate to see him struggling!
But, when he looks good, he looks good. He is strong.
He is still very very vocal. He wants so badly to get his
point across. I can tell it is frustrating to him!

I have had the crude for the last couple weeks....a direct
result of no sleep. I think I have killed my immune system
over the last 7 years! Worst part has been the laryngitis...
This has been very difficult for Hollister. He relys on me
and depends on me and I haven't been able to talk and he
doesn't hear very well...bad combination!
I am hopeful, he doesn't get it.

Lots going on.

Team Tough is waitng anxiously for the May Flowers!!!!

Wednesday, April 15, 2009 11:47 PM CDT

The Tax Man cometh....

Hollister was always always worried about the TAX MAN!!!
This from a kid who never filed an income tax return in his
life....
He had a lot to say about TAXES...

Hollister is struggling...
For the last week he has some unknown neuro issues....

Therapy Tuesday was a bust...He just couldn't focus...
Karen had a hard time opening his hands and extending his
legs to stretch...
and vocal...it just doesn't stop...he just gets louder and
louder!
But, he did stand well Tuesday for Karen...which makes no
sense.

He has not been sleeping much as he is busy "talking"...
He is exhausted...and looks rough.
Neurologically when he is "talking" he is somewhere else...
He can't be reached at all!

Occassionally, he takes a break and will sit quietly.
He appeared to almost stand up on his own...if I hadn't
been standing by him...he would have fallen, he was ready
to go!

He is still talking now...I am anxiously waiting for him
to rest!

Therapy tomorrow, will have to see how he is!

Team Tough is TIRED!

Sunday, April 12, 2009 11:40 PM CDT

ALL I NEED TO KNOW ABOUT LIFE I LEARNED FROM THE EASTER BUNNY

Don't put all of your eggs in one basket
Walk softly and carry a big carrot
Everyone needs a friend who is all ears
There's no such thing as too much candy
All work and no play can make you a basket case
A cute little tail attracts a lot of attention
Everyone is entitled to a bad hare day
Let happy thoughts multiply like rabbits
Some body parts should be floppy
Keep your paws off other people's jellybeans
Good things come in small sugarcoated packages
The grass is always greener in someone else's basket
An Easter bonnet can tame even the wildest hare
To show your true colors you have to come out of your shell
The best things in life are still sweet and gooey

Happy Easter...
The bunny did make it to the house...
Hooch was slepping or he wouldn't have made it out alive!!!!
Hooch likes bunnies...and not the candy kind!!!
Fortunately, for us the bunny left lots of good candy!!!!

Hollister continues to struggle.....
Saturday was a terrible day, He had two big seizures and
lots of problems...probably by my own ignorance he is not
inpatient. There is no comfort zone!!!!

I did make it to church Thursday, Friday and even Easter
morning...Hillaree went to Easter Vigil with our friend Ann.
Hollister didn't make it out of the house.
Dick and I went to 7am Mass on Easter. Harrison was serving.
I like it when the kids serve. All three of them like to be
alter servers. I am so proud.
Harrison will be done soon....makes me sad to think about it!!!!

When we left the house, Hollister was sleeping and his breakfast
was infusing. Hillaree was laying on the cot next to him.
Right after the homily in Mass, I had an overwhelming
urge/intuition that something was going on/wrong with Hollister.
It was a full blown panic attack. It was horrible. I made
Dick leave Mass to call Hillaree to make sure everything was
all right. He came back and assured me it was...but I felt
so sick and nervous...and I couldn't hold back the tears...
It was Horrible!!!! Not to mention embarassing!!!!

When we got home Hillaree had Hollister up and had showered
him and he was ready to go for the day.....
She is so good with him....He loves her!!!
Hillaree got him on that stair chair by herself and took
him to the basement and back up without help....That was
my panic attack...Probably justified!!!!

Today, is also my Birthday....just a few short years
ago....
I was born at this very moment....Lucky lucky parents..haha

I was so hopeful that today Easter Sunday...my birthday that
Hollister would indeed be whole again.....
He loved Easter...dying eggs, hunting eggs, and Turkey!!!

This has been a very difficult day for me........
Life certainly is not how I hoped or dreamed it would be.
I barely recognize myself. 10 years ago when Hollister got
sick, I was a young mother with small children and so much....
I never missed a game, field trip, Tuesday in the lunchroom,
carpool, biblestudy, going out for lunch, fluid rounds,
work, family, friends, Holidays, projects in the house...
that was my life and IT WAS GOOD....

Hopes and dreams...

Now, It is gone....all of it!

I wished for my Birthday...as I wish daily...
That I will wake up and he will be at College...
probably at University of Texas....
and I will be sick in his place...
a truly merciful God would see that is right!

Hoping that Hollister will start to straighten out...
He needs to get his strength back. He is very weak...
Be nice to have these struggles behind us so he can start
to move foreward!!

Team Tough is Tough!!!!

Happy Birthday to me....
oh yeah and David Letterman too!!

Happy Easter to everyone else...
May the risen lord fill you!

Friday, April 10, 2009 9:01 AM CDT

Good Friday.....
A somber day for many of us.

Mary the mother of Jesus is alway in my thoughts, even more
during the lenten season and cerainly through the Easter Tridum....

When I think of Mary and all that she was asked to do....
Only one word comes into my simple little mind and that
word is FAITH!

I have always turned to Mary with many of my thoughts and
prayers. She knows the ache of a mother's love for her child.....
and her whole life was guided by her FAITH....
What a role model!

Hollister has been seizure free for 11 days. I hate to jinx
it...hoping his meds are slowing the seizure activity....

Tuesday, I noticed a big nasty change in Hollister. He was
very weak. Didn't walk at all in therapy. When we got home
he was even having a hard time holding his head up. I kept
saying he doesn't look good. He started throwing up on
Wednesday...and continued to look so far away, tired and weak!
Thursday was more of the same.....I kept saying he looks
stoned....So, I adjusted his Keppra, thinking he might be
over served since we just upped it, to slow down the seizures....
Finally, Wednesday night...I had and epiphany...Dilantin...
I bet his dilantin level is high...toxic!!! poison!!!
Last week when he had lab work, it was 17...high normal!!
So, it would make sense that it could be high...
I with held it for 24 hours, hoping he wouldn't have any
big seizures...or stroke...
So far so good.
Haven't noticed any big changes but I am hopeful today he
looks better!!

My brain is tired from all of the extra thinking...haha

Don't have big plans for the weekend. Hoping to get out
to enjoy the sunshine!!!

May your Easter baskets be filled with jelly beans and malted milk ball eggs....

Team Tough loves Easter!!!

Wednesday, April 1, 2009 1:33 PM CDT

If every fool wore a crown, we should all be kings.
~Welsh Proverb

April Fool's day....

Boy am I glad that March is over....
Certainly went out like a lion.....

Winter needs to be over now until Christmas....

It is good for the soul to see the grass green and buds on
the trees!!! I love to see the plants starting to grow. It
is so exciting.
Won't be long and we will be planting our tomatoes!

Hollister continues to struggle. Seizures are out of control.
I feel so sorry for him, seizures are very very exhausting.
It is exhausting for my little brain...ha

Hollister had some blood drawn yesterday, what a disaster.
It was miserable for both of us!!! Hollister was very very
mad and I didn't blame him...At that moment I was wishing he
could curse at them, bite them, or maybe kick them.....
Anything to defend who he is......
Let us remember....he is still very much Hollister!!!!

Physical therapy has had some good moments and some very
stubborn Hollister moments. Karen is so good with him, if
he only worked as hard at therpay as he does trying to get
out of it....He is definetly stronger and more alert....
most of the time.

Hillaree has had some good responses on her idea for
Team Tough t-shirts...She has had a couple of very negative
responses that HURT....I would like everyone to direct those
comments to me please!!!!!
Believe me, I have your answer...(and it can't be typed on this page!!!!)
I reminded her that MEAN PEOPLE SUCK!!!!

Hollister always loved April fools day. I think he liked the
idea he was the older brother and could "trick" his little
sister and brother....
Harrison has a lot of Hollister in him....He went to school
early this morning...hoping to get some of his classmates....haha

Team Tough is counting hours since the last seizure....
51 1/2 hours....a new record.....

Don't give cherries to pigs or advice to fools.
~Irish Proverb

Thursday, March 26, 2009 10:33 PM CDT

Hollister has had a pretty good week.
He has only had one ginormous seizure….
Unfortunately, Dick’s Uncle Vern died….
Did I mention, I hate cancer…..
Hollister made it to the funeral in Waterloo with Mom and Dad.
From what I have heard, he had a pretty good day.

If you haven’t guessed, this isn’t Mom…
it’s the little sister writing once more to report my findings!
It’s come to my understanding that some people at
Dowling Catholic High School feel Hollister Farrell
has been forgotten. How can someone who is still here be forgotten??????
I have been having trouble with this concept.
If Hollister knew this, think how heartbreaking it would be for him.
Hollister lived for and loved Dowling Catholic High School.
When Hollister was in high school, I can remember every Friday
night was game night for the Dowling Catholic Football team,
and the Farrell Family.
Thursday night was cookie night; mom would bake hundreds of cookies
every week for the football team….all four years!!!!!
I loved the smell of the house on those nights.
(I didn’t really eat the cookies it was more about the cookie dough for me. hahaha)
I can still remember seeing him on the side lines every Friday night….
I loved seeing him out there because that gave me bragging rights.
I could say "look that’s my brother out there!!! Where’s your brother?" He was so happy!!!!

My mission as Hollister’s little sister is to remind everyone just how great he is.
I am bringing him back in to people’s minds and people’s hearts.
We are TEAM TOUGH!!!
I have been approached by kids at DCHS who don’t have T-shirts…
or they have worn out…
We all know how much high school kids love t-shirts…….

SO, I have come up with the idea that I am going to make and sell t-shirts.
I am putting this out there to see how many people are interested.
I am sad to hear that he is forgotten and people don’t know who he is
and that I am his SISTER....
This is my way of bring him back in to people’s mind
and hearts.....
Right now I just need to know how many people would be interested.....
HOLLISTER FARRELL IS STILL MY BROTHER
AND HE WILL NEVER BE FORGOTTEN!!!!!!!!!!

We are Team Tough!!!

I’ll post more later when I find more things out.
(Please let me know if you are interested)

Friday, March 20, 2009 11:25 AM CDT

Finally spring has arrived!!!
The spring weather has been awesome. I have had Hollister
out on the patio. What a treat in March!!!!

Hollister has been off of the phenobarbitol for over a
month...It was Friday February 13th....So last week on
Friday the 13th, was a month...

One word to desribe it.....HELL...
What was I thinking and why did I agree to it....

He has had more seizures in the last month than he has
in the last 10 years.
Every kind of seizure...I think he has even invented new
ones. I have never seen so many....WOW
They seem to happen anytime of the day and night.
He is keeping me on my toes....
Remembering how much of each drug I have given...
I didn't work this hard as "payed" nurse...anywhere..

He has also been fighting a cold/virus. It has kicked him
in the butt.

BUT......

When he isn't seizing or sleeping it off, he looks good!!!!
He is more alert, awake, interactive, smiley, happy, cooperative...
all good things!!!!!
He is eating some icechips and drinking coke!!!!
He is strong, stands well, taking steps, and overall more
like Hollister. I see a sparkle in his eyes and smile that
reminds me why we stopped the phenobarb!

Today is the last day of spring break for Hillaree and
Harrison.
They are always so sad that we can't go anywhere.
This is one of those times when what has happened to our
family really gets to them. I forget how hard this all is
on them. I have heard more than once how much this all sucks.......
I couldn't agree more!!!

Spring is nature's way of saying, "Let's party!"
~Robin Williams

Monday, March 9, 2009 12:06 AM CDT

Happy Happy Birthday to Hollister.......

Friday, March 6, 2009 10:49 AM CST

The sun is shining bright this morning and Hollister and
I are grateful!!

Hollister is sitting at the table with me, of course we
are watching the end of the "Rice is Pright". Every now and
then he lifts his head to chuckle....

The word of the week is STRUGGLE.....
I appear to be struggling with everything.....

Hollister's seizures continue. Tuesday was one of those days.....
He did good in therapy, but he was having a ton of myoclonic
jerks....
Went to get his blood work afterwords....One stick...way to
go "Spiderman" Steve!!!
He was very jerky and even had a seizure before we got to the
car!
At home, he was sitting in the chair and he had a huge
grand mal.....Meds and diastat given and he was out on the
couch. He slept for 6 hours, we got him up and took him
to bed and he slept all night!!!!

HIs labs came back, his lactic acid was 9.5....should be
0.1-1.2(I think, hard to remember the last time his was
normal....)This tell me he worked hard in therapy and is
having a lot of seizures....

Yesterday, Hollister had an OK day. He was very very tired
at therapy. Karen did get some good work out of him. She
is a trooper with him!
But, he did great helping me get him in and out of the car.
We did have a mishap leaving therapy. I always remind him
that he needs to help me...and he tries! Somehow, he took
a really big step that I wasn't ready for, I tried to set
him on the seat, we missed he was almost on the floor...
in a ball, went down hill from there. He ended up on the
muddy wet floor of the parking lot...he was terrified and
wouldn't help me pull him up....Finally, I found a parking
attendent to help me stand him up and start over.
I couldn't wait to get in the car and cry.....

We did get home without incident and sat out on the front
porch in the sun....felt good, I believe for both of us!!!!

This is all part of the struggling. I know as Hollister's
birthday approaches, the more anxiety I feel. His birthday
is Monday.....
It has made me sad to the center of my being....
and angry!!!
Sad, angry, struggling equals...CRYING!!!
Yesterday, I don't think I have ever been this
angry at God....We maybe...I guess only Father Kirby would
know, and thank you for reminding me that it is OK to be
angry at God...usually I am angry at his GOD....

I guess mostly, I am at a loss...
I know God has already forgiven me, now I have to forgive
myself....

Hoping to get Hollister out in the sunshine today...
will be good for both of us!

Team tough struggles......

Tuesday, February 24, 2009 9:58 AM CST

Not sure where the time has gone, why I didn't get a note
posted....

I do know Hollister and I are very very tired of winter.
Thankfully, we have had a few nice days to keep us all going.
The hope of spring is around the corner for all of us!!!!

The cold keeps us in the house. Hollister loves to get out
and we wanted to get him to some basketball games at DCHS...
but it seems to get so cold when that sun goes down, that
we don't take him out much.
We especially wanted get him to freshman girls game. Those
girls have gone out of their way to think of and pray for
Hollister. It is so heartwarming for me to know that Hollister
is still apart of the high school he loved so much. He was
always so proud of his Dowlilng!!!!

Hillaree made it through her Kairos retreat. Dick and I both
were able to be at the pray service when the kids got off the bus.
It has remained apart of her life. She continues
to talk about it and grow from it. Her relationship with God,
has grown....and it is very noticeable!
I so badly wish there had been something like this when I was a junior.

Harrison is busy. He finished basketball, Hockey and wrestling are still going on.
He is about to start baseball, soccer, and track.
He is also busy with his confirmation preparation.
Play practice tonight and tomorrow
go until 8pm...and the play is this weekend. He has worked
very hard learning all of his lines.
We did get him registered for high school. Seemed very creepy
for Dick and I to be registering our baby for high school.
It didn't seem that long ago we were sitting there with
Hollister.

Hollister is off of the phenobarbitol. It has not been easy.
He has had a lot of seizures. It has been very tempting to
restart it...So, I had to get the surplus Phenobarb out of
the house.....haha
Last Wednesday, Hollister had an appointment and examination
at the MDA clinic...For all who donate money to the telethon,
this is where some of it goes...THANK YOU!!!

Unfortunately, when we got there at 0800...he was seizing!!!
CRAP, CRAP, CRAP!!!
I wanted so badly for them to see what I see.

Hollister got to meet with a Neurologist and he was awesome.
What a great resource right here in Des Moines. Wish, we had
met him in 2006!
He was glad we were getting off of the phenobarb. He could
see that Hollister was seizing and would be happy to listen
to how I think he is doing....WOW!
He was interested in Hollister and his mutation, that it
is MELAS....He reminded us it is very rare to find a patient
with a true MELAS mutation. Wanted to know exactly how we
know it is MELAS....Lots of metabolic biochemistry.....
He was very interested!!!
We also met with an occupational therapist. She did an
examine the best that she could...Hollister was very tired
from all of the seizing!
We saw a PT that already knew Hollister from Blank, Christie....
She came and visited but said she would leave him to Karen.
Lucky for Hollister his SPT, Shawn was next in. Hollister
worked with Shawn for the first 6 years of his illnes. It
was great to see him, sad Hollister was so rough...He had
a couple ideas to share with Blank...
We are hopefully, going to be adding some OT back into
Hollisters weekly therapy.
The neurolgist agreed with my thoughts on the MELAS....
When Hollister was first dianosed, Dr. Whiteman at the Mayo
clinic, told us no excercise....6 months later, the research
had shown that aerobic exercise for a MELAS patient was
optimum....The good mitochondria reproduce fast with exercise...
So, my thoughts the last year has been that if his MELAS
is stable, then why aren't we working him as much as he
can tolerate....
It was a good visit and we will stop back in 6 months...

We did take the boys up to the ISU/Minnesota wresting
meet Friday night.
It was the Beauty and the Beast...Wrestling and gymnastics.
It was fun...I think Hollister had a good time and enjoyed
being at Hilton collesium. He was very alert and happy.

Hollister has caught a littl cold, everyone here has had
a little something...so I am not surprised. He has a lot
of junk...and it is making him vomit....this is no fun
for anyone!
Hopefully, it will stay just that....a little something!

Therapy this afternoon, hopefully he will be ready to work
hard for Karen!!!!

Team Tough is STRONG!!!!!

Friday, February 13, 2009 10:35 AM CST

Third time is a charm...I hope!

This is the third time I have written a note. I am hopeful
I will get it posted before something happens to it. Not
sure it if is the computer or the computer operator...haha!

Lots going on!

Friday the 13th!
I marked this day during our visit with the Neurologist at
the Mayo Clinic. Hollister is weaned off of the Phenobarbitol...
This morning, he will not get a dose.
I am as nervous as I am excited for him. I guess I will have
to wait to see what happens.....
I am hopeful he will not have seizures.
I am even more optimistic that his brain will start to come
out of the fog!
I miss him terriblly and I am willing to try anything to help him!

Hollister is certainly more awake. He is sleeping less and
is more interactive. He had a good week at therapy.
Karen worked him hard both days.
She had him on the floor yesterday, he was on his tummy (which he hates...)
and he even kneeled on his knees and stood up from that position.
WOW...
and them he walked in the pacer.
None of this is pretty and he certainly complains A LOT....
Karen is as committed to helping Hollister as I am.
She continues to be encouraged.

On Tuesday, Hollister was lying in Hillaree's room.
It was time to start a feeding and was awake and ready to get up..
I stepped out of the room for a second to get Hillaree...
When I came back in Hollister was sitting up at the side
of the bed, laughing. I couldn't believe my eyes...
It was amazing...I was laughing and screaming. Hillaree and
Harrison came in and we were all celebrating!!! I immediatly
called Karen to let her know what our boy had done....
She was just as excited.
Getting to sitting position takes brain and muscle control!!!!!!

He looks good.

Hillaree is at Kairos this weekend. (The junior retreat)
She left yesterday and will be home on Sunday. I am
already missing her. This retreat is suppose to be life
changing. I am anxious for her to come home. She was very
very excited to go.

A thank you to the kids at Jackson middles school...
In my friend Mrs. Johnson's class. Thank you for all of
the notes you send to Hollister. He loves them. We really
appreciate all of your kind words. The valentine card you
sent was great...Thank you Thank you!!!!

Happy Valentines day!!!

Team Tough is strong because of all of you!!!

Dick has a vey big birthday on Sunday.....
It is a zero birthday.....

Wednesday, February 4, 2009 2:28 PM CST

In reality, hope is the worst of all evils,
because it prolongs man's torments.
~Friedrich Nietzsche, Human, All Too Human, 1878

Take hope from the heart of man
and you make him a beast of prey. ~Ouida

Hope deceives more men than cunning does.
~Vauvenargues, Reflections and Maxims, 1746

Things which you do not hope happen more frequently
than things which you do hope. ~Titus Maccius Plautus

Hope (from Webster)
a feeling that what is wanted will happen......

Re-defining hope,
the Mantra of the UMDF(United Mitochondrial Disease Foundation)

I have used the word hope daily if not hourly the last seven and half years...

It seems that Hope was the only option.....
When Hollister had his first stroke and was diagnosed with
MELAS, the doctor's all had very little hope...

I was told that IF I could keep him organ healthy for 10 years.
that HOPEFULLY, new research will find something, a way to
help Hollister....

Once you choose hope, anything's possible.
~Christopher Reeve

Throughout Hollister's illness, I have remained Hopeful.
I do what I do everyday, because I believe in him.

Lots of horrible, hope defeating words have been said....

The Radiologist on August 11, 2006...The day after he
perforated Hollister's jejuneum....When he started to talk...
I really thought, he was going to apologize for the
horrible thing that he did....
But NO!!!!

In his arrogance, he told us that "Hollister's brain looked
worse that a dead, drowned patient!" and passed out copies
of the MRI so we could see it oursleves...
The staff and physcians who were there didn't stop him from
hurting Dick and I.

Where was the hope????

The Mayo Clinic...Domitillo 2...
The brand new 3 million dollar unit...
So proud of the fact that they treated President Reagan....
but, a 19 year old having a seizure is ignored until he is
in status epilectus and we called our doctor outside of
the Clinic(at home in Rochester)...to get help..
Again, we were told that Hollister would die.....

Where was the hope????

When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown

MELAS is so unknown. I am always shocked by the fact that
there are Doctors and nursed who are not the least bit
curious by Hollister and his disease.
You can't imagine how many ridiculous things have been said.
I guess it is easier to be ignorant than educated and informed.

Where is the hope????

Re-defining hope....From the UMFD...I am not sure exactly
what that means to them....From what I have seen, hope is missing.

Through Hollister's entire illness, I have felt nothing but
hope. I look into his eyes and I see hope. He is the most
inspirational soul I have ever known..
He has worked harder than anyone. He graduated from High
school with his class. He earned academic honors. As Hillaree
can tell you DCHS doesn't give those away...

He lives hope everyday.
I am inspired and hopeful because of him!!!

I continue to wean him off the phenobarb. He is down to 25mg
twice a day. He did have three seizures last night.
He is keeping me on my toes....

Hollister didn't make it to therapy yesterday. It was just
cold, darn cold...Didn't make any sense to take him out on
a day like that.

He does appear to be more awake and alert, he is trying to
talk more, I have even heard word like sounds....
He looks good!!!

You've gotta have hope.
Without hope life is meaningless.
Without hope life is meaning less and less.
~Author Unknown

Team Tough will always have hope!!!

Love floods us with hope. ~Jareb Teague

Tuesday, January 27, 2009 3:53 AM CST

Where did January go????

Hollister's appointments at the Mayo Clinic were a mixed bag.

His ultrasound and lab work went off without a hitch.
Blood draw, 2 sticks...
Even our trip up to the business office went great. Usually,
there is great frustration for us. She took our paperwork,
smiled! and said looks good!
I almost choked, remembering the last 7 1/2 years, how I
have been badgered to near death over his account....
That was all on Wednesday, Dick and I were shocked how smooth
things were going....

Thursday it was 50 below zero....which is about 130 degrees
from comfort.

Our first appointment was with genetics. I noticed our new
geneticist was no longer listed on the wall. This can't be
good....
First words out of his mouth...I am moving to Greece......
I reminded him last year when he came, that he promised he
would be here a long time...Last year, it was just as cold
and he reassured us that his wife would be happy there....
Guess what, she hates it in Rochester....big surprise!

Again this leaves Hollister with no Doctor to monitor his
disease. CRAP!

On to gastroenterology. I do like Hollister's doctor.
Hollister was sleeping and couldn't wake up. Not the impression,
I was hoping for.
His gallbladder still needs to be removed. The stones and
polyps are the same...meaning the Urso forte hasn't worked.
We will keep him on it, hoping for results.
I told him, I didn't want him to have surgery now. Winter
is very hard on Hollister. His left lung would cause problems.
I am fearful he would be in the Hospital until April....
He agreed...
He again reminded me to keep a very watchful eye on Hollister.
He can't get sick with his gallbladder, would more than
likely be fatal...
Will re-check on 6 months!

The neurologist was next on his visit list.
This was our second visit with him. The geneticist wanted
us to see him, he is newer to the Mayo Clinic. I like him,
I think......We haven't had to deal much with him because Hollister
has not had a crisis....
A resisdent did the assessment and history update. He was
shocked as to why he was on 5 seizure medications. I know,
so I filled him in on decisions and changes that happened
in 2006.....He was updated but confused....
When the neurologist came in, Hollister was kind of awake.
He thought he looked good, even better than this summer.
Progress is happening and continued therapy is a must.
He is hoping we can get more....
He and I talked about the 5 seizure medications. When we
talked this summer, he said "don't fix what isn't broke"...
but, now he was thinking something needed to be eliminated.
Wondering if this will help him to "wake up"?

I am weaning him off of the phenobarbital....
This is very stressful...
He had seizures on Friday night, Saturday morning, and
a series of three on Sunday night.
It will take 6 weeks, Friday the 13th hopefully, will be
the last day of the Phenobarbital.....

No pressure....no doctor, watching his health for gallbladder
symptoms and weaning off a seizure medication.....

Enough winter for me, Hollister and I miss getting out
of the house!

Team Tough continues to need thoughts and prayers...

Wednesday, January 14, 2009 9:15 PM CST

Freezing Cold...
School has already been cancelled for tomorrow.
Hillaree and Harrison are not sad...

We are in Rochester and it is even colder here.
Not that it matters once it is below zero...
It is cold!!!!

So, for all the people that were complaining about the
HEAT this summer, I guess this is for you!!!

I hate that we have Hollister out of the house.
This is when we need to stay home, too many sick people!

We came up yesterday. He had his lab work and abdominal
ultrasound today. Tomorrow he will have his appointments
with the Doctors....
We were suppose to come last month...too many Doctors go
out the country, or home for Christmas...
Appointments in December are better than in January...
Thinking of Insurance...it all starts over....

Good news today for my Mom...
She had her scans this week and her check up today...
NED!!!!!
God is good!
She was thrilled this morning. Hard to imagine where she
was two years ago...
I am very very grateful!

Team Tough is cold....

Think good thoughts for Hollister tomorrow...
It would be a good thing if the Doctor's could see
what I see...

Thursday, January 1, 2009 0:00 AM CST

HAPPY NEW YEAR!

9 has always been Hollister's favorite number,
only good things this year!

I am sitting here with Hollister. He graciously let me kiss
him at the stroke of midnight. Not sure it made him happy.
Sure made me smile!

Hillaree and Harrison are at parties with friends. I guess
the years of them hanging with us and running around the
neighborhood banging pots and pans are over.....

Dick and I watched movies with Hollister. He had a late nap
so he is still up sitting in chair next to me.

Hard for me to believe another year is over...
Where has the time gone.

2008, was probably less torturous than the previous years...

First and foremost, Hollister only spent 8, count them...
8 days in the hospital. That is a miracle.
Humbley, I thank God for that!

It is a gift, for him to be stable. He is strong.
I believe with my heart and soul that is he is trying to
get better.
His eyes are so clear and focused. He smiles and reacts
appropriately, I know he is there...
This is the year!!!

Dick continues to work at Metlife!
At the beginning of the year he asked his boss if he needed
to start looking for another job...he responded...WHY...
Dick brought to his attention that Holllister had spent
over $700,000 Insurance money in 2007...
and his response...SO!
So....... Dick lost two jobs over insurance...
It makes me sad, that Dick has to go to work everyday and
worry about keeping his job, because Hollister is sick.

Sometimes, the world we live in isn't very nice....

But, Kudos to Metlife...any business that uses Snoopy in
in thier logo has to be alright...haha

Sometimes I wish, I could keep Hillaree and Harrison home
with me...always.
Life, on the outside is sometimes painful.
But, I remind them weekly that I am not smart enough to
home school...haha

I have just spent my second year living as a shut in with
Hollister. My new winter hobby is squirrel watching. It is
amazing what they can do with an ear of corn...
Harrison likes to call the big fat one Herb....
I told him I can't name them....only crazy people name them...haha

Here's to the New Year and all the hopes and dreams that
come with it!!!

Team Tough is blessed!

Happy New Year!

Be always at war with your vices,
at peace with your neighbors,
and let each new year find you a better man.
~Benjamin Franklin

Sunday, December 28, 2008 7:55 PM CST

It is dark and cold outside and very quiet on the inside.

Hillaree and Harrison are out with friends.
Hollister is sleeping on the couch.

Dick is in the basement doing laundry(watching football)...
I am watching every move Hollister makes.

Hollister is fighting something. He looks very rough!
He has been sickly since Christmas. He is sleeping a lot.
Not sure what is going on. He has a gurgly cough which
makes him vomit. He hasn't kept in many calories the last
few days.
I am hopeful this will pass.......

Christmas was nice. My Mom and Dad came down and my sister
Jerri was here. It was a quiet Christmas Eve and Christmas,
but we were at home....and we were thrilled.
I did make it to Mass on Christmas Eve, was good to be there.
It was nice to see a few familiar faces.

Thank you to everyone who helped make our Christmas great.
I am amazed at all that continues to be done for us.
To everyone who stopped by, you brighted our Holiday.
I appreciate talkig to you all!!!!!

To the DCHS freshman basketball team....The blanket is
great. Hollister loves it! Your kind words brought tears
to my eyes as my heart overflowed. Knowing that a little
piece of Hollister lives on at DCHS is Mother's dream come
true. Thank you, for remembering him.

Looking forward to having the kids home another week.
It is so great having them and thier friends here. Our house
seems so alive!!!

Keep Hollister close to your thoughts, hoping that what
appears to be a nasty cold will not go to his lungs!!!

Team Tough as always needs lots of thoughts and prayers!!!

Wednesday, December 24, 2008 2:28 AM CST

Buddy the Elf:
The best way to spread Christmas Cheer,
is singing loud for all to hear.

I guess what we should be singig...let it snow, let it snow, let it snow!!!!

I love Christmas Eve, it is always full of excitment and joy.
As a child, this was the day we would FINALLY get to see
Santa...he would ride into to town on a firetruck(in Wesley...)
and he would pass out bags of peanuts and candy...
I'm not talking about a tiny little bag.....but a brown
lunch type sack full of goodies....It couldn't have been better!
I think back to the Christmas as a child...
What happy happy memories,
Midnight mass was a must...or we as the "little kids"
would get up, way to early! haha
I loved finally seeing the Creche and baby Jesus was in his cradle!

Santa, was always very very good to me...he never disappointed
and all the presents...I always assumed I must have been
very very GOOD!!!!haha

Christmas has always been about believing. I have never
doubted. Living in this house, it would be difficult not to
believe. Much has been done by so many....and grateful we
are. Seven Christmas Eve's and mornings have happened.
Believing is easy.....
not only in Santa, people,
and most importantly by God....

THANK YOU!!!!!!!!!!!!!!!!!!

I remember a few years ago, we took the kids to see the Polar Express....
Hollister didn't like it much.
He had so much trouble with the little boy, who didn't believe
in Santa because he hadn't seen him.
It disturbed him on a higher level, than I will ever be at!
He reminded me that "Believing without seeing is called Faith...."
No wiser words...

May this Christmas bring you warmth from all that you believe in!!!!

Team Tough is blessed!

"Backward, turn backward
O time in your flight;
Make me a child again
Just for tonight.".......Elizabeth Akers Allen

Merry Christmas!!!!

Monday, December 22, 2008 0:31 AM CST

Three days and counting....
Still need to get that shopping done,
fortunately for me...the stores are open very very very
late or very very very early!

It is just too darn cold to go out. This weather is no fun!
Hollister hasn't been out of the house for over a week!
Way to hard on him to be exposed to weather this insane....

Last year, Hollister came home from his 80 days of Hell
in the hospital on December 20. What a joyous day that was.
Thinking back to that time, Hollister coming home was a
real honest gift from God.
The gift of time is an added bonus.
I have been doing some soul searching.....
and I keep asking myself what have I done with the gifts
that I was given?

I thank God everyday! Not just for Hollister but for
Hillaree and Harrison and continued Health!!!

Hollister continues to look good. He has had increased vomitting.
I think it may be related to sinus drainage and secretions.
I am hopeful that it isn't the start of something......

Missing therapy is a problem. We have had him standing and
tonight he voluntarily took a step or two. It was awesome.
Unfortunately, he had on socks and slipped. Hillaree and
I were able to gently glide him to the floor. He was lying
face down. This turned out to be a bonus...Laying on his
tummy is good therpay. He tried to hold him self up on
his elbows...and it was a great stretch for his back....
so Karen will be happy about that.

He has enjoyed spending time with Hillaree and Harrison.
Last night they had him sitting at the table while they
were on the computer and he had a good time. They were
showing him funnies on You-tube. It was as good as it gets
here!!!!!

Team Tough is blessed!

Wednesday, December 17, 2008 1:50 PM CST

A quiet day at home...haha

Hollister is loud, very very loud.
Just this week he found his tongue....
and he likes sticking it out and running it over and over
his lips...all while yelling and sometimes laughing!!!

In my very small brain...I think finding his tongue is a good sign...
I am hoping he will soon discover how to use it...talking and
eating!!! (two of my favorite things...haha)

He has been more alert and awake, it seems like he is
requiring less sleep. I think this is good....
He is still strong and standing and moving easier.

His hands are still fisted most of the day. I am constantly
opening them trying to get them to relax....This I believe
is from his brain and the injury....

Yesterday, Dick and I went to the Candlelighting cermony at
Dowling...We had planned on taking Hollister but it was
miserable, 5 degrees and snowing.
Candlelighting is the last thing the student body does together,
before finals and Christmas break.

The music, the prayers, and the baskets for the families that
they are helping...53 this year....
It is always very emotional for me...
This year as I sat there, I couldn't help but think....
(and we all know how hard thinking is for me....)

Candlelighting reminded me..again, that Christmas is about
preparing for Christ...not only the anniversary of his birth,
but a place in our hearts all year long.....

With a week to Christmas, hopefully we will all be reminded
what we are celebrating and why!!!

In this house, we will be busy...getting a tree, baking,
shopping, wrapping...
and hopefully, we will all keep the spirit of Christmas in
our hearts!!!!
Weather permitting!!!haha

Friday, December 12, 2008 5:56 AM CST

Friday......

Hollister is up and ready to go...
Where, who knows...
I reminded him, he hates mornings and I doubt he has ever
voluntarily seen 6am in his life!!!!

Still too dark and cold to be up!

Hollister had a good day yesterday. He did well in the
shower for me. Seemed to tolerate it better than ususal!

Therapy was GOOD! He stretched easily.
When he walked in the pacer, he walker 90 feet!
It wasn't pretty, but with a little help from Karen he
did it! It was awesome!

He was tired when we got home. He did get a well deserved
nap, almost napped into bedtime!
Which, is why he is up and ready to go. He is rested....

Harrison had an Advent/Christmas program last night.
Usually it is just the little kids but last year, I think
a middle school program was started.
I did make it last night....It was fun.
A flood of memories came back of years, 17 to be exact,
of Christmas programs past!
I remember 14 years ago, when Hollister was in the 2nd grade.
Dick's Mom and Dad made it to the afternoon performance of
the program....
I remember how much Ed(Dick's Dad) enjoyed watching those
little kids.....How proud he was of Hollister!
He died a few days later.....

I did the unthinkable....
I went back in the journal and read entries from last year.
What a journey that was. Reading, made it all so real again.
What Hollister has been through. I couldn't stop myself and
went farther back and read and re-read. When there was no longer
journals, It is amazing how much I can remember from the
beginning. Holidays are difficult!!!
I guess, I am sad to know that they can never be the same
again. I will never look at a tree, or gift, or holiday treat
without wandering....would Hollister like this.....
I may never decorate a tree with ornaments from Christmas
past...never ever...
It is hard to be Merry knowing that "we" can never participate
in "Family" Christmas again....Too know that Hollister won't
be the first to sit at the table to play cards.....
I feel cheated in the fact that "we" didn't take advantage
of his good years, months, days, and hours.......
Sometimes it is all too much and too little......

Hollister is yelling and laughing very very loudly.
Whatever he is thinking is good thought!
He is very animated in his facial expressions and movements.

Truly, Hollister continues to inspire and amaze me...
He is a gift that I truly cherish......

Team Tough is.......

This Advent Season, ask your self.......

The essential question is not,
"How busy are you?" but "What are you busy at?"
~Oprah Winfrey

Tuesday, December 9, 2008 4:39 PM CST

Old man winter needs a gentle reminder it is still fall.
The rain, snow, and ice are a real treat...
Not to mention the COLD....
Taking Hollister to therapy is a joy with the elements!!

Hillaree and Harrison were a little disappointed that
school was only late this morning and not cancelled.
They did get to sleep in a bit this morning.
This was a real gift for Harrison, Monday nights he doesn't
get home from Hockey until 10:45...so two extra hours this
morning was a bonus for him!

Hollister did make it to therapy. Contemplated not going...
but decided that we better get there while we can. Who knows
what the next four months weather will bring.
He did well for Karen. He is getting stronger. He is definetly
more alert and appears to be listening and responding to her!
Not steps today, but he stood well!
He has said a few words, nothing I can write hear....
I think he used them appropriately...hahaha

Christmas is rapidly aproaching. We need to get busy in this
house....getting a tree, baking cookies...oh and starting
our shopping!

Plenty of time!

Team Tough continues to be strong because of all of you!!!!

"We elves try to stick to the four main food groups:
candy, candy canes, candy corns and syrup." Buddy the Elf!!

Friday, December 5, 2008 2:20 AM CST

It is somewhat poetic, I am sitting here in the dark,
looking out at the snow on the ground and the world is
quiet, expect for the radio playing Christmas carols....
Neil Diamond is singing O Holy Night....it is beautiful...
but somehow just not right!

Hollister is choosing to be awake tonight. I thought maybe
he would like the music. I remember when he was so sick
last year. He was intubated and very very restless. I
turned the TV changer to music..and it was Christmas music.
He appeared to settle down to the music....
We have had it on most days. I truly believe it is familiar to him.
I love Christmas music...and sing along to most of the songs....
that, I believe is questionable wether he likes my singing!!haha

Hollister had good therapy days this week. He is definetly
making some progress. Tuesday he took a few steps with Karen
and I, without the pacer. He stood tall and proud!
Today he stood and took a few steps in the pacer without
the saddle to support him.
He also didn't fuss as much when Karen stretched and stretched him.
It is a relief to see some progress...therapy need is based
on progress.

He appears to be listening and making some appropriate moves
and eye contact. It seems to me that he is trying to
verbalize more. Hopefully, this will continue and Karen will
see what I see!
Tonight, I took Harrison to Basketball practice, when I walked
in the house...I could hear Hillaree and Hollister laughing...
not just laughing, when I saw them, they were looking at the
computer. Something on You-tube was "Hillaree-ous..."
Hollister was leaning in toward her, it appeared he got
what she saw and they were laughing and giggling together!
It was awesome...
Thinking about it now, makes me warm!!!!

No big plans for the weekend. It appears winter is here to say.
More snow coming........

I couldn't resist this Christmas Joke....
Made me giggle!

2008's First Christmas Joke

Three men died on Christmas Eve and were met by Saint Peter at the pearly gates.

'In honor of this holy season' Saint Peter said,
"You must each possess something that symbolizes
Christmas to get into heaven."

The first man fumbled through his pockets and pulled
out a lighter. He flicked it on.
"It represents a candle", he said.

"You may pass through the pearly gates: Saint Peter said.

The second man reached into his pocket
and pulled out a set of keys.
He shook them and said, "They're bells."

Saint Peter said "You may pass through the pearly gates".

The third man started searching desperately through
his pockets and finally pulled out
a pair of women's panties.

St. Peter looked at the man with a raised eyebrow
and asked, "And just what do those symbolize?"

The man replied, "These are Carols."

And So The Christmas Season
Begins......

Monday, December 1, 2008 3:18 AM CST

December 1st, hard to believe.
It certainly is begining to look a lot like Christmas...

Thanksgiving came and went. It was harder than I thought.
Hollister has spent several Thanksgivings in the hospital
but the thought of what went on last year, was still hard
to imagine.
It has been difficult to find words....

We did have a nice day, very laid back at home. No big family
gathering to attend, just home sweet home.
We did make a trip down to Mercy pediatrics. It was very
cathartic for me, to remember where we had been last year.
It was nice to hug those nurses and say THANK YOU!

We have so much to be thankful for this year!!!

Thanksgiving last week, we are grateful and thankful for all the support given to us.
The last seven years have been very difficult for us.
We appreciate all who have cared for our family.
It is a wonderful feeling to know that you are continuously there for us.
It is great to feel the reassurance and support during difficult times.
We feel very fortunate to live in a community that hasn't forgotten us.
Many have gone out of thier ways to help us and make sure
we always have what we need.
Thank you to those who are always thinking, praying and lovingly remembering us!!!
Thank-you.
God is Good!!!.....all of the time!!!!

The rest of the weekend was good.
Hillaree and I headed to mall at 1200am Thursday night/Friday morning.
We had a ball. We stayed until 3:30am, then drove around town
looking at everyone standing in the cold... We laughed and laughed.
Didn't get much shopping done but we had a very good time.

Friday night we went down to the tree lighting party at the
ice skating rink. It did get cold but Hollister was dressed
very warm. Hillaree had a good time skating. Then we headed
over to the Festival of Tree's. Child-life's fundraiser
for Blank Hospital. FUN, what a neat event. We had never gone.
Next year, everyone needs to go, I will remind you!!!

Saturday and Sunday we didn't do much...

Hollister looks good. He is getting stronger, I can tell
by how well he is standing. It is getting easier for me to
transfer him by myself! His lab work last week, for the most
part was NORMAL!!! I cheered and reminded myself how thankful I am!

Looking forward to an Advent season at home!

Gratitude is the best attitude. ~Author Unknown

Saturday, November 22, 2008 10:48 PM CST

Why Being Thankful
Is Such A Great Thing

This collage of pictures is
what I am most thankful
for this year.....
Family,friends, and life at home....
Oh yeah...and G-ma's homemade noodles!

An Inspirational Poem
Be thankful
By Author unknown

Be thankful that you don’t already have everything you desire.
If you did, what would there be to look forward to?
Be thankful when you don’t know something,
for it gives you the opportunity to learn

Be thankful for the difficult times.
During those times you grow.
Be thankful for your limitations,
Because they give you opportunities for improvement.
Be thankful for each new challenge,
Because it will build you strength and character.

Be thankful for you mistakes.
They will teach you valuable lessons.
Be thankful when you’re tired and weary,
Because it means you’ve made a difference.

It’s easy to be thankful for the good things.
A life of rich fulfillment comes to those who
Are also thankful for the setbacks.
Gratitude can turn a negative into a positive.
Find a way to be thankful for your troubles,
And they can become you blessings.

You can see I have so much to be Thankful for!
Especially this year, My family is home
for the Holidays.
What are you Thankful for this year?

What time is Thanksgiving dinner?!?!?!?

Happy Thanksgiving……
Hillaree

Thursday, November 20, 2008 12:18 AM CST

Thanksgiving is one week from today....
It is time to start thinking about how lucky we all are
and how much we have to be grateful for.
There is no one who has more to be thankful for this year
than me....
I am very grateful for another year with Hollister.
This next week I am sure I will be reflecting on a lot of
why I get to be thankful at Thanksgiving....

Actually I have been given 7 years with him....
I remember the first time Hollister was sick.....
and he was in the PICU at St. Mary's.
I remember standing at his bedside after a week of him being
so sick that he couldn't wake up...and no one could gaurantee
that he would wake up.
I was holding his hand whispering to God....
Please let me hear his voice, I can't remember his voice,
Please God....five minutes, please just five minutes.
Five minutes God please five minutes...
At that moment, you can't think to ask for a lifetime when
5 minutes seems so long....

Well Thankfully, God did listen and he gave me much more than
five minutes...
If I had wits about me, I would have asked for 5 million
5 minutes...

We all have so much to thank God for.
Today is my Mom's birthday....I am very thankful for another
year with my Mom, not sure what I would do without her!!

Hollister continues to look good. I hate to jinx him but he
does look good! Therapy this afternoon. He is resting now.
The shower this morning wore him out!

Harrison is headed downtown. The state Mock trial starts
today. His team made it through regionals and compete tonight
and all day tomorrow.....

One week till Thanksgiving.....

Nothing is more honorable than a grateful heart. ~Seneca

Tuesday, November 18, 2008 9:41 AM CST

The sun shining is very deceiving...
It is COLD out there.
Fall is blowing away..
the leaves have all been raked, pumpkins eaten by the squirrels,
and Thanksgiving is around the corner......

Lots of ups and downs here.

Hillaree is done with swimming and diving. She worked very
hard this year, lots of improvements...We are very proud,
she earned a varsity letter. DCHS is not know for giving
them away. She worked very hard and earned lots of points
this year.....We were so looking forward to the "pity"
letter that all non-lettering seniors get after 4 years of
hard work...Hill and I have been preparing for a pity letter
since day one..haha now our dreams are shattered...I guess
there is still track.....
Hillaree has done well and we are very very proud!
She is now coming home after school...
seems very very strange to see her so early!

Harrison is busy...Hockey, wrestling, and Basketball.
CRAZY...He is playing basketball on his 8th grade team at
St. Theresa...with his classmates...one last time!
Wrestling, he will start practicing with the high school
team today...This should be interesting for him. The good
thing is he will get good coaching advice and wrestle with
kids his own weight..This is his choice....
It is hard to get all the practice times straight.
I worry that he gets enough good calories....
We will see how he handles it all...

Hollister continues on the roller coaster.
One minute he looks good and the next he is seizing and
looks terrible! My job here is not getting any easier.
We are still going to therapy on Tuesdays and Thursdays...
Winter makes it so much harder for us to get him out...
safely.

I am going to try and answer a couple of questions that
have come my way.....

Hollister is living at home.
I take care of him 24/7
No, we do not have help in the house or a nurse...
(not sure where that would come from)
I think he does like to go places...
No our house is not handicap accessible
No he doesn't talk
(I like to think I hear an occassional word...
but I do belive his non-verbals are very good)
No he doesn't eat food by mouth
No he doesn't walk,
with help he is able to to help transfer
Therapy is keeping his muscles stretched and strong
No he isn't able to use his hands, other than to fist them
I am not sure how much he sees and hears
He has had 6 big strokes
MELAS...
Mitochrondrial Encephalopathy lactic acidosis and strokes
He takes a LOT medication, too much to count!
Yes, he did graduate high school and took classes at
DMACC the community college here.
Because Hollister can never be alone is why you don't see
both Dick and I at events...If we are there, then more than
likely it is Hillaree who is with him.
He is happy and smiles alot
He likes to be around people and he likes his dog hooch
He likes his I-pod and music
He likes to stay up late and sleep late or all day
I am sure he is in there and has lots to say
I do believe he knows what is going on
Yes, this is hard on all of us, we miss the
Hollister we knew and loved for 19 years!
I do believe he is making progress, I see small gradual
changes.
He reminds us all each and every day....
Live life......

He is tough...Team Tough!

Prayer does not change God,
but it changes him who prays. ~Søren Kierkegaard

Friday, November 7, 2008 12:33 PM CST

What a week it has been!

The weather went from wearing shorts and a sweatshirt to
the DCHS football game on Monday night...to snow flurries
today...

At the beginning of the week, I reminded everyone how hard
this time of year was....especially certain days on the calender.
As much as I was dreading this week, I never expected to get
a GI bug that knocked me for a loop for most of the week...
Crazy, when you feel so bad...your brain does not work...
and all you feel is sick so you don't have time to feel
any emotions...
Poor Hillaree got sucked in with me.....
Wednesday was no good for anyone, especially Hollister...
He was his own most of the day...haha

Hollister looks good. I am hopeful that he doesn't get what
Hillaree and I had...Won't be good.

Through all of my self-pity...some pretty amazing things
happened....

Harrison had a big week....He got an award from the Optimist
Internationl Friend of Youth.
It was a nice luncheon and award ceremony. Nice things were
said about the winners of the kids from schools from all over the
city.
Congratulations to Harrison and Micah Purcell winners from STS.

Wednesday was the Mock trial competition. I had planned on
attending...but Mr. GI bug had other plans....
So, I was very hopeful they would qualify for
competion on Thursday....Only 14 teams would make it!!!!

Last night he and his team did indeed compete. Dick and
I both made it. It is so exciting. As a mother, it is
harder to watch him compete in Mock trial than any sporting
event. Holy Trinity was the other school in the trial.
Holy Trinity is in our neighborhood and a lot of his
friends go to school there. The football team he plays on
is the Colts...which is Holy Trinity and St. Theresa....
Both teams did well and Harrison's team did win....
He did the closing for his team and he did a great job....

Thanks to Mrs. Critelli the St. Theresa's team is going to
the state competition...These kids are 3 for 3 in middle school.
What an awesome group of kids...I am very very proud.

and this moring on Harrison's door, (he has a dry erase
board that he write messages on)...
He wrote...
If what you did yesterday still seems big to you,
you haven't done much today.....

Looking back 7 years....
I had no idea what to expect with MELAS....
I used to think of all the things that could happen.
I never once thought he wouldn't be able to talk or
communicate...
Never once did I imagine a Hollister who couldn't express
his opinion, argue, or tell me he loves me.....

I am very very thankful to God and his Doctor's, Nurses,
and therapists for loving Hollister and taking care of him.
Most importantly for giving him the diginity he deserves to
continue to fight and strive to live each day.
He is my Hero!!!!
We are Team Tough!

Hollister would always remind me that the #7 is the perfect
number in Christ!

DCHS plays Valley tonight in the playoffs...
Is wet, cold, and snowing....Dowling's number one fan will
be listening on the radio...
What do we eat????? Tiger Meat...Tiger Meat!!!!

GO Big D!!!!!!

Monday, November 3, 2008 4:26 AM CST

Is has been a beautiful fall weekend here.
Lots and lots of leaves...

This time of year is very emotionally hard for me.
When the playoffs for football rolls around. My heart
and my mind start to ache!

Hollister was the football manager(not waterboy...haha)
for the DCHS team. Tonight, like that Monday night seven years ago,
they were playing a game.....
On the radio, the boys were talking about Hollister and
how they were thinking of and playing for Hollister....
He never heard those words...but they were music to his
parents.
That team went on to win the state championship..for Hollister!

Seven years ago this weekend, Everything stopped....
and it seems like it happened yesterday. On Saturday,
7 years ago Hollister and Harrison went to the Iowa State
game....Harrison was in 1st grade and Hollister a freshman..
Hollister had season tickets with my Aunt Joan...
It was the Missouri/Iowa state game. It was a beautiful day
for a game....
He went to all the home games, a friend of ours gave him a
ride..and we never thought about it..He loved it and knew
his way around the stadium he had been to many many times.

Late in the afternoon, I picked Hillaree up from Nutcracker
Ballet practice and we walked in the door...Hollister was
sitting on the couch..His eyes were in the corner of his head...
This had been going on, since the ride home...
Some kind of seizure activity...

We watched and waited....The activity increased over the
next couple hours....finally at 7:30 I called the Neurologist...
He said to give the Diastat...(rectal valium)
(believe me, none of this was easy, he was a mess, we tried to
shower him, we were beside oursleves..not knowing what was
going on.)

I did and I was proud!!
He slept.

We ordered pizza and ate dinner while he slept...
thinking he was better and would sleep all night....

WRONG!!!

10 pm he was awake, disoriented and puking....
It was a very long night. Hollister and I slept on
the living room floor. What little sleep there was.....

In the morning, we got him up and we were walking him to
bed..I was holding his right arm/hand...and he said....
"Mom. where are you, I can't see you".......

We immediately called the Neurologist and headed to the Blank ER......

Lots of lab work, tests, lumbar punture...10 hours in the
ER...

The morning an MRI was done of his brain...and he indeed he had a stroke...
a metabolic stroke...

He was then, 7 years ago on Tuesday life flighted to Rochester....

An unknown disease, with no cure, prognosis or treatment.

Hollister has endured more in the last seven years than
most in a lifetime.

I never imagined there could be a pain that hurts so bad...

Seven years later....I can't even recognize my life...

Fall with it's vibrant colors...
also brings virbrant memories.......

Wednesday, October 29, 2008 8:59 AM CDT

Seems like forever since I wrote a note.

There has been so much going on sometimes it is hard
to get on the computer.

Hollister is finally doing better, except that he has
what appears to be a cold. So this is now dragging him down!
He hasn't been able to keep much down. He appears to be
dry(not dehydrated...but not enough fluids for his body to maintain normal).
His feet are very very swollen.
I have been running some gatorade and water at night hoping this will help.

He has also been very crabby. He is mad and yelling a lot!
But at this moment he sleeps!

The last few weeks have been tough. He has not felt well
and has been sleeping a lot. He seemed very sedated to me.
I think he is on way too many seizure meds...
Five of them....and he gets alot of all of them!
Two weeks ago we finally drew some labs....
I got a call the next day and his dilantin was almost 30...
29.9...Normal is 10-20. Hollister likes to hang out at
12-13.
No wonder he was tired and throwing up.
The dilantin was TOXIC....

Sometimes I wish doctors would listen to me as I spend 24
hours a day 7 days a week with him. I know when something
changes...and I think he is over served on his medications.
His Neurologist at the Mayo Clinic...basically said he
isn't having a lot of seizures...so don't fix what ain't
broke.....but, maybe he can't function because his brain is
sedated.......

So for the next week I withheld and reduced the amount of
dilantin....
I knew he would have a seizure, I just didn't know when....

It was last Friday night. A grand-mal seizure. I was glad
it had started raining again or we probably would have
been at the football game....instead we were at home!

So, he was tired and slept most of the weekend.

Harrison has been to the doctor twice in the past 2 weeks.
He had a terrible sinus infection...He finished his antibiotic today.
I took him in on Monday as he had a terrible looking mass
on the left rib cage. He noticed it on Saturday night...
and it doubled in size on Sunday...
A CXR showed no broken ribs....but he does have a large
hematoma on his rib cage.
Now, we were trying to figure out how this happened????
He played Hockey and soccer over the weekend, 6 hours of
mock trial practice, and rough housing with his friends on
Thursday and Friday nights.....
The pediatrician was certain that it did not occur during
the Mock trial practice. haha
He is out of sports and gym for a week...but he can continue
with Mock trial...
He was devastated...no sports or gym for a week.
I just remember thinking how happy I would have been to miss
gym class!!!
Times have changed!

Hard to believe it is Trick or Treat this week.

November is knocking on the door. The weather certainly
agrees! Fall is here.

Football playoffs start tonight. DCHS plays tonight.
I know how excited Hollister would be. Weather and mood
permitting we will take Hollister to the game....

GO Big D!!!!!

Tuesday, October 14, 2008 9:46 AM CDT

Already the 14th....seems like Hillaree's birthday was
yesterday......

Harrison finished football over the weekend. He really had
a great year. He works very hard at all he is involved with.
Hockey started a week ago. He has practice every Monday night
at 9pm...
It looks like soccer will go for another month or so.
He likes to be busy and isn't ready to let anything go.

Hillaree is still swimming and diving. She is tired and
does not love the early mornings! HAHA She is busy with
school and homework. On the Sunday was Dowlings Fall Project.
It has always amazed me that so many kids will give up
6 hours on a Sunday to work on a community project together!
Another reason to love DCHS.

Hollister has had a couple of rough days. He is tired.
So tired that we can't wake him up. He sleeps for 16-18
hours at a time. Then when we do get him up he wants to
sleep in the chair. He is very weak from all the lying around.
He is also vomitting again. Makes me wonder what is going on.
Even Harrison has voiced concern and is trying to help problem solve.
Too many varialbes....and I don't like variables!

Hollister has therapy this afternoon...hoping he will be
awake and able to go!

We have enjoyed some beautiful fall weather. Didn't do much
as Hollister is sleeping.

Keep thinking of Team Tough...

Thursday, October 2, 2008 9:34 AM CDT

Happy Birthday to Hillaree.....
Happy Birthday to Hillaree.....

She is 17 today.
This does not seem possible.

What a happy birthday it will be!
Last year...when she turned sweet 16...
it was anything but happy. Hollister was in the
hospital recovering from the heart surgery. Her
birthday was LOST...

This year not so....It is a very happy birthday.

It started out bright and early...on the swim deck at
0530...on her way out the door her and the paperboy scared
each other...good thing she has a young healthy heart...haha

Unfortunately for me...she won't be home until after 7pm
tonight...she puts in long days at school...

Hollister looks good. So much going on here. We have kept him
very busy since my last note.
He has been to football games, swimming/diving meets,
volleyball meet, Beaverdale days, illumifest, (where
Hillaree's lantern was displayed)...he has been busy.
For the most part he has behaved and had a good time.
He seems to be more interactive than irritated when we
take he out.

Therapy is slow. Karen continues to keep him stretched.
and he stands pretty good but he won't take steps. We
are all wondering if it is because his feet hurt. They
continue to be swollen. Standing on them could be painful.

Hollister saw Dr. Mooradian(cardiologist) last week.
Proving my insanity once again...I wanted Hollister standing
for the chest x-ray. Dick and the office girls thought I
was nuts...as usual when I get something in my head...
but, my reasoning was valid...(too me). I needed to know
what the left lung looked like when he was standing and it
was able to expand....because if his lung is truly as bad as
it has looked the last year....If he needs his gallbladder
out, will he be able to be extubated or will we be getting
in over our heads....
(I told Dick I sit at home and do all this extra thinking
at no charge to him...hahahaha)
Back to our visit with Dr. Mooradian. He thought Hollister
looked good. He was thrilled to see his chest x-ray and the
left lung looked good, better than it had in a year!
He did an Echo of his heart and the window is working. The
fluid was gone! Problem solved.
His heart looked good. He does have some issues but these
would be related to the MELAS...
But, he Ejection Fracture was improved. The small dose of
Digoxin he is on is working...
Was nice to hear good news!!!
We are indebted to him forever for the willingness to help
Hollister and not to see or think of him as a lost cause!

We have been enjoying the nice fall weather. Getting Hollister
out as much as we can.
We are not ready for it to be cold and wet!

Happy birthday to Hillaree!!!!

Wednesday, October 1, 2008 11:13 AM CDT

someone who also wears these shoes sent this to me.......

"MY SHOES"...........

"I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so bad that I do not think
I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
I can tell in others eyes that they are glad
they are my shoes and not theirs.
They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by
before they think about how much they hurt.

No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.

I am a woman who has a child with a disease with no known
treatment or cure.
I will forever walk in these shoes."

- Author unknown

Friday, September 19, 2008 9:22 AM CDT

Homecoming week at DCHS.
Hillaree has had a blast participating in
all of the extra activities...Every day was a fun
dress up day. She called on Tuesday at lunch time in
a panic that not many were dressed up for "Clash day"....

I did my best to re-assure her that, she was the "cool" one
in her mixed up clothes...Youth is wasted on High school
kids trying to be "cool" and grown up....
I reminded her she only had 4 homecoming weeks in High school
and now 3 of them were gone!
Try and participate and have a good time....
No one ever had fun trying to be "cool".....

What I wouldn't give to go back to high school....
I had (have) the greatest high school friends...we had
fun and weren't afraid of what was cool or not!

She had participated all week and had a good time!
Cool or not!

Hollister looks good. His eyes have been very sparkly all
week. He has been loud, crabby, and more alert! He seems
more interested in what is going on around him.

He isn't doing much in therapy. Karen stretches him and
we try and walk...but not much. He is standing tall in the
pacer...
at home he is wearing his splints alot...trying so hard
to get those darn hands unclenched and his elbows to
straighten...not to mention his shoulders loose and his
arms above his head....
He hates it all!!!!

Yesterday was the kick off ralley for the St. Theresa
Stampede fundraiser....
Harrison (at the risk of not being "cool").....
decided to join the middle school cheer squad...So off
we went to the ralley to watch... He looked to cute and
he did a great job catching Katie...and handstands were
good...
Hollister was a crab.....which is too bad because everyone
likes to see him...He was yelling and hitting himself...
and everytime I put my hand over his mouth...his tongue
would lick my hand....
Don't tell him he doens't know what he is doing!!!!!haha

After that we took him down to get his blood work...
ONE!!!! I repeat.....ONE!!!!!! stick...
waiting to hear what his lab values are.

This weekend is the Beaverdale Fall Fest..fitting as this
is the last weekend of summer. Harrison is running in the
5k in the morning...and we will try and get to the parade.
Should be a lot of fun...Weather is perfect!

Homecoming football game tonight...

GO BIG D!!!!!

Big homecoming dance tomorrow night...First for Hillaree...
only Juniors and Seniors get to go to the dance....

Lots to do...

Team tough is only as strong as our weakest link!!!!

Friday, September 12, 2008 3:55 PM CDT

Rain Rain go away...
Friday night football waits for no one...

Hollister will be listening to the DCHS game tonight
on the radio...
It is Catholic Football league night at game, so all the
kids will be there...and Harrison gets to be on the sidelines
as a "ball boy" tonight..
We won't be there, not fit for Hollister or me outside...

He did indeed make it to the DCHS/Valley game last Friday.
It was a beautiful night for football..unfortunately the
game didn't go our way. It is good to get Hollister out
of the house....and we all know how much he loves the
Dowling Maroons!!!

Darn rain!

Tomorrow is the ISU/Iowa game...Another game that Hollister
loves. Unfortunately, it is on cable...and we may be the
last family on the planet without cable...hahah...
so we will be listening to that one one the radio also!
I remember last year, we sat on the front porch listening
to the game..it was a nice day...and Oh yeah.. the cyclones
won......
We will be listening and cheering loud!!!
GO STATE!!!

Hollister had less than stellar days at therapy. He hasn't
done much. He yells and yells at Karen as she stretches him.
He is so stubborn that he won't take a step for her....
and then he smiles and smirks at her...

He looks good. His sleeping is hopefully headed in the right
direction. He has been sleeping better at night and more
awake during the day!
He is more interactive and smiling and alert! I want to
be optimistic that he is making some progress and heading
in the right direction....

Hollister continues to amaze me and inspire me!

Team Tough as always needs lots of thoughts and prayers....

Fear less, hope more; eat less, chew more; whine less, breathe more;
talk less, say more; hate less, love more;
and all good things are yours.
~Swedish Proverb

Friday, September 5, 2008 3:16 PM CDT

Wish I could write 18 weeks at home....
but..

Hollister spent Tuesday night and Wednesday at Blank.
His lab work, tiredness, and question of pain....
He needed to get a good lab draw and an abdominal ultra-sound.
Specifically, his gallbladder.
No chances can be taken with those gallstone.
If he were to get pancreatitis from his gallbladder if would
more than likely be fatal.
I am very appreciative that everyone is taking this very
serious.

It all looked relatively the same. An arterial lab stick
provided a good sample and his levels look much better.
And the gall stones are many...but his gallbladder is not
acute...

He is tired. Still sleeping. He certainly has his days
and nights mixed up. He tricks me into to thinking he is
going to sleep...and about 2am...he is up for the day
ready to go!

Tonight is the DCHS versus Valley Tigers football game...
Hillaree and Harrison are both very excited.
It is now fall and football weather. CHILLY..
The crowd will be well over 11,000...Crazy!
It is great fun..

Hollister loved this game...and his school.

Tonight Cheer for the Maroons...to honor Hollister...

I can hear the pep rally...chanting.

What do we eat?

Tiger Meat, Tiger Meat!

Go Big D!!!!

Monday, September 1, 2008 12:03 AM CDT

Labor Day..

Last Holiday Summer...

A good Holiday is a Holiday at home...and we are HOME!!!
Last Labor day we were at Blank....

Watching the MDA Telethon....
Brings back all kinds of great childhood memories watching.
I remember thinking...I was one of Jerry's kids....
(my dad's name is Jerry)
....and I never once went to camp, especially where they
had that kind of fun!!!!

and ironically, Hollister is one of Jerry's kids...and
the telethon seems even more important....
MELAS is one of the mitochondrial diseases that fall under the MDA.....
I admire all that Jerry Lewis has done for MDA....
Never an old man has fought so hard for so many...
Kuddos Jerry Kuddos!!!!
Neuro-muscual disease is no fun!
Don't forget to donate...one phone call away!
1-800 637-6295!!!!!

Friday afternoon, Dick and I got Hollister in the car to
go to Blank to get the lab work done...

We made it a half a block from the house..and Hollister
looked rough. I made Dick pull over...I get couldn't get
out of the car fastest ecnough to get to him! I opened the
car and he grabbed my arm...he moved his head and shut his
eyes...His color starting looking better...so I tell Dick
we can take him...we go another half of block...I look back
at him...and insist that Dick take us home!!
We had a ride around the block and he was back home resting
on the couch.
He immediately feel asleep...
My fear was he wouldn't tolerate the lab draw and have to
be admitted...it is a holiday weekend!

He woke up just in time for football!!!

Hollister made it to the DCHS football
Friday night. An
impressive win for the Maroons...Thanks to everyone who
stopped to talk and check on Hollister. It couldn't have
been a nicer night to watch football.

He was tired on Saturday and Sunday.

Harrison had a good football game on Sunday. First win of
the season. He played hard. He scored two touchdowns...three
if you count the one that called by for a silly flag somewhere!
He played well on defense also...He is tough!
The Dowling Catholic football league is very very competitive!
Next year most of those kids will play for the same
freshman team!

Team Tough is happy to be home!

Harrison is at Adventureland....
and Hillaree had swimming and Diving practice!

Happy labor day!

Don't forget to stop every once in a while and actually thank God for blessing America -
he gets a lot of requests, you know. ~Carrie Latet

Friday, August 29, 2008 9:46 AM CDT

Friday....
17 weeks at home!!
Pretty amazing!

Iowa State football started last night. A day that Hollister
lived for. He was a true Iowa State fan, up and down he
defended his team and wore Cardinal red and gold prouldly.

Tonight is that start of the DCHS football season. When
he realized he was too small to play, he wanted to be
part of the team...and the year he was a freshman, those
senior boys took him as thier own. Never a team at DCHS
treated Hollister so well. He loved being the Team Manager...
never wanted to be teased water boy. But to those Seniors
he was much more. That was the season he had his stroke...
and that team never forgot him. That was a magical year
for Hollister and they were state champions.....
Unfortunately, it was only to last one year...He was the
manager for all 4 years...and a few players appreciated him..
but most did not. His Senior year he quit on the day the
Team picture was taken....I remember I picked him up and
he was so upset....He said, "I wear hearing aids...I can
hear everything that is said to me and behind me...."...
and his own classmates were making fun of him....

The next morning Hollister had a huge seizure and aspiration.
This was the first time he had to be intubated....Of course
Father Kirby was with us..It was tough...

Hollister did remain the football manager on and off the field.
Thanks to Father Kirby.

That was a tough fall....most of it in the hospital!

Football season is here...so much to think about!

Lab work out of whack...going to try and re-draw it today.

Hollister is still very tired. Still with the GI upset...
Hoping for improvement....

Team Tough continues to need lots of support!

GO Big D!!!!

The reason women don't play football is because eleven
of them would never wear the same outfit in public. ~Phyllis Diller

Monday, August 25, 2008 10:11 AM CDT

Last week did not get any easier.

School did get started and seems to be in high gear already.
I believe most of the forms are filled out and returned.
Homework was done over the weekend. Hillaree had a speech to
write.
Hillaree spent all day Saturday swimming and diving and
team building excercises...Hopefully, that will help.
After last season, team building is a must!
Harrison had a dance on Friday night. Must have been fun,
8th grade boys don't like to talk much.
Football scrimmage on Sunday...scored a touchdown after a
long run and he caught an interception and almost scored on
it...He was excited...Hopefully, it will be a good football season.
BUSY!!!

Hollister continues to be tired. He slept more again this
week. The vomitting continues. I am at my wits end trying
to figure out how to keep anything in. It is very frustrating.
Hopefully, this week will be better.

He has moments where he looks good and other times he
looks rough...
We have been trying to get him outside as much as possible.
Fresh air is good for us all!!!

Emotionally, last week was tough.
On Tuesday night Jace Carrico died. He had brain cancer for
5 years.....I hate Brain Cancer....
I hate that in the last 7 years I have seen way too many
kids die...
I always hope and pray that each and every child will be
the one....to beat the odds...and SURVIVE....
It becomes very very personal.

If Hollister weren't sick and I didn't live in constant
fear that one day his luck too will run out....I would be
like most of you...
I would read a caringbridge page or obiturary and think...
how sad...a child died...
and my day would go on....

But....
Not where I sit. It makes my whole body hurt...my heart aches
and my head hurts...and physically I feel sick.
I think what can I do to help this family. What can I do
to make it better, less real, less painful.
I think of the family...this week especially I think of the
Carrico's. How do they pick up and go on. For the last 5
years, what they know is Jace has had cancer. Tara his Mom
has focused her whole life on him.......Now what...
To his sister Jenna and his Dad Travis...my heart aches....
My heart and my thoughts are with them.

Then my questions for God....Why..........
I have decided that there definetly has to be a God..
Evan....in trying times.
Faith is all we have...Faith that there is a God, there
is a Heaven and we will all be united together there...
All of these precious children who have suffered on Earth
are enjoying freedom from illness in heaven.
That is all Mother's of sick children have is Faith in God!

I know I will not forget him. I will think of him often and
smile. I will say his name Jace and smile. I like to think
of him on his drumset laughing. I will always love the Wiggles
because of him.
I will look at pumpkins and barbies and want to catapult them
off a parking garage.
Hollister thought Jace was very funny...I remember!
In nine and a half years, Mr. Jace Carrico taught me so
much about living...that I will never forget!

It has been a tough week. Team Tough is wounded....
but we are still here...

Today I remember......
Cara, Nicole, Ethan, Brant, Logan, Sam, Alex, Trent, Tyler, Zach, Sam
Josh, Joel, Evan, Joel, Caroline, Anna,and Jace.....

Monday, August 18, 2008 1:34 PM CDT

Hard to believe I haven't written a note since July 31.
August is half over.
Hillaree has school tomorrow, orientation and pictures and
the works.
They both start full days on Thursday.

I am not ready for summer to be over. It is very quiet here
during the day without them. They both are good help with
Hollister.

Lots going on since my last note.

We took Hollister to the Make-a-wish night at the Iowa Cubs
game. It was great fun. We got to sit in a sky box which
had air conditioning. Made for a very fun night...
Remember them always with your donation dollars.

Hollister has been very very tired. He has slept a lot.
When he isn't sleeping he is very nauseous. Lots of
throwing up. I started giving him the Zofran scheduled
before 2 feedings about 10 days ago. It has been very
slow to help. I hate having to start anything new, especially medications.
He started on the USO forte for the gallbladder, the
side effects listed are.....nausea, vomitting, gas, constipation,
and diarrhea...That spells FUN!!!
He also started back on the Erthromyocin for his slow
motility. This is very nasty and has always made him
thow up and of course gets his gut moving.
So it is very hard to know why he feels tired, low energy
and crabby. It it the medications, side effects, or his
gall bladder.
It has been a very long two weeks.
Hard to recognize the difference in symptoms.

All of these stupids things that happen to him break my
heart...Having MELAS isn't enough...Heart surgery wasn't
enough...now his gallbladder....ENOUGH!

Last Monday he started to perk up a bit. He still isn't as
strong as he was but he has been up a bit more. Was good
to see him smiling.

He tolerated therapy pretty well. Nothing too exciting but
he did make it there. Karen is very patient with him.

Tuesday the 12th was sweet baby Harrison's 14th birthday.
The saturday before we had a party for Harrison with his
friends at the pool. It was very fun and those kids were
very well behavied. We did get Hollister in the pool to
float around. It was a little chilly but I think he enojoyed it.
He always loved to swim and never wanted to get out of the
water.

Harrison's birthday was difficult for me for a variety of
reasons. Hard to believe he is 14. Dick's dad died in December
the year that Harrison was born. His growth is a reminder
how long Ed has been gone...and how much has changed.
Half of his life at this moment Hollister has been sick.
He probably doesn't remember him well.Hard to imagine.
Harrison is the age that Hollister was when he had his
first stroke and his diagnosis.
It is difficult to imagine and a lot for this mom to think about.

Yesterday we took him out to the fair. He did OK.
Hollister and I hadn't gone since he doesn't eat, talk or walk.
It was probably harder on me than him. It is hard to know
since he can't tell us. I felt bad eating good stuff that
I know he loved. I couldn't bring myself to eat the little
doughnuts. Those were always our favorites...

Dealing with sickness never gets any easier.

Harrison is busy with football and soccer.
Hillaree has started swimming and diving.

On Thursday Hillaree starts her Junior year at DCHS.
Harrison starts his 8th grade year. This is our 17th
year having a student at St. Theresa. Unbelievable!
and.....Hollister should be starting his Senior year in College!

Team Tough is here....

Thursday, July 31, 2008 12:19 AM CDT

Has been a quiet week at home.
Harrison is visiting Hubbell's in the Quad Cities.
He finally called last night, he is having a great time.

It has been too hot to take Hollister outside and when
it isn't hot, it is raining. Summer is starting to seem a lot
like winter...no fun!

Hard to imagine this is the last day of July. I am dreading
school starting again. I like having all of the activities,
drama, and noise with Hillaree and Harrison here.

Hollister looks pretty good this week. He is still tired from
his journey out of town.

More on the Mayo Clinic...

Hollster saw the Physical Medicine doctor. We hadn't seen
him since the summer of 2006. He thought Hollister appeared
to making progress. It is very very slow but improvements
were made and he thought still possible. We need to do
more hard work with Hollister...Therapy and at home...
He suggested that I stop doing everything for him and
encourage him to TRY and do more...He said he could tell
what I work at home with him...now is time to try more...

Hollister had his appointment with the GI doctor first thing
Monday morning.. His Mic-key button is fine...but I had
to tell him about all of the puking...and he listened and he
was very concerned. He ordered lots of blood work and an
abdonimal CT. He said there could be many reasons for the
puking. He is so thorough and I like him a lot. He is very
very personable and he likes Hollister a lot. most
importantly, he is smart!

Hollister also had an appointment about Nutrition. She
was very nice. She thougth Hollister's feeding schedule was
very appropriate and the food he is on is still the best
one for him. It was nice to get that feedback and she answered
some of the questions that I had.

We saw the geneticist on Monday and when he came in and
saw Hollister, he was very excited. He looked good. He
was awake, sitting the chair responding. He was impressed.
He wanted to wait and talk to us on Tuesday after all of
our other appointments and tests...He said, "Whatever you
are doing, keep it up...he looks great!"
That is like a paycheck for me...makes me always feel good!

The Ultrasound was tuesday afternoon, we went back to see
the Geneticist and he was happy with all of our visits. His
labs looked good. He is Lactice Acid was 2.6..everything
else was reasonably ok. We talked about what everyone had
said. We left there feeling OK...

No news from the GI doctor so we were feeling pretty good.

It was after 4:30...so we decided to stay one more night,
go out to dinner and spend time with the kids...

We barely got Hollister into the Hotel room for a nap when
the Geneticist called and said we needed to get back to
Mayo clinic right now to talk about the Ultra sound...
CRAP!!!
We got Hollister settled with his meds and food...got the
kids out of the pool...and Dick and I headed back to the
Clinic. Parking at 1700 is much easier than at 0730. haha

Dr Psychogios was anxioius to see us. He had a copy of the
results in his hands... Hollister unfortunately had
gallstones and polyps in his gallbladder. He has a dense
mass near his hepatic flexture...where is jejuneum was
ruptered in 2006. Probably stool.
Again, that punched in the gut feeling. Lots to think about.
He was very worried.
He said he needed to get the gallbladder out.
Pancreatitis would be deadly to Hollister.

He scheduled and MRI of his cut on Wednesday morning and
a visit with Dr. El Youseff( gastroenterologist)
right after.

We did try to take the kids out for dinner on Tuesday night
but again my nerves, attention span, and anxiety were getting
the best of me.

It is amazing to me the strength that God gives. Hollister
was good all week. He tolerated the MRI and CT without
any difficulties or sedation. He is stronger and wiser than
most of us.

Dr. El Youseff was waiting to see us. He said he would look at
the MRI later. He got what he needed from the CT. The gallbladder
was certainly the problem. He went over all of his lab work.
Some of Liver enzymes are elevated. He said it was from
drinking alcohol or medications...We decided it was medications.
On most 21 year olds it would be alcohol.
He said his liver is working like a muscle. If you use
a muscle alot it will get bigger...His liver is doing the
same thing, he uses that portion of it a lot so it is bigger
and stronger than the rest of his liver. His lab values will
be elevated because of that.

He too is very concerned about the gall bladder. He called
three different surgeons at the Mayo Clinic and talked
about Hollister. Everyone wants to wait a few months to
let his abdonmen/colon rest.He had that perforation and the
ileus last fall. Not too interested in going into what is a
mess.
Lots to think about. His left lung is still not the best.
If surgery happens how easy will it be to extubate him.
So much to consider and think about for a simple routine
surgery.

So, he put him on a medication that will shrink the stones.
If he passes one, hopefully it won't get stuck. He said it
would be painful but hopefully they will move on.
Before an infection can set in!

He told me to use my intuition with Hollister. He has always
given me way to much credit for insight and knowledge. I laughed
out loud at him.
He told me to keep him safe and bring him back at Christmas
for repeat scans and blood work.

So, now we sit between that rock and a hard place, with
the continued punched in the gut feeling. Anxiety ridden
hoping not to miss the first symptom.

All of this and the vomitting continues....

I know this is long, probably boring and tedious to most...
Unfortunately for Hollister his life doesn't get any easier.

Here's to Hollister...The toughest boy I know!

Tuesday, July 29, 2008 0:00 AM CDT

I am hoping if I start typing the words will come.

I have so many thoughts...

We survived our trip to Rochester/Mayo Clinic.
We were suppose to be done on Tuesday...but Hollister
was lucky enough to get a bonus day on Wednesday.

Hillaree and Harrison had a good time. It was good for them
to get a few days away from home. It has been a long time
since we were able to take a vacation. None planned in the future.
Hillaree drove her car so they were able to get out and
about during the day. There is a nice mall there. The kids
have spent a lot of time there so they know they way around.

Hollister did a great job while we were there. His appointments
on Monday and Tuesday were at 0745. He was up and in the
shower by 0600. That means I had to start his breakfast
feeding at 0230. This was way too early. We were ready for
a nap in the afternoon.

Hollister saw all of the Doctors once and some of them
twice. Crazy.
It was amazing, when he went for his lab draw...ONE stick.
Unbelievable...I immediatly asked him to move to Des Moines.
He laughed at the thought!
He had lots of exams, an ultrasound and a cat scan.
He did well.
We ran into Marcia and Jack(a mini doberman pincer),
we have known them a long time. They work on the Rehab unit.
They came over the lunch hour almost every day when Hollister
was admitted there. Made our day. They were both very happy
to see Hollister.

For those who have followed Hollister a long time, you will
remember the Doctor I lovingly referred to as the TICK...
He passed us in the hall. Dick and I stopped in our tracks.
I wish I could have talked to him...haha

Hollister's genenticist wanted him to see a different neurologist.
He thought a thorough neurological exam by
this doctor might show something new. We are all hoping to
get him off some of his 5 seizure medications...I think
sometimes he is sleepy from being over medicated...and they
are very expensive. Not yet..as usual.."don't fix what aint
broke"

He was very nice and as a bonus he actually knows a lot about
MELAS. He liked all of his vitamin cocktail..said it still
looked appropriate and he couldn't think of anything to add.

He went over his MRI from 2006, that is the most current
one he had. He had one done in 11/07 in Des Moines, but
it was unchanged from 2006.
I hate seeing the MRI and I certainly do not like talking
about it!
but...we did!
One thing he was very concerned about was a sinus infection.
He repeatedly asked if that was treated. It was very apparent
in all of the films.
I immediatley got the punched in the gut feeling and I still have it.

An untreated sinus infection could and most likely is the
culprit that brought us to this point!
His presentation was with hearing loss and signs of illness.
We went to the doctor several diffent times that week.
It all started one week before he was admitted.
A sinus infection!!!!

During his exam he kept saying how great that his assessment
did not match his MRI...this is a bonus. He thought that was awesome.
He saw lots encouraging things and that recovery is happening.
He liked how strong he was.

He was concerned that Hollister wasn't seeing and or
hearing very well. That was not new. It varies from day
to day. Somedays he can't do either.
(again I hate neuro muscular diseases..)

He reminded us over and over that his disease appears
stable...BUT to be mindful that the simplest issue in
a compromised person can be lethal...
That has been my mantra all a long...All those complications
are not the MELAS...
Like I tell the Doctors in the hospital everyday before they
get to tell me anything especially bad news...."let me tell
you what I see"

I felt encouraged by him when we left there. He agreed with
me that we can't see every single cell on the MRI and
we don't know how much his medications are helping!!!!

It is late and 0500 will be here in less that 4 hours.
Will write more about our trip to the Mayo Clinic this week.

Hollister needs lots of continued thougths, prayers...and
love!

Sunday, July 20, 2008 9:16 PM CDT

We are in Rochester tonight...
Hollister has appointments all day tomorrow and at least
one Tuesday.
It is going to be a couple of very very long days.
I am hoping to get some postive news, encouragement, or at
least some kind of plan...

Hillaree and Harrison came along for the ride.

Hollister did make it to therapy on Tuesday. He worked very
hard for Karen. He seemed more aler than usual and he did a
good job standing up for her.

Wednesday we did make it to a movie. Hillaree and I stretched
oursleves so Hollister and Harrison could see a movie they
would like. We saw Wanted...and it we all enjoyed it.

Thursday...no therapy.
We decided to drive up to Algona and visit G-pa and G-ma...
It was G-pa's birthday....
We hadn't stayed overnight anywhere in a really long time.
We stayed all weekend and headed up to Rochester this
afternoon.
Hollister did great. He stayed awake and smiled and smiled
all the way there.
Friday Dick worked, he had a few appointments in Algona...
and then we all went to lunch with G-ma...Hollister of
course didn't eat anything but he appeared to be happy.
Saturday, we picked up my nephew and had a picnic at Smith
lake...Hollister did well. He liked being outside with the kids.
Hollister was great all weekend. I think he really liked
getting out of the house. He slept well, interacted well, and smiled alot.
It was good for all of us!!!

I will update after our appointments tomorrow...

Team Tough continues to need lots of good thoughts...
and prayers for Hollister's Doctor's..so they can see
what I see and be hopeful and optimistic with intelligent
ideas....

Friday, July 11, 2008 4:28 PM CDT

8 weeks at home!!!

Word of the day....

HOT HOT HOT!!!
or maybe.....

HUMIDITY HUMIDITY HUMIDITY!!!!

I guess it is July
and we all know we need heat to make the corn grow!

Not much going on here.
Still doing way too much yard work.
Dick is working on a drainage situation in the back yard.
Kind of funny, he started working on a this project 7 years
ago fall. It was about a week or 2 before Hollister had
his first stroke.
Dick started the first tree ring and planted Hostas there.
Each year he gets more done and each year I find something
else that needs work.
He is now finishing the french drain that runs between the
tree and the house.
Good thing our yard is small!

It seems so strange to me that we in this house mark time
and events by what was going on with Hollister. If he
was sick, in the hospital, or home. It is the only time
line that we know for the last 7 years.

Hillaree is doing her best to get Hollister and I out of
the house.
We have been going to movies on Tuesday...BYOB(bring your
own bucket...for popcorn..) It is fun to see what people
bring. This past Tuesday, Hillaree and Harrison ditched
Hollister and I...No movie!
We try and go after therapy. Hollister does OK. We are
hoping that he might even enjoy the movie...a little....
I do think 2 weeks ago he had a good time at the Sex and
City movie. That was one of his favorite TV shows...He loved
Carrie. We had to take him. He stayed awake and interested
the whole time.
We did get Hollister out to get a haircut on Wednesday.
He needed one. He would have hated how his hair looked.
He was always very picky about his hygiene.
He looks good. Not sure what the girl at Great Clips thought
when he "burped up" on her cape...haha
We also went shopping....Hollister seemed to enjoy himself.
Hillaree pushes him and talks to him...He laughs at her...
It is very touching to see her with him!
I was checking out a Target and Hillaree had taken him to
get a Slushie...and I looked up and he was eating it....
yep...EATING IT!!! I was amazed. She was feeding him blue
slushie and he was smiling...
Today, at her request...we took him to Hooters for lunch.
We walked in and a couple of the waitresses recognized him
and yelled..."HOLLISTER"... I couldn't believe it.
It was almost too much for me!
I wish he would have eaten a wing but he did taste alittle
pop...for Hillaree.
He smiled and smiled...we even caught him looking directly
at one of the girls... hahaha

Therapy was pretty good this week. His arm muscles and chest
are very very tight. We have to get those arms moving or
he will lose the abililty to wear a shirt. This is very
serious. Karen worked on them and he hated every moment.
It hurt.
He stood well and even took some steps for her.
I am amazed by him and his perserverence.

Finally, lab results. I haven't heard of any for 2 weeks.
As expected not great. His lactic acid was 7...ouch.
and his potassium was high also...Not sure what I can do.
His lactic acid has never been that high expect when he
has been the PICU in a metabolic crisis...or stroke..

He is resting on the couch a good place to be in this heat.

Not much planned for the weekend, staying close to home.

Keep Team Tough close to you hearts!!!

A perfect summer day is when the sun is shining,
the breeze is blowing, the birds are singing,
and the lawn mower is broken. ~James Dent

Friday, July 4, 2008 11:45 PM CDT

And I'm proud to be an American,
where at least I know I'm free.
And I won't forget the men who died,
who gave that right to me.
~Lee Greenwood

Happy 4th of July!!!

and a Friday....
7 weeks at home!!!

Hard to believe how fast summer is going.
I remember as a kid, summer didn't last long after the 4th..
or at least it seemed.

Hollister has had an OK week. Nothing septacular.

He had therapy on Tuesday, he was very stubborn and wouldn't
take a step. but he stood well. Karen strected him....good!
He tolerated it fairly well and was interactive with her.
No Therapy on Thursday...Holiday started early...

Hollister also had his lab work on Tuesday. He was a pin
cushion...and he wasn't very happy or nice!
We were very lucky to have our friend Susie (from Peds
transport) come and stick him. She was tenacious and did
a great job. No word on labs...
No news is not usually good news...

We have been taking Hollister to the movie on Tuesday
afternoon. He has done OK so far. It is fun to get out.
Hillaree is so good with him. She is strong! Moving him
in and out of the car look easy when she does it.
She is young, strong, and has PATIENCE!!! I love having
her home to help me and spend time with him! She is a gift.

Thursday night, we went to the Iowa Cubs baseball game. It
was a great night for a game...almost cool out. Hollister
did fine but his butt must get tired from sitting. He was
quiet again after we stood him for a time.

We did have a difficult time finding handicapp seating.
Why do people feel compelled to take those seats if they
truly don't need them???? They were lots of spaces for
Wheel chairs but all the seats next to them were taken.
It finally worked out, a very nice usher(named Jane)
helped us and we ended up behind home plate with great
seats...she even found 2 extra folding chairs so we could
sit together...
Outstanding!
The fireworks were spectacular. Hollister wasn't sure at
first..once we reminded him what they were..he did OK!
It was fun...

Today, we stayed close to home. Hollister was off a little.
Couldn't keep much down most of the day.
Hillaree and Harrison spent the day at the pool...

Our neighbors came over for a "porch party" and Harrison
and Brody(and Cory)....let off some fireworks..Good entertainment
for us all.
Hollister sat in the middle and smiled a lot!!

It was another good day...
It was another good week(at home)...

THANK YOU GOD!!

Then join hand in hand, brave Americans all!
By uniting we stand, by dividing we fall.
~John Dickinson

Friday, June 27, 2008 1:36 PM CDT

Another Friday is upon us....
That means...

6 weeks at home!
6 weeks at home!

We are all working hard to keep that number going up!
Not sure what would make a record but would like to try!

The weather is crazy! Hot, sunny, humid, raining!
I guess if you don't like the weather wait 10 minutes.
again, our yard is very wet, enough!

Hillaree is on her way to spend the weekend with G-pa and
G-ma. Makes me nervous to let her drive to Algona by
herself. She has been wanting to go since she got her
license...so today is the day. Hoping she doesn't encounter
any weather situations.....
I already called her once...to test her...and she answered
her phone, I reminded her not to talk on her phone while
she is driving...her response..."Well, if I didn't answer
the phone you would have kept calling...what did you want!"
She laughed and said she wasn't even out of Des Moines yet!!!
It is going to be a very long 2 hours..hahaha

Harrison is with the youth group from school/church at
Adventureland today. John Gaffney does a super job with
those kids...No money in the world would be enough for me to
spend that much time with that many teenagers...I guess, we
know what John's gift is....Patience..haha

Haven't heard anything on Hollister's lab work.
Unfortunately, no news is not necessarily good news.
Trying to keep in prespective...Hoping the samples were
good enough to get the labs. I hate for him to be stuck
multiple times and not get a good speciman!
That has been an issue that last couple weeks.

Hollister saw Dr. Mooradian(cardiologist) on Wednesday.
He thought he looked GOOD. He was awake and animated when
he was in the room. He always assumed it was an ubran
legend when we would tell him that Hollister was awake,
making eye contact, and trying to interact! He saw it with
his own eyes..ha
He was quite impressed and happy. His chest x-ray looked
better than it had in months. His heart rate was slower.
His feet are still swollen with no good explanation.

We were so happy when we left, we decided to take Hollister
for a visit to see the nurses at Mercy Pediatrics...
We hadn't seen them since Christmas...
They were all happy to see him. It was a happy reunion.
I believe Hollister relized how young and cute many of them
are...When Amanda starting talking to him, he sat up a little
straighter and smiled and giggled.
It was great to see the "old' Hollister even for a brief
fleeting moment!

Thursday after getting his lab work done, it was back to
therapy. Karen was back. Again, I think he was happy to see
her. She stretched and stretched him. She thought he felt
pretty loose for him!
She got out the pacer to see how he would stand in it...
Not only did he want to stand, he was ready to walk. He
was awesome. He walked farther than he had in a long time,
without as much effort and work from Karen. He even knew
when he needed to rest and then would stand up to start again.
It was amazing!!!

No big plans for the weekend!

Team Tough as always needs you!

A snowflake is one of God's most fragile creations,
but look what they can do when they stick together! ~Author Unknown

Tuesday, June 24, 2008 9:30 AM CDT

Not sure how a week has passed without a note!

Most importantly on Friday...Summer arrived!!

I love summer.

Hooch had a birthday on Friday. He is now 9 years old.
He had surgery on Thursday to remove a couple of tumors off
his face and ear. He certainly acted like an old man it took
him longer to recover this time. Hooch is on a diet and has
lost 4 pounds in less than 2 weeks. He is starving and at the
neighbor's doors looking for treats!

Hillaree made it home from Venezuela. She had a great time.
She fell in love with many of the girls and can't wait to go
back next year. What Father Kirby has started there is just
the beginning and Hillaree is hooked!!!
I hope everyone had a chance to check out his blog to read
and see pictures of those forgotten girls.

Harrison has had a busy summer already. He is busy with his
AAU baseball team, they just played in the State tournament.
The finished 4th...and could have done much better.
He is also busy golfing 4 mornings a week with lessons.
He is using Hollister's clubs and his baseball glove.
Harrison has made the comment that he is lucky to have a big
brother who loved to play sports as much as he does....
He gets to use all of his stuff, hockey, golf, baseball,and
he rides his bikes....
That is a comment that also hurts us all...because Hollister
should be out there with Harrison...teaching, leading, and
most of all playing...brother to brother...
Life......gets no easier!

Hollister is still struggling with his labs. He is also having
a hard time keeping a lot in. He seems so skinny again.
Sunday morning, he had a Grand Mal seizure. He was still
sleeping and Dick and I were out doing yard work. Dick went
in to check on him, sure enough he was seizing. I came in
and got his medications in and we waited...I chose not to give
the diastat because I didn't want to knock him out.
I remembered that Saturday night he threw up all of his
meds before bed. Must have been enough to throw off his levels and
Bam a seizure!!!
He rested, then off for a shower. He looked pretty good so
we took him to the ballpark. He did well sitting in the
sun for 2 games. Really tired him out but a little Vitamin D
is good for us all.

I felt like Pandora's box had been opened. Dick was cleaning
out some "flood" stuff out of the basement....
A drawer with hidden memories was opened...and I looked.
I read Christmas letter's that I had written in 1992&1993..
Hollister was in Kindergarten and First grade...and other
precious memories filled my brain and my heart so full...
I felt sick and lost.
I try so hard to stay in this moment. Everyday has it's
challenges...like Harrison playing with and using Hollister's
equipment. Music, movies, food, candy, and Hillaree and Harrison
wearing his t-shirts....It is overwhelming.

Leaving what I know is the past in the past is the only
way. Pictures haunt me and memories fill my heart with tears.......

Team Tough as always need lots of thoughts and prayers.

Sunday, June 16, 2008 11:32 PM CDT

Happy Father's Day to my Dad.....

Old as she was, she still missed her daddy sometimes. ~Gloria Naylor

and to Dick who got to spend the day planting Hostas...
oh yeah that was his gift!

Thank God it has stopped raining! The flooding this state
has seen is at the 500 year mark...Oh yeah that happened
here in Des Moines....just 15 years ago.....(that was a quick
500 years...haha)
The water in our basement now seems small, watching what others
have to endure. Really makes you think to see others suffer so much.
Breaks my heart for them...It would be totally overwhelming to me.
Not to mention the flooding in the country and farm fields,
sometimes it is easy to forget the small towns. Now the water
is headed to southern Iowa...The damage is far from over.

The sun was shining on Saturday and Sunday. What a nice surprise.
We have lots of yard work to do. The summer of 06 was lost as Hollister
was hospitalized from May until September...
and last year we had that late frost that set everything back.
This spring there has been so much rain/mud that we have
gotten really behind...
Now, we will be working in the yard in the heat of the summer.
Poor ole Dick Farrell...no rest for the wicked...haha

Hillaree is having a great time in Venezuela...We haven't actuallly
heard from her...But Father Kirby has set up a blog with
what they have done and pictures.

This is the link if you care to look at it.
It was good for me to see my girl!

http://web.mac.com/jkirby1/terra_livre_2008/Casa_Hogar_2008.html

Hollister looks better. His lab work is slowly making some
positive changes. I have been thinking and thinking on what
changes I can make to help...I have decided to go back to
his feeding and fluid schedule that I used up until last summer
when he had the heart surgery.
I know he is probably a little dry most of the time, because
he is still taking the lasix for his heart...(the swelling in
his feet)....
He has lost at least 10+ pounds..he is thin again!
He can't tolerate his feed like he could..but slowly I am
increasing it to where he needs to be.
I am hopeful this will help level things out...

Saturday night we took Hollister uptown Beaverdale to a street
dance/party. I love our neighbors, we all had a great time.
It was fun to see so many people out having fun.
Hollister even enjoyed himself, he was smiling, laughing and
even tapping his feet to the music...Did us all GOOD!
It was a perfect night for a party...

No therapy this week, but hopefully the weather will cooperate
and I can get him outside!!!

Team Tough is strong because of all of you....

Happy Fathers Day!
The greatest gift I ever had
Came from God; I call him Dad!
~Author Unknown

Monday, June 9, 2008 11:30 AM CDT

A lot going on...
Mostly with the weather...
I do believe the State of Iowa is about to sink!
At least our house...
Rain, Rain, and more rain!!!

Most of it going in the basements...ours included.
Thursday night..was UGLY!!!

Hillaree and Harrison and a group of friends had just gotten
to the Bowling Alley...for cheap bowling....and the tornado
sirens sounded....Called them home and drug Hollister to the
basement...

Then around midnight, we drug Hollister back upstairs and
Dick drove the boys home...and I went downstairs and water
everywhere....We haven't had water like this for over 10
years....Hollister's room was flooded...and it is the only
room with carpet...(no more!)
We worked until after 2am...getting the water moving..and
all weekend...What a stinky stinky mess...
Rained all weekend...I think today is a break from the rain
but it sure looks like it could!!!

Hollister continues to have some ups and downs..His lab work
is still way off. And he is starting to look rough.
He continues with the vomitting..
I am ready for nice weather to get him moving...
I know he is tired of sitting inside!!!

We did make it to the zoo on Friday night. It is a night for
"sick" kids...It was lots of fun. I think Hollister even
enjoyed himself. It was sponsored by Blank and Mercy pediatrics.
Fun to see so many nurses and therapists...
Ate dinner with the elephants....

Harrison was able to get some baseball games in on Saturday...
None on Sunday...Way too much RAIN...(another four letter word!!!haha)

As I write this note...
My heart and thoughts are all over.
We just got back from taking Hillaree to the airport...
She is flying out at this moment...headed to Barinas, Venezuela...
Actually, she is headed to Cincinnati to Atlanta, Atlanta
to Caracas. overnight and at 0600 in the morning she is headed
to Barinas...
A small(250,000) town at the foothills of the Andes Mountains...

She is going with Father Kirby and a group of students and
adults to the Casa Hogar (all girls) orphanage.
What a wonderful experience for her.
She worked hard and paid for her entire trip herself!!!
and she collected 60 stuffed animals to take to the girls.
She is the youngest one going, and she handled checking in
like a pro...and overseas flights you get 2 bags....
We were prepared to pay for the 50 pounds of stuffed toys.

It was hard to let her go...but deep down I know it is the
right thing to do. I don't ever want to hold her back, it
is more important now than ever for her to keep moving and
experience life!!!

I will post more as I know it...
Keep my girl in your thoughts today as she travels so far away!!!

This is general information website about Casa Hogar
http://www.casahogariowa.com/contact.shtml

Team Tough needs lots of extra thoughts and prayers...
Keep Hollister close to your hearts as he continues to
battle such an ugly ugly disease!

Wednesday, June 4, 2008 8:31 AM CDT

Hump day....

Another day of rain expected.

Third day of summer break...
So far so good. I haven't heard I am BORED once...
This may be a record..haha

It is nice having the kids in the house. They are both
very helpful with Hollister and I like the company.

Hollister continues to struggle.
The answers have not come not that I expected any.

Yesterday, he did make it to therapy. He was late....
but we made it. Hillaree and I tried our best to get
him there in a timely fashion...The showering took longer
than expected!

Karen stretched and stretched him, much to his dismay.
His shoulders are tight. She keeps reminding him, move
the shoulders or lose the ability to wear clothes!
At one point, it looked like they were playing Twister
on the therapy table. He was very interactive with her.

While at Blank, we ran into to so many friends...Doctors
and nurses...How great is that. Everyone stopped to talk
and give Hollister grief about something. This is a great
way to see everyone without an admission!!!!
Hollister has touched so many people and all of those
people at Blank were there for him for so many years.
He loved volunteering there and harassing all of them!!!!!

Today will be more of the same. Trying to keep him from
throwing up...including his meds...
He is weak and tired...but has moments of strenght and
smiles

Tomorrow, LAB work and therapy....

Team Tough is tough....

Whatever you ask for in prayer BELIEVE
that you have received it and it will be yours.

Mark 11:24

Team Tough Believes

Sunday, June 1, 2008 8:58 AM CDT

3 weeks and 2days...HOME!!!!
We have to start somewhere!

SCHOOL IS OUT!!!
Friday at 10:00 Hillaree was done
and at 1:30 Harrison was done!
Not a day too soon.

Another nudge at my heart, reminding me that Hollister is
not finishing his 3rd year of college! Knowing that this
is the summer he wouldn't come home, instead he would stay in
Texas and work at Sea World....He had talked about this since
he was a boy!!!
Unfortunatley, his dreams still live on in my dreams!!!!!!

This has been an extremely difficult school year.
Hollister's heart surgery last fall and all that happened
after that...sometimes it is just too hard on Hillaree and
Harrison.
I admire them for getting up each and every day and heading
to school and all of the activities that follow. It is so
easy for everyone to forget all that they see and feel each
and every day...

Summer is good!!!
Healing for everyone!!!

Hollister continues to be puzzle!!!

His lab work on Thursday was very very frightening!
All markers are either way too high or way too low!
His liver enzymes are elevated...
His lactic Acid was 6.5...
His electrolytes are all out whack...
Talked with Dr. Uthe and she is very worried that the
MELAS is progressing...
Makes me sick!
She put a call into to the Mayo Clincic Genetics...
Waiting to hear!!!!!
Not knowing what to do sucks!
Oh yeah MELAS SUCKS!!!!!

We have had a nasty little bug in our house...knocked
Hillaree and I pretty hard...Yesterday, It looked like it
was Hollister's turn...He slept all afternoon and evening.
Was hopeful, he would sleep all night! Not that lucky, he
woke up at 10pm...ready to go...
He was up until 3am...and then again ready to be up at 6am...
He is very loud and ornery this morning!!!

But.....

This is what I see...not knowing anything clinical!
I see a very strong 21 year old with a very nice gotee!!!
He is smiling and listening (on occassion)...
He is still moving, sitting, and standing. He has a great
cough and is able to clear his own airway!
I think he looks good this morning!

Will wait to hear what the experts think and labs on
Thursday!!!!

Here's to the start of a great summer.
Sun is shining this morning.

Team Tough continues to need your thoughts and prayers!!!!

Wednesday, May 28, 2008 2:39 PM CDT

Wow, two weeks have passed since I wrote a note on this page.
Not sure where two weeks went.....

Many times I have wanted to sit down and write a note....
but I have been very tired...seems to be catching me.
Hollister and I have been sleeping on the back porch instead
of down in his bedroom...I am back to sleeping on a cot next
to Hollister on the couch. Anything to try and help with the
vomitting.....
Hard to imagine all of the cots, chairs, and places I have
slept next to Hollister in the last 6 1/2 years....
especially the last 2 years....anywhere to be close to him!!!

Hollister has had lots of ups and downs the last 2 weeks.
A big seizure last Tuesday...broke my heart...
Not sure if he seized and fell off the chair....or....
fell off the chair and seized....
Either way, he hit his head first and very very hard...
He had a big scratch on his head....
Of course it was when we were getting ready to go to therapy.
So, he missed...He cried...I cried...and neither one of us
felt better.
He has been very tired...he wants to sleep about 20 hours a
day. This is less than desireable.

The swelling in his feet has gotten worse again...For a few
days, I was hopeful that they were getting better. They
are still hugemongous!

On good days...

Hollister looks good.
He is strong. Hillaree and I have had him outside on the
street. Hoping he might walk. He has taken a few steps for
us. He also has about dropped the 3 of us to the ground.
Our new neighbors must think we are maniacs....or just plain
stupid...
but we will continue to encourage and work with him.

He seems to be very alert and trying so hard to tell us
something...He sits up straight and smiles, if only we could
know what he was thinking...He has 2 years worth of listening.
without saying a word....If that were me, I would BURST!HAHA
Hoping and waiting with my listening ears...

Team tough is here and working hard....

It is what it is......

Wednesday, May 14, 2008 8:47 AM CDT

Sitting here in the back porch...
Looking at and smelling Lilacs...
One of my favorites...and certainly means spring is here
and we are heading to summer.
Suppose to be nice the rest of the week!

Something is up with Hollister....
He appears to have head pain...he keeps grabbing his head
and holding it and rubbing it...always the back on the
left side...
This is very very worrisome.

To add to it...he has lots of nausea and vomitting.
It seems everytime he moves...he throws up..
Tried to go to therapy yesterday....As we pulled in the
driveway at Blank...he threw up....Hoping that was it, we
changed his shirt...
On our arrival into therapy....He had filled his lap...
what a mess. Many many towels later, Karen tried to stretch
his arms and legs sitting in the chair....
He didn't love it!

I have been giving the Zofran...trying to keep some of his
food down...that and the motrin for the headache.
Never a dull moment here....

Looking for a quiet day here for Hollister. Hopefully,
the head pain will dull and the vomitting will stop.

Lots of thoughts and prayers for Hollister...
Hoping this hurdle is nothing!

Team Tough as always needs you!

10:15
GOD IS GOOD!!!
My Mom just called....
Her CXR was clear...no signs of CANCER...
Her lungs are clear....One year post treatment!!!!
GOD IS ABLE!!!!!
Thank you Thank you Thank you!!!!

Sunday, May 11, 2008 3:23 AM CDT

A mother is a person who seeing there are only four pieces
of pie for five people, promptly announces she never did
care for pie. ~Tenneva Jordan

HAPPY MOTHER'S DAY!!!!!
Especially for my own mother...

I remember as a child....
How proud and excited I was to give mom anything...Homemade
or even the simplest gift. Dad always made sure Mom had a
coursage to wear to church....like all the "good" Mothers had.
She always acted so surprised!

Then after church...he would load us in the car..all of us.
I usually had to sit in the front between Mom and Dad....
and the other 4 had to sit in the back...(I guess seatbelts
and car seats were out of the question!!!!)
He would then drive us to Mason City....now 45 minute drive...
but all those years ago...I am sure it was much farther!!!

This was the day we all looked forward too.
Mom's big treat!
He would take us to McDonald's for lunch!!!
Not only McDonald's...but all 7 of us ate in the car.
I was always so jealous..one of the older girls always got to
go help dad carry out the burgers, fries, and pop for us all!
Those were the best Hamburgers ever!!! I can still remember
how good those tasted sitting in the car...Family intact!
I remember one year telling dad I thought I could eat 2 burgers...
and his response to me was...This from the kid who won't eat
one burger at home..when we have the BEST beef in the world...
and here you think you can eat two burgers.....
I know for certian...I ate TWO burgers that day!

Looking back, it sure doesn't seem like much...

Now as a mother...I know just how precioius those trips to
Mason City were...and I can only imagine how my Mother must
have felt...Her whole family together, laughing, enjoying
"good" food...and fighting over the windows in the car....

Those trips continued...The girls got to big to go...
We went several times without them...Dad even drove us around
the Lake at Clear Lake on occassion.
By the time I was in High School, Algona had it's own McDonalds...
Mother's days and burgers were never the same....

I am very greatful for my Mother and all she has done for me.
Her heart is pure!!!

I LOVE being a Mom...

Happy Mother's Day...from Team Tough!!!

Making the decision to have a child is momentous.
It is to decide forever to have your heart go walking
around outside your body. ~Elizabeth Stone

Friday, May 9, 2008 7:48 AM CDT

1 week at home!!!

The days have been all mixed up for me....and I have
accomplished NOTHING!!! My intentions are good...haha

Hollister is confused on what time he is suppose to be sleeping.
We have been up since about 3 this morning. He is still
awake and sitting in the chair. He appears to be quite
pleased with himself.

I on the other hand...might have to start drinking coffee and pop again...haha

Hollister still looks good.
His lab work yesterday looks much improved...
Almost everything looked "normal"
except the Lactic Acid...that continue to rise...It was
almost 5 yesteray...
That is high..Should be .05-1(ish)...
Lactic Acidosis is a problem with MELAS...
It has always been normal except when he has been very very
ill...
It has been trending up all winter...
Another puzzle....

Therapy yesterday was awesome. He did a great job. He was
awake and participating. Stretching was even easier...
He stood tall and was ready to go. He walked in the pacer
with Karen. It didn't take a lot of effort to get him going.
He worked hard and looked good...
He was very very tired....and feel asleep in the car on the
way home!!!
Hopefully, we can get him out and move this weekend....
Weather permitting!!!

Track is winding down...Hillaree has her last track meet
tonight.
Harrison finished on Wednesday.
Harrison has Speech and Debate contest tomorrow.
Hillaree is still swimming twice a week with her Special
Olymipic participants...She loves it...

School is winding down...all is done on May 30th!!!

finally the weekend....

Thanks to all who help make Team Tough strong!!!!!

Monday, May 5, 2008 3:51 PM CDT

Happy Cinco de Mayo!!!

Wish were were all out having a chips and a Margarita on a
patio somewhere...
I can only imagine how fun Hollister would be!!!
I have heard him tell Shawn during speech therapy on many
occassions in the past..."You know...I am half Ferstl and Farrell..."
Translates to to we like chips and drinks...haha

It is a beautiful Monday...Sun is shining and it is finally
warm.
I realize now that we were in the Hospital all last fall...
so lots of yard work to do this spring...I have spent the
better part of the day...doing some of last falls clean up
of the flower beds...
We have lots and lots to do this summer....

Hollister still has his sleeping hours MIXED up...
He is still sleeping now. Hoping he wakes up soon to enjoy
this nice day.
I feel the need to let him sleep when he can.

The weekend turned out to be a nice one! Saturday night
Dick and I with Hollister in the wheelchair, wheeled him
all over Beaverdale. We were gone about 2 hours. It was fun.
We ran into lots of neighbors. I think he enjoyed it also.
All that fresh air made him very very tired.

Yesterday, we had him outside most of the afternoon. He was
sitting in the sun, mostly sleeping. We had supper on the
front porch with our neighbors...
SUMMER IS COMING!!!

Hollister is still very weak. I have been adjusting his
feeding schedules...hoping the vomitting will slow down or
even STOP!!!

Team Tough continues to build strength...and we look
forward to Hollister's continued improvement!!!!

Saturday, May 3, 2008 03:09AM CDT

ONE day at home...
and counting.

Hollister did come home on Thursday afternoon. We left in
time to pick up Harrison from school.

Was good to be home. Seemed like we were gone much longer than
one week.

Each and everytime he has to be admitted is harder and harder.

Lots and lots of emotions tied to this, lots of fear.

We (in this house) for the last 6 1/2 years have tired to
live as normally as possible with all of the changes....
Way to many to think about....But, the reality looms that
we will again be slapped in the face someday....so hard that
we may never get up.....
We try very hard NOT to dwell on this and keep moving and to give
Hollister as much quality of life as he can experience.
We continue to look and pray for improvements....that maybe
just maybe the disease is slowing down...

I have to wonder when other people without a sick child...
say things like...."Well, you know we are all terminal".....
"We are all gonna die...someday...."
If I had a nickle for each time someone has said
that or something as hainess to me...money wouldn't be an
issue....
Usually, I walk a way thinking how stupid...and RUDE...
I do believe this is suppose to comfort me in some way.

To know how much of his life has been missed... and to know
for certain it will be short...
This is the reality we live with every day!
Hard to imagine saying to someone fighting CANCER...."Well, we are all terminal...."
Pretty harsh!
IGNORANCE gives liberties....
(to say and do what ever)

Hollister looks pretty good. He had a decent day at HOME!
Of course we are up...but he is smiling a lot and I hear
lots of noise...good noise...I am anxious for words......

Here's to a great May at HOME...let the days turn into weeks,
the weeks turn into months, and the months turn into years!!!!

Thursday, May 1, 2008 8:56 AM CDT

Hooray Hooray first of May...

Who doesn't love a May Basket????

Looks very dreary out..suppose to rain...
seems a lot like April!!!
Where are the Mayflowers???

Hollister looks good. IV Fluid was stopped yesterday morning,
he seems to be tolerating going without it...

He is still having some vomiting. It seems to be "normal"
tube feeding urping...Hopefully, that is all it is.

He is sleeping in this morning. I am hoping to get him in
the tub here. They have the best whirlpool tube. It is easy
to get him in and out and he loves loves loves it!!!!

May First is a very difficult day for me....

May First 2006 was Hollister's last day to communicate
with me.....
Everything changed in a moment...the moment was 8:30pm...

I have gone back into the journal to read what has happened
on and around May first...(like I don't remember)...
I will never forget sitting on the couch with him eating
popcorn and licorice out of the all of the May baskets,
before Hillaree and Harrison came home...
What I wouldn't give for that again!!!

Makes my heart ache!!!
What has happened and where we have been.....
was unimagineable! and yet he lives it each and every day....

I am thankful he is so strong and fights so hard.
He has taught me daily how important life is and it certainly
is worth fighting for....

Hopefully, we are headed home this afternoon!!
YAHOO!!

May First...TODAY IS THE DAY!!!!

Wednesday, April 30, 2008 10:04 AM CDT

Last day of April.
Doesn't seem possible.
The weather has been so unpredictable that it still feels like
March.

I really can't believe it is Wednesday. I have lost all sense
of time.
I keep reminding Hollister that I am NOT 21...and need to
sleep much more than I am!

When Hollister was admitted we hoped it would be a 24 hour
stay...(haha)...
I decided that a 24 hour stay for Hollister is about a week.
So I have that stuck in my head. Hopefully, the decision makers
and Hollister will have the same plan that I have.

Hollister is making slow and steady progress.

His Chest x-ray is looking a little better each day.
Anxious for the pleural edema to be gone!!!!

His diarrhea has stopped. He still has some vomiting...
But it is much much less.

The Blood Cultures are NEGATIVE!!!!!!!
His stool sample had some YEAST in it...No one seems to know
what that means....but he definetly has yeast in his body.
That is scary.

His Hemoglobin is still low...not sure why...
Anemia of the chronic disease...

Waiting to see what his lactic acid is today. Hoping to
slow down or stop his IV...Giving a little extra sugar
and volume hoping to feed those HUNGRY mitochondria in his
brain and heart!!!!

No neuro "episodes" or seizures....That is a true gift from
GOD!!!!! Graciously and humbly...Thank you!

He is slowly mending. He is very weak and tired...
He is sleeping a lot...and still playing musical chairs
looking for the perfect chair!!!!

When he has been a wake, he has been happy and lots
of his beautiful smiles. He has made us all feel better.
Sometimes, I think he looks better than he has in weeks.

To Team Tough and all who help us!!!!! Thank you!!!!

Sunday, April 27, 2008 7:21 AM CDT

18 weeks at home came to a screeching halt on Friday...

I am counting the the whole 18 weeks...Really, making it home
until midnight on Thursday....was offically 18 weeks at home.

Thursday..was not our best effort at home. No IV and no labs.

Poor Dr. Uthe....called her sevaral times...and thought
about admitting him Thursday evening...but he was resting
and I hated to move him.

Of course he woke up later and seemed to struggle more.
The vomiting was under control with the Zofran...but the
diarrhea was ugly...

We were up all night on Thursday and his breathing was
starting to make me nervous...

I called Dr. Uthe early on Friday morning and ASKED to admit
him....to be assessed by a Doctor, get the lab work and yes
an IV....

We came in around 11...

As usual Hollister has made things very very difficult.

First and foremost he is exhausted from struggling all week.
Tired beyond belief.

After much effort the labs and IV were going.
His labs didn't look horrible but his hemoglobin had dropped
almost 3 points in one week...a puzzle.

His Chest x-ray looked like CRAP....not what I wanted to hear.

An Echo was done on his heart...his function is still down,
but really no change...God is good and I thank him for that!

So, lots of fluids to help his poor angry mitochondria.
And on Saturday...lots of lasix to help remove all the fluid
from his pleural spaces...He did get a dose of Albumin Friday night.
His nutritional status took a hit from no food and all of
the vomiting and diarrhea.
A fine line.

Lots of anxiety and concern....

Sleep has helped him. He is tired and finally resting. He
slept Friday night..and it was good.

He had NO goofy neuro looks yesterday. Hopefully, the fluids and rest helped with that.

I continue to move him every couple hours...Musical chairs.
He breathes so much easier sitting up.

I remain comittied to hope!!!

Update on Harrison...I took Harrison to see Dr. Formanek
on Thursday morning...and his finger was not broken.
Yahoo. The tissue around it is really hurt but the bone is
intact. Amazing. He was thrilled.
But, he had to go the Pediatrican Thursday night and his sinus
infection is back....
He came home and showed me the NEW antibiotics and he said,
"they are so big, that I think they are bigger than the
hole in the throat..." Fortuantely, he has been able to
swallow them without MUCH trouble!!!! He looks and feels
miserable!!!

Hollister is resting well this morning...
Labs have been sent...

Hopefully, his lungs will start to stablize!

Team Tough continue to needs a boost.
Thoughts and prayers.

Wednesday, April 23, 2008 11:02 PM CDT

Today was one of those days.....

Hollister is struggling.

The IV had to be discontinued early this morning...
It was about to go bad...and it was hurting him..
My security blanket was gone...I am thankful that I was able
to get about 3 liters in before it went bad..This helped
buy some time!!!
This has been a very very long day. Hollister and I did not
see one second of the nice weather....I really hoped to get
him out...but we stayed in the basement again today.

I did not have any luck re-starting the IV...I did try...
got in the vein and ... it blew...Not good.

The nausea and vomiting continued all day. Nothing seemed
to help. The phenergen suppositories did not help at all...
and he was unable to sleep. He continued to get worse as
the day went on. Poor guy, I would get him in bed...he would
lie down...and bam....vomit...so I would sit him on the edge
of the bed..and make him get up to the chair...

It is not good for him to get nothing per his tube or mouth or IV.
He has not had any of his tube feedings in since Sunday.
So he is behind on Calories...and now fluids...
I tried the pedialyte/gatorade for 2 hours this afternoon at
25mls and hour...and he couldn't keep that in....

I finally called Dr. Uthe and asked for another medication
for nausea..
IV Zofran worked the day before...but without the IV...
She did let him have some Zofran tabs...
We talked about what was going on...and we are hoping the
medication helps and he can tolerated something in his gut!
It has been very nerve wracking...as he is not keeping his
medications down either....He takes 5 different seizure medications,
not to mention his vitamin cocktail for the MELAS, and his
heart medications....

About 5pm...he finally fell asleep. The phenergen and being
exhausted caught him. While he was sleeping I was able to
give the first dose of Zofran....
and he kept it down...and I gave his seizure meds at 10pm...
so far so good.
I also turned on the pedialyte/gatorade..only 25mls and hours...
it is a start!

I am ever confident that he can recover from this horrible
little episode. My goal is to keep him at home!

I see lots of things to be hopeful and encouraged about!
He has been moving about in bed...stretching his legs...and
scratching his head, rubbing his face...and pounding his chest.
He has been willing to try and stand and try and weight bear.
He has been able to support himself for the most part in the
chair.
He is very very weak....but I expect that!!!

Tomorrow, I am drawing the labs at home...Hopefully.
He is in no shape to leave the house!!! and it is suppose
to rain!!!

Hollister needs lots and lots of thoughts and prayers...

Here's to a quiet night and a peaceful day!!!!

Tuesday, April 22, 2008 1:42 PM CDT

I can't believe it has been a week since I wrote on this page.

My intentions were good, very good....

Hillaree is very excited....both of her swimmers will be
competing in at the state level of Special Olympics. I wish
you all could have heard her excitement talking about how
AWESOME it was!!!!

Hollister got his lab work done of Friday, Thursday therapy
was cancelled and the weather was so YUCKY... we took him on
Friday....again the weather was rainy...
But...
the lab only had to stick him once...and in his arm!!!!
Dr. Uthe called Friday night and some of his labs were
starting to look better. I was encouraged...
Saturday was again dreary, so we hung close to home!

Sunday afternoon was BEAUTIFUL! too nice to stay inside.
Harrison had 2 baseball games...to we took Hollister with
us. It was nice to get out...for me too! The sun felt great.
It was chilly when we got home at 7pm..and Hollister was
TIRED!!!!

Monday...It was so nice and sunny in the morning..I was in
a rush to get Hollister a shower and head out....
Not to be done.
When I was getting him up, he was showing some personality...
I thought OK...have it your way. He layed back down all
curled up in a ball..I waited for him to want to get up...
and BAM!!
Hands tremoring, legs straighted, arched his back, eyes in
the corner of his head.....
SEIZING!!!!
Changed the entire day...in one lousy moment!
Everything from that moment SUCKED!
Called Dick, broke my phone...
Couldnt get Hollister cleaned up....
Hollister puked and puked and puked.....
Finally got him in a normal postion on the bed with clean
sheets...not an easy task for 1 person and Hollister had
had 20 of diastat!!!
Finally he rested...

Hillaree had a track meet a DCHS...was hoping to go and take
Hollister...and of course it clouded up and started to rain.

Hollister looked better, or so I thought. Dick and Harrison stopped
at home for a moment, between Speech and Debate practice and
track practice for Harrison.

Dick and I were going to bring Hollister up to the back porch...
I really wanted out of the basement....

We have Hollister loaded on the stair-chair....and Harrison
comes in screaming...and very Shocky....

He was getting porkchops out the trunk...
(that Dick had bought on sale at Fareway...
they were such a good deal!)
and shut his finger in the trunk. He was outside screaming
for help....but we were in the basement...so we couldn't hear
him... Fortunately, our neighbor Julie was driving by and
could open the trunk so he could get his finger out of it!

So, Dick and I head with Harrison to the Blank ER for help
with the very hurt looking finger. The ice pack and motrin
helped to settle him down, but his middle finger on his right
hand does not look good. A puncture wound and very swollen.

We were sitting in the ER waiting to see the Doctor...and
Dick said his Porkchops were no longer a good deal! haha

It indeed is broken...and we will see and Orthopedic doctor
tomorrow. It was not through the growth plate..and he just
missed his knuckle!!!
He has been a trooper. This is his third broken finger...
He is worried about baseball...and track.
He is running Friday night at the Drake Relays...
It is on his right hand and he is left handed....so he
will do fine.

Hillaree had her hands full with Hollister...as the nausea
and vomiting continued....Gigi came down and helped her and
gave some phenergen...He was resting when we got home.
Hillaree did a great job and kept us posted on what was
going on at home.

I by the grace of God was able to start an IV on him last
night. It is in his left thumb. Not sure how long it will
last, but it is working well for the moment. He is still
nauseous...Holding his food until later.
I am sure his cells are loving the IV fluids...

He has been resting most of today. Trying to conserve his
energy...
Harrison went to school this morning. Didn't want to miss,
they were running the mile...

Here's to a quiet afternoon....

Team Tough continues to need your love and support!

Wednesday, April 16, 2008 11:08 AM CDT

A windy warm day...Not quite as sunny as yesterday...
but no complaints!

I am hoping to get Hollister out on the front porch
sometime today.

He remains crabby...Not sure if he isn't feeling well or what.
He is definetly tired and very low energy.
He was very slugglish and complained alot at therapy yesterday.
He didn't want to be stretched...and standing was very difficult.

He continues to have issues with day and night time. He likes
to sleep all afternoon and evening...and bam...Time for me
to sleep and he is awake and not happy.

Something is not right...More lab work tomorrow...

No school today for Hillaree. She is busy today with
special olympics. The swimming competion is today. The
girl she helped coach is swimming in Indianola today. How
exciting. I know Hillaree is very proud of her and how hard
she has worked! Hopefully, she will make it to the state
competion in Ames! Exciting. I am proud of Hillaree comitting
her time and energy to a very worthy activity!!!
Kudos to Hillaree..

Harrison has a track meet after school tonight. He is
excited. Running in 3 events and doing the long jump.
He loves track...and running. Might be his favorite. He
is pretty fast!! Most importantly he always works very hard.

Busy day for all...

Hollister and I are taking it easy. He is trying to rest on
the couch...sun shining on him...Life is good!

Continue to think strong happy thoughts for Team Tough!

Tuesday, April 15, 2008 5:12 AM CDT

TAX DAY...

Born Free....Taxed to Death! (Unknown)

A day that Hollister truly feared. He was so worried about
turning 18...and PAYING TAXES!!!
Used to make us all laugh.

He would never believe he is 21...and still hasn't paid
taxes...

Poor Hillaree on the other hand...had to write Mr. Internal
Revenue Service also know as the United States Treasury a
big fat check....at 16 any check you write is big and fat!
Very painful at 16!!!!
I only wish we could get Hollister's take on it! Would be
"Hill"-arious....

Hollister looked a little better yesterday...Certainly helps
to see the sun shining. Made it out of the basement!!!!
He was CRABBY....and lasted through the night.
He isn't sleeping much at night...and last night he was
"pithy" about everything...
Hopefully today will be better...

It is still suppose to be nice today!! windy but nice...
70's on Wednesday. YAHOO!

He has therapy this afternoon. I will be curious to see
if he particpates much. He is very weak. Hasn't done much
in the last 10 days...

I remain opptimistic that Hollister is turning a corner
on this feeling bad...and wierd "neuro" events....
Every day is a new day and an opportunity for success!

Team Tough needs a boost!

So, on this day of taxes...Think of Hollister and smile!

The hardest thing in the world to understand is income tax.
— Albert Einstein

Saturday, April 12, 2008 3:43 AM CDT

Let it snow
Let it snow
Let it snow....

Enough already...

I guess this is the year Spring forgot to come!

Hollister is awake....too much sleeping yesterday.
Sleep is what he needs...I really don't care when...
He needs a lot of it.

Talked with the Mayo Clinic...I was told to keep doing
what I was doing...Hopefully, this will straighten itself
out...
No Pressure!
He looked pretty good last night. Hillaree and I watched
movies with him last night. Not sure what he sees or gets...
but time well spent!
I continue to run lots of fluids through his button. Hoping
this is what he needs.
Lots of fluids means lots of laundry...Yesterday, I didn't
finish all that was used during the day. I washed one
blanket three times...It is like being on a sinking ship! haha

Today marks, 21 years ago...Hollister was baptized in the
Catholic church...Crazy to think how fast those 21 years
would go.
Never did I imagine listening to Father Hennessey at St. Lukes
in San Antonio, Texas....that Hollister's faith would lead us
all. Certainly not like this.
We knew from the moment he was born he was something special....
we had no idea...
Thanks to Bob and Ruth Winters for making it such a wonderful
special day....They did it all for us...Standing in as
Godparents...and opening thier homes and thier hearts too us.

Thanks also to Father Daniel Hennessey...He was a wonderful
Priest..who made it look so easy to be faithful. He touched
our hearts. He came to our apartment many times...he loved
the family that Dick and I and Hollister were...
What a nice thing to say...and remember!
He died suddenly a few years after we left San Antoinio.

He helped our Faith grow as he welcomed Hollister to God's
Family!

On this day 21 years ago we were filled with the hope and
love of a life just starting....
and today...I again am filled with the hope and love that
a life will be restored!

Think of and pray for Hollister....
TODAY IS THE DAY!!!!!!

Thursday, April 10, 2008 10:40 PM CDT

In less than 90 minutes we will be able to shout....
16 weeks at home...
AMEN!

What a week it has been. I have had a feeling that an anvil
has been sitting on my chest...and I fear I may be right!

Something is going on here.

Hollister has had a tough week...and deep in my soul I know
it can't be good...

He is very tired and weak...He did let Karen stretch him
today...He even feel asleep on the table. He was not up for
walking or even standing no matter how hard Karen tired or
what piece of equipment...he couldn't keep his eyes open....

We came home from therapy and he slept on the couch for six
hours until we just moved him to bed...TIRED...

He is resting listening to his ipod...enjoying his music
I hope.
I am hopeful he will sleep tonight...I didn't get to sleep
on the couch for 6 hours..haha

I still believe something nuero is going on...or something
is out of whack with the MELAS....So, we did call the doctor
at the Mayo Clinic..he agreed with my thoughts and added
several different levels to check with his labs today...
He also reiterated that if some of his chemical levels are
elevated or too low...this could certainly cause some neuro
difficulties...
And the labs that were back tonight are way off....
This is a change....last week they looked good!
His lactic acid was almost 5!!!!! His potassium is high
and his sodium is low...makes no sense, he is on lasix(a diuretic)
will wait to see what else comes back with the rest of the
labs in the morning....They will be faxed to the Mayo Clinic
first thing in the morning!
Hopefully answers will come and we can get the MELAS back
under control....
My gut has been telling me since his birthday...that something
was changing......

Something to celebrate...that Hollister would be so proud of!
We all know how much Hollister loves the scotch-a-roos....
Birthday treat of choice. In the last 6 1/2 years I have
made many pans for Blank therapy and the school at blank....

A few months ago Sara(a child life specialist...and
Hollister's old boss...who we adore!) and I got into debate
on whose scotch-a-roos were better.....We decided we would have
a "bake Off" (you don't really bake them)!

The Bake off was today....Sara, Kathy(another child life
specialist) and myself...A panel of five judges...even
the President (Dr. Stephenson) of Blank Children's Hospital
thought it was important enough to join the panel...
Not to mention Dr. Valley (Dr. Flores from the PICU), Alyssa , Ann (PT),
and a registered dietician...
this was BIG! haha

First of all being from Algona...makes you a expert on
Scotch-a-roos....Thank you to Nancy Bjustrom (Ortloff)...
Her mom made a batch for every junior high bakesale....
Who didn't love that....I was hooked 25 cents a bar!
I lived with Nancy my first year of college, now...the
recipe was mine....

Now, a few years later...I am a CHAMPION scotch-a-roo
maker....Trophy and all...Apparently, I was mislead...there
was no cash prize...haha

Thank you to the Child life department at Blank....
They do extra ordinary things for many patients and families...
They have been so improtant to us since day one
of Hollister's illness...
We couldn't have come this far without them....
Hollister has always loved those girls!!!!!

I know just how proud Hollister would be!

Thoughts and prayers are needed for Hollister...
Answers needed before the weekend....

Team Tough needs a boost!

Monday, April 7, 2008 11:06 AM CDT

Turned out to be a pretty nice weather weekend.

Saturday, we were outside most of the day.
Hollister was even outside in the sun. He did not look good,
so Hillaree and I moved him to the porch to nap on the glider.
He was definetly having some kind of "neuro" situation.
So, he got some drugs...and pedialyte/gatorade...while he
rested with the sun on his face. He seemed to have a fever...
he was sweating and shivering all at the same time.

Makes absolutley no sense as his blood work on Thursday looked
as good as he has in a long long time....

Then on Saturday night, he looked good. He was up in the
chair smiling and letting me irritate him with ice cream
and a spoon!

Sunday was not quite as nice..but still OK...
He was tired and crabby.
He peeed a lot yesterday, which I though might be good for
his feet. But no big difference was noted...

He looked Ok, and when we took him down to be at 9pm, he
was smiling. He tolerated his meds and we were laughing at
the TV...He seemed good.....

At midnight, it was noticed that something was wrong!
Not sure what was going on...seizing not seizing...AHHHHH
He appeared to be breathing Ok and even squeezing my hand...
I finally decided to get him up and changed the bed....

Well, everything went wrong that could..On the edge of the bed..
puking, seizing...and by ourselves...Clear down in the
basement by...can be a problem...
He is taller than I am...and when his weight is dead weight...
hard for me to handle. he was almost on the floor!
I finally started screaming as loud as I could..hoping someone would hear me...
Woke up poor Hillaree and she got Dick...
Hollister was struggling...
Finally, Dick and I were able to get him back to bed...
and I gave the Diastat(20mg of rectal valium)...and we
waited and waited...
Puking, puking, puking....
Eyes fixed and dialated....
Reacting to light which is good...
not sure what is going on with him!

It was a very long frightening night!

He is finally and still resting now.

Hillaree was up all night with us..She is tired..stayed home
this morning to rest....
Harrison...poor guy...had to go school early for help before
a test....
It is hard to remember that life goes on...and Dick has to
go to work...and Hillaree and Harrison have to go to school.
All while worrying about what will happen today with Hollister.

Seems these episodes are getting closer and closer...

Still trying to figure out our next move....

Team Tough needs lots of thoughts and prayers for continued
healing and strength!

Friday, April 4, 2008 5:06 AM CDT

15 wonderful weeks at home...
15 weeks ago it was the weekend before Christmas...
and now 2 weeks after Easter it is looking a lot like Christmas.
Yesterday we had snow and it was some of the biggest Flakes
(chunks) of snow I have ever seen. Of course it was
nasty when it was time to got to and from therapy!

I never tire of marking our time at home! 15 weeks sometimes
seems like a miracle....

Hollister did OK at therapy. He was tired and wasn't very
interested in being stretched. Thursdays are always tough
as he gets his labs drawn before therapy. Yesterday he had
to be stuck multiple times...and in both very swollen feet.
Can't feel good, and he lets us know how unhappy he is. This
follows right into therapy.
Fortunately, Karen and Hollister established a routine long
ago. He complains and she makes him work..Has been going on
over 6 years...It has always been a love hate relationship...
Karen loves Hollister, and Hollister hates therapy! haha

He looks pretty good. He is getting some strength back. His
standing is improving. Hoping with the nice weekend, we can
get him outside, suppose to be 65 tomorrow!

Not sure what is going on in his brain. I wish we had some
way of knowing. He is definetly having some sort of neuro
event...Are they truly seizures...hard to know.
Karen and I talked about it at therapy..and something is going on.
Is it good or bad...who knows. Wondering is something is trying
to reconnect, he is trying to see something, is he overtired
at that moment... I will keep watching and waiting for him
to present himself....
I of course am hoping that it is something trying to reconnect....
and tomorrow he speaks!

Hollister's illness certainly has been a difficult situation.
I try not to dwell on it too much...but somedays it is hard
not too.
For someone who talks as much as I do... it has been difficult
to sit quietly for almost the last two years, to much time to think.
(one of them needs to start talking, Hollister or Hooch!)

I have had to come face to face with the fact that Hollister's
life is very difficult. I sit her every day trying not to
remember life before, no pictures, no home movies, nothing!
I try hard not think what he is missing at 21. He has been
cheated. I certainly can't allow myself to think about the future.
No plans, just today. Today is all I have.
Unfortunatley, today Hollister's disease is at the top of
list...
today and every today...forever!

Here's to marking 15 weeks at home. Hillare doesn't have school
today...
There will be noise in the house...other than the washing
machine...haha

Grandpa and Grandma are here, on their way home from Arizona..
They might have brought the snow with them...haha..
Glad they got to spend some time in the sun...Last year was
missed because of the Mom's treatment for the lung cancer...
They look tan and rested..Two of my favorite things!

Here's to a great weekend...and #16 is on it's way!

What lies behind us and what lies before us
are tiny matters compared to what lies within us.
~Ralph Waldo Emerson

Wednesday, April 2, 2008 8:45 AM CDT

St. Patrick's day is past....Springbreak is over,
Holy week, the Easter Bunny has been here, March went
out like a lion....and April Fools is over...
and now today...
Hillaree is sixteen and a half today.
Hard to imagine..She spent her 16th birthday with Hollister
in the hospital...Wasn't much of a sweet 16!

Time has passed and I thought the words might come easier to me.
I am having a very hard time knowing what to write.
Generally, I write like I talk and I have never been short on words...haha

I have stuck in my head...that Caringbride may be stupid...
Someone actually said that to Dick....that caringbridge was
stupid and they would never ever read it...Unfortunately, it was
someone who probably gets information about Hollister from this page....
and truly should be supportive to Dick.....

It may take a few days for me to get back in the swing of
writing notes.
I was very hesitant when this page started so long ago.
It proved at that time...almost immediately to be a very
useful way to get accurate information about Hollister to
everyone. It really helped Hillaree and Harrison at school.

Hollister has been sick for 9 years....9 years ago he had that
first seizure...Our lives changed immediately. We tried from
day one to figure out what was going on with him...Almost
12 year olds don't just have a siezure....Hard to imagine
Harrison was only 4 years only and Hillaree was only 7.
They were babies....It is hard for me to imagine our life
before any of this started...I hope I appreciated it then.

I have been asking myself alot of why questions....
I already know the answer of why not...
But, right now.....That is not good enough!
I already know that God doesn't give you more than you can handle....
and I say God must have some sense of HUMOR...because most
days this is way more than anyone could handle.

As I look back to April of 2006..this is the last month
that I would get to talk to Hollister and would answer me.
We went to Hockey games, lunch, therpay, college classes...

I miss him terribly and I am sure he misses life also. How
horrible to sit in a body that doesn't work and a mind that
can't communicate.

MELAS SUCKS.....
all neuro-muscular disease sucks....
If you think this page is stupid..dont' read it!

As for Hollsiter he looks good. He looked as good yesterday
as he had in a long long time. I was thrilled. His eyes looked
very bright and clear. He seemed to be looking around at his
environment a lot more. He has been much more interactive and
is even trying to occassionally use his left arm. I love it
when I am sitting by him and he grabs out at me with his arm.
I continue to be hopeful and optimistic that Hollister will
benefit from spring with all of its hope and rebirth.

Hollister continues to fight hard and work hard. He is the
strength behind us all. His faith has always been his rock.
Even as a child he drew people to him and was adored by many.
His smile is bright and warms my heart and soul.
I believe he is still in there and we as team tough will
continue to fight the good fight!

Where man sees but withered leaves,
God sees sweet flowers growing.
~Albert Laighton

Monday, March 31, 2008 11:46 AM CDT

Working on an update....

Hollister continues to have some ups and downs...
A seizure day every few days...
Otherwise he looks pretty good...

Will write more later....

Friday, March 14, 2008 10:51 AM CDT

12 weeks at home...
12 big weeks at home!!!!

What a gift!

No projects or cleaning done but we are all at home together!

Spring break officially started yesterday at 3:15...
YAHOOOOOOOOO

Kids are glad for a week off of school. There is some saddness
that we aren't going somewhere "cool" like everyone else...
I mean....everyone is going somewhere!
Mean ole Mom reminded everyone this morning as we were all
in Hollister's bed...that we are thankful that he is still
with us....and if he can't travel...than we can't travel...
Hard lesson on the first day...

Life isn't easy and it certainly isn't fair....
(as we all know the fair comes once a year...in August)haha

Hopefully, that is the only time I have to play the
"thankful for Hollister Card..."
Hillaree and Harrison are good kids...I am sure they wish
thier lives were normal...What ever that is....
So for this spring break, we are at home....
12 weeks at home!!!!

I spoke too soon on Wednesday, hoping the worst was over.
Right after I finished the note, Hollsiter got up. and he
started seizing and vomitting. I was very lucky I could get
him back to bed. He is very heavy when he is dead weight.
It was a repeat of Sunday. It was no fun. Most everything
I need was upstairs...and we were in the basement...all day...
Fortunately my neighbor was home and was able to come help
me get my "stuff"!
We did send some labs and they all looked OK. The CBC clotted..so no WBC's....
Hopefully, he is not getting into a pattern. Not up for that!
He did look a little better Wednesday night....
Thursday, he was very tired...
Thursday night him and I were watching TV...Dick was working,
Hillaree and Harrison were at weight training...and we were
home alone.
I went to the kitchen and BAM...fell out of the chair!
I had been out of the room less than 2 minutes...I had
sat there for 5 hours...I couldn't believe it....
It was a struggle but I was able to get him up...and of
course we were both crying and he has a big red spot on his
forhead....
I am ready to say good-bye to this the week of his birthday!!!

He is still sleeping this morning....Hoping all is right
when he gets up!

Hillaree and Harrison are busy and out the door...Lots to do!

Team Tough continues to need your thoughts and prayers...

Wednesday, March 12, 2008 11:23 AM CDT

What a difference a day or two can make...

Spring is trying to send old man winter home!
Suppose to be in the 50's again today.
Yahoo!
Our street from all of the snow melting looks like a river,
sounds like one too.
Even the brown muddy yards don't look too bad!

Hollister looks much better!
He was tired on Monday but no more seizure activity!!!!

Yesterday we made birthday treats to share at therapy...
Got down there and Karen was sick, Darn no therapy!
Left the Texas shaped scotch-a-roos.....
It was good to get out. Hollister and I rode with Dick to
an appointment and sat in the car and listened to the radio.
I know, I know....how lame.
Hollister rested in the car and we were out of the house!
The sun was very bright!!!

When he is sitting up, he looks like he has so much to say.
I like to hear his voice words or no words! He is still very
strong. He is standing with much less assistance. Can't wait
to start walking outside. Won't be long!!!

He is still sleeping this morning. It is very dark in the
basement and to his mind it is only 10:30. Time is a hard
concept.
I can't imagine how tired he is. It takes so much energy just
to do the smallest thing. Sleep is good.

FYI...for all who knew I was trying to get 2 urine samples
to send back to the Mayo Clinic (since January)..I did it
and they made it there, dry ice and all. They had to be
sent airmail from Des Moines to Rochester....
Apparently they went first class..Not sure if they got a meal...hahaha
Cost $42 to get there. Dick told the guy he could drive them
there cheaper...and get them there the same day....
The postal worker had no sense of humor!!

Talked with the Doctor at the Mayo Clinic yesterday. He was
happy to know the urine had made it. He also was concerned
about what was going on with Hollister. He thought maybe his
sodium was low...and I know that it has been. It was so nice
to have a Doctor who knows...and cares...

Not sure what is in store for the day. I guess it depends
on how Hollister wakes up.

I continue to have faith and hope that Hollister will continue
to make signifigant improvement...Not on my time but on Gods!

Heres to another great spring day!

Sunday, March 09, 2008 11:39 PM CDT

Happy Birthday to Hollister

21 years ago at this exact moment Hollister was making his grand entrance.
Grand it was not!
Hollister decided he didn't want anything to do with being
born. 42 weeks, pitocin for 18 hours, epidural finally at hour 15....
and he was pulled out with high forceps....
He was content where he was! Makes me wonder if he already
knew how difficult his life would be and he wanted to stay
safely with the angles....
Looking back on his 21 years, he was the happiest child and
he loved everyone. We took him everywhere and he was a joy.
He was funny, active,smart, and perfect.
His eyes were the most beautiful eyes! He was the child everyone
wanted to keep. I was so lucky he was mine!
He didn't get sad until he had that stupid seizure in 6th
grade. Could be he knew that what he was told by the angels
was coming true...and his life would now be changed forever.
His beautiful blue eyes were sadder and wiser!

Silly I know...
But, when you walk in my shoes you are constantly looking for
something to make sense about something so senseless!!!!!

This birthday was even worse than #5 with the chicken pops!

We took him out to a movie. He slept through it, but we
were out and together. We headed to get a pie(remember he
always gave up chocolate for lent and ususally had lemon
meringue pie)so, I thought he might eat a bite of pie...
(always hopeful)...Then we were headed to Hooters...
Even if he didn't eat any I thought he might like the
atmosphere. Was going to be a great day. Even the sun was
shining and the snow was melting.....

In the Baker's square parking lot, I noticed his eyes were
in the corner of his head...NOT GOOD...so we headed home..

He continued to seize and vomit for the next 3 1/2 hours...
It was terrible. I kept giving drugs hoping to get them to
stop and still have respirations...It is a fine line. I hated
to take him to the hospital, there are way to many sick people there.
I was able to get them to stop and so did the vomitting..
and he rested.
My heart was broken and my brain was tired.
He rested well for a couple hours then was up most of the
night. He is very very tired today...Seizures and drugs....
Tough combination.

The pie will wait. Didn't sound good to anyone.
Hard to celebrate a birthday without the boy.

Here's to Hollister, the toughest, coolest boy I know!

Happy 21st birthday!!!!

Friday, March 7, 2008 8:37 AM CST

Today marks 11 weeks at home...no hospital admissions!!!!
(don't want to jinx him....)

11 weeks at home...
Certainly no record but worth noting!

What a week it has been.
Snowing this morning....winter continues...Old man winter
can go home anytime he wants, he is bringing us down.

Hollister had a better day yesterday. His left eye has been
getting bigger and more bruised each day. Hopefully, it will
look better today. He is still sleeping and getting his breakfast.
I will be very happy if he can keep it down.
He has that nasty little cough that agitates him enough to
throw up! Last night he did me no favors!

His day at therapy was a little better. He did let Karen
stretch him without much trouble. He stood tall and strong
several different times. We tried to get him to take a few
steps without the pace.....wasn't too exciting. At least we
tried.
The blood draw...AHHHHHHHHH
Stuck him only twice and one of them was his left foot.
It amazes me that blood could be gotten from his very swollen feet.
He doesn't like those feet touched.
Which is right before therpay, making him mad.....
It all makes sense, why he is "pithy" in therapy on Thursday!!!!

Two days and counting until the birthday. I am having a very
hard time marking this date on the calender. Don't get me
wrong, I am thrilled that Hollister will be spending another
birthday with me. There were several days last year that this
looked nearly impossible. I am selfish...I want more.....
But, this week...month is filled with lots of thoughts and emotions.
He will be 21...21 is a great birthday for lots of reasons...
It is hard not to look back and remember some pretty great
birthdays...with friends...hockey...family...and life.
but, at this point...I am unable to look back and celebrate.
His 19th birthday was the last one celebrated with him....
awake, alert, talking, walking, eating... It was a Thursday...
Therapy, scotch-a-roos, mexican food and to the Civic Center to see the
Lion King. Hollister thought we should watch the Lion King movie
to make sure we remember the story. So, we spent the afternoon
together watching...I am grateful, I took time to be with him.
He did not want to go to the Civic Center...and he only
went to make me happy. He felt he owed me that....
and now....2 years later.....I am the one who owes him....

I wish we were taking him to Hooters to celebrate 21 with
wings and a beer!!!!I know how much he would be looking
forward to that!

Sunday is the Day..........

Wednesday, March 5, 2008 10:06 AM CST

Waiting for the snow...
More coming this afternoon.

4 DAYS TO HOLLISTER'S BIRTHDAY!!!!!!

Yesterday was a day not worth repeating!
The day was full of promise and hope in the morning.

A cold shower for Hollister, shifted the momentum for the
entire day.
Sometimes, when it is so cold...getting warm water to his
shower (in the basement) is a struggle...and struggle we did!

On to therapy. Not a happy camper. I believe he was still
mad at me...for the shower...He looked mad. Stretching was
not overly enjoyed by Hollister. We did talk about his
birthday for a while and I think he liked that.
To the Pacer...not to interested in walking at all. He would
not bring his head up. He was trying to lean and sit. We
tried and tried. He was "PITHY"!
Then he stood up and walked up the incline to the atrium and
stopped in his place, not one more step to be taken. ENOUGH!
He then looked at me, screamed and pounded his chest. It was
loud and clear, he was mad....at me!
God Bless Karen and her willingness to try. She exhausts herself
working with him.
I was also thankful that Dick was along and could help get
him to the car. He can be very stubbborn!
Home was no better.
He was sitting in the rocking chair....looked like he was
resting. I was at the table not far from him...and BAM...
He fell out of the chair! The sound of his head hitting the
tile will not leave my thoughts anytime soon. I couldn't
get there fast enough! He was crying...I was crying....
Wasn't good...I comforted him on the floor until Dick came
back from picking up Harrison from school. I didn't want to
try and get him up by myself!
He helped pull himself up and we sat him back in the chair.
I hated to let him lay down immediately....
His left eye is swollen and my get black. It definetly hurts
him....and me.
I did finally lay him down and he rested nicely for a couple
of hours...with me at his bedside...
My heart aches...and now I can't stop the tears. I feel so bad.
He slept well through the night and has been up this morning.
He is back in bed now watching and listening to the "Rice is Pright"

Today has to be better than yesterday. Not much planned...
Laundry and waiting for the snow!

Keep Team Tough in your thoughts....

Monday, March 3, 2008 9:56 AM CST

Here it is Monday morning and I never got this note posted...
Hollister is sitting in his room, enjoying the music.

Winter is back...cold and nasty...Rain, sleet and snow..
Kids were disappointed, thought school would be late!

6 days to the birthday!!!

FRIDAY, FEBRUARY 29th...
LEAP DAY.....

10 WEEKS at home!!!!!
10 WEEKS at home!!!!!

Music to my ears.
I am still grateful for each and everyday at home.
Never gets old to me. Not getting much done...but home
is a good place to be.

Hollister's labs look OK. His dilantin is a little low,
sodium is a little low...Not sure how it can be....with all
of the pedialyte and gatorade mix he is getting at night.
Medibolically, he is very difficult.

Hard to believe that February is over, even with the extra
day.
Took Hollister to Harrison's Hockey game on Thursday night.
Tournament time. He was playing at the Bucs arena.....
Way to many memories to face. That is the ice that
Hollister learned to skate on...I can still visualize him on
the ice skating with the folding chair...He loved playing
hockey....
Sometimes, I close my eyes and I can still see him whole....

Heading to a Fish fry in Granger tonight. Plan on taking
Hollister. Will see how that goes...Heard they have the
best fish....Couple more chances before lent is over.....

Saturday...MARCH 1st...
It appears March is coming in like a lamb...not sure
that is good or bad. Harrison had his last Hockey game this
morning..finshed in 2nd place...most importantly, he scored
a beautiful goal this morning.
Loving the weather today, sunny and warm...50 degrees!

8 days until Hollister turns 21...I can't believe he will
be 21! I am ready to have him back...talking, walking, and
eating...I pray for recovery for his birthday!

Hollister is so tired today, not sure why. He doesn't look
as good as he has... Slept most of the day.

Sunday....March 2nd
Another Beautiful day....64 degrees...
Lots of snow and ice melting. YEAH!!!
Was nice to see the neighbors out and about...
Hooch was happy to see so many of his friends....

Hollister still looks rough. Not sure what it is.
He has an occassional cough that always brings vomitting.
It is an ugly cyle. I am anxious for him to feel better.
Makes me nervous!

Here's to a great March..

Indoors or out, no one relaxes in March, that month of wind and taxes,
the wind will presently disappear, the taxes last us all the year. ~Ogden Nash

Wednesday, February 27, 2008 11:07 AM CST

Wednesday...not sure where time is going..

Hollister would be so proud.....
His Dowling Maroons are playing in the girls state Basketball
Tournament this afternoon.
No body loves the Maroons more than Hollister.
We have listened to most of the games on the radio.
Winter makes it difficult to take him out at night.
If we aren't at the "Well" today, we will be cheering at
home.
Hillaree and Harrison will be there with all of the school
pride the DCHS represents...

I loved having the kids home for extra days. Hate when the
days off are over. It is nice to have so much LIFE in this
house. It is fun to have the kids and thier friends over.
Hillaree and Harrison both have friends who aren't afraid
of Hollister.....
I know that probably sounds crazy....but life in this house
no longer fits a "normal" mode. There is a lot of medical
equipment, supplies, and things that are strange....
It is all good, when friends aren't intimitaded by it.
It is even better when, Hollister can sit with the kids
and listen to all of the noise of life....
Good for all of us!

Sunday a lofty goal was met...Hollister got a haircut...
Boy did he get a haircut. SHORT!!!!
He had a lot of hair to cut. I was joking that he almost
had enough to donate to locks of love...haha
He looks good!

He did indeed make it to therapy yesterday. Karen stretched
and stretched him. He didn't love most of it. She is
tenacious and so is he. Then came the Pacer and walking.
He did take some good steps...but he also got very stubborn
and decided to rest.
He got to see the Peterson family. Lexi, Toby, and baby Bjorn.
A coincidence they were in the Blank lobby when Hollister
came out walking in the pacer. Was fun for Hollister to
have a cheering section...but he wasn't taking another step!

Hollister loved his time volunteering with Toby and Lexi.
It is hard to remember that 2 years ago...he was working
with them...He was so happy and proud of Toby and his
hockey achievements!

Even though I spend everyday with him...I am lonesome for
him. I miss all of our crazy time and conversations.

Cheering for Dowling....
GO BIG D!!!!!

Friday, February 22, 2008 7:38 AM CST

Another Friday....

You know what that means....

9 Weeks At HOME.....
Let's all say it at the way the Count on Sesame Street
would say it...
9 Weeks at home....AHHHHHHHH.....
Sounds good to me!

So much in nine weeks. It was almost Christmas 9 weeks ago!
and now we are in the middle of lent....Easter is fast
approaching.

Hollister did not make it out of the house for therapy this
week. His feet are still very big and swollen. They look
painful...and he doesn't like them touched.

He has been in bed a lot. I know he is wondering about that!
I never let him lounge in bed. He needs to be up and about...
but not this week.
He is eager to get up and stand, even willing to try and
take a few steps. This is very encouraging to me.

He has been quite vocal. I believe he thinks he is funny
sometimes and is quite amused with himself and laughs
and laughs...It is so good to see that smile and hear him
laugh!

Other times...he is mad! Boy oh boy is he not afraid to let
you know he is upset. He likes to yell and hit his chest.
Usually it is directed at me, for some reason.

I keep reminding him, that I like to hear his voice not
matter what he is saying...but I do like it better when
he is trying to say words and not just YELLING at me!

Last night in the cold...we went to an Iowa Stars Hockey
game. Took him out slippers and all. It was a fun outing.
We don't get out enough.
Hollister seemed to enjoy the game. He did better and was
more alert once we moved him from the wheelchair to a regular seat.
His friend Toby Peterson had a good game...we kept telling
Hollister what he was doing....giving him the play by play....
Again, I am reminded of Hollister a couple of years ago...
when we were at a game..giving him the Toby updates. I
remember Hollister yelling at me for doing that a couple
of years ago. He told me he was able to see and used to
play hockey.....
I only wish words would have come last night....Toby got a
penalty and spent 2 minutes in the penalty box...Believe me
Hollister would have had something to say.
We did get to see Lexi and Bjorn...Toby's wife and baby...
Hollister always had a huge crush on Lexi...When we told him
she was by him...he certainly sat up straighter and was very
smiley!!!!!
Was a good night!

I wait patiently for his words... I know they are there and
he is working on them.

Have to go get his labs drawn today. Didn't want to tire
him out yesterday....

Hillaree and Harrison are home..Conference...No School for
a couple of days. Good for all for all of us.

Hillaree is going on the Quest re-treat. Sophomore retreat
at the ST. Thomas Moore Center..Sunday and Monday.
Harrison is going Skiing in Boone with my cousin Becky and
her family on Sunday. He is very excited.

Looking forward to it getting into the 30's over the weekend.
Crazy..already thinking about what we could Grill...haha

9 weeks at home...

GOD IS GOOD!

Tuesday, February 19, 2008 2:28 PM CST

COLD COLD COLD......

I am tiring of winter...enough is enough!
It is very difficult to take Hollister anywhwere.

His feet have been very swollen since the heart surgery
in September. He has still been able to wear his sandals.
But...
Sunday his feet were ginourmous... He stayed in bed all day.
Hoping it would help his feet to drain.
No luck...
Monday, he did get out of bed briefly.
Peggy came over and stretched him and he stood.
Today...They are still huge....so he has been resting
in the chair and bed all day...
No Therapy...
Lots of music...he appears to like the music.
It is a little loud for this Mom...but the 80's lunch was
a nice touch.

I can tell he is as tired of the basement as I am
but it is the best place for him.
We are missing the sun!

He is still throwing up more than he should. Not sure what
that is all about. I have tried running his food slower
but it doesn't make a difference!

Life continues all around us...The kids are busy.
The good news is that it is staying daylight longer...
Spring is coming!

Keep Hollister close to your hearts.
Through all of you he is gaining strength!

And in the end, it's not the years in your life that
count. It's the life in your years. ~Abraham Lincoln

Friday, February 15, 2008 11:42 AM CST

8 WEEKS AT HOME!!!!
8 WEEKS AT HOME!!!!

Happy Birthday to Dick...
Happy Birthday to Dick...

What a cold day to have a birthday..
A Friday birthday when you are young means lots of
good things..from pizza and sleep overs...and when you
are 21..a birthday weekend at every bar you stop at...

Now a Friday birthday means, darn you have to work on your birthday.....

Youth has its advantages......

What week it has been.

Hollister has been very spunky...Spunky is a good thing
when you can channel the energy and use it positively!

Tuesday at therapy with Karen he did walk in the pacer.
It was a lot of work...but he did do it. He walked the
minimum he could and then stopped.

He did have a seizure on Tuesday night. He was tired and worn out...
I guess all of the bickering between him and I had taken a
toll on him.

Wednesday was a very quiet day. He rested most of it.
Wednesday night Dick and I had to go to a wake for Austin,
a boy who had been our neighbor when we lived on 55th street
when Hollister was little. They were buddies and played
everyday. It hit us hard knowing how upset Hollister would
be. He was truly his first friend...someone you never forget.
Lots of happy memories...that are even more painful to think about!

Thursday was therapy and lab draw day. Therapy he had
a lot myoclonic jerks, especially in his legs. He did stand
but he was very wobbly! The stretching is getting much easier.
We are using the hospital lab now...new girls...and of course
we had to take him back after therapy, one of the samples
had clotted off....He was not happy!
The good news is that his lab work continues to be stable!
Can't beat that!

I am glad it is Friday...I know not much of a difference for
me, but I am tired of this week. It has been one of those
weeks....
As my friend Chris likes to say....
"Sometimes you eat the bear and sometimes the bear eats you!"
This week for me, the bear is winning!
Seems like every time I turn around..something is wrong or
someone is hurting....too much!

As the weekend approaches...
and Dick's birthday is celebrated!

I again am reminded that God is Good.
I am listening...I only hope I hear him.

8 WEEKS AT HOME!

Friday, February 8, 2008 4:02 PM CST

7 WEEKS AT HOME!!!!
7 WEEKS AT HOME!!!!

Music to my ears....

What a week it has been.
Way too much weather and togetherness!

I am ready for spring...

I realized that when Hollister and I went to therapy on
Thursday...That we hadn't been out of the house since
therapy last Thursday....
Not good for either one of us.
and boy did we get a lot of snow.

Hollister had his lab draw yesterday....as usual....
and it was amazing, only one stick.. BLOOD. I don't know
when that happened last. One little stick, and it was GOOD!

On to therapy. He had a nice surprise from his buddy Shawn.
Hollister was happy to see him. He didn't show it much but
I know how much Hollister likes Shawn, so he definetly was
happy to see him.
Hollister gave Karen the usual hard time. Hollister is much
bigger than Karen and she has to work to get him moving.
And...once again he stood frozen and stubborn. Wouldn't take
a step...even with all of the pushing and pulling!

After therapy, Dick and I took Hollister to the Blank lobby
to put on his coat...and he was smiling and laughing. I
couldn't believe it. He knew that he had beat Karen...and
did what he wanted...He always did like to be in control...
Was good see the old Hollister.

Our new geneticisit (from Mayo) called to ask how Hollister
was doing...I couldn't believe it. He wanted to make sure
he was doing OK and if I had any questions...WOW...
How great is that.
He also wanted to make sure I had started the music therapy,
he thinks music will help Hollister's brain....
He has his I-Pod in all the time...
We will try anything...

Dr. Uthe (pediatrician) called with the lab results...
and for the first time since we have been home.....
His labs look GOOD. She couldn't believe it herself. His
WBC was down to 7,000 and his electrolytes were NORMAL,
and his Dilantin was therapeutic...Unbelievable.
His Lactic Acid was still 3...this is too high, but lower
than last week.
She is hoping that whatever "virus" he may have been fighting
is gone!

He looks good. He is vocalizing a lot. Most of it is
yelling. Which is fine with me, we have to start somewhere.
I am happy to hear his voice!

I continue to have high hopes that Hollister will
continue to improve. He is STRONG!

Looks like another very cold weekend. YUK!
Was nice to see the sun shining today.

Keep Team Tough close to your hearts!!!

Tuesday, February 5, 2008 1:18 PM CST

Fat Tuesday!!!
It is easy to love a day named Fat Tuesday.....
I was making soup for supper tonight, and Harrison said,
"That's not right, today is Fat Tuesday...We are suppose
to eat something GOOD!"
Not sure what he means by good...I was hoping the soup would
be good..haha

Hillaree and Harrison are both on their way home from school.
SNOWING....SNOWING....SNOWING...
It is good to be a kid and school is gets out early. Doesn't
happen often in Des Moines, so they will be thrilled!!!

Hollister didn't make it to therapy. Doesn't make sense to
take him out on a day like this...He would be celebrating
no therapy, if only the words would come.

I did get him up and shower him, he is now sleeping on the
couch.

The vomitting continues, not sure what is going on. I am
keeping track..trying to see what I can change in how things
are done. He doesn't have an extra weight right now, he only
weighed about 135 when he was weighed at the Mayo Clinic...
He is now 5'10" tall, when he stands tall. AMAZING...

When he was first diagnosed when he was 14 1/2...fall of 2001....
He was only about 5 feet tall...and 73 pounds...
He was skin and bones...It was frightening...We had no idea
how thin he was...He was very good at wearing multiple layers
of clothes....

He worked very hard to gain weight...He did all the stupid
things we asked him to do. The most he ever weighed on his
own, was 118 pounds...That was a great moment....He could
usually maintain his weight around 111...

The G-tube has afforded him with lots and lots of calories...
he was up to about 145...on his best day.....

The reason the history...
We were told that because of the MELAS, he would never grow
any taller and gaining weight would be nearly impossible....
Short stature is a diagnosing factor of MELAS....It was
assumed he was short....

Six years later, I am worried about 135...how great is that!
Never underestimate the power of prayer. God listens no
matter how unorganized my thoughts and words are....

Hollister is strong and had a good weekend..
Lots of standing and moving and stimulation....
He is even leaving his hearing aids in longer....

Harrison is home now....he is already dreaming of a snow
day tomorrow!

Keep Team Tough close to your hearts, thoughts, and prayers.

Happy Fat Tuesday.....

Friday, February 1, 2008 11:10 PM CST

6 WEEKS at home!!!!!
6 WEEKS at home!!!!!

You would think it is getting old being at home, but it
certainly is not! We haven't even got a routine worked out
just yet...

Hard to imagine it is already February. Not sure where
January went. The good thing about February is that it is
a short month, even in leep year...and winter will be over
before you know it.

BUSY BUSY BUSY.....

Hollister has been doing some amazing things..all on his
time, but still amazing. I continue to see lots of good things.
My job is to get everyone else to see what I see. Sometimes,
I know people think I am crazy....

Last Sunday Hillaree and I took him to Merle Hay Mall he
walked for us. He didn't need much assistance. We held his
arms and walked next to him. We were cheering him and
having a great time. I am sure people thought we might be
a little Crazy...We then took him into to target to look
around. Hillaree pushed him his wheelchair and they had a
great time looking at everything. He really likes to get
out of the house!!!

Monday, he looked good. Peggy came over to work with him
and stretch him. I was bragging to her how well he walked
on Sunday so we tired to get him to take a step or two..We were
talking and laughing with him..and I moved his left foot too
far forward, he was done..Stubborn as a mule..anyway he looked
right at me and said, "Crazy Shit!"....perfect. Peggy and I
loved it and made both of our days...
He is in there....

Tuesday, it was so cold and crappy we stayed home. He was
throwing up everything that went in....came out projectile!
Unexpected and a mess...

Wednesday we did indeed make it to Rochester. Roads really
were no problem. Thank God!!
Our First appointment was with the new Genticist. First of
all he just moved here from Savanah, GA and started last
week. Hollister is one of his first patients. He was very
happy to meet him. We were very happy to meet him and most
importantly, he is friends with Paula Deen(from the food
network)....I love her..and any friend of Paula Deen's has to
be OK....
He did a very thorough exam and has ordered lots of blood
and urine tests. He did an EKG of his heart and wants to
look at what has been going on. He seemed very smart and
interested.
He also validated a lot of my thoughts and concerns.
I keep telling everyone, that I think the MELAS is stable
and everything else that has and is happening is something
else. He totally agreed and said the exact same thing to me!
Validation in the "job" of taking care of your child is like
a huge pay raise...Felt good!
He wants to get to know Hollister well in the next 3 months
more tests and evaluations. Lots of fresh ideas...
Hopefully, he will follow through with what he thinks and
Hollister will continue to make progress....
I feel like he maybe the answer to a prayer and God brought
him into our lives. Made me feel good, when he saw the metal
Hollister wears on his chest and knew what it was and what
it meant, and then said, "that's a good one" A Doctor that
knows God, is more than a Doctor...
Time will tell...

Neurology was not exciting at all. He is not willing to try
and decrease any of his medications. Disappointing, as I
think he is over medicated=over sedated!!!

We were able to squeeze into see his Gastroenterologist.
We didn't have an appointment, but he is a great guy...
I wanted him to look at Hollister's button. He has some
granulation tissue that I hate...He didn't like it either.
It is a very common thing, but it shouldn't be there.
He gave us some cream that will shrink it away...I can't
wait....

Then, it was time to get his labwork...ended up in two
labs six sticks and finally and arterial draw...He was
MAD!!! I kept laughing to myself...
When Hollister was talking and ambulatory. He would go
back for his lab draws and it would take forever....
He would finally come out with so much gauze on his body
from so many pokes, that he looked like a mummy....
and then he would say..."and this is the Mayo Clinci, best
care in the world...." Dripping with sarcasim....I couldn't
help but smile!!!
We finally made it home about 10:30 Wednesday night...We
were tired!!
Thursday, he did make it to therapy, He was tired...
Didn't want to do much. He did take a minimum of steps...
Unfortunately, he isn't keeping anything down. The
vomitting is projectile and just happens. It is irritating for him and me!

Peggy came and stretched him today. He stood well for her
but didn't want to take any steps.

He still looks pretty good, hopefully we can get this
vomitting under control!!

Hillaree and Harrison are busy...Harrison had a dance tonight
and Hillaree was out for dinner and a manicure with a friend.

Dick is off playing broomball tonight in the Des Moines
winter festival...They play late tomorrow night also.
Outside in the cold...He is braver than I....

Team Tough continues fighting for Hollister.
I am humbled again by his courage and ability to take all
that is handed to him. His Faith is grand!!!

Here's to great weekend!!!!

He who receives Me receives Him who sent Me.
MATTHEW 10:40 (NKJV)

How do you simplify faith?...

Simplify your faith by seeking God for yourself.
No confusing ceremonies necessary. No mysterious rituals
required. No elaborate channels of command or levels
of access.

You have a Bible? You can study.
You have a heart? You can pray.
You have a mind. You can think.

Everyday Blessings
Max Lucado

Tuesday, January 29, 2008 1:53 PM CST

It is hard for me to know what to write.
For the last week, I have not been sure I would or should write
another note.

Having a caringbridge page is not something that anyone
would ever want to have. I wasn't sure all those entries
ago that I ever wanted Hollister to have a page. It is
hard to know exactly what to write and how much. But...
we have all been strengthened and encouraged by so many
wonderful notes in the guestbook...
some days I even laugh at your notes!
The page has been for the most part incredibly supportive!!!!

Most of the notes written on this page are from me, Jan,
Hollister's mother.....If for some reason you can't support
my feelings, then please stop reading....find another way
to get information. This page and it's contents are for
postive energies and good thoughts and strong prayers....

Harrison wrote this on the door to his room. When I ask
him where it came from...he said, "It's from me, I wrote it...."

From Harrison Farrell:

"If everyone is to busy being upset and angry,
then who is there left to be happy?"

We didn't venture out with Hollister today for therapy.
COLD...COLD...COLD....
Talked with Karen at lunchtime and we decided it wouldn't
be in Hollister's best interest to leave the house.
He wasn't to upset, he is sleeping on the couch by the fire.
Toasty warm!

Hollister has had a very busy week. Lots going on.

Tomorrow bright and early we are headed to Rochester.
Hollister has appointments all day at the Mayo Clinic.
Will wait to see what is said...Not very anxiouis to go.

Weather Permitting!

Tuesday, January 22, 2008 1:28 PM CST

A lot has gone on since Friday...

Hillaree went on her trip and will be getting on the bus
this afternoon and heading home. She will get in sometime
tomorrow afternoon. Yeah... I have missed her.

Harrison had a busy weekend and enjoyed his day off yesterday.
Dick took him and Brody at O'dark thirty to the Brenton
skating park for the "free" skating from 5am to 9am...They
had a good time.

Hollister, the word of the weekend...was STRUGGLE!
and he continues today. Lots of fever, vomitting and lethary.
He has so many secretions that are gagging him and making
him vomit. I stopped his food on Sunday and gave none on
Monday. Continuous gatorade/pedialyte... Sunday morning, he
had a seizure...I tried to get an IV, but couldn't. I could
get in the vein and then it was gone...He was probably a
little dry. Makes me sad to stick him and can't get it.

I thought he looked a little better this morning. I was
able to shower him and he did OK. Wasn't long after his
medications were in and he started in with the vomitting,
and coughing. He is resting on the couch now, breathing
a little faster than I would like...Hopefully, he will
rest.
Unfortunately, today was therapy day. I look forward to
those days...I really like to see him walking and working
hard with Karen. It was probably too cold to take him today.

I still see lots of good things going on with Hollister.
He is responding to me in lots of ways. He is even able
to listen and do a couple of things when I ask him. When
I am standing him from the chair or helping get him out of
bed, I will tell him what we are doing...and that I need
his help...He totally lifts himself and helps me. When I am
getting him dressed he will lift his arms to help me to
get them in his shirt...Lots of good things.

I need him feeling his best so we can continue with our
progress.

For the gift of time and progress I am thankful!!!!!

Hollister is fighting this dumb disease with so much faith
and courage. I see him in his eyes and the way he looks
at me, that he is there and fighting....

We are Team Tough!!!!

Friday, January 18, 2008 7:03 PM CST

4 WEEKS AT HOME!!!!!
4 WEEKS AT HOME!!!!!

YAHOO!!!!

Hasn't been the easiest four weeks, but we are at home!

It has been a very busy week here.
Too busy, meaning Mom and Hollister have had a quiet house
most of the week. Makes for some pretty long days.

Hillaree is off babysitting tonight. She is very typical
girl...she likes money and she likes spending it! She does
manage to save a few dollars.

Tomorrow at four pm, Hillaree will board a bus to
Washington D.C. for the right to life rally on Tuesday.
She went last year and had nothing but a great time. So
she is looking forward to the March again. My little
protester makes me so proud. I feel I have nothing to worry
about with her, when what she wants to protest is LIFE....
God is Good!

Harrison will be busy with Basketball and Hockey.
It is too darn cold to do much else. Good days to clean...
I mean watch movies and watch more movies! I don't like
to go out much when it is below 0!. Hooch only goes out
for a very brief time, before he is back on the couch.

Hollister had therapy yesterday with Karen. He gave her a
very hard time....for the whole hour. He was very obstinate.
When she wanted him to stand in the Pacer, he would only sit
on the saddle. It was a battle. He finally won and he got
to sit down for a short time. Next she had him standing by
the barrell. He wasn't doing to bad. He actually stood up
fairly straight! She asked him if he wanted to take a few
steps with just her and I...and he did. wasn't too bad. He
walked almost to the door. Not bad for a first attempt.
He is still very smart and knows what he wants...He wants
to walk without the barrell! His listening skills seem to
be getting better.

He then had to get the darn lab work. He had to be stuck
multiple times..including both feet. Dr. Uthe called this
afternoon... Not any better, his sodium is still low, his
albumin is low(which could be why his feet are so swollen),
His WBC is high, lactic acid high, hemoglobin low....
Not sure what he is fighting..but it is hanging on.
He did have a temp of 101-102 at bedtime last night. Hoping
that isn't a sign of a bug!

The morning was not his best effort. The bed had to be
changed several times...and then he threw up 2 more times,
so lots of laundry today...I was worn out by noon.

Peggy came over and stretched him this afternoon. He gumbled
at her when she stretched his upper body. Must be sore.
He did better when she strecthed his legs. He stood for us.
Not to bad. He worked hard.
He looked better this afternoon. No more vomitting.

4 weeks at home. That is a gift by itself. It has been a
long road getting to 4 weeks...28 days...

Thank God for our friends...they mean so much to us.
Friends are God's apology for relations. ~Hugh Kingsmill

Hillaree's note will leave a lasting impression on
family close and not so close. The best lesson is that
life is short...When Hollister got sick 6 years ago, I let
it be known...come spend time with him know him, enjoy him,
take him to movies, lunch, play games with him, talk
politics, sports, religion...He loved nothing more than a
good political arguement...And for those of us that did...
we miss him terribly!...and for those of you who didn't....
you have no idea what we had...and now I fear it is gone.
Life is the most precious gift God gives us...Family is also
a gift..and for those family members who have missed out on
the best Hollister had to offer...I am very sorry for you.
You have also missed out on what Hillaree and Harrison have
to offer!

If all who read this and have family and friends that you
cherish...tell them...life is short and you might be the
ones who have missed out on someone like Hollister.

The great advantage of living in a large family
is that early lesson of life's essential unfairness.
~Nancy Mitford

Team Tough is strong thanks to all our friends who
continue to hold us close to your hearts.....

Thursday, January 17, 2008 10:06 AM CST

Hillaree is giving me a break today... She certainly has
a talent for sharing her thoughts. She took a couple days
to write about her dreams....
I am amazed by the courage and insight by someone so young!

HILLAREE'S THOUGTS:
I know that dreams can be hard to reach, and there are
so many reasons in my life why I should forget about
my dreams. I have so many dreams that sometimes it’s hard
to keep track of them all. Sometimes things happen in
my life that makes it seem like my dreams won’t come
true, or they are so far a way. Sometimes when those
bad things happen I find new Dreams.

Over the last 6 years Hollister has been very sick. He
has spent a lot of time in and out of hospital all over
the place. I was again hit hard in September. I
didn’t know what the outcome of the heart surgery would
be, I didn’t want to know anything, and all I wanted
was for Hollister to be okay. For my life to go on!

I try really hard to be a good sister when sometimes all
I can do is think about myself, because I am 16. I try
really hard to be there for my whole family. I love to
take Hollister and Harrison out. I love to take them
places. I am always asking mom, “Can I take Hollister out
today.” Every time I have to talk her into letting me take
him out. I love my time that I spend with Hollister and
Harrison. I love to show them things. It is certainly
more fun, now that I can drive. Sometimes, it is just a
movie. My time with my family is short; I leave for
college in 5 semesters.

I have to be happy with the moments I spend with them,
because at this moment this is my life.

“Whatever tomorrow brings I’ll be there with open arms,
and open eyes, I’ll be there.” It's really hard for me to
have dreams, it's hard for me to have dreams because there
are no friends to share them with. When Hollister got sick
my life changed. When I needed my friends the most they
abandoned me. In middle school I had no one, in high school
I have NO one. I am alone!

I am grateful for my one best friend in the world, my MOM.
My mom is there for me and takes care of me, and lets
me in on the secrets of the world. The best part about
having my mom as a best friend is we get to have sleepover’s
every night. I also have 3 guys in my life. My dad who I
don’t thank enough, who also gave road rage lots of
road rage. haha My dad and I go back and forth everyday
about stupid things like my room. I don’t know when he
will understand that I am 16 years old its going to be a mess.

Hollister who is always on my mind not only every second of
the day but I have a hard time doing things from homework
to swimming. I can’t help but think of him and what he goes
through everyday. His determination inspires me. My little
brother is one of my biggest inspirations. Harrison teaches
me that faith can and will go along way if you just believe.

My kudos go to my Aunt Jerri. Jerri does so much for
our family. She is there at a lot of games that sometimes
my parents can’t come to. She is the only family support
out of 15 aunts and uncles, and 18 cousins she is it!
Now that’s sad. Jerri is a constant support. Jerri stands
alone. I come from a big extended family, but yet we are
alone, 6 of us.

I am also very grateful for my grandparents, My Grandma Jo
does all that she can to help, and she also has been
fighting her own battle. My Grandma and Grandpa come
whenever they can find time. They also do so much for
our family. My name sake Edna Mae and Papa Ron also do
many things for me, they live so far away but they never
forget me or anyone in my family. They are always sending
me things that brighten up my day. I know that Grandma Jo,
Grandpa Jerry, Grandma Edna Mae and Papa Ron are just a
phone call a way. I would think coming from family’s so
big there would be so much love that I wouldn’t know what
to do with it or I would never be lonely. You would think
that with Hollister being so sick, there would be people
calling non-stop checking up on me. Yet I look at my phone
and it is quiet.

It is very strange having a brother with a terminal
illness for 6 years. It is a difficult journey for all of
us. I hate MELAS, and all that it stands for. For me, it
stands For a loss…My brother should be in his third year
of College, at the University of Texas. We never got to
have that “cool” brother sister relationship. Hollister,
Harrison, and I have all lost so much of our childhood
dreams.

It’s hard to explain how I feel about my future, but one
thing is for sure. I love my dreams and I keep trying
everyday. I don’t know were I’m going… but that’s the
beauty of it. I know I am loved and I am strong!
I know my family will keep fighting with Hollister
and Team Tough is strong. I know that I will be OK…..

Everything will be okay in the end….
If it’s not okay it’s not the end.

Wednesday, January 16, 2008 8:11 AM CST

I found this quote in Hillaree's room...
I don't where she got it or who wrote it but I like it!

Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful momments trust God.
Every moment, thank God.

I fear Hillaree maybe too wise. She like Hollister has
great Faith.

Hollister looks GOOD.

He is up and sitting in his chair. Early start to our day.

His feet are still very swollen, trying the TED hose today.
Put them on before he got up, hopefully this will help.
Trying hard to get him hydrated. Anxious to see what his
labs tell us tomorrow.

Therapy yesterday was GREAT!!!!!
Karen stretched and strected him. She has lots of good things
to say about him. I listen closely for any positive word and
there as been a bunch!
The big news is that when he was standing in the Pacer, Karen
said it was time to walk....and he took off. For those who
know the Blank lay out...he made if from the gym at therapy
all the way up the hill to the atrium without stopping. I
was thrilled...and so was Karen. It was nice that Dick was
there also, to see his triumph!
He was done after that and sleep on the couch until bedtime.
Walking that far, used a lot of his energies....and he
slept most of the night...We got up around 4am....

Will be nap time soon...Hopefully, Hollister thinks so too.
haha

When I look back to where Hollister was last year, he is
still making progress. All of the set backs he had this fall,
he is still ahead of where we were last year!!!
Encourages me, that he is still trying to recover!

Harrison and the kids at ST. Theresa's are doing a good
thing at school today. They are participating in Kids Against Hunger.
The kids are packing 40,000 meals to help feed the hungry in Africa.
The kids raised over $8000 to pay for the food.
Thats a good thing!

Today is the day...

Monday, January 14, 2008 11:29 AM CST

Must be the middle of January, it is COLD!!!
and I hate COLD...

Good News first....
Mom had her appointments with the Doctors today......
One word...
REMISSION!!!
What a BEAUTIFUL word!

Hard to believe another weekend is over. Dick and I were
able to take Hollister to Mass on Saturday night...That
was a big outing for us.. He was tired and slept most of the
time. There was a Social after Mass that we stayed for.
It was fun for me to see so many people that I haven't seen
in a long time. Hollister slept in the wheelchair most of
the evening...but folks still got to see him. Hollister even
won a prize...a beautiful Tulip plant that smells and looks
of spring!
He slept so much during the day and evening that he was up
all night...then yesterday he wanted to sleep most of the
day...so he is sleeping now...CRAZY!!!

Good thing he slept most of Sunday....
He missed his Cowboys...sleeping through the important game also....
Tony Rom"a" should stick to ribs...hahaha
Good thing Hollister isn't talking wouldn't be pretty!

I did get to Harrison's Basketball game yesterday. Hillaree
was able to stay with Hollister. Was good to see a game. I
haven't been able to get to anything for a long time.....
It seems those boys have grown up overnight.

Hollister has been having increased vomitting the last
couple of days...not sure what that is all about, but it
is very annoying to him and me!
The swelling in his feet appears to be getting worse. His
feet and big...having a hard time keeping his sandals on.
They look like they would hurt. Sure doesn't want to stand
on them!

I am so ready for Hollister to make some big progress. I
have even been dreaming about it. I see him walking, eating,
and talking...I hate to wake up...and find him still having
to work so hard just to be.

Today is the day.......

Team Tough needs you prayers of continued healing of his
brain and body and to restore his losses....

Friday, January 11, 2008 11:37 AM CST

Three Weeks at HOME....
Three Weeks at HOME....

That warrents saying twice at least!

It has been since September that Hollister and I have been
at home for 3 weeks, and to be home three weeks continuosly!
YAHOO.....

Therapy went very well for Hollister. He worked very hard
for Karen. He resisted a lot of the stretching...and gave
Karen a work out also...She knows Hollister so well and
never backs down when he is difficult. She works harder to
get the stretch! It is GOOD. She had him standing in the
pacer, and he did quite well. She even got him to take a few
steps...It was an awesome sight. Not pretty steps, but steps!

The blood draw didn't go as planned. He had to be stuck a
couple of times...and then they stuck his foot. His very
swollen foot. He was not happy about that. Blood was gotten,
just enough to do what needed to be done..Not one drop extra!

The doctor called last night on his lab results. He is still
fighting something. His labs are still messed up. Even his
dilantin level is very low...She thought he might be a
little dry also..Ahhhhhh..hoping it all settles down soon!
I continue to run the gatorade/pedialyte mixture at night.
Hopefully, this make a difference...soon!
But, we are at HOME!!!!!

The most irritating, time consuming part of having a sick
child...is having to fight for everything. It is an unknown
to people who haven't lived with an ill child....to have an
ill child with a very RARE disease makes it worse.....No has
heard of it...so the answer is always NO...
We are continually on the phone with the insurance company
trying to get his needs met. We are constantly fight for
his medications, his therapy, his doctor appointments, and
now his food. The order changed when we were in the hospital...
fiber was added to his current food. No brand change.
When we arrived home 3 weeks ago...it was suppose to be at
the house....Well, it isn't here yet! This week, our food
supplier...decided they would change the brand to something
cheaper...but similar...AHHHHHHH
It takes hours and hours to get through to these folks that
that won't work...
Hollister's food needs were caculated by a Metabolic
Geneticist at the Mayo Clinic...
All of this is time away from Hollister and his needs.
If everyone at every insurance company, hospital, home health
supplier, and pharmacy...kept in mind that it is all about
Hollister...Things would be much easier...
I personally think they make things so difficult so you will
stop asking and pay for things your self....

In the case of food...tube feeding without fiber, leads to
a lot of unecessary diarrhea....Not good for Hollister...

The minute Hollister got sick, our lives changed. Not only
for all of the obviouis reasons, but there is so much that
is unknown unless you sit in our seats....

On a happier note...we have been home for Three Weeks...
And God is Good...Hollister looks good most of the time...
and he has been very interactive and smiling a lot...
almost chuckling about something...
THAT IS PRICELESS!!!!

Busy weekend..Harrison has a dance tonight..It is at Holy
Trinity...close enough to walk...bringing a group of boys
home after the dance for pizza and movies...House will be
very much a live tonight! And he has the usual weekend
sporting...Hockey, basketball, and baseball....Not to mention
he is working at church for service hours....

Hillaree is choosing to be out with her friends tonight...
and babysitting all day on Saturday...She is getting ready
for her Washington trip...(right to life)...So she is liking
the babysitting money....

Team Tough continues to be humbled by all that is good!

GO COWBOYS!!!!!

Every evening I turn my worries over to God.
He's going to be up all night anyway. ~Mary C. Crowley

Thursday, January 10, 2008 3:03 AM CST

Not sure where time is going...

Hillaree and Harrison are both on the mend...Hopefully!
Harrison went to the Clinic on Saturday and his Crud....
had turned into strep...So, he too is on antibiotics...

Hollister is looking better also...The Doctor called on
Sunday and his blood cultures are negative....God is good!

Everyone is tired, getting back into the routine after 2
weeks out of school...and Hollister and I are trying to get
back into the routine of being home...
His sleeping habits...need some improvements...

Hollister made it to Blank for therapy with his Karen. It
was good to be back. Nice to see so many friends....
Hollister has been a regular there for over 6 years..
It is not an easy task getting him there with winter...
Ice and snow are tricky in the driveway....but we made it
and will be going again today.

Our friend and personal PT, Peggy, has been coming over to
stretch and work with Hollister. I can't believe how
incredibly generous this is with her time and skills. She
came almost everyday when he was in the hospital to keep
him moving. What a difference it has made. He is on his way.
We stand him in the walker and each time he gets a little
stronger! We are blessed by her gifts!

Today, I will take Hollister to the lab to get his routine
blood work done. It was being done twice a week at home,
when we had the luxury of a port or picc line...He will have
to be stuck for each and every drop of blood...which is very
difficult. Takes a lot of time and patience...Hollister is
a difficult stick...six years is along time to be sick.....

After Hollister has been in the hospital a long time it
is hard on everyone...It certainly doesn't get any easier
the longer you do it. Their isn't one of us who wouldn't
like to walk out that door and walk back in...and find our
family intact...no continued saddness, empty chair at the
table, and a fear of what lies ahead.
Some days it is just too hard.....

Busy day today...time to rest...(hopefully I can convince
Hollister)...5am feeding will be here shortly!
Suppose to snow today...AHHH

Team Tough continues to need your strength...

Friday, January 4, 2008 5:13 PM CST

TWO WEEKS AT HOME!!!!

It is a quiet celebration....
The 3H's are all sick with something...
Hillaree has crude...ear infection..and came home from
school with nausea...she is in bed sleeping...
Harrison hasn't made it back to school. He has a head full
of JUNK...he is pitiful...He hasn't been out of bed in days.
No antibiotics to treat the Crud...rest...he is sleeping now....
Hollister is still fighting something...Admit no admit...
seems to be the question of the week. He had a seizure on
Wednesday...and he is struggling. Took him yesterday for
lab work and therapy...Too sick, didn't make it to therapy.
The lab work is a challenge...and it proved he is fighting
something...His white count, platelets and neutrophils are
elevated. His labs showed he is very dehydrated...making an
IV stick impossible. so, I have been trying to hydrate him
with pedialyte/gatorade mixed 1:1...Took him in today for
more lab work, Blood Cultures and to see the Doctor. Will
take 24 hours for any news on the Blood cultures. The fear
is YEAST...it is a nasty little fungus...
He has been off the antifungal medication since Wednesday.
He is running NO fever at this time...which is a good thing,
a very good thing. He is tolerating his feeds and the
hydration fluids...
He is weak, tired and has NO energy... He is sleeping on
the couch now and most of the time...
Still has a cough and a head full of JUNK...
We are hopefull we can keep him at home...and work this
out here. Better for us all to be at home...That way I can
keep my eye on Hillaree and Harrison...
Even, Hooch is sleeping on the couch...

Dick is doing laundry...as they say no rest for the weary!

Nice to think we have been home for 2 weeks..Lot has
happened in two weeks...Christmas and New years are OVER..
time take out the tree...

Here's hoping the 3H's all start to feel better, and the
bugs be gone...and praying extra hard for those Blood
cultures to be negative.......
Team Tough needs your thoughts and prayers....

Next to a circus there ain't nothing that packs up and tears out faster than the Christmas spirit.
~Kin Hubbard

Tuesday, January 1, 2008 10:49 PM CST

Happy New Years...2008!!!!

The first day of the New Year is almost over. The house
is quiet...Everyone is in bed, even the dog is sleeping on
the couch. I guess there was too much partying last night...haha!

We spent a quiet day at home. Nice. Hollister layed in bed
most of the afternoon, watching Hockey on TV and napping.
He is still very tired. He even looks rough at times. He is
still fighting a cold. Other times he looks good, even better.
It truly is minute by minute....
We are moving him and stretching him...he needs exercise...
One more day of the antifungal medication for the YEAST!
Will be glad to be finished. He has been on it since
Thanksgiving day...Hopefully, the yeast will be gone for good.

Hillaree and Harrison have one more day off...Back to school
on Thursday. I am sad to see them go. I like having them
home with me. Christmas break went very fast but I am glad
we were all home together. We didn't do anything very
exciting....and the kids would say it was BORING...but I
like them home...fighting..haha

I am optimistic that 2008 will be a better year for us.
All good things will happen...Hollister will make a big
turn around in his health..his disease will stop progressing
and he will make tremendous strides in therapy...Walking,
talking, and eating....If I am dreaming, I will dream big...

Thank you to all who have continued to read and write notes,
your thoughts are fuel for Team Tough...When we read your
notes of encouragement or a shared story of Hollister...We
are stronger in our Journey...We are Team Tough....

Hollister continues on his journey...he is dragging me with
him....He is strong and faithful...and I am humbled!
Please think of and pray for him...

Here's to 2008...the year Hollister will turn 21!!!!!!

We spend January 1 walking through our lives, room by room,
drawing up a list of work to be done, cracks to be patched.
Maybe this year, to balance the list, we ought to walk through
the rooms of our lives... not looking for flaws, but for potential.
~Ellen Goodman

Click here to go back to the main page.

Click here to view older journal entries.