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1. Hackensack University Medical Center, New Jersey.....Below are the entries
made by patients and families during their stays at where Brainstorm #3 made his first stop!
Oct 31, 2002 Hackensack University Medical Center,
New Jersey
Dear Journal,
I came back to Hackensack (HUMC) today to see my doctors and have my (75) staples removed.
I came back to the EMU to see everyone and say "hi". I have been home for a week now! I had a perital lobe resection
on Oct 16 and went home last week!!
I came to HUMC on Aug 15 for grid surgery. Dr. Fried put 92 grids on the
left side of my brain to locate the focus of my seizures. It took 9 weeks of monitoring in the EMU, but Dr. Lancman
found the focus in my parietal lobe.
I am doing well! I have had NO SEIZURES!! I am feeling good!
It feels so great to be home. I am so thankful for what everyone has done to help me.
Love,
Stefanie Morrison
November
2, 2002 Hackensack Universtity Medical Center
Hackensack, New Jersey
Dear Journal,
Today
is day 34 since grid placement on September 30th. We sit and wait for the "big" seizure and hope it's soon. The
longer the grids are in the higher the risk of infection. But we need to be sure of the focus.
November 3rd marks
the one year anniversary of Mary's first seizure. She's 2 1/2 years old. It's hard being here. Especially
being away from my husband and my other 3 children. They also miss us. It's hard for them to understand why Mommy
and Mary have to be away so much and for so long.
Mary is doing great! She always has a smile on her face
inspite of everything she's been through. She also has a forgiving nature. She's made this journey easier to handle.
I've learned so much from her.
Epilepsy is a disability, but only if you stop looking at the possibilities.
Cathy
Rapsas, Mary's Mother
November 2, 2002 Hackensack University
Medical Center
Hackensack, NJ
Dear Journal,
I sit here this morning staring down at the
beautiful face of my daughter, Sara. She'll be 3 months old tomorrow. She had her first seizure on 9/24/02.
Since then we have been here to our home away from home twice. Both times resulted in a 2 week stay. We started
drug number 4 this past Monday, ACTH or as I've dubbed it, liquid gold. We are seeing a definite improvement in her
cluster seizures. They no longer come in clusters but they are still coming. Not as many though each day we do
seem to get better, its just very hard as a mother to sit and watch and wait. I just want to make things all better
for her and unfortunately this is out of my hands. I have a strong faith in God and most days it is by faith alone that
I get through. Some days though I just get angry and question why? Its hard to see my child go through this and
its hard to watch the children around us. The only thing I know for sure is that Sara is a precious gift to me and that
in her short little life she has and continues to teach me so much about life and unconditional love. As much as I miss
my husband and my daughter Amy its moments like this with Sara peacefully sleeping on my chest that I know without a doubt
that there is no place I would rather be then here with her. She makes my life complete.
Barbara Hoffman
a.k.a
Sara's mom
Novrenbre 4, 2002
Mi nina tiene fand esto enpeso cuando ella tenia sanos fue cuando enpeso
esta pesadilla desde eso la bida le a canbrado peyo yo tengo mocha fe' algun dia espero que dio me haga el mila gio de verla
como una nina normar mi familia yyo tenemo mucha es peransa dio es el que puede nacer el milacro solo le puedo desir dio es
el que puede hacer el milagro
merx j. maura
y
mevys maura
Hackensack University Medical Center,
Dr. Fred, Dr. Lancman
Hackensack, NJ
Nov 11, 2002
Dear Journal,
I have a really good feeling here. Tomorrow
is our 21st day after grid placement on Christopher. Tomorrow they start mapping. Chris will be 13 years old on
Nov 22, 2002, 11 days. Maybe he'll have some peace. This is his 10th year on his journey. He was diagnosed
with leukemia April 9, 1993, Good Friday, three years old. Among the pain , along the way, there has been joy and growth.
Althought I would trade the seizures and the pain and confusion he suffers, I still reflect on the truly wonderful remarkable
people we have met along the way. I am thankful to have met them. I also know deep in my heart that there is a
purpose on Chris' journey. We miss his brother and sister. They are old for their ages -- 9 & 11. They
are special children, caring, giving and complient. John and Tricia both said that "they'd be fine, take as long as
we need to try and help Chris."
I worry about my perspective in life. Is it normal to teach your children
how to administer oxygen to their brother or diastat rectaly? Is it ok to accept 120 grids inside the skull? These
things don't affect me any more.
This hospital stay has given hope back to us. We have been iniendated with cards,
gifts, help, family, friends, and an unbelievable competent caring staff. Is my perspective in the "normal world" gone?
I suppose it is, and it's okay. This particular experience has shown us love and caring and I don't think I mind and
I wouldn't give it up.
Christopher was born in a Catholic Hospital. During our stay a sister, Sister Laura, used
to come and pray over him. She gave me a warning. She warned me that he was very special and to watch him and
his "road". This child is special". She repeated her warning several times.
It hasn't been easy.
I've have my arguments with GOD, but I trust and know HE has a plan. Keeping the faith and handing it over when we all
want to crumble has kept us going. I remember the words of a minister that ended his service with a prayer -- "Dear
Lord, help us to keep on keeping on", Reverend Marc Richards. Christopher has always been able to do that, and still
be a kid. He'll be 13, a young man, seizures, pain and all he'll keep on with a smile cause he's Christopher.
Lori
Cacall,
Chris' mom
2. The Comperatore Family, Wilmington, Delaware
November 22, 2002 Wilmington, Delaware
Brainstorm
came today! I squealed with delight when he arrived! I was delighted to see him. Just seeing him brough
me insumountable joy. He is bringing me so much happiness it is inexplicable. I can't recall being this happy.
Ever. I am so thankful he is here. He will be here for Thanksgiving, the rest of Epilepsy month, and a few days
in December, so he'll celebrate my anniversary of my diagnosis! Which I think is so cool!!! Because this year
marks my 25th anniversary of my diagnosis. My silver. Gosh where does the time go?!!
Brainstorm is now
with me at the Motor Vechile place. We're going to surrender my license due to its suspension because of my seizures
being reported on 11/9/02 when I had simple partial status epilepticus. I'm very scared. It's an emotional thing
for me, losing my license to this. We're going in now, but I know I'll be ok with Brainstorm by my side.
We just
got out of DMV. I cried in there. But with Brainstorm it didn't hurt as bad. I do have a splitting headache
now with severe pain in both my temporal lobes. I'm not sure if this is an aura. I'm very dizzy right now.
I think this is just a bad headache. I hope I don't seize. I'm 12 days seizure free. I don't think I will.
I'm just hurting a lot right now.
Well I didn't seize and the headache has passed. I'm happy about that.
Everytime
I go to write in Brainstorm's journal, I'm reminded of the poem I helped create for Brainstorm. Knowing that epileptics
of all ages will read that when Brainstorm travels to them is astounding me. It comforts me to know that I've helped
others in Brainstorm's travels.
Brainstorm and I had dinner. Now we're working on the photoalbum and on the internet
as well. He is just too awesome!
I gave Brainstorm a medal of mine for him to keep on his journeys. I'm
a criminal justice major and I belong to the American Criminal Justice Association -- Lambda Alpha Epsilon. That's where
the medal is from that I gave him. I'm going to print out a few poems for Brainstorm to take with him. God Bless
Brainstorm!
Amy Teresa Comperatore
Age 26
Wilmington, Delaware
November 23, 2002
Wilmington, DE
Dear Journal,
Brainstorm and I went
shopping today. We went to Value City and then went for dinner at Pizza Hut. We had so much fun!
we also
worked a little more on his photo album and watched some tv. We also worked on the computer and emailed all my friends
about him. We printed out his fliers, PSA and shipping info since it arrived via email today and I didn't get it in
the mail. We visited Brainstorm's site and posted his journal entries there. I showed him my poetry website which
is dedicated to epilepsy poetry. It's www.geocities.com/poetrylife2002. I told him all about it and how it is under construction right now. He
said he'd check it out when we get more of it up and running.
I'm exhausted. We're going to bed soon.
Amy
Comperatore, BS
(author of Brainstorm's poem)
Wilmington, DE
Age: 26 and 1/2
Dx: (current) TLE w/simple
partial seizures
(originally) primary generalized epilepsy
December 1, 2002 Wilmington, DE
Dear
Journal,
Today marks my 25th year with Epilepsy. My Silver anniversary of my diagnosis. 25 years of enduring
not knowing when you'll seize or knowing when you'll seize because I've had both types of seizures -- with and without aura.
I've seen a lot happen with this disorder in that length of time. It truly amazes me. Puts me in awe of it sometimes.
Reminds me of my survival. How often I cheated the grim reaper in threat of death due to status epilepticus or worse.
Went
to see Harry Potter and the Chamber of Secrets tonight. We had a blast! The movie was AWESOME! I love Harry
Potter movies! Can't wait to see the 3rd movie when it comes out!
What an awesome day! I am truly
reminded of how blessed I am. 25 years of surviving this disorder. Makes me see that, indeed, there is a reason
for everything -- even having Epilepsy.
Amy Teresa Comperatore, B.S.
Age 26 1/2
The Berkowitz Family ~ ~
December 10th: What a surprise a plain brown box showed up on the front porch. hmmmm! when
Michael got home from school we found out it was Brainstorm! He is soooo cool and we love the fact he has a cool bracelet
just like Michael. Dinner with an extra place set and Brainstorm next to Michael. Then showers, meds and pj's. B'storm
takes his meds well just like Michael. Tonight two stories one for each and lights out. Night guys!
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