Guestbook
You may use this Guestbook to show your support for the family
and send them greetings by adding an entry below.
Julieanne Ash
Sat, 06/05/2010 - 8:56pm
Malisa
Sat, 06/05/2010 - 8:21pm
Hi....I have been following your story off and on for a month or two and just
wanted to say hello. I am an adult with mito and have had symptoms of mito
since age 14 (18 yrs ago). Started out with GI dysmotility and I have been on
TPN since age 16 (16 years now). I also have dysautonomia and severe muscle
fatigue as part of my mitochondrial presentation. After procedures, acute
illness or any physically stressful event, my body shuts down very similarly
to what Cooper's did after the anesthesia last week. I literally feel
paralyzed and can't move my legs or my trunk. I had a GI virus in January
2009 and the physical stress of the virus caused the above symptoms to
reoccur, but this time, my body never recovered. I have been bedridden for
1.5 yrs now. I can move my muscles in bed okay but if I try to sit up in bed
or try to stand, I shake from head to toe and within seconds, I lose muscle
strength throughout my body---my head flops over, my legs collapse under me
and I need people to lift me into bed. Just the effort of attempting to sit
on the side of the bed or stand, leaves me unable to move any of my muscles
or lift my head for days afterwards. It was happening so frequently just from
trying to do such small activities that it was wiping me out for so long that
I was unable to talk, move or interact and eventually it became clear that
for the best quality of life, I would need to try to minimize how much time I
sat up or moved about in bed. I can only tolerate bed baths maybe once a
week, washing my hair maybe once every few weeks, etc. I have not been out of
this room or my bed in over a year. All of the symptoms I get with my muscles
and the shaking are due to the mitochondrial disease so we just don't know if
I will ever regain these abilities. I am only 32 yrs old so the pain of
living the rest of my life from a bed is heartbreaking at times. That said, I
can't say life is easy but we try to make the best of it. We have a 12 month
old daughter, Julianna Hope, via surrogacy (I went through IVF, created five
embryos, one of which became our daughter) and we try to find as many family
activities to do here at home as possible. In some ways, life is still very
good. We have a lot of love and happiness and that is what matters! I hope
Cooper never experiences the muscle paralysis again, but if he does and you'd
like to talk, feel free to email me..... malisam@comcast.net I also have a
website that I would be happy to pass along that shares more of my story.
Hugs to you guys. Malisa
Susan Imle Bollfrass
Sat, 06/05/2010 - 9:36am
We are literally counting down minutes at this point....I am putting things
in my suitcase and I am so excited about finally getting the kids strapped
into their seats and hearing the plane zoom down the runway as we head for
Pittsburgh, COOPER and YOU!!! So many people have called and written to
wish us a great trip and everyone has told me to hug and kiss Cooper and
you...I have a big job ahead of me!!!! I am a bit nervous about getting
from our plane from here to Atlanta into the plane that will take us from
Atlanta to Pittsburgh. We have to get from terminal C to terminal D, which
means we get the "stroller" and jog to the train and then jog to the second
gate. When we get off the plane in Pittsburgh, and I have the kids, the
stroller, our carry ons and our luggage in hand...I will be elated! I hated
to read about Cooper's problems due to the feeding trials, but I continue to
believe that this is a temporary glitch and will resolve itself in the weeks
ahead. I hope seeing his seeing Caroline, Adam and Oliver will
brightenCooper's day and the week and that your having all four of your
little ones with you at the same time will bring an enormous lift to your
spirits. Buddy and I spent several hours with Jennifer, Mark and the kids
last night and we really had a great time. Owen is working on his train set
and is so excited that school is out for the summer. He is also very
concerned that his two newest Cub Scout patches have not yet been sewn
on...LOL! Maggie has decided that she is going to be a famous girl rock
star and she writes her own songs...she put on a lovely show. Owen is going
to design her Limo and he will also be her driver. Maggie will also have a
side business...she is going to be a designer of "good" clothing and will
wear those designs when she performs. Leo and I discussed Lightning
Bugs...particularly, Leo the Lightning Bug and we talked and worried about
the flying ants that were swarming at their back door. There was a special
ceremony at the Naedlers yesterday morning...Leo married his Mom and he gave
her a beautiful green ring...Maggie officiated. Enough for now....I will
see you in a few hours.....:<) All my love.....Momma/Mei
SARAH
Fri, 06/04/2010 - 3:27pm
Sarah Hey its Lizzy!! I've been meaning to write and let you know I am
keeping everyone of the 12th floor updated on Cooper!!! Prayers are being
sent your way!!
Comment by Sarah
Hi Lizzy! We sure do miss you guys! Thanks for the prayers and for keepin' the Cooper news going on 12!
Hi Lizzy! We sure do miss you guys! Thanks for the prayers and for keepin' the Cooper news going on 12!
tdasbill
Thu, 06/03/2010 - 5:02pm
Sarah, I have been checking on Cooper daily prior to and after his
transplant. This young man is a fighter. He gets this from his mom.
Daily prayers and thoughts are sent your way. People do not realize how
important these laps are. For a transplant patient that is like preparing
for a marathon. I think Cooper and prayer will get him the full 26 miles.
Thank you for your daily blog. God Speed
Beth Baker
Tue, 06/01/2010 - 10:11pm
What a wonderful blog today! I am so happy for you and especially sweet
Cooper! Praying for many more blessings to come your way soon!
Lynn & Mike Friedrichs
Tue, 06/01/2010 - 8:35pm
All I can say is that GOD IS GOOD!! This is awesome news!! Cooper certainly
is a Trooper!! God Bless You.
DJs MoM
Tue, 06/01/2010 - 7:52pm
Yes!! So glad Cooper is getting his giggles back! Hang in there Sarah you are
an amazing mom and such an inspiration to others. I stumbled upon Coopers
blog the night before you transferred hospitals to go on this journey with
Cooper. I have been reading daily for updates. Thank you for sharing Cooper
with us! Mother from the NW
Lynn H
Sun, 05/30/2010 - 12:31pm
Sarah - so glad Cooper is going to have his Mei and brothers and sister with
him soon. Sure Auntie Liz was a breath of fresh air for you both. Have faith,
Cooper will be at RMH soon. You are an amazing Mom and Cooper such a fighter.
Pray you all will be blessed with a Cooper finally able to go home. Will
continue to keep up with your daily blogs. Much Love ------- Lynn
DJs MOM
Sun, 05/30/2010 - 2:05am
Im so happy to see that sweet boy sitting and playing!! Sarah give Cooper a
big (((hug))) let him know that we think he is such a big boy!