What’s New with Cooper…
Continue to scroll down to follow Cooper’s progress since his
accident!
September 2005 ~
We were finally able to get Cooper registered for school in
our new district. It only took us a year! We’ve had many problems with house
repairs so it went on the back burner. Cooper’s new teacher, Karen, is set to
start with him by the end of this month. She will be coming over an hour each
day to work with Cooper. He seems to do best one on one and without
distraction. Karen seems very enthusiastic so we are excited about her working
with Coop!
Cooper also started another session at the Eureca Institute this
month. This is his 3rd time attending their 1 month session of
intense Physical Therapy (scroll down
further to read about Coop’s previous visits to Eureca). The therapists he
has worked with in the past think Cooper has some improvements since they last
saw him in January. They say his arms and legs are looser, he is much more
tolerant and his expressions/ responsiveness is more appropriate – as opposed
to crying all the time.
He is spending time in the stander there, which he had
sprained his ankle on our first visit. This time he has more experienced
therapists working with him on it and he is tolerating it well! We are also
excited because one of the children from our first visit is there this month as
well. It’s been great to catch up with Heather and Joe!
May 2005 ~
Cooper has begun doing some knee walking when supported.
This is an exercise Eureca has him do on a treadmill while in Sunbeam Therapy.
One day, Bridget tried holding him in that position and Cooper moved his legs
on his own! He’s also doing much better holding himself up on his arms and
raising his head.
Cooper had been biting his lip very badly the past year.
Every morning when he woke up he would have blood on his mouth. We discovered
that one of the fathers of Cody’s baseball teammates is a dentist. He also is
the uncle to a brain injured girl. While at a game we asked him to look at
Cooper’s lip. Dr. Tom Green agreed to see what he could do for Cooper. We took
him in and Cooper’s teeth were shaved down a little so they wouldn’t catch his
lip when he bit. Cooper no longer wakes up with a bloody lip. Thank you Dr.
Green!
April 2005 ~
Cooper won a contest! Children’s Neurobiological Solutions
(CNS) was holding a drawing for a free Gait Trainer. For each person who signed
up to receive their newsletter in Cooper’s name, he got an entry into to
contest. Well – HE WON! Bridget’s friend, Linda Stoddart signed up and asked her
friend, Linda to sign up – then Linda signed up and asked her friend Barbara to
sign up and Barbara ended up winning the prize for Cooper!
The Gait Trainer is great because it is so versatile. It can
be used as a lift, it can hold Cooper in a crawling position or in a standing
position. I can also be used with a treadmill so that Cooper can practice
active motion. This will be perfect for practicing the knee walking he’s been
learning at Eureca! This type of equipment can be very expensive and rarely covered
by insurance. Thank you to everyone who everyone who entered on Cooper’s
behalf!
In addition, CNS did an interview with Bridget that appeared
in their newsletter.
To read the interview about Cooper click here…
Winter 2005 ~
Cooper attended physical and occupational therapy through
the state run agency called CCS. His PT, Kathy, worked on many exercises with
Cooper and taught Bridget how to do them at home as well. His OT, Maurine,
worked on feeding techniques. Her exercises were aimed at getting more lip
closure when taking food off of a spoon and reducing tongue thrusting when
chewing and swallowing. In addition, Maurine worked on teaching Cooper to suck
from a straw. She found a great cup that Cooper quickly responded to. After
some follow up with the techniques at home Cooper has begun to suck from a
straw! It’s still in the process of being refined, but he’s doing great!
Cooper listening to Elmo sing ~ Xmas 2004
They also helped us order some equipment including a shower
chair and new wheelchair.
December 2004 ~
A great thing about living in Orange County
is being able to attend the Eureca Institute program without having to drive
back and forth to the desert! Cooper attended another month there and got the
therapy he really needed! It’s been hard to keep up with the Brain Net program
since Sarah was born so Cooper has been getting a lot tighter.
By the end of the month Cooper begins consistently holding
up his head. Once again, we make great friends with the other parents and are
encouraged as we watch each other’s children progress!
Cooper in
Sunbeam Therapy
Cooper in Suit Therapy
September 2004 ~
We moved back to Orange
County this month. It’s
been a hard transition and it’s far from over. Luckily, we found a house that
was big enough and had a bedroom and full bathroom downstairs for Cooper. We
find the perfect spot to hang the picture that his former teacher, Perry, drew
for him. Hopefully, we can find another great teacher to work with Coop!
August 2004 ~
For many years Bridget has heard about Dr. Steenblock. His
facility, Brain Therapeutics, www.strokedoctor.com is located in
nearby Mission Viejo, CA and they provide discount on HBO for
children. Knowing that we’d be moving to the area we decided to set up a
consultation. We learned at that meeting that Dr. Steenblock provides many
other forms of alternative therapy including: homeopathic remedies, chelation
therapy, and umbilical cord stem cell treatments. For the stem cell he works
with a doctor in Mexico
since the procedure is not yet allowed for Cooper’s condition in the U.S.
We became very excited about the possibility of treating Cooper with stem
cells. Since we already have Sarah’s cells the cost would be considerably less
than if we hadn’t. Still we were apprehensive. We decided to wait and research
that area a little more. Treating with stem cells for brain injury is still in
the experimental stage and we don’t want to take any chances with our precious
boy!
We plan on starting another round of HBO at Brain
Therapeutics as soon as we can get the funding to do so. Meanwhile, Dr.
Steenblock provides an individualized vitamin regimen for Cooper. The 10
prescriptions cost $150/ month. After some research in to the remedies
prescribed we decide to try it and see how it goes.
July 2004 ~
We received some
very sad news this month. Colten Smith www.ColtenSmithFoundation.org,
the boy who attended therapy at Eureca with Cooper, has passed away. The cause
is still being investigated and his father, Tom, is in agony. We feel his pain
deeply as Cooper and Colten suffered from the same injury. Tom has lost his son
twice. Bridget attended the funeral which was attended by hundreds of people.
After beautiful words from his father and older brother, Cody, followed by a
heart-wrenching slide show, the congregation went outside to participate in a
balloon release. As we watched the balloons float away to heaven they started
to form a pattern. Someone yelled out “Look, they’re forming a ‘C’ for Colten”
and they were! It was amazing.
Cooper, Tom & Colten at Eureca in 2003
Spring 2004 ~
Cooper’s teacher, Perry, has been working with Bridget on
writing up a new Individualized Educational Plan (IEP) for Cooper. This is
important because it helps to have more clearly set goals so you can plan
better on how to achieve them. The district can also help out more when they
see the plan – they can offer additional services or equipment necessary to
meet the goals. Cooper has had several IEP’s and none were ever this thorough
or well written.
Perry is also an artist. He drew a picture of Cooper, framed
it and gave it to Cooper as a gift. It’s taken from a photo of Cooper playing
in the sprinklers before his accident. It’s one of our favorite pictures of
Cooper. We’ve hung it over his bed.
Cooper’s nurse Paula has had to leave us. She’s getting
married and moving to Florida.
Fortunately, a wonderful nurse we’ve had in the past was available. Jeanne is
back working with Cooper and we feel blessed to have her!
Winter 2004 ~
After attending therapy at Eureca it was hard for us to get
back into the daily therapy routine we’d been carrying out with volunteers. We
have a wonderful new nurse named Paula that takes excellent care of Cooper 2
days a week. Cooper also has a Social Recreational Coordinator working with him
1 day a week named Vanessa. Perry has developed a new rating system individualized
for Cooper. He realized the areas he could help Cooper improve on and charts
his progress accordingly. Every day when Perry spends time with Cooper you can
hear Cooper laugh and squeal the entire time. He usually gets worn out and
falls asleep by the end of their hour together. Between Vanessa, Perry and his
Quadriciser, Cooper’s days are pretty full!
January 2004 ~
We’ve lost a beloved friend. Keith Pennock, founder of Brain
Net, passed away in his sleep. He was a dear man, loving husband, and devoted
father. Through him and his family he touched the lives of thousands of
children around the world! His, and his wife Val’s, dedication to their
daughter, Alison, brought out a potential in her that was before thought
impossible. That’s what he did – made the impossible a reality! Keith’s work
helped Cooper in ways we before thought impossible. He gave us hope! How do you
thank someone for a gift like that? We try to find ways to make it happen
because that’s what he taught us to do! We thank Keith and the Pennock family
for their endless efforts in helping ours and children like ours around the
world. We thank God for placing them in our lives!
A few mothers from the Parents of Near Drowners support
group Bridget belongs to felt so deeply saddened by Keith’s passing that they
felt they had to do something. With the help of another loving man and
therapist, Chris Hipsher, we wrote a poem about him entitled “Ol’ Chap” and had
it engraved on a plaque as our gift to the family. It also contained the
pictures of the children we knew that had been helped by Brain Net, including
Cooper’s. The plaque now hangs in The Alison Centre in England, a facility named after his
daughter that continues to help brain injured children.
Click here to read “Ol Chap”
September 2003 ~
We completed a full month of intense therapy at the Eureca
Institute! Therapy began every weekday at 8:00 a.m. so in order to make it on
time to Anaheim
from the desert we had to leave at 5:30 – rush hour and all! This along with
taking my 5-month-old baby girl with me was a lot of work! We tried to stay in
the area overnight a couple of times, but Cooper wouldn’t sleep. I found it
easier to drive home every night so that we could all get some rest. It was
hard as the month wore on, but we did it!
The therapy was hard on Cooper too! There are 3 sessions of
therapy during the day with 2 breaks in between. Each day began with the
application of Bees Wax to his limbs, followed by intense and repetitive
stretches. The wax is used to warm and loosen the muscles as well as increase
circulation. They also used braces to keep Cooper’s arms outstretched. They
switched off with the wax on his limbs each day – one day it was arms and the
next it was legs.
Once he was loosened up Cooper was put through a series of
exercises. He was encouraged to move his own limbs through these exercises.
First, they try verbal commands, then they stimulate the muscles he needs to
use to make the motion happen by rubbing and sometimes even pinching the
corresponding areas. At the end of that session Cooper would go in a stander
for 15 minutes.
The next session Cooper hated! This was called “Suit
Therapy” – Cooper wore a suit with elastic straps that would pull him into
alignment. There were little bungee cords running up and down his body and even
attached to his shoes. They perform exercises while in the suit so that
patients will feel what it’s like to move while in correct alignment. Also,
putting pressure on joints stimulates/ reinforces the movement of that joint.
It wasn’t the suit that he hated so much – it was the exercises. He especially
hates being on his stomach/ face. He often bites his lips or cheeks and would
often bite them to the point of bleeding. He does this sometimes while eating
too, but it happens more when he’s laying face down, of course.
The last session was his favorite – “Sunbeam Therapy”. In
this session he wore a bunch of belts and straps with metal hooks on them.
There are 4 poles in the 4 corners surrounding him with bungee cords attached
to them. The bungees are then hooked on to Cooper to hold him up and pull him
into correct alignment. Once he’s all hooked up the bouncing begins. They
usually started by sitting a on a peanut ball with Cooper and bouncing
repeatedly. Cooper loves bounding and began holding his head up during this
part as the month wore on. Then they had Cooper dome some standing, weight
transferring on a stair stepper and knee walking on a treadmill – all while in
the “spider” as it has become affectionately called. At the end they would
raise him higher in the air with the bungees and throw him up and down. Copper
loved this! He would squeal with joy so loud you could hear him down the hall!
His therapist’s name was Magda and she was also known for loudly encouraging
her patients. You would hear Magda yell “Go up, Cooper, go up!” and then Cooper
would laugh and squeal. It was fun to watch!
Cooper with Magda in Sunbeam
One day Cooper a therapy assistant strapped Cooper into the
stander with his leg slightly twisted and it sprained his ankle. He cried
really hard so I took him for an X-ray the next day. It turned out fine, but
was sore for a long time. We made some very special friends during that month
at Eureca. While the kids are in therapy the parents mostly wait in the waiting
room. We shared our stories –laughed and cried – we empathized because we truly
understand what the other is going through. Another child there, Colten Smith, had
also been the victim of a near drowning accident. He was there with his father,
Tom. Colten also had a brother named Cody!
Summer 2003 ~
Since we have a new little baby girl, Jeff takes Cooper to
his Brain Net reassessment by himself. It was a difficult trip because we
forgot Cooper’s main sleeping aid – a tape of Bridget singing to him. After
hours of trying to get him to sleep – Jeff called Bridget and she sang Cooper
to sleep over the phone. That took another 2 hours.
The sleepless night paid off because Jeff came home with
great news and new helpful techniques. Cooper received another award! This award
was for Increased Understanding and
Responsiveness. This attributed to many things – one major thing being the
disappearance of the Babinski Reflex. This reflex occurs in children under 2
normally, but then disappears. If it appears after that there is a sign of
nerve damage. Cooper was not responding appropriately with this reflex until
now. Getting rid of abnormal reflexes is part of what we are trying to
accomplish through patterning. Abnormal reflexes are indicators that messages
aren’t getting through or may even inhibit learning. Patterning neurologically
organizes the brain and blocks the abnormal reflexes.
Keith ahs always told us to put Cooper on his tummy. He uses
the analogy that a car can’t go very far on it’s hood. Cooper does move more when
on his tummy, but with that comes more crying. We’ve been apprehensive about
putting him through it, but Keith laid down the law! He said Cooper must be on
his tummy at all times – no more lying on his back! Keith said his creeping
will continually improve if we have some tough love and force Cooper to spend
time on his tummy. Some how Keith and Val have a way of putting things so
nicely, but extremely direct! It must be the accent?!
They also introduced hot water into his therapy routine.
Cooper’s muscles are very tight. They showed Jeff how to float Cooper in as hot
a bath as he could stand before performing patterning. This should make the
patterning more effective. Cooper seems to
like it too! He almost always falls asleep while floating in the warmth!
Spring 2003 ~
A convention called the Abilities Expo was held in Irvine, CA.
Many of the friends Bridget had made on the Parents of Near Drowns email list
were going to this event. Bridget took new baby Sarah and finally met these
friends in person. One of the mothers, Lynette
LaScala www.geocities.com/CodyLOL,
works for an organization called EuroMed.
www.euromed.pl/en/index.php
This is a Polish based therapeutic center that has had HUGE success in treating
various brain injuries. One of their methods is derived from astronauts and how
their bodies respond to weightlessness. They developed special suits to prevent
muscle atrophy in astronauts when they were in space for extended periods of
time. These suits put their bodies in correct alignment while simultaneously
putting pressure on their joints as if they were bearing weight. When adapted
for use on earth there was a similar benefit. The problem is you have to travel
to Poland
and stay there for a month.
We had found out about a similar facility called EuroPeds www.europeds.org/epp_st.htm
in Michigan – where Jeff’s family lives – that
also accepts insurance! Still you have to spend a month there which would be a
lot of added expense and hardship.
While walking through the exhibition Hall at the expo
Bridget found another facility called The
Eureca Institute www.eurecainstitute.com
that provides this therapy and they are located in Anaheim, CA!
Eureca also works with insurance – finally something is covered! After further
research a few phone calls Cooper is signed up to begin their program in
September!
We also moved to a new home! We’re in the same city, but had
to get a bigger home without a pool for our new little girl. Sarah’s room is
already painted pink and we’re right across the street from some good friends
so it worked out great!
Somervilles at their new home
~ 2003
April 21, 2003 ~
Sarah Pallie Somerville is born! 9 lbs. – 19 ½ inches
Bridget’s dear friend, Sarah McIntosh – a labor delivery
nurse who also has a brain injured son, Ryan – came and monitored the baby the
entire time. There was some cause for concern because Sarah was a VBAC delivery
(Cooper was breech/ c-section). Sarah McIntosh made sure the baby was never in
danger!
Our beautiful, healthy baby girl also joined in to help
Cooper the second she was born! Sarah’s cord blood was saved so that Cooper may
use her stem cells http://www.stemcelltherapies.org/stemcells1.htm
some day. This will also be a precaution if Sarah ever needed a transplant
herself. To find out more information on saving Umbilical Cord Blood please
visit: www.viacord.com
Sarah Pallie Cooper meeting Sarah for the first time
February 2003 ~
We can’t make it to the Brain Net reassessment this time so
we decide to videotape our routine and send it to them instead. Keith is not
happy with the way we are performing patterning so he tells us to stop! He says
if done incorrectly, patterning can be neurologically disorganizing. We take a break
from that exercise until the next reassessment. In the meantime, Cooper has the
Quadriciser – he rides it an hour each day.
December 2002 ~
Cooper’s Great Grandmother Sharon generously donates the
funds for Cooper to attend another round of HBOT. Bridget discovers a local
facility, Rancho Mirage Hyperbarics www.RanchoMirageHyperbarics.com
that offers HBO without a head tent (which Cooper hates!) That’s the good
news…the bad news is Cooper needs someone to go in the tank with him and
Bridget can’t go in pregnant. Since Jeff has to work during their operating
hours we have to ask for help. Some therapy volunteers: Virgil Brant and Jack
McComas, generously offer to help us out! They, along with Cooper’s nurse,
Lianna Vento, accompany Cooper through this treatment. It’s hot, long and
uncomfortable since Cooper is lying on their chest – but they are committed to
helping Cooper no matter what! One of these volunteers noticed some healing
affects himself while joining Cooper in HBOT. Jeff gets his turn on Saturdays.
Cooper successfully completes 40 more treatments by January 2003.
Summer 2002 ~
Before attending Cooper’s Brain Net reassessment we get some
wonderful news, Bridget’s pregnant! Due to possible complications Bridget has
to take it easy on this trip.
The reassessment is great as always. Cooper achieves 3
developmental profile changes including improved responses in vision, auditory
response and tactile response. He opens his hands to feel things and enjoys
feeling a variety of textures. Brain Net says Cooper is gaining much more self
awareness and a self-protective response.
After the reassessment we extend the trip into a
mini-vacation. We drive into Boston,
Massachusetts. Of course, Jeff
had already made sure the Red Sox would be in town. Bridget secretly arranged
for Jeff’s brother Bud to meet us at the game. Bridget and Bud work together
and get some special treatment from the Red Sox – it is the first time Bud has
seen Cooper since his accident. We arrived early to the stadium for a tour and
see “Welcome Somervilles” up on the scoreboard. As we get out to the famous
“Green Monster” Bud steps out from inside. It was a great moment. Thank you Boston Red Sox!
Spring 2002 ~
Tamara Hildebrande has been having some success in treating
her son’s seizures. She has been using a Brain Protocol developed by Dr. Abel
in Aliso Viejo, CA. Dr. Abel’s protocol has become very popular and in high
demand, so much so that he now only sees patients through referrals. Luckily we
have an in with the Hildebrandes!
We take Cooper to see Dr. Abel and as soon as we walk in he
says “HE’S YELLOW”. We took a step back and looked at Cooper and he was right!
He was yellow! We couldn’t believe it! We all took turns holding our skin up to
Cooer’s and we were very pink compared to him. Dr. Abel says that means
diminished liver function from all the medications Cooper’s taken over the
years. He puts him on homeopathic remedies to detoxify his liver. He says we
have to do that in order to make the brain protocol effective.
Cooper has a new home teacher working with him. His name is
Perry Butler and we feel blessed to have him. He is a former elementary school
principal and has experience working with Special Needs children. He is very
enthusiastic and has a lot of great ideas. He comes over every weekday for an
hour to work with Cooper.
Winter 2002 ~
Visiting Pennsylvania
in the Winter is a whole new experience! The best part was that Cooper got an
award for CREEPING ON HIS TUMMY!
We’ve been teaching Cooper the pattern of how to creep (combat crawl) and then
encouraging him to use it to get down a ramp. Cooper can now use the pattern to
creep on the floor! It’s not perfected, but it’s a long way from where we came.
When we first started we placed the ramp on a very steep incline. Cooper would
just get tight and not move at all. It’s amazing to the see pattern working.
Cooper’s been taught to move one side of his body in conjunction with the
movement of his head. When he lies on his tummy you see him moving in that very
way. He turns his head and his arm and leg come up. Cooper’s brain has been
retrained on how to move. This is a great accomplishment for Cooper as well as
the volunteers who’ve helped him get here! Thank you to our loyal Cooper
Helpers! Hooray!
Cooper achieved other milestones as well. Through Brain
Net’s testing they find Cooper is able to recognize sounds – that is he has
learned what different sounds mean.
He also has a developed his own sound that we’ve come to know
as “more”. Before Cooper was proficient in opening his right hand and now the
left has followed suit. All in all is was a wonderful reassessment!
We bite the bullet and get the Quadriciser! We truly can’t
compete with Cooper’s tight muscles. This machine will help us keep the range
of motion up in Cooper’s limbs. We feel his muscles could become contracted
without it! Thanks for a great invention Larry Bohanan!
July
2001 ~
Bridget and her friend, Tamara Hildebrand, fly to Florida to attend a
Hyperbaric Oxygen Conference hosted by Dr.
Richard Neubauer www.oceanhbo.com .
They had multiple seminars on therapies for brain injured people and Bridget
learned a ton! 
Bridget with Dr. Neubauer Bridget,
Tamara & HBOT specialists
The Quadriciser www.Quadriciser.com equipment available
at Miracle Mountain was on display and Bridget met
the owner/creator , Larry Bohanan and learned more about it. She made great
connections with doctors, therapists, and other parents. She was also able to
meet another parent of a near drowner from an online support group she’d been
talking to from across the country!
Tamara and Bridget attended a seminar given by Dr. Rader.
Dr. Rader is currently using embryonic stem cells to treat brain injury in the Dominican Republic.
He’s had some success, but there is much unknown about the side effects. The
initial fee for his treatment is $25,000 not including travel expenses.
We met leaders and pioneers in Hyperbaric medicine including
Dr. Richard Neubauer, Dr. Phillip James, Dr. Paul Harch, Dr. John Cassidy, Dr.
Michael Uzler to name a few.
One very important contact made was Fia Richmond. Fia has a
brain injured son and was very knowledgeable about available therapies and new
research as well. She particularly knew a lot about Stem Cell research and
became frustrated with the slow process of getting the answers for brain
injured kids. She decided to start a non-profit organization that could focus
on this so that we can get help to these kids quicker. She assembled a top
notch team of researchers and Children’s
Neurobiological Solutions www.cnsfoundation.org
was born! She is one inspiring woman and her organization is sure to help many!
Thanks for the frequent flyer miles Uncle Ron!
Fall 2001 ~
When Bridget first began corresponding with other parents in
the Yahoo group there weren’t many people involved and there wasn’t a lot of
information to go on. She and other caregivers expressed their frustration in
looking for answers. Unfortunately, some answers have to be carried out very
soon following the injury and we had not known about them in time. Chris
Hipsher, a medical student who had helped us all find answers for our children,
was determined to do something about this. He enlisted the help of some of the
parents and created a website called HUGS
– Help and Understanding for God’s Special children www.hugsfoundation.org
Parents agreed to list their child and the therapies they’d
tried on this site along with their contact information. This way any parents
encountering these horrible accidents would have someone to discuss their
options with. We had pamphlets made and parents across the country placed them
in various Emergency Rooms and ICU’s.
To this day I have been contacted several times through this
website.
August
2001 ~
Cooper’s
reassessment at Brain Net was inspiring! After diligently following the program
for a year we were excited to see what the experts thought of Cooper’s
progress. At first we were a little skeptical that he hadn’t improved much, but
they seemed very pleased with his changes. They chart Cooper’s progress on a
Development Profile and he moved forward in several areas including:
recognizing objects in pictures, understanding simple commands, and releasing
an object with his right hand in response to a stimulus.
When
you’ve been told not to expect any changes for the better – these are huge steps!
We were taught some new exercises and can’t wait to get home to share all the
news with Cooper’s faithful volunteers! Our friend, Chris Hipsher, was able to
join us there as well.
Cooper
received an award for eating entirely by mouth! A copy of the awards given to
children in the Brain Net program also hangs in the Alison Centre in England.
The Alison Centre is a rehab facility started by the Pennocks and is named
after their own brain injured daughter who inspired them to help thousands of
children around the world.
Cooper
gets his feeding tube removed when we return from Brain Net. He is thriving
while eating entirely by mouth for over a year now!
May
2001 ~
During the month of May, Cooper and Bridget were in North Carolina at a place called Miracle Mountain.
They spent 3 1/2 weeks getting various treatments for Cooper including:
Hyperbaric Oxygen Treatments (HBO), Sound Harmonics, Essential Oil Massage http://www.youngliving.us/, and Patterning www.Quadriciser.com. Though Hyperbarics
is offered much closer to home, Miracle
Mountain offered a
terrific price for HBO and included all the other therapies as well. When we
found out that we could get the flights donated as well, it seemed too good of
an opportunity to pass up.
Our trip there went pretty well. The flights were long, but
Cooper didn’t complain too much. We did have an exhausting drive from the
airport to the center, but once we were there they made us feel right at home.
The center is owned by Bob and Judy Hartsoe who got involved with this therapy
when their own grandson, Garrett, was diagnosed with Cerebral Palsy.
We were taken up to the house we’d be staying at. It is two
miles up a dirt road from the center and they call it the “Peak House” after
the name of the road it’s on. It was a very cute little 3 bedroom that we
shared with another mother and son, Lesly and Jaden. They gave us a van to
share and drive around with however we pleased.
Cooper and his mom relaxing in their cabin
They put us on a schedule of 2 HBO treatments a day: one at
7:30am and the other at 12:30pm. In between, Cooper went on the patterning
chair and did the Sound Harmonics. The chair is much like the manual patterning
we do at home already with Cooper. One of the reasons we agreed to go to Miracle Mountain was because of the chair. We weren’t
willing to give up the patterning we do with him on a daily basis for that long
of a time. This way he got to keep that in place.
We hooked Cooper’s hands and feet into the chair and turned
it on for 15 minutes with 15 repetitions per minute. It moved his arms and legs
back and forth in a cross pattern. He seemed to really enjoy the patterning
chair in the mornings. He would fall asleep most of the time - it seemed to
really relax him. I was told to put him in it twice a day for 15 minutes
following our HBO treatments, but Cooper didn’t seem to enjoy being in the
chair in the afternoons. Cooper is usually grumpy in the afternoons anyway, so
that made sense. I decided to put him in it for 30 minutes in the morning
instead and that worked out great! It was so great that I looked into the cost:
$10,000!
Cooper on Quadriciser Cooper getting an Cooper listening to his
Essential Oil Massage Audio
Therapy
Another person attending that month was Christina, a
20-year-old Cerebral Palsy girl who I soon named “Inspiration”. She has similar
problems to Cooper and has dealt with tight muscles her entire life. It was her
second trip to MM and she felt so good after the first time that she couldn’t
wait to get back! What was so extra special to me about her was that it was as
if I could ask her questions regarding therapy and get the answers that Cooper
would tell me if he could. I would ask her if certain positions were better
than others or if a certain stretch felt good or bad, and I could tell that
Cooper agreed with her answers once I’d try it on him. I’ve often felt that
Cooper is almost the same boy inside as he was before his accident, but he’s
trapped in a body that won’t work and he can’t even tell me about it. Christina
told me that she felt like that growing up. That she kept trying to tell
everybody things and no one understood her. She didn’t speak intelligibly until
she was 8 and didn’t take her first steps until she was 10. She’s still working
on motor functions, but recently graduated high school with a 3.8 g.p.a. and has
been accepted to Columbia
University.
Lesly and I soon became good friends. Bridget and Lesley see
Jaden take his first steps!
Bridget/ Cooper & Lesly/ Jaden in HBOT The whole gang on a neighbor’s
ranch
Spring 2001 ~
While researching Hyperbaric Treatments Bridget discovers a
facility called Miracle Mountain. http://miraclemountain.homestead.com/HBOTforCP.html#anchor_5
They are located in North Carolina
and are run by a family whose grandchild has a brain injury. They offer
discounts on HBOT for children, grants, additional therapies including:
patterning, essential oil massage, audio therapy and equestrian therapy. In
addition, we found out that Miracle Flights
www.MiracleFlights.com will fly us
there for free. Miracle
Mountain offers free
lodging and use of a car while you’re there. After applying we were offered a
partial grant and are scheduled to attend their September session.
Bridget finds out about a test that is being utilized to
track circulation in the brain called a
Spect scan http://www.hyperbarics.org/spect/harchmainspect.html
Since HBOT is meant to increase circulation, then this test may be used to
chart the effectiveness of those treatments. Insurance companies have been
frequently reimbursing patient who could prove they’d progressed using HBOT
from their Spect (Single Photon Emission Computed Tomography) scans. We have a
Spect scan performed on Cooper so that we can begin to chart his progress. It
shows poor circulation in his brain. Hopefully, the scans following HBOT will
show improvement!
April
28, 2001 ~
The
first Cooper Benefit was a great success! It was a Spaghetti Dinner and Silent
Auction held at our church. Many church and community members pitched in to
help. Jeff has now joined the church band and they provided entertainment at
the event. Cody performed his song that he wrote for Cooper with his Uncle Beau
called, “My Friend, My Brother”. Needless to say, there wasn’t a dry eye in the
place! The funds raised helped pay for the Brain Net visits and Hyperbaric
Treatments for Cooper. Thanks to all who made it possible! (see thank you page)
Cody
performing Jean
Strain overseeing the Silent Auction
“My Friend, My Brother”
Winter
2001 ~
Cooper is doing fantastic with his home therapy
program! Every day, 3 times a day, we do the home program we learned at the
Brain-Net seminar. We have our loyal volunteers help out with patterning. We
are trying to teach Cooper to creep with the patterning and then we put him on
a ramp and encourage him to use this pattern to get down. As he learns to do
this we can lower the incline of the ramp to decrease the aid he receives from
gravity. He is beginning to master the first level! He is pushing himself down
with his legs and lifting and turning his head - just like in the pattern. We
will soon be lowering the ramp to the next level.
Cooper doing masking and Cooper going down his ramp with help from
flash cards with his Dad Volunteer
Jean
In December, Cooper received Botox injections again in
his arms. Botox temporarily deadens a muscle in order to stretch it out. If we
don’t begin to take measures like this Cooper's arms will become so tight they
may become deformed. The doctor ordered intense therapy to be done on his arms
while this is in effect. We were lucky to get the therapist we requested and
she's already making a huge difference in his range of motion and movement
doing a therapy called Myofascial Release www.myofascial-release.com
Cooper has been making a lot of new sounds and
expressions! He smiles every time Jeff says Hello to him when he gets home from
work.
Cooper giggling when Dad gets home
Though we think it's important to attend Brain Net every 6 months, we will have
to miss the next reassessment. Money and weather is keeping us from getting
there, but we will be attending the July clinic. We look forward to seeing how
much he can progress by then!
We’ve decided to discontinue the Ketogenic Diet. It
actually seems to help his seizures, but it’s hard to fine tune. We’ve been
working with a nutritionist to get the proportions right, but it’s frustrating.
At one point we had Cooper down to 7 seizures in one day. It sounds like a lot,
but when you use to be at 100 a day that’s a significant improvement.
Currently, we’re at 25 per day and can’t seem to get them back down. Bridget’s
research has also turned up evidence that it’s not completely healthy. We feel
we gave it a fair shot for over a year. We may try it again someday if no other
answers prevail!
We’d become so nutrition conscious that we were unsure what
to feed Cooper after discontinuing the diet. Someone suggested the book “Breaking the Vicious Cycle” http://www.amazon.com/exec/obidos/ASIN/0969276818/childrensneur-20/002-1754258-3809668
by : Elaine Gottschall. After reading it we began trying some of the recipes in
there and Cooper seems to really like them!
Fall 2000 ~
To recruit volunteers to help with Cooper’s therapy we
passed out flyers at local churches, clubs, and in our neighborhood. One of our
neighbors that responded, Keith Newsome and his wife Cid, happened to be the
pastor of a church. Keith asked if he could present our plea for help to his
congregation. He also invited us to bring Cooper up to the altar one Sunday and
introduce him. After that we had so many volunteers we had to put some people
on a substitute list. We began attending that church regularly and the
outpouring of love was phenomenal.
Keith and Cid Newsome with Cooper
Church members responded immediately and before we knew it
we had more than enough volunteers to carry out Cooper’s home program.
Wonderful people began giving of their time on a daily basis to help Cooper
recover.
We found a local facility that provides equestrian therapy
for children called Pegasus www.pegasusridingacademy.org .
After discussing it with Cooper’s pediatrician we begin taking Cooper to weekly
riding sessions. Cooper is often tight and complaining – he has trouble
relaxing. Right away when he started riding horses we noticed him relaxing - sometimes
even to the point of falling asleep on the horse! Cooper rides a short horse
with two tall side-walkers holding him up on either side of him. He stays on
the horse at first about 10 minutes, but quickly works up to tolerating it for
20! The gait of the horse is said to motivate kids to move and have proper
balance. It also stretches his legs and works his trunk and neck control. It’s
nice to see him doing something fun and active. He doesn’t get o do very many
fun things anymore. We like to see him getting some time outdoors as well.
August 2000 ~
After detailed research we discovered how much Hyperbaric Oxygen
treatments could truly benefit Cooper. We found a Hyperbaric Oxygen Treatment
facility closer to home in San
Bernardino called Rapid Recovery Hyperbarics. www.hbot4u.com
The owner of the facility offers discounts to children, affording us the
opportunity to begin Cooper’s first round of treatments. HBOT simulates the
pressure you feel when diving under water. There is tremendous pressure on your
ear drums in this process so Bridget had to accompany Cooper in the chamber and
give him sips of a drink to force him to swallow. Swallowing would alleviate
the pressure and keep his ear drums from bursting. Cooper also had to wear a
head tent in the chamber when he reached the lowest depth. 100% oxygen would be
forced into the head tent allowing him to absorb more of the healing gas while
in the pressurized tank.
Cooper hated the head tent and would cry throughout most of the 90 minute
treatment. Bridget soon learned that Cooper would calm down when he heard a
song with his name in it. Many “Cooper Songs” were sung inside the chamber!
Cooper didn’t like the car ride either so with the hour ride there, 90 minute
treatment, and the hour ride home it was a rough time for Coop!
It proved to be worth it though because Cooper began to show signs of
improvement early on including learning to suck a bottle, improved swallowing,
looser muscles, less constipation, and improved vision.
To read more about the results Cooper had from this first round of HBO
you can click on the following link: www.hbot4u.com/cooper.html
July
2000 ~
Cooper attended his first Brain-Net assessment in Columbia,
PA. Our trip to Brian Net
was SO insightful! Brain Net is an organization run by the Pennock family.
Keith and Val Pennock are the parents of a brain injured child themselves so
they were both scientifically and emotionally knowledgeable. They taught us
realistic answers for how to help Cooper. Up until now we’ve felt Cooper’s
therapy wasn’t teaching him much. We learned through stimulation Cooper’s brain
CAN relearn what he’s lost.
Brain Net uses the principles of: Intensity, Frequency, and
Duration. Keith told us a wonderful analogy referring to a drop of water on
your head. If one little drop landed on your head you wouldn’t notice it. If a
bucket dropped on your head you surely would notice it - duration. If one
little drop landed on your head more often, then you would begin to notice it -
frequency. If one drop of water dropped on your head over and over until your
whole head was wet, you’d surely notice that - duration. So it is with therapy
– this is how retraining the brain works!
Keith,
Val, and Judy Pennock
Keith (Our Hero!) with the Somervilles
We learned a home therapy program that should be carried out
with 5 helpers 3 times a day/ 7 times a week! By moving his body through
repetitive patterns the brain can be “rewired” to pick up the function lost by
the damaged areas of the brain. It made sense since repetition is how we all
learn and perfect new skills.
Judy showing Bridget Suspended Inverted
Rotation (SIR) with Cooper
Cody was the guinea pig for all the families to learn the
techniques on. What a sport! We also were able to meet Chris Hipsher in person.
Chris is an OT student Bridget met online. It was with his help that we even
found Brain Net. Chris is also working on a website for Cooper called Cooper’s Corner www.geocities.com/Cooper1296/
He drove to Pennsylvania from Toledo, Ohio
so he could learn more about their techniques and meet us in person.
Chris, Cody and Cooper in Columbia, Pennsylvania
Spring
2000 ~
Cooper is half way done with his acupuncture treatments. His seizures are now
down to 10 - 15 a day! He is more alert and his eyesight is improving! He is
starting to hold up his head and is overall much happier! :o) Peggy and John
Reid generously allow Bridget and Cooper to stay overnight at their home when
they go for the treatments twice a week, since the doctor is 2 hours away!
Cooper is set to begin attending school soon in a classroom setting. He'll be
working with a wonderful teacher named Sandy
who has had great success in teaching children to move!
|
Cooper holding his head up!
|
We have been looking into a therapy called Hyperbaric
Oxygen Treatments (HBOT). http://oceanhbo.com/client/ohc/what.htm There have been some
miraculous recoveries with this technique involving similar conditions to
Cooper's. The treatment calls for the patient to be in a decompression chamber
for an hour twice a day for 20 consecutive days. We will have to travel at
least 2 hours one way for HBOT. This therapy is very expensive and not covered
by insurance for Cooper’s diagnosis. Each treatment costs up to $250 and Cooper
may need up to 400 treatments.
Another exciting development we've been following is
the breakthroughs scientists are making in Stem Cell www.stemcelltherapies.org research. Stem Cells have
been found to regenerate damaged tissue - even brain tissue! There is a bill in
congress called the "Stem Cell Research Act of 2000" that will grant
federal funding to this research. Human clinical trials are set to begin in
less than 2 years! We are very hopeful for Cooper's future!
Winter
2000 ~
Friends we met at the doctor's office, The Ramages,
tell us about an acupuncturist that is working wonders for their son. Dr. Wen
assesses Cooper and says he can help him improve a great deal. After confirming
his claims with other acupuncturists we decide to begin this regimen.
Bridget researches
online as much as possible. She meets wonderful, caring people some of whom
have been through other tragedies. Through another near drowning boy’s website
she meets an Occupational Therapy student in Ohio, Chris Hipsher. While interning, Chris
develops a special place in his heart for near drowning children. He helps
Bridget research available therapies and creates “Cooper’s Corner” - a website
for Cooper.
Bridget also
discovers some helpful books:
What To Do With
Your Brain Injured Child
by: Glenn Doman
http://www.amazon.com/exec/obidos/tg/detail/-/0895295989/qid=1126504211/sr=1-1/ref=sr_1_1/002-1754258-3809668?v=glance&s=books
Rescuing Brain
Injured Children by: Keith Pennock.
http://www.amazon.com/exec/obidos/tg/detail/-/1853980307/qid=1126504356/sr=1-1/ref=sr_1_1/002-1754258-3809668?v=glance&s=books
Both books describe
a technique called Patterning http://www.quackwatch.org/01QuackeryRelatedTopics/patterning.html
that will help to
"rewire" the brain to move the body. More research puts us in touch
with Keith Pennock and we begin the process of a trip to learn their successful
techniques.
December
1999 ~
Cooper has a big party for his 3rd
birthday. We made all the games therapeutic complete with varying textures and
sounds. Thanks to all who helped to make it special!
Fall
1999 ~
Cooper begins Aquatic Therapy http://www.geocities.com/rothhammerintl/
The water
encourages him to have more spontaneous movement in his legs. We hire a
Physical Therapist named Sam to work with Cooper several times a week doing
deep muscle massage and nerve stimulation.
Cooper's arms are getting very tight due to his injury causing him to
constantly keep them flexed. He gets Botox www.pediatricstrokenetwork.com%2Fbotox.html injections into his arm
muscles which help to relax them and allows the muscles to be stretched. The
Botox, Sam, and Cooper's Occupational Therapist, Mike, all help Cooper to begin
to use his arms and hands more.
Cooper at home on his hammock swing with OT
Mike
Summer 1999 ~
Cooper's eating quickly progresses and he soon begins to eat all meals by mouth.
His GI Specialist is very impressed and takes him off of all medications that
were aiding in digestion. He also says Cooper may soon be able to get rid of
his feeding tube altogether!
The
whole family takes a much needed vacation and flies to Oregon to visit our friends, The Hagers. The
trip is a lot of fun for all of us and proves that Cooper is able to handle
traveling and being in public much better now.
We take Cooper to see a Neuro-Opthomologist named Dr. Mark Borchert http://www.usc.edu/hsc/doheny/ to assess his vision. We learn good news and bad
news. The good news is that he has some vision and the many of the deficits he
has may be due to a semi-temporary condition called Cortical Visual Impairment (CVI) http://www.blindbabies.org/factsheet_cvi.htm
The bad news is that he has some Optic Nerve
damage that is permanent. We are optimistic that most of the damage is
temporary.
Spring
1999 ~
Cooper's new medications are helping, but not preventing his seizures. http://www.iahp.org/The_Na.304+M54a708de802.0.html
He's down to about 60 seizures a day, but Dr. Huf
decides it's time to start the diet too. In April, Jeff and Bridget attend 3
days of training with a nutritionist to learn how to administer the Ketogenic
Diet http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/
In May, Cooper
is admitted to the hospital to begin the diet. Since it involves fasting he has
to be closely monitored so that his blood sugar doesn't get too low. Almost
immediately, Cooper's seizures drop to around 40 a day. We now have to
measure every bit of food and liquid Cooper intakes to the 10th of a gram and
keep direct proportions.
Cooper begins working with a wonderful home teacher
named Lynn. Lynn introduces Cooper to
switches that he can use to activate toys and may even be able to use to help
him communicate someday. Cooper soon learns how to activate the switch and can
do it when he wants to and ONLY when he wants to!
February
1999 ~
Cooper's new neurologist, Dr. Roger Huf, has Cooper admitted to the hospital
for some in depth testing on his seizures. Cooper must undergo 3 days of
wearing electrodes on his head - a process called Tilemetry. The testing gives
Dr. Huf the information he needs to change Cooper's medications.
Cooper (with his mom, Bridget) being visited
by a volunteer dog during Tilemetry.
Bridget discovers an online support group for parents of
near drowning victims: www.yahoogroups.com/parentsofneardrowns
Through this group other parents and caregivers were able to
share research information and emotionally support one another.
Lynn Conklin – a home teacher – begins working with Cooper.
She has a lot of knowledge about brain injured children.
We also get a nurse 2 days a week to give Bridget a
break. We are lucky enough to have a wonderful nurse named Cis who takes great
care of Cooper and treats him as if he were her own!
Winter 1999 ~
This seizure
disorder quickly progresses and Cooper is put on Phenobarbital. That works for
a little while, but then stops and Cooper is having up to 95 seizures a day! We
are introduced to a Pediatric Neurologist and a special diet for seizures by
the Hildebrandes.
Cooper's Physical Therapists, Patricia and Jenny, stretch
Cooper’s tight muscles and put him in weight bearing positions that will help
him to regain movement in his limbs. Cooper shows signs of muscle control in
his arms, legs, and neck. Cooper is now 3-years-old and also begins to smile
again! :o)
Dec. 1998 ~
Cooper celebrated his 2nd birthday in the
hospital with other kids from his floor.
By
the end of the month Cooper is discharged from inpatient rehab. The Dr. says
Cooper’s reached a plateau for now and that he will continue to go though
series of progressions and then temporary plateaus. He informs us that Cooper
probably only has 25% left of his cortex from the accident. He further explains
that brain injuries due to loss of oxygen are difficult to overcome because the
entire cortex is affected. Cooper is scheduled for outpatient physical,
occupational, and speech therapy at Desert
Hospital. We get to bring him home in time for
Christmas.
Cody and Cooper ~ Christmas 1998
October
- December 1998 ~
Cooper
spends the next 2 months in inpatient rehab at Loma Linda. He is less
sensitive, but still hard to calm at night. Bridget stays with him during the
week with some breaks from her mom, Lisa. Jeff switches off with her for the
weekends so Bridget can spend some time with Cody. Cooper passes a swallow
study and is put on a liquid/ pureed diet.
Cooper working
with his
Cooper & Kyra with their
Occupational Therapist
Physical Therapists
Cooper endures painful weight bearing that is
supposed to increase the use of his limbs. We order a wheelchair, feeder seat,
and stander for home use. By the end of our time there he develops a seizure
disorder.
Cooper doing some weight bearing at home in
a standing frame.
September
1998 ~
Cooper begins outpatient rehabilitation. He is fitted with more splints for his
ankles and now for his arms too. He is showing responsiveness, but nothing
really purposeful yet. He is very sensitive and cries constantly. Lights have
to be turned out and everything has to stay quiet. He is easily over-stimulated.
By the end of the month he starts to show slight improvement and we decide it's
time for inpatient rehab.
August 1998 ~
The most horrible times of our lives set in this month as the full gravity of
Cooper’s injury begins to hit us. Cooper cries non-stop all day. His muscles
are very tight and cause him painful spasms. He throws up at every meal time
and chokes. Jeff's mom, Ruth, stays with us to help take care of things. We are
completely overwhelmed.
July
21, 1998 ~
Bridget is
trained on how to use Cooper's new feeding tube and administer his list of
medications. He is also fitted with splints for his ankles because they are
getting very tight. Cooper begins to cry the final week there and we are happy
to hear his sweet little voice again, even if it sounds sad. We are introduced
to a little boy that also was a near drowner who is going through inpatient
rehabilitation. He looks great and is talking. We are told that we may be back
soon to begin the same rehabilitation as him. The
doctor says to look for purposeful movements/actions in Cooper to prove that he
has some activity in the cortex of his brain. We are sent home from the hospital on July 30, 1998. We had so many
gifts, balloons and cards that we needed 2 wagons and 2 nurses to help us carry
everything out.
Cooper getting a visit from his Uncle Beau a
week following the accident
July
19, 1998 ~
Cooper undergoes the placement of a feeding tube because his brain damage has
left him unable to chew or swallow effectively. We are told his damage is
severe, but could be temporary and due to swelling. Cooper won't cry or smile
and we are really worried. Cooper's muscles begin stiffening and further
testing reveals the damage may not be temporary.
July
12, 1998 ~
Cooper drowns on Sunday evening and is revived after 25 minutes of CPR. He is
rushed to Desert Hospital where he begins to try and
breathe on his own, but irregular. He is transferred to Loma Linda and his
parents are told he probably won't make it though the night. Not only did he
prove the doctors wrong, but begins breathing on his own the next day and
transferred out of ICU by the end of the week.
