What’s New with Cooper…
Continue to scroll down to follow Cooper’s progress since his
accident!
Winter 2005 - 2006 ~
We are trying to begin the process of putting Cooper’s newly raised funds to good use. We are trying to decide the best way to spend the funds so that Cooper can get the most out of it that he can. We seriously considered umbilical cord stem cell therapy. We don’t quite have enough funding for this, but could try to make it happen. It’s still in the experimental phase and not being performed in the U.S. There are so many conflicting reports on the subject that we don’t know what to do.
Our other option is to do a round of Hyperbaric Oxygen treatments, Take Cooper back to Eureca for Adeli Suit therapy, finish remodeling the shower to be handicap accessible, and by Cooper some equipment. By January that is the way we decided to go. Cooper began his month of therapy at Eureca, but due to some scheduling issues there we will have to wait until March to continue.
We thought Cooper would have to go far for Hyperbaric treatments (HBOT), but discovered that wasn’t the case! Our friend, Peggy Reid, told us about a friend of hers in Yorba Linda that had a Hyperbaric Treatment facility. After speaking with Dr. David Jacob at the Health and Wellness Center we scheduled our round of 40 treatments to begin February 22nd. They offered us a discount since Cooper attends Eureca, they are less than 10 minutes from our home, and the technician offered to watch Sarah (Cooper’s little sister) while Bridget and Cooper went in the chamber! What a blessing!
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On a wonderful side note – Jeff and Bridget were offered a wonderful gift by their friends The Hagers. They offered to take us to Puerto Vallarta for a week and help us pay for a nurse for the kids! We’d never been away without the kids after 14 years of marriage. Cooper’s nurse, Jeanne – from Palm Springs, agreed to stay with the kids and off we went! THANKS GEORGE AND BRENDA!!!
Cooper had outgrown his standing frame a few months ago. He uses it to gain strength and flexibility in his legs and trunk. The stander he uses at Eureca has the capability to grow with him, but is a custom made item. One of the therapists agreed to make one for Cooper! It was delivered in March, but still waiting for some additional accessories. It will be so great for Cooper. He’ll be able to eat in it, use his switch toys and work with his teacher too! He gets sick of his chair really easily.
The shower isn’t quite finished, but getting closer!
Cooper is having some difficulties. He’s been struggling with some minor reflux for a while. It’s gotten bad enough now that he had to start medication for it. He seems extra tired which has led to more seizures and more muscle spasms. It’s so hard to watch him go through this. He screams in pain from the spasms. As soon as you get him in a comfortable position he’s happy and smiling and back to his old self. We hope the Hyperbarics helps with this and are set to being the Ketogenic Diet again soon. No medications really helped him in the past. Please pray that there continues to be answers for Cooper so he can get more joy out of life!
Fall 2005 ~
Fall was an exciting season for Cooper! He attended Eureca Institute again where he gained more strength in his neck and trunk. By the end of his month of therapy there he had stopped having a painful reflex pattern that we’d never been able to control. About 2 weeks after he stopped it returned so we know that the intense therapy he was receiving was working. Hopefully after the next round it will stick!
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Cooper started working with a wonderful home teacher named Karen Raidy. He seems to enjoy his time with her and is working on shape recognition and grasping objects.
November 5th we held a wonderful fundraiser for Cooper. After many months of gathering Auction/ Raffle items, booking vendors, and promoting the event everything seemed to come together beautifully. We had fabulous items to be won, various boutique items for sale, and new Cooper T-shirts available as well (soon to be available online)!
Many generous and wonderful people gave of their time and money to help Cooper continue his therapies. We were overwhelmed by all the love and support. Donations continued to come in months after the event. We estimated the total money raised from the event to be approximately $8,000! We can never express how much we appreciate all that people did to help Cooper! Thank you to all!
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Thank you for your continued support!
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
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
August 2004 ~
For many years Bridget has heard about Dr. Steenblock. His
facility, Brain Therapeutics, www.strokedoctor.com is located in
nearby
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
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
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
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
We had found out about a similar facility called EuroPeds www.europeds.org/epp_st.htm
in
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
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!
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
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
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 
Bridget with Dr. Neubauer Bridget,
Tamara & HBOT specialists
The Quadriciser www.Quadriciser.com equipment available
at
Tamara and Bridget attended a seminar given by Dr. Rader.
Dr. Rader is currently using embryonic stem cells to treat brain injury in the
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
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
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
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
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
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
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
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
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
Chris, Cody and Cooper in
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
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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
Bridget also
discovers some helpful books:
What To Do With
Your Brain Injured Child
by: Glenn Doman
Rescuing Brain
Injured Children by: Keith Pennock.
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
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
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
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