Week of July 12, 1998 ~
Cooper drowns on Sunday evening and is revived after 25 minutes of CPR. He is rushed to the hospital where he begins to try and breathe on his own, but irregular. He is transferred to Loma Linda University Medical Center, and his parents are told he probably won't make it though the night. Not only did he prove the doctors wrong, but by the end of the week he was breathing on his own and
transferred out of ICU.
Week of July 19, 1998 ~
Cooper undergoes the placement of a feeding tube because his brain damage has left him unable to chew or swallow. 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.
Week of 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 rehab as him. 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.
Month of August ~
The most horrible times of our lives set in this month. Cooper cries non-stop all day. He is very tight and throws up at every meal time. Jeff's mom Ruth stays with us to help take care of things. We were completely overwhelmed.
Month of September ~
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 overstimulated. By the end of the month he starts to show slight improvement and we
decide it's time for inpatient rehab.
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. By the end of our time there he develops a seizure disorder. We get to bring
him home in time for Christmas.
Month
of January 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 also begins to smile! :o)
Month
of 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. 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!
April - May
1999 ~
Cooper's new medications are helping, but not preventing his seizures. 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, Danine Mele-Hayes, to learn how to administer the Ketogenic 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.
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!
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 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 temporary condition called Cortical Visual Impairment (CVI). The bad news is that he has some Optic Nerve damage that is permanent. We are optimistic that most of the damage is temporary.
Fall 1999~
Cooper's Physical Therapists, Patricia and Jenny, begin Aquatic Therapy with Cooper. The water encourages him to have more spontaneous movement in his legs. Bridget and Cooper also meet a Physical Therapist named Sam at the DMV! He begins working 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 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.
Winter 2000~
Cooper is now 3-years-old and has a new teacher, Katie. We begin working on a technique called "Patterning" that will help to "rewire" the brain to move the body. 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. We are skeptical, but after research into him and the procedure and lots of careful consideration, we decide to try it. We figure even if he helps Cooper a little bit it will be worth it!
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!
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We have been seriously looking into a therapy involving Hyperbaric Oxygen Chambers. There have been some miraculous recoveries with this technique involving similar conditions to Cooper's. The treatment calls for the patient to be in the chamber for an hour twice a day. There is a chamber for adults in our area that may work for Cooper. Otherwise, we will be traveling to either San Diego, Newport Beach, or Beverly Hills. We are working on getting the insurance to cover the cost of this therapy, as it is very expensive, but they are not likely to do so. We plan on holding fundraisers to help cover the costs if necessary.
Another exciting development we've been following is the breakthroughs scientists are making in Stem Cell 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! Needless to say, we are very hopeful for Cooper's future!
Summer 2000~
