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 Note from Mom and Dad
Our family's story
We believed, from the beginning, that Sara's little life held much promise. While watching Sara Ann lie in a coma like state in the ventilator machine, all we could hold onto was the increased number of blips as she listened to our voices. We were told that every blip over 15 was a breath she'd taken of her own volition. When Mom talked she went up to 50, and when Dad, who was able to visit less often, spoke, she went up to 80! We believed she could hear us, that she was relating to us and most important that she wanted to live.
We lived at the PICU for 2 1/2 months. One of us was constantly with her. Whenever she slept we combed websites trying to figure out what was available to help her. Knowing the amazing pliability of the brain we wanted to attack her problems on every front.
What were her problems?
- Veryerratic EEG and devastating MRI tests
- Very tight arms constantly moving in circles with closed fists
- Tight spastic legs
- Not gaining enough weight
- Too deep and narrow a hard palate
- Recessed chin
- Inability to swallow
- Inability to hold up the head
- An unusual diamond head shape
- Respiratory weakness
- Cortical blindness
- Possible deafness
Our Plan
We knew the first thing we had to do was improve her breathing and her nutrition. (www.Mercola.com).
The hospital largely took care of her respiratory issues while Mom pumped for awhile and then ended up tinkering with Sara's formula. She added cooked egg yolk and safflower oil, both excellent brain foods, to the mix, once again, against the advice from the hospital nutritionist. The brain is 80% fat so we gave her a diet unusually high in fat content. We also massaged her spine every night with grape seed oil, high in anti-oxidants. The oil is absorbed through the skin and aids in forming the Milan sheathes that protect the nerves.
Next we looked for therapies that could make changes within her brain. We learned about hyperbaric oxygen (link to www.hbot4u.com) and how it can pass through the blood brain barrier. Apparently, it reduces swelling and inflammation and restores cells that would normally be lost. Cerebral Palsy (CP), is the result of a one time injury. It is not a continuing degenerative disease, however, it's unfolding manifestation does continue to worsen over time. It seemed obvious to us, that it was the ongoing death of the brain cells stuck in edema that caused the worsening symptoms. We understood that the injury could not be reversed but we didn't want to lose even more cells to edema. We resolved to get Sara Ann into hyperbaric oxygen therapy as soon as possible to recover those cells.
Our third step was to train the new surviving cells in the patterns that the lost cells could no longer perform. We found out about Sarge Goodchild in Massachusetts and the exercises that had helped him recover from CP. He is literally a model hero for Sara to follow. We took Sara Ann to see him at Active Healing (link to www.activehealing.org) and set up a program for her that we could practice at home.
Fourth, to address her problems with, head, neck, jaw, and swallowing, we began rigorous visits to a pediatric chiropractor and cranial sacral therapist (link to www.icpa4kids.org). Their adjustments to the spine, neck, cranium and hard palate, made a significant difference in her recovering and maintaining a normal head shape. They decreased her arching by half or more, improved her eyesight, babbling of sounds, use of hands, ability to hold up the head, improved her swallow, and shape of her hard palate.
This has been followed by productive work with a swallowing specialist, speech therapist, and a NDT physical therapy specialist.
We discovered the Transfer Factor which is derived from bovine colostrum and builds the immune system. Her lengthy 2 week hospital stays have so far been shortened to only a day or none at all since she has been taking it.
We began a new technology called Vapotherm (www.vtherm.com) which has been a real Godsend as it has the ability of calming down inflammation in her lungs when she aspirates. It also is keeping her out of the hospital. It works by spraying warm moist air into her sinuses via a nasal canula.
Sara Ann's Accomplishments
At 24 months old she is:
- She is thriving at a whopping 29 pounds
- Her head size is normal and she is in the 50% for overall growt
- She hears quite well
- Sees shapes and colors
- She swallows frequently but not yet consistently
- She can roll from tummy to back but not yet back to tummy
- She swats at her toys and occasionally grabs them
- She can crawl with lots of assistance
- She's beginning to be able to raise her head
- Occasionally makes 2 word sentences
- She also laughs out loud for Patty Cake
- Waves bye-bye
- And smiles at the camera when we say "cheese"!
What's Needed Next
We've been advised that Sara Ann needs to have a total of over 5 or 6 hundred hyperbaric oxygen (HBOT) treatments within the first 15 years of her life. The first 200 HBOT treatments need to be completed by age 3. As of June 15, she has received 92 so far. The changes in her body from the treatments are indisputable.
At 2 months old her legs were so tight you could hardly get a diaper on. Now her legs are free and pliable and she amazingly does not need braces. Because she can kick each leg independently her therapists believe she will walk.
During her last group of treatments you could actually watch her tightly circling arms relax and stretch out, while her closed fisted hands opened. Now her fingers are soft and she needs no splints. This is highly unusual for a child with her severe diagnosis.
The head of the Children's Hospital of Philadelphia's CP Department, upon examining Sara's tone at 17 months old, said she did not believe that Sara Ann was that spastic but more floppy! And now her developmental pediatrician has changed her diagnosis from spastic quad to extra-pyramidal dyskenisa which she translated as "smart kid with a movement disorder!!!" What an amazing transformation from that locked little body at birth.
Expense of Treatments
Presently the cost of a single treatment plus room and board is about $200. We have to travel 2 hours each way to Columbia, PA which is near Lancaster, PA to receive the treatments. This is because the FDA has not yet approved HBOT for CP yet so we cannot use any of the hospitals with hyperbaric units near us. Presently we are going Monday through Wednesday every week through the summer (2006).
The hyperbaric treatments must be supported by the other therapies to be most effective such as: patterning and swallowing/speech therapist. None of these "must have" treatments are covered by insurance. So obviously, for her to make real headway and have a life, we've got to raise thousands of dollars!
In 2006 we wish to raise $30,000, which is $10,000 more than last year. We want to raise the extra money to add two new therapies: a visit to Oklahaven Chiropractic Center in Oklahoma City for an intensive dose of specialized chiropractic. We'd also like to try Advanced Biomechanical Rehabilitation located in Canada which is one of the most effective treatments I've heard of yet for re-educating the body mind connection.
A Race Against Time
The first 6 years are the most crucial. The faster she gets her HBOT treatments the more cells from the edema around her brain injury will be recovered. And the more patterning we are able to do, the more reprogrammed her brain will become to enable her to recover the ability to use her limbs normally. The first six years are the formative ones.
Sara has shown enormous will to live and drive to excel. Her therapists say she is remarkably strong, positive and motivated and that it is her basic nature. Everyone believes she has tremendous potential.
How to Help
We are looking specifically this year for 1000 new friends for Sara Ann each donating $30 to help us reach our goal of $30,000. We raised a little over $20,000 last year which was spent entirely on all the therapies that helped Sara Ann make such great progress her first 2 years. We are officially beginning our 2nd Annual Fund Raising Campaign. Would you like to be one of Sara's 1000 friends?
Go to How to Help Page to learn more.
Note to other parents with a technology dependent child
We want to give you hope. There are many therapies out there that can make a huge difference. If you want your child as much as we did ours, don't give up too soon. It will be a rough journey but with the right attitude, lots of prayer, a support team of friends and medical folks and most important following your own gut with determination, you can make it.
We found that from the start the doctors were not encouraging and they held little, if any, hope for Sara Ann. So far it's been a long and very trying road. As of this writing she is 24 months old and has already had 29 lengthy hospital stays. But it's also been a rewarding road and we, oddly enough, find ourselves to be quite a happy family. Go to Friends of Sara.
Thank you from our hearts
To the many Friends of Sara, we are forever grateful, indebted and to you we dedicate this website. You have been our angels...Sara's angels. We hope that we too will be someone's angel, with a hug or some help or maybe pointing the way.
Melissa Perry and Hugh Kronrot
(Sara Ann's Mom and Dad)
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