December 21, 2006
The Christmas music can be downloaded here:
To hear more tunes from the talented Jan Pulsford, click here:
or click here:
To hear more beautiful music by Charles Green, click here:
Thank you to all of Taegan's angels here on earth, and happy holidays...
December 18, 2006
I re-read them tonight because I needed that 'boost' again... Taegan's spasticity has become worse over the last 2 weeks, possibly due to her having the flu. When she stands, she is completely up on her tip toes on her left foot. It has become difficult yet again to even get her brace to go on her foot. She hasn't been able to wear her night splint for longer than 2-3 hours at a time these past 2 weeks as well. Serial casting is likely to happen in February, perhaps sooner if her spasticity keeps worsening. I'm so anxious to get her the HBO treatments, so maybe we can avoid the whole issue of CASTING altogether!!!
Many of these testimonials below mention how HBO took away their childs' spasticity. Also, they talk of how their children became verbal and began speaking in sentences etc. Just the thought of Taegan being able to talk to me brings tears to my eyes... If I had a Christmas wish, it would be for Taegan to receive the HBO treatments... and all the other things would fall into place... I just know it!
Testimonals taken from this web site: http://miraclemountain.homestead.com/HBOTforCP.html
I had to post this tonight. Today Michael and I were at his private OT appointment. I had previously spoken with his OT about the possiblity of us doing HBO and she informed me that the kid that she sees ahead of
Michael was currently in Canada receiving treatments. Well, today was Katie's first day back after 120 treatments. All I can say is that HBO is truly a
miracle. This little girl is 5 years old. Previous to HBO, she did not walk, talk, communicate or really do much of anything else. As her mother expressed to me today, she was pretty much in a vegetative state. She was full-term, suffered a stroke inutero, has pretty severe CP. Well, she is now walking, talking, running, playing, you name it. I could not believe it! I was so very glad to see this with my own eyes! And, her mom attributes all of this to HBO. How is that for a success story!
I am a pediatrician who has a four year old daughter with severe cerebral palsy. She has been receiving physical and occupational therapy from the age of 6 months. At the age of 3 she could not sit up unsupported. She was able to say about 35 words with difficulty. She screamed whan she was hungry and would say "miek" when she was thirsty. A distant relative had suffered a stroke which left him completely blind. He was able to regain some vision after hyperbaric oxygen therapy. He called me to tell me that he saw children like mine at the center and encouraged me to take my daughter there. I procrastinated because I wanted to see if there was any data that showed HBOT would work. I then finally enrolled my daughter in a study. Within the first week of HBOT
treatments my daughter was able to say "Boos Coos" pertaining to "Blues Clues" a children tv show and incredibly she did for 45 minutes. For me that was a small miracle. She had never focused enough before to watch a tv program. With the completion of 80 treatments, she speaks well over 1000 words and can say 4-5 word sentences. She can indicate her needs and is completely toilet trained. Currently she continues to make improvments daily. I have noticed that when she is receiving treatments she appears to be more and more focused and is able to learn much more. I personally believe that HBOT has made a huge difference in the quality of her life and ours. I believe in it so much that
I wanted to make this treatment available to other children and families. My new facility Hudson Valley Hyperbarics in Brewster, NY has the capability to treat all kinds of CP cases and medical conditions. Please feel free to contact me via email PINAMD@aol.com to discuss any of your childrens or families conditions.
Jo Feingold, M.D.
Medical Director Hudson Valley Hyperbarics
My name is Kim, my daughter is Gabriella, (www.gabbyrose.org). Gabby is 5 yrs old and was injured by the Hep B vaccine she recieved at one day old. She was diagnoised with static encephalopathy, global developmental delay, cerebral plasy, PDD, leaky gut, ect, ect, ect. She has had over 120 HBOT. This
wonderful therapy is like a miracle for her. She is now able to drink thru a
straw, eye contact improved, gross motor and fine motor skills improved, she can get into a standing position by herself, her balance has improved greatly, she can walk unassisted in the grass and other surfaces, she is climbing on the
furniture and the kitchen table! She is starting to perspire like a normal
child, she initiated and said new words, she is making more sounds and is trying to sing, dance and jump. I was wondering if there is a way that you know of to share information about this fantastic treatment. There are soooo many children and adults who can benefit from it. Has anyone written editorials for the newspaper or found another way to really get the word out about this treatment. It seems it is usually the last thing people try and sometimes parents are so involved with just managing their children and their circumstances that they don't have the time to research this option. If we could really 'go public' (major newspaper, TV, radio) with this, it would make it more available to people and the more people ask for HBOT, perhaps this will push insurance companies to cover the 'off label' diagnoises that can so benefit from HBOT.
We just returned home from a doctors appt. We have been seeing the
opthamalogist before and after each 40 sessions of HBO. This is Patrick's 3rd
set of 40 to complete. Here are his documented results:
1st 40: Cortical blindness upgrade to high use of peripheral vision amd
severe cortical impairments in all central fields of vision
2nd 40: Went from strictly liquid diet to 3 meals aday. Gained 15lbs. grew
8'' in 1 10mths following. End of all gastric issues, removal of GI tube, and
3rd set: Eye doctor said "Patrick no longer need to wear his glasses, 60%
improvement since Dec.2000 in farsightedness, normal focusing, responses all
normal in all tests!!!!!!!
Currently we are fundraising to finance the next set of 40 treatments. HBO
has been nothing short of a miracle for Patrick! I hope to hear from others
about their experiences. Jacki mom to Sean 11, Kathleen 8, and Patrick 4 our
vaccine injured angel.
We have done nearly 100 treatments. We did a set of 40, doing two a day for
20 days with one two-day break in there. We saw amazing results. Bethany was
8 at the time. She had just had a shunt blockage, a very bad one and was not
walking, talking, anything. After the forty treatments, she was walking again, better than ever and had begun talking in sentences (before she had only one or two word sentences). We saw incredible results with her sensitivities- she was able to stand a lot more noise, confusion, etc. without a meltdown. A few months later we did 20 more sessions, two a day for 10 days straight. This time, we saw more lessening of the sensory problems. She went from a child who could not stand to have her hands touched, to a little girl who wanted her nails painted! We later did 10 sessions, and saw no gains- I would not recommend doing only 10 at a time. We did 20 more later and saw more decrease in spasticity and more cognitive gains. Before we ever started treatments, I checked with our pediatrician about possible side effects. He assured me that HBOT is 100% safe- he also is a non believer in it, but can't deny the benefits we have seen from it!
********, mom to ********,10, spastic diplegia, hydrocephalus, CVI, optic
nerve atrophy, seizures and autism and *******, 12, nda from Alberta Canada
My daughter is 16 months old and I have recently finished 40 HBO
treatments. She had increased tone in her legs and low tone in her trunk.
Now, the PT has stated Anna Kate has lost the tone in her legs. She is now
sitting unassisted, will transfer from sitting to crawling and return to a sitting position. She is pulling up and can ambulate slowly behing a push toy ,however, balance is still a problem in standing upright position. She
now plays with toys without releasing them, is much more curious, claps
hands, motions bye,bye. Before HBO, she had to be propped in sitting position, could not hold toys without releasing them and she appeared sleepy and tired much of the time. I am amazed at the results we have seen.
We are taking a break presently but will return in about a month for more
December 2, 2006
Taegan was sick twice during the month of November.... both times with colds. Thankfully, her regressions haven't been as significant as they have been during past illnesses.
She is scheduled for a sleep study at the children's hospital on December 19th. The previous two appointments were canceled, once due to the lab over booking patients, and the most recent cancelation due to Taegan's illness.
Taegan is still adjusting to the night splint... it makes her leg/foot very hot and sweaty (and probably makes it uncomfortable), but this week she has been able to keep it on all night long for the past 3 days.
Sleeping has been especially challenging for Taegan for the past 6 weeks. I'm not sure what is causing this disturbance in her normal sleep pattern (usually she will sleep for 4-5 hour stretches and then awakens.) In recent weeks, she sleeps 2-4 hours and is up for 3+ hours before falling back to sleep. She has been quite grouchy and appears sleepy much of the time, and yet will not fall asleep! She's gotten some relief while taking Dallergy to help with congestion, as it makes her drowsy. She has been able to sleep 5-6 hours while taking that medication.
Last week, I took Taegan for an appointment with a physiatrist. A physiatrist is a medical doctor who specializes in the area of physical medicine and rehabilitation. It was a very informative meeting for me.
The physiatrist has recommended we meet with a neuropsychologist as well. They will be calling me to schedule the appointment for the beginning of the year.
The physiatrist has asked that I track down all of Taegan's blood work records from the NICU to present day. She is concerned that Taegan may have a genetic syndrome that is linked with a flat nose bridge and difficulty with bowel habits. This isn't the first time a 'genetic syndrome' possibility has been discussed. Taegan's GI specialist sent her for chromosomal testing in 2005. Those tests came back negative. I am not sure what the test was called that they gave her, so I especially need to track that one down so it is not repeated ($$$$!!!!)
The physiatrist also mentioned the possibility of serial casting in a few months, if the night splint and her day time braces do not help to improve the flexibility of her left foot/ankle. Also, she is concerned with Taegan's hips... her legs appear to be internally rotating (giving the appearance of pigeon toed walking etc.) She mentioned a device that goes on like a belt and has several straps that would go down and around Taegan's legs that would pull her legs out of the inversion and align the head of the femur bone into the hip sockets better. Before this device might be ordered, the physiatrist has asked that we have Taegan's hips X-rayed again to rule out dysplasia and some other abnormalities. Taegan's X-rays when she was 13 months old showed no signs of dysplasia at that time. She said that it was important to have hip X-rays done every 6 months until Taegan's 5th birthday.
The physiatrist has also ordered a PH probe be placed down Taegan's throat during the duration of her sleep study on December 19th. This is to determine whether she is still suffering from reflux, as this could be a possibility for her sleeplessness and irregular sleep patterns. Also, she has ordered a EEG be performed during the sleep study as well. This will show whether Taegan is having seizures during sleep, which also could be disrupting her sleep cycle/pattern.
It was reassuring to hear the physiatrist speak of how other parents of CP children complain about sleep issues. Apparently, the CP brain has difficulty transitioning from one activity to another and also isn't able to recognize the cues for upcoming transitions. She explained we have to train the brain. We are to create a schedule. For example, before Taegan's bedtime, we should do the same activities every night in the same order. So, we will have a bath, brush teeth, read a book and go to bed. This is to be the same pattern every time, so that her brain is trained or 'cued' when to begin to calm down and prepare for sleep.
The physiatrist mentioned that many CP children require medication for sleep, as their brains simply cannot fall into this pattern to settle down enough to sleep. I had been trying melatonin with Taegan since the summer time, and it seemed to have little effect. The physiatrist mentioned that I probably wasn't giving her a high enough dosage, as CP brains require a much higher dosage to be effective.
The increased dosage has seemed to help, but it doesn't keep her asleep. It just helps her to fall asleep. At least with the melatonin, she doesn't lay in her bed for 2+ hours babbling and squirming around as she had been.
We are also supposed to be making an appointment with a new neurologist so that he/she might be able to explain the MRI results to us better as well as look into the concern of absent mal seizures (petit mal seizures.)
Taegan continues to do well in her therapies. This week she finishes up her fall session of hippotherapy down at PALS in Bloomington. She will begin sessions again in the spring. She will continue her hippotherapy in Carmel at TherAplay throughout the winter, as it is a heated, indoor facility. She absolutely loves the horses. It brings me great joy to see her smiling and clapping while riding the horses. She is very vocal afterwards as well. I think there is magnificent healing that occurs between animals and humans... I'd love to one day take Taegan for dolphin assisted therapy. (It actually has always been a dream of mine, to become a dolphin assisted therapy therapist!)
The nutritionist/dietitian will be re-evaluating Taegan on the 14th due to weight loss and difficulty with eating over the last 2+ months. Taegan refuses foods she previously has devoured (i.e. spaghetti, macaroni & cheese, peaches, pears, carrots.) Her diet mainly consists of oatmeal, Nutra Grain Cereal bars, green beans, mashed potatoes and Teddy Grahams. On any given day, she may refuse even these foods! She prefers a liquid diet, so I've been increasing her Pediasure supplement daily.
Taegan has noticeably become more frustrated with her inability to communicate effectively. The speech therapist has commented on this as well. We've tried sign language and augmentatives (pictures) and so far haven't had much success. We're discussing the possibility of button switches, where she can press a button and a pre-recorded message (by whomever, mommy, daddy, grandma etc.) will talk for her. I'm hoping this will help with Taegan's feeding issues. Hopefully it will allow her to communicate a choice of what she wishes to eat at meal time. Simple pointing between two choices of food has not worked. It just breaks my heart when she becomes so frustrated.
I hope we can get her to the Cole Center For Healing in early 2007... perhaps many of these issues will be resolved as a result. We can only hope....
November 6, 2006
Great news! Taegan's night splint for her left foot is finally finished! Finding pajamas with an enclosed foot that would fit over the splint proved to be futile, so we're going to try putting a large sock over the splint, in the hopes that she will be unable to remove the splint at night.
She is to wear it every night to bed. It is supposed to help prevent muscle contracture of her left foot/ankle. If a contracture were to occur, there is nothing that you can do to correct it. Her foot would be 'stuck,' or contracted in one position forever if that were to happen.
The orthotist said her foot had lost range since the last time in the office (approximately one month ago), so it appears we got the splint just in time!
Wish us luck with Taegan being able to tolerate it and leaving it on all night long! She is such a restless sleeper, I imagine it might be a challenge until she gets used to it.
In other news, Taegan's pediatrician is scheduling a sleep study for Taegan sometime soon (we're waiting on a phone call to tell us when/where etc.) As most of you know, Taegan had apnea shortly after her birth, and had to wear an apnea monitor until 12 months of age. We had thought that was mostly due to her issues with reflux, but it seems that it might be unrelated at this point. Many times during Taegan's times of sleep, I will hear her gasping for breath over the baby monitor. So, I'll sleep easier once that is resolved.
Taegan's new AFO's are working out well for her too! She hasn't even attempted to take them off yet! Amazing!! I'll take some pictures with her wearing them and post them soon.
Much love to all of Taegan's earth angels......
November 1, 2006
Taegan has been receiving craniosacral therapy treatments once weekly from Certified CranioSacral Therapist Mary L. VanNoy of Essence In Harmony, part of Sacred Space Healing Center in Greenwood, IN. Mary lovingly assists Taegan on her journey toward living free of dis-ease and releasing restrictions in the craniosacral system. Taegan just loves Mary and showers her with hugs and kisses!!!
I'm a firm believer in CranioSacral therapy... as a practitioner myself, I've seen many people go on to live pain-free lives after regular CST treatments.
If any of you are interested in this wonderful, non-invasive therapy, I highly recommend you seek a treatment from Mary. She can be reached via phone at 317-727-6420 or by email at firstname.lastname@example.org . Her office is located at: Sacred Space Healing Center
2801 Fairview Place
Below is a brief description of CranioSacral Therapy as well as some of the conditions it is used to treat.
CST was pioneered and developed by osteopathic physician John E. Upledger following extensive scientific studies from 1975 to 1983 at Michigan State University, where he served as a clinical researcher and Professor of Biomechanics.
CST is a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.
Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the functioning of the central nervous system.
By complementing the body's natural healing processes, CST is increasingly used as a preventive health measure for its ability to bolster resistance to disease, and is effective for a wide range of medical problems associated with pain and dysfunction, including:
Chronic Neck and Back Pain
Central Nervous System Disorders
Traumatic Brain and Spinal Cord Injuries
Stress and Tension-Related Problems
Fibromyalgia and other Connective-Tissue Disorders
Temporomandibular Joint Syndrome (TMJ)
Neurovascular or Immune Disorders
Post-Traumatic Stress Disorder
October 27, 2006
Arlington Elementary PTO
Arlington Elementary Staff
Alan & Natalie Armstrong
Scott & Lori Armstrong
Don & Carol Augsburger
Jeff & Cara Ball
Barry & Tammy Bentman
Chad & Julie Bertel
Anton & Dawn Blender
Blue Haven Pools & Spas
Richard & Susan Colclesser
Paul & Clara Crosby
Mitch & MaryLu Davis
William & Linda Dreibelbis
Eagles Club of Fairfield, OH (Men's)
Eagles Club of Fairfield, OH (Women's)
Mary Ann Ernstes
Tammie Lee Hall
Katy Johnson & Chick-fil-A (Greenwood)
Don & Laurie Leone
Mary Ann Mack
Pat & Sandy McFarland
Jerry & Kim Midkiff
Terry & Julie Morris
Tom & Debra Partridge
Mark & Darlene Schofield
Mark & Carla Thill
Great Grandma & Grandpa Thorpe
University Heights Health and Living Center
Eric & Trish Visa
David & Eleanor Windisch
Mary Kay Woolsey
Kim & Jeff Wright
Yard Signs Inc. (Owner: Tracey) 736-SIGN
October 14, 2006
Many thanks to Cara and Jeff Ball for donating items for the raffle. They have been instrumental in raising awareness for Taegan's cause throughout their community in Ohio. The Cole Center for Healing is located a few miles from their house! They have graciously opened their home to Taegan and I when the time comes for Taegan to be treated there. :-)
By CANDACE BEATY Staff writer Oct. 9 ,2006
When 2-year-old Taegan McFarland crawls into the treatment chamber in her Greenwood home, it's called a tent. For her mom, Michelle McFarland, it's a machine that could help her little girl lead a more normal life.
Hyperbaric oxygen treatments are often used by athletes to speed recovery from injuries and by people with diabetes. Taegan uses it to treat her cerebral palsy.
The machine increases the barometric pressure inside the chamber, which allows a higher level of oxygen than the air we breathe to be pumped in.
The portable machine reaches a 37 percent level of oxygen, encouraging blood flow, McFarland said. Regular air contains 21 percent oxygen.
The treatment allows more oxygen to reach more areas of the body, she said. The increase in oxygen allows dormant cells in Taegan's brain to became active.
After 11 one-hour sessions in the machine, McFarland said she could see considerable improvements in Taegan, who is 12 months to 15 months behind her peers developmentally.
Taegan may squirm a little as she crawls into her tent, but once inside she enjoys looking at her picture books, McFarland said.
The chamber is just large enough for McFarland to accompany her daughter to make sure she is OK. McFarland lies on her stomach while Taegan sits up at one end.
Taegan's type of cerebral palsy causes her to have stiff muscles in her legs. She wears leg braces to help get her feet flat on the ground, because the stiffness causes her feet to point straight down.
Her type of cerebral palsy also is linked with periventricular leukomalacia, which causes swelling in parts of her brain.
Taegan undergoes various physical therapy treatments weekly. Her mother said Taegan has faced developmental problems since complications led to her birth two months early.
When Taegan's doctors said she had cerebral palsy in August, McFarland started researching online for different treatment options. That's when she found information about the treatment, which she said many of Taegan's doctors knew little about.
Before Taegan started using the treatment, she would only take a few steps. Now, she walks across the living room, McFarland said. Taegan also started trying to talk more.
Her physical therapist, Joanna McGill, has noticed changes, too.
Taegan gained movement in her left ankle, her biggest problem area, McGill said. Before the treatments, Taegan would scream and cry when doing stretches on her legs. Now, Taegan has become more comfortable with the stretches and can put both heels on the ground, McGill said.
Despite the treatment's apparent success, McFarland said insurance companies don't cover the process. Hospitals also don't use it the treat cerebral palsy.
Since McFarland couldn't afford the treatments, she started saving money and looking into fund-raisers. A complete treatment of 40 one-hour sessions will cost at least $4,000, she said.
"You're just willing to try anything you can to help your child be the best they can be," she said.
Before she could raise enough money to fund the treatments, a friend's acquaintance heard about her plight and lent a portable machine for Taegan to use.
"It was divine intervention from God that brought it to me," McFarland said.
A friend knew someone in Ohio who bought a chamber for his wife to treat her diabetes. The friend asked if the McFarlands could come to his house and use the chamber.
Instead, the man allowed the McFarlands to keep it for three weeks.
The treatment can be done with portable chambers or at some hospitals. The hospitals' chambers are larger and fill with 100 percent oxygen, compared to the portable chamber's 37 percent.
The McFarlands returned the chamber to its owner Saturday. Now, McFarland is looking for ways to continue the treatments.
Taegan used the chamber 11 times, less than half the length of a usual treatment.
McFarland started a couple of Web sites hoping to find someone to help pay for the medical bills.
Michelle and her husband Shawn McFarland have struggled financially since she was put on bed rest during pregnancy and had to quit working. With medical bills that insurance wouldn't cover piling up, Shawn works two jobs to make ends meet.
While various treatments have helped Taegan, it's too early to tell what development problems she may face, Michelle McFarland said. She may face vision and hearing problems, continuing developmental delay or seizures.
McFarland hopes she can continue the treatment for Taegan while she is young. Since her body is still developing, treatments before the age of 5 will be the most effective, she said.
"I have high hopes that this will help her so it lessens her physical limitations," she said.
AT A GLANCE
What is hyperbaric oxygen treatment?
The treatment consists of placing the patient in an enclosed chamber with increased atmospheric pressure and a higher oxygen level. The portable treatment chamber Taegan used raises the oxygen level to 37 percent. Chambers at hospitals or treatment centers are filled with pure oxygen.
The increased oxygen allows areas of the body that don't usually get a lot of oxygen more access to it. The increased oxygen helps decrease swelling, encourage blood flow and promote new blood vessel growth.
Who uses it?
At hospitals, the treatment is used to treat carbon monoxide poisoning, exceptional blood loss, cyanide poisoning, burns and some other conditions.
Elsewhere, the treatment is used to treat a wide range of conditions, including cerebral palsy, strokes, multiple sclerosis, heart attacks, fatigue, attention deficit disorder, autism, cancer and sports injuries.
For cerebral palsy patients, the oxygen helps decrease swelling in the brain and helps more blood reach it.
SOURCES: Michelle McFarland and The Cole Center for Healing
My mother, Taegan and I drove out to Bluffton (50 miles south of Toledo) and picked up the chamber with the intention of having Taegan receive 40 one hour sessions. It didn't quite work out that way, unfortunately.
After 9 treatments, I came down with a nasty upper respiratory illness and was unable to accompany Taegan into the chamber. I tried to, thinking it was just allergies, and unfortunately, blew out both my ear drums in the process.
Shawn tried, but was too tall for the chamber. Mom couldn't do it because of a sinus infection. My friend tried and Taegan wouldn't cooperate on that occasion. Shortly after that failed attempt, my friend came down with a cold as well. One of my mother's friends was able to accompany Taegan into the chamber for 2 additional treatments. Once I was on the mend, Taegan came down with a cold!!! It just seemed like a lost cause for a while! Taegan was able to receive 11 total treatments before we had to return the chamber to it's owner.
We have seen remarkable changes in Taegan after only 11 treatments in the soft shell chamber! Her high muscle tone in her left leg has decreased some, enough for her to stand flat footed occasionally. She has shown increased initiative to stand on her own and attempt steps independently! Her speech has improved dramatically as well! She babbles constantly now, and we've even heard a few 3 word sentences come from out of nowhere! Of course, we've never heard them repeated, but we did hear them!! One that she has said in the presence of one of her therapists was "I did it!" It almost brought tears to my eyes to hear her speaking like a 2 year old should.
What this experience has provided us with is HOPE. Witnessing these changes in our daughter after only 11 treatments in a SOFT SHELL chamber (which has 32% oxygen as compared to HARD SHELL chambers in a clinic, that offer 100% oxygen), we cannot wait to see the changes that will occur with Taegan after 40 treatments in a hard shell chamber!! I am so thrilled to have found the Cole Center for Healing in Cincinnati. They offer 40 treatments in a hard shell chamber for $4,400. That is so much more attainable than $10,000!!!
We tried to apply for a loan last week for that amount, but were denied. That was not a big surprise. These last 2 1/2 years without me working have taken a toll on us financially. But, I have faith that things will all work out as they should... all in divine timing.
I'd like to publicly thank Donald and Carol Augsburger of Bluffton, OH for their kindness and generosity. They donated the use of their soft shell hyperbaric oxygen chamber to Taegan for 3 1/2 weeks. Thank you for being one of Taegan's Earth Angels, and for providing us with renewed faith in the kindness of strangers. Thank you for allowing us to experience the joy of renewed hope - - that Taegan will eventually be able to live a full life, having the complete use of her legs!
October 6, 2006
We found a hyperbaric oxygen therapy clinic in Cincinnati, Ohio that just recently opened. The best part about this clinic is that the prices are extremely reasonable!!! If you pre-pay for 40 sessions, the cost is only $4,400. I say "ONLY" because in all the research I have done over the past several months, the approximate cost for the same amount of treatments at a clinic or in a hospital is $10,000.
I have been unable to locate a clinic in Indiana. I have heard mention of plans for one to be built in the Carmel area though. As far as obtaining HBO in the hospitals here, they are hard to locate. One of Indy's largest hospitals (St. Francis) pulled their 2 HBO chambers last year. We were told that the HBO chambers were not cost effective for the hospital as a result of the multitude of changes that have recently taken place in the Medicare program.
Another wonderful thing about the Cole Center is that they have an MD on staff who evaluates each patient prior to receiving the HBO treatment, and this MD actually will prescribe the HBO treatment there at the center.
It is somewhat of a daunting task to find a physician who is willing to prescribe HBO for a cerebral palsy diagnosis. At least, in my experience, that has been the case. Taegan's pediatrician however, has been supportive and has always been willing to work with us to find Taegan the most beneficial therapies and specialists.
If anyone is interested in reading more about the clinic, their web sites are:
http://www.colecenter.com/ and http://www.cincinnatihyperbarics.com/
If anyone is interested in reading an informative article about why HBO is not more widely known and accepted by physicians as an intricate part of the healing process for a variety of dysfunction, click here: http://www.drcranton.com/hbo/widelyaccepted.htm
In the meantime, I'm hoping we can raise the $4,400 necessary for the treatments by the beginning of 2007! I'm still in the process of setting up several restaurant fund raisers... We are also organizing an ebay auction. One of the items to be auctioned off will be an original drawing from local artist Adina Francis. Watch this blog site for information on those upcoming events.
Thank you to everyone for your kindness, love, and support.
September 17, 2006
Taegan Sage McFarland was born two months early on 6-3-04, weighing 4lbs. 4oz. via emergency C-section due to a compromised umbilical cord and numerous other contributing factors.
She spent one month in the neonatal intensive care unit on a ventilator, battling pulmonary hypertension, respiratory infection, low blood pressure, patent ductus arteriosus (hole in the heart), poikilothermia (inability to maintain body temperature), apnea, reflux, and jaundice.
Since her birth, Taegan has struggled to conquer developmental milestones, and often lags behind her peers by 12-15 months. She is significantly speech delayed, having approximately five intelligible words, and uses some simple sign language for basic needs. Taegan has limited use of her legs due to increased muscle tone. She wears ankle foot orthotics (AFO's) on her legs to help with her tone issues.
We live in the small town of Greenwood, about 10 minutes south of Indianapolis. Shortly after Taegan's birth, Shawn began working two jobs in an effort to financially support our family and to keep up with the mounting medical bills. Unfortunately, in January, 2006 we lost our home in part because of the overwhelming medical bills that accrued since the latter part of my pregnancy with Taegan, and the subsequent NICU stay after her birth. We learned that despite having decent medical insurance, you can still walk away with a $30,000+ bill! Also, going from two incomes to one drastically changed things, and it simply became too much.
I was strongly advised by the NICU doctors to keep Taegan out of any type of day-care setting for as long as possible, especially up through her second year of life. This was advised because of the increased risk Taegan runs of catching a potential deadly virus (to preemies and respiratory compromised babies) called Respiratory Syncytial Virus (RSV.) Because of this risk, Taegan received monthly RSV shots at the hospital (approximately $4,500 per shot!) Thankfully, she no longer has to receive these shots, as the risk of developing serious complications from the virus goes down as her age increases.
In August, 2006 Taegan was diagnosed with Cerebral Palsy/Periventricular Leukomalacia/Spastic Diplegia. This diagnosis includes a plethora of possible ailments such as visual problems, hearing problems, seizures, learning disabilities, speech difficulties, sensory processing disorders, musculoskeletal issues and endocrinological concerns, to name a few.
Taegan has been receiving conventional therapies (Occupational, Physical, Speech, Nutritional) since the age of six months. While they play an important role in her development, there are also many non-traditional therapies which are yielding promising results. We'd like to pursue those avenues for Taegan, however, insurance companies do not cover non-traditional therapies and those that are not approved by the FDA for specific diagnoses.
Hyperbaric oxygen treatments (HBOT) are one of these non-FDA approved therapies. HBOT is approved by the FDA for use with wound care patients, however, cerebral palsy is not a recognized diagnosis for the treatment. That does not mean that we cannot pursue this avenue of treatment for our daughter. It simply means we will have to fund these treatments out of pocket. A typical cycle (40 one-hour sessions) of HBOT costs approximately $10,000 here in the United States.
Our hope for Taegan, as it is every parents hope, is for her to be able to live the fullest life possible. For her, unfortunately that also means struggling to overcome physical limitations. Limitations which very well could be lessened with HBOT. We're counting on God's magnificent earth angels (YOU!) to help us realize this hope for our daughter. Thank you for taking the time to read about our daughter and our cause.
Sincerely, Shawn, Michelle and Taegan McFarland
Angels 4 Taegan
520 North State Road 135
Suite M - 147
Greenwood, IN 46142
September 13, 2006
Then, in May on Mother's Day weekend, Taegan came down with a bad head cold. It lasted about a week, and during that time, she had a 12+ month regression in her motor skills. No longer could she pull to stand, sit unassisted, tall kneel crawl, stand unassisted OR assisted! Her regression was so alarming in fact, that her pediatrician ordered an MRI be done ASAP through a neurologist. Well, it's interesting how long an "ASAP" order works in the medical world.... The MRI didn't happen until August! And by that time she already had yet ANOTHER regression from another illness.
It took 3 months for Taegan to overcome her first regression and to finally be able to function as she had been previously to catching a cold. One thing that failed to return to 'normal' was the spasticity in her left leg/foot/ankle. Spasticity basically means muscle tightness. The spasticity in her ankle is so tight that it prevents her from standing flat footed. When she tries to stand, her left foot is so tight that she is up on her tip toes, which doesn't make for good balance or functionality. The tone has increased so much so that we cannot even get her brace on that leg anymore. She also has very poor sitting posture, as her back and trunk muscles are not strong enough to allow her to sit up straight. This problem has also become worse since her illness.
Several ideas have been thrown around over recent weeks, one of those being serial casting. Serial casting is where a physician stretches out the muscle (in this case, her ankle) a little at a time, and will cast it in that position for a week at a time. This is done over a period of 4-6 weeks (from my understanding.) Each week, they cut off the cast, and stretch the ankle even further, to a higher degree/angle than it was before. The hope is that they will be able to stretch the muscle enough that it will at least return to zero (neutral... relaxed state) so that it can be functional for her.
Another idea is a night splint that has an adjustable tension hinge on it so that I can increase the stretch gradually. The problem with a splint is coming up with ways that Taegan will not be able to remove it! Also, another concern is her ability to sleep with it on... she has never been a good sleeper. In fact, she is still up 3-4 times per night... very restless sleeper. That is a common complaint among parents of children who have PVL.
Another option is surgery. Heel-cord release will be the last option. This is where they surgically go in and cut the Achilles tendon, which after done, can never be reattached etc. We are trying to do everything we can to avoid this scenario.
In August, the evening of her MRI, Taegan began running a fever. It progressed over the next day and spiked at 103.8. She was lethargic and refused to eat or drink. I worried we'd wind up back in the hospital for dehydration again, but luckily she took popsicles for me the next day. Once she was feeling better and became more active, it was apparent that she'd had another regression in skills. This time, it seemed to affect her motor planning skills more than the previous time. Her movements were very shaky and uncoordinated. She couldn't "remember" how to do simple tasks that she'd been doing for months! It is very disheartening to watch your child struggle in frustration over tasks she used to enjoy and can no longer perform.
What's worse is that we cannot seem to get an explanation for the regressions! Her neurologist's (whom we will not be returning to see) explanation was "Oh, that is just one of those things that happens sometimes." What!? I need to know WHY it's happening and WHAT is causing it to happen. Obviously it is related to illness. My question to him was, "What do I do when she's in school and catches a cold and then all of the sudden she can no longer walk or sit up? Do I have to have a wheel chair for her so that she can attend school when she has these regressions that last several months?" He shrugged that question off with " I don't think she'll have a problem with it once she's older."
It's completely frustrating to not be able to find the answers I seek. It's even more frustrating when you are not supported by your doctors or given anything to go on... no resources, no ideas, no hope!! It always amazes me how easily they can deliver news like "your child probably will not walk..." etc. etc. or the "don't expect too much, that way you will not be as disappointed." I'm currently searching for an open-minded neurologist who's willing to try non-traditional approaches for cerebral palsy.
On Sept. 12, I took Taegan to be fitted for another pair of AFO's (ankle foot orthotics) and while there, I discussed in depth with the orthotist about the possibility of obtaining a night splint. He agreed it would be a good resource to try before casting and surgery. We're checking into what percentage if any, insurance will pay etc. etc.
September 8, 2006
This is Taegan enjoying a recent session of hippotherapy. Below is a description of hippotherapy and what it is geared toward, as far as working on certain skills.
Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada.
Hippotherapy uses activities on the horse that are meaningful to the client. Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client. Specific riding skills are not taught (as in therapeutic riding), but rather a foundation is established to improve neurological function and sensory processing. This foundation can then be generalized to a wide range of daily activities.