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.