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Allie’s Story
http://www.caringbridge.org/visit/alliemay
 Allie
was born healthy in May 2005. She was developing well and free from
illness until August 23, 2005. She developed a fever that would not
resolve with medication or cool baths. She also experienced vomiting
and looked very fatigued. Trips to the pediatrician and the emergency
room resulted in a diagnosis of a “virus” with recommendations of
continued Tylenol or Motrin. By late the next day, Allie started to have
seizures. We went to the emergency room and were med flighted to
Boston. Allie was in the PICU at New England Medical Center for two
weeks while medications were given to attempt to control her seizures.
As the seizures subsided, Allie gradually came out of her coma and was
transferred to the pediatric unit for another 10 days. It was then that
the diagnosis of Eastern Equine Encephalitis (EEE) was made. We had
never even seen a mosquito bite on her.
Allie was then transferred to Spaulding rehab for the next month and a
half. We never left her side as she screamed uncontrollably every
waking moment, which lasted for several weeks. This was due to the
damage to her autonomic nervous system. She could no longer suck on a
bottle, as that reflex was lost. She was tube fed for her nutrition and
hydration. She was also diagnosed with cortical vision impairment and
was considered legally blind. Allie was given the seizure medication,
Phenobarbitol. We brought her home on November 4, 2005 and administered
her tube feedings and medications, worked on her sensory issues and
started various therapies such as physical, occupational, vision and
speech language pathology for her swallowing problems. We even used
Reiki and holistic medicine in addition to Western medicine practices.
As Allie was seizure free since her time in the PICU, by February 2006,
we weaned her off of Phenobarbitol. This was a horrible two months of
screaming, much like that of a drug addicted baby. But we are now happy
to report that Allie remains seizure free and we hope that continues.
We and the speech/swallow therapist worked with Allie consistently on
feeding. She gradually ate more and more baby food and then could take
thickened fluids. By August 2006, Allie had her feeding tube removed
and has sustained great nutrition and hydration since then. Currently,
her favorite meal is a peanut butter and jelly sandwich with chocolate
milk!
Allie’s vision tests also gradually improved. Although it is difficult
to assess truly how much she sees and she is considered “legally blind”,
we know she is not blind. We continue to see progress in this area.
Allie did not smile for a year after EEE. We did receive our first
smile in August 2006. Since
then, the smiles are few, but precious. We are seeing more and more
expressions with time.
The issue that most effects Allie is her motor development. She does
not walk, crawl, talk, sit independently, feed herself and rarely
reaches for objects. Her body will not always seem to let her do what
she wants. The mind/ muscle connection is impaired.
A complication of this impairment and Allie’s inability to walk has been
the subluxation (partial dislocation) of her right hip. Allie has
braces for her hip, as well as for her feet and back due to her abnormal
muscle tone as a result of EEE. Allie required hip surgery November 13,
2007. This cost us $13,700 out of pocket, since our insurance is not
accepted by the specialist who did her surgery. But this was a
necessary procedure to allow Allie to continue with her therapies and
eventually learn to crawl, walk and sit independently. Luckily and
happily, after a battle with the insurance company, we did get
compensated for this surgery. But unfortunately, Allie’s left hip is
slightly subluxed and we are trying to prevent the future need for
surgery. Also, her spine has started to curve (scoliosis), which we are
hoping to prevent with the use of bracing.
We have learned of a therapy called Conductive Education (CE), which
originated in Hungary. CE is widely accepted and funded in Europe.
Unfortunately, this is rarely practiced and funded in the U.S. and
private programs are rare and very expensive. Conductive Education uses
routine and repetition of purposeful body movements as a learning tool.
It is education for all aspects of development encompassing physical,
occupation, speech and vision therapies in a group learning
environment. Allie’s age group would participate in CE at least 3 hours
per day, five days per week. The statistics are incredible for success
in walking, language, toileting and many more skills. Allie is an ideal
candidate for this therapy. We were fortunate to have an instructor
from England come to our area for a month last summer and will be here
again this summer. Allie and a few other children took the class. In
one month we saw improvement in assisted walking, sitting up, crawling,
rolling and Allie even successfully used the potty! We hope to do more
with Conductive Education in the future to continue to build these life
enhancing skills. Unfortunately, this is another thing that insurance
does not cover. We also want Allie to have the opportunity to do a
variety of therapies and treatments such as Conductive Education, HIPPO
therapy (horseback riding to improve hip and trunk control), art and
music classes and more. We have even considered and are actively
pursuing stem cell treatments in China.
Allie has the benefit of her young age for hopes of continued
development. It is now that we need to move forward with as many
therapies as possible to help her. It is through financial help and
allowing us, as her parents, the time to help her with her therapies,
that we can achieve results.
Sincerely,
Tait and Tina
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