28. April 2013 16:51
by Michelle D. Shelley, APA
Mom to Aislinn, suspect Mitochondrial Disease
I am so excited that Miracles for Mito will be my first blog. Once again you have been safe
haven for me to open up and share a sliver of my daughter Aislinn ‘s journey with suspect
mitochondrial disease. Or as we like to call her ”Ice”. She is six and a half years old.
I could share all of the difficult trials and tribulations that come from having a severely disable
child coping with this devil disease, but I won’t because it is not my nature. Instead, I will share
the earth bound angels, who in their own special way, have had a positive impact in Ice’s life.
The first angel you might know. I will call her Dr. E. During the first year of Ice’s life, she was
the first doctor to sit down for nearly three hours to talk, exchange information with, suggest
helpful agencies, explain Medicaid waivers, recommend other specialists, and provide a plan to
improve Ice’s life so as to not dwell on what it would not be. After that notorious appointment,
I knew she would a needed specialist for Ice and had set the bar for other specialists or
You might recognize Dr. S if your travels include GI issues and experienced his saintly deeds.
I will never forget his excitement when we brought an unsolicited #2 specimen to the first
appointment. Ice would need him in finding out why extreme vomiting persisted without relief
when using medication and the insertion of her G-tube. As Ice slide down the negative side
of the Growth Chart, Dr. S brainstormed. In a week long hospital stay, Dr. S. determined Ice’s
pyloric valve released slowly causing a build of food with only one way out…projectile vomiting!
Bye bye G-tube. Hello J-Tube and a long road to gain weight to rest at the 60th percentile!
If your child suffers from seizure or anxiety disorders, Dr. C might be a familiar neurologist.
More than once she has engaged in divine intervention. With many allergies to medication,
Dr. C’s determination found a seizure medicine call Zonegran that worked for Ice until her
osteoporosis kicked in causing an unexplained break to the femur bone. In a recent hospital
stay, it was Dr. C whose divine intervention helped us persuade Kaiser for more tests which
found new seizure activity and migraines to explain extreme irritability episodes.
Two therapists have stood out and have been with Ice for most of her life. Ms. T (physical
therapist) is the angel who helped us recognize a tethered spinal cord and dislocating hips.
Through her experience we were able to see the benefits of spinal surgery, reconstructive foot
surgery, and bilateral hip surgery. Our lucky stars have kept Ms T. with us for most of Ice’s life.
She has given Ice mobility to explore the world. Mrs. M (speech therapist) is the angel who
helped give Ice a voice in the maddening and frustrating world of public education. Over more
than three years, Mrs. M has been a key person in teaching Ice cause and effect. Together
we are searching for the best adaptive equipment so that Ice can share her wants and desires!
The next three angels are nurses in disguise and care for Ice so that Daddy and Mommy can
work or sleep. Nurse J fell into our laps to set the bar for additional or future nurses. She has
been a part of Ice’s life since she was three. Nurse J has a gift to snuff out phenomena and
UTIs as they are attacking the body! She has a calm sense of confidence about her and a
tigress dedication to making sure prescription allergies and compounds are button down tight!
Nurse B was brought to us in a great time of need after a horrific experience with a nurse who
fell short of the bar set by Nurse J. Nurse B’s angelic deed was in sponsoring Ice in a quest
for trust funds to make the purchase of our MV-1 more affordable. Thanks to Nurse B, Ice is
seeing the world! Well at least Colorado for now. Nurse H is a new comer to Team Aislinn and
has already made her mark. Luckily in a previous life Nurse H was a preschool teacher! Ice
does crafts galore and her Home Bound Teachers are catching a much needed fever to improve
her educational experience!
Ice’s big sister Alexis has to be the most special angel. In the darkest days, it is Alexis who
can calm or bring a smile or a laugh from the depths our souls. Alexis is a gift in all of the
uncertainty and chaos.
So look around in your world. There are angels in many places. I shared the angels in Ice’s
life. I firmly believe she talks to angels…