MCKAYLA'S MIRACLE !

<BR><BGSOUND src="http://www.mps.ualberta.ca/stollery/radiothon/hope.mp3"><BR>
McKayla's Hope song!Radiothon 2004

McKayla was diagnosed at 5 days old, McKayla had a Urea cycle disorder called Citrullinemia it is a genetic disorder caused by a deficiency of one of the enzymes in the Urea cycle,which is responsible for removing ammonia from the blood stream.The treatment of urea cycle disorders consists of balancing dietary protein intake in order that the body recieve the essential amino acids responsible for all growth and development,but not so much protein that excessive ammonia is formed.The protein restriction is used in conjunction with medication.It also includes special amino acid formula's.Since McKayla has had her transplant she has improved in every area of her life this was our HOPE.She got to eat meat,chicken,dairy,whole grains,for the first time in her life.We just about lost McKayla so many times but here she is today,someone has a plan for this little girl.McKayla's speech,balance,activity level have all improved,she has not had any seizures since the transplant.

We want to keep everyone updated on McKayla's liver transplant! McKayla was transplanted January 5,2004 the day we were all given the gift of life.I was fortunate enough to be her donor,to cure the Citrullinemia that was tearing down her body but never her spirit.I am blessed to have this beautiful little girl and I will always be thankful for the day she came into our lives. McKayla has a true fighting spirit that has taught myself and many others the true meaning of life. Our new motto "Could this day get any better"!

To You, My Sisters

Many of you I have never even met face to face, but I've searched you
out every day. I've looked for you on the Internet, on playgrounds
and in grocery stores.

I've become an expert at identifying you. You are well worn. You are
stronger than you ever wanted to be. Your words ring experience,
experience you culled with your very heart and soul. You are
compassionate beyond the expectations of this world. You are
my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite
sorority. We are special. Just like any other sorority, we were
chosen to be members. Some of us were invited to join immediately,
some not for months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations,
evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were
pregnant, or we had just given birth, or we were nursing our newborn,
or we were playing with our toddler. Yes, one minute everything was
fine. Then, whether it happened in an instant, as it often does, or
over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children undergo chemotherapy.
Some need respirators and ventilators. Some are unable to talk, some
are unable to walk. Some eat through feeding tubes. Some live in a
different world. We do not discriminate against those mothers whose
children's needs are not as "special" as our child's. We have mutual
respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We
know "the" neurologists, "the" hospitals, "the" wonder drugs, "the"
treatments. We know "the" tests that need to be done, we know "the"
degenerative and progressive diseases and we hold our breath while
our children are tested for them. Without formal education, we could
become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get
what our children need to survive, and to flourish. We have prevailed
upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children
with cerebral palsy. We have labored to prove to insurance companies
the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could
receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that
means walking away from it. We have tolerated scorn in supermarkets
during "tantrums" and gritted our teeth while discipline was
advocated by the person behind us in line. We have tolerated insane
suggestions and home remedies from well-meaning strangers. We have
tolerated mothers of children without special needs complaining about
chicken pox and ear infections. We have learned that many of our
closest friends can't understand what it's like to be in our
sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To
Holland" and Erma Bombeck's "The Special Mother." We keep them by our
bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically
handicapped children to the neighbors' front doors on Halloween, and
we have found ways to help our deaf children form the words, "trick
or treat." We have accepted that our children with sensory
dysfunction will never wear velvet or lace on Christmas. We have
painted a canvas of lights and a blazing Yule log with our words for
our blind children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And all the while, we
have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how
we'd make it through another day, and gone to bed every evening not
sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in
Italy. We've mourned the fact that our trip to Holland has required
much more baggage than we ever imagined when we first visited the
travel agent. And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they
will achieve in life knows no bounds. We dream of them scoring
touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them
planting vegetable seeds, riding horses and chopping down trees. We
hear their angelic voices singing Christmas carols. We see their
palettes smeared with watercolors, and their fingers flying over
ivory keys in a concert hall. We are amazed at the grace of their
pirouettes. We never, never stop believing in all they will
accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is
hold tight to their little hands as together, we special mothers and
our special children, reach for the stars.

By Maureen K. Higgins

Journal

Wednesday, May 13, 2009 11:58 AM CDT

Wow it is already May we have not had to much great weather here yet this spring hopefully that will change. McKayla is growing like a weed it is very hard to believe 12 years old already. McKayla is enjoying school much more these days although it is hard sometimes to get her up in the mornings.

The other day she did not want to go so when I dropped her off at school she had tears rolling down her eyes and her teacher came out and she said " I can't go in there" and her teacher said "why?" and McKayla said "because I have the swine flu"! Smart kid I think she had heard alot about it just on the news it was so funny I was laughing so hard. McKayla of course has always been such a character.

Cory just had his 17th birthday that was another one that blew me away the time just goes so fast.

We are going to genetics on May 28 for a follow up with the Doctor it has been 4 years since we have been there Wow! We used to be in that office almost every week,I am actually looking very forward to it.

I hope everyone has a great day!!

Jodi

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Hospital Information:

Patient Room: home

Home
17 Galveston Ave
Sherwood Park,Alberta
T8A 2N7

Links:

stollerykids.com  

www.truekids.org  

  

E-mail Author: jodiphelan@hotmail.com

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