Creating support where there is none. . . .

I have been going non stop for days now and finally I have a chance to take a breath.  Thomas has been doing well.  We are keeping up with all of our therapies and he is excelling in all he does.  He started to complain about his ear the other night, so we are definitely keeping an eye on that.  Last summer just before we left for our little vacation is when his ears started acting up again, so I am very vigilant.  

While the therapies are non stop our appointments have slowed down a bit.  I did get in touch with Dr. Emans the Professor of Orthopedic Surgery, Harvard Medical School Director, Division of Spine Surgery, Department of Orthopedic Surgery, Children's Hospital in Boston.  I want to have confirmation that we were getting the best here in Atlanta in comparison to their Spine Care Clinic in Boston.  He knows our Orthopedic Surgeon and assured us that we were in good hands.  That gave me a sigh of relief that at least for now maybe we can just sit back and continue to pray that things stay stable.

I personally have had to shift focus back to my oldest for a bit as he suffers from ADHD and a mood disorder.  The medicine he was taking was working in some aspects and not in others.  We now have a plan in place for him and are already seeing improvements.  This will always be an ongoing process for all of us, but I am so thankful for great, understanding doctors and friends willing to help me out with my other children when I need them.

I would like for you to take a moment and scroll down at the beautiful children I have added to this post.  Each one of them have a mommy like me, searching the Internet for answers for their sweet children.  We provide understanding, empathy and comfort to one another.  When these women first started to contact me, my heart just broke.  I didn't want anyone else to be on the same journey that we are on or have another child who has an unknown future.  God then turned my eyes and heart so that I could instead embrace that we have each other.  We could share information, doctor's reports, symptoms and hopefully one day we will share all of our success stories!  

We have a team of people who have been touched by Klippel Feil and other associated Syndromes and anomalies working to create awareness so that we can hopefully get enough people to pay attention to provide more funding for research, treatments and prevention!!  Please pray for these and others and that one day this and the other rare genetic disorders no long exist!

Chase, 3 years old, KFS~Mom is Vicki

Ford, Duane Syndrome and possible KFS ~ Mom is Amber Weinhart
Additionally, he has gastrointestinal issues, undiagnosed still.

Bryton, almost 7 months old~Mom is Jordan
possible KFS

Dylan, 2 yrs old~Mom is Erica
Dandy Walker Syndrome, possible Wildervanck without Duane Syndrome.  MRI was done KFS has yet to be confirmed due to impending surgery for fluid on the base of his brain.  Surgery May 15^th.

Confirmed KFS on May 17th, 2012

Tommas, Italy, 2 Years Old~Mom is Frederica
KFS

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Nolan, 5 months old~Mom is Ali Nelson
KFS – moving to Atlanta for care with CHOA

Molly, 8 months old~Kim is mom
Thought she had Duane Syndrome but doesn’t.  Still testing to figure out what’s going on.

Thomas, 2 years old ~ Mom is Allison
Diagnosed with Wildervanck Syndrome (Duane Syndrome, Klippel Feil Syndrome, hearing loss and other related anomalies.)