You have a very beautiful daughter and my heart goes out to you. My daughter is 2 weeks older than Claire and my heart dropped just thinking of my daughter and what she does everyday. I just could not imagine. I have a tear in my eye as I type. Keep strong and hang in there.
MARANDA GOFORTH said:September 6, 2011 5:30 am PST
HELLO, I FIRST WANT TO SAY THAT I AM SO SORRY FOR WHAT U R GOING THROUGH, AND WHAT CLAIRE HAS GONE THROUGH AND WHAT SHE HAS TO FACE IN HER FUTURE!I HAVE A SON THAT HAS MULTI-CONGENITA ARTHROGRYPOSIS, WHICH IS A GENETIC DISEASE THAT EFFECTS HIS ELBOWS, WRISTS, AND ANKLES IN MY SONS CASE. HE HAS A MILD CASE OF IT AND ITS STILL AFFECTS HIS EVERYDAY LIFE ,HE CAN'T BEND HIS ARMS OR HIS WRISTS AND WASN'T SUPPOSE TO BE ABLE TO WALK, BUT THANK THE GOOD LORD ABOVE HE CAN NOW BEND HIS RIGHT ELBOW 90 DEGREEES AND HIS LEFT 60 DEGREES BUT HAS TO HAVE SOMETHING TO PUSH AGAINST FOR THEM TO BEND HE CAN'T JUST DO IT . HE LUCKILY IS ABLE TO WALK , RUN , JUMP ECT. HE SEES DR. MIRIAM WEINSTEIN AND DR. MADIGAN . HE ALSO DID PT AND OT FOR THE FIRST TWO YEARS OF HIS LIFE AND HE GRADUATED FROM THERE. DR. WEINSTEIN SAYS THAT WE R GONNA WAIT TILL HES ABOUT 7 OR 8 YEARS OLD AND TRY SOME MUSCLE SHOCK THERAPY SO WISH US LUCK AND I WISH U GUYS ALL THE LUCK IN THE WORLD!!!!!!
Melody Lee Cook said:April 8, 2011 3:44 am PST
Hi Claire - I came across your story and my heart is filled with emotion for you. I have a 2 year old granddaughter whom I cherish as I'm sure you are cherished by your family. My prayers are with you sweet girl and I hope to follow your progress as you grow into a beautiful young lady!! Much blessings!!
Melody Lee Cook-Maryville, TN
We love you, Claire, and enjoyed our visit with you, your Mama and Daddy, recently!
Sue Harrison said:July 4, 2010 2:19 pm PST
Hard to imagine that strokes happen to so many of our little blessings. My granddaughter was diagnosed as having in-utero stroke when she was 6 months old. We have seen the pediatric neurologist at East Carolina Neurology in Greenville, NC once and she told us that the CT report from the our local radiologist said Mackenzie had a massive stroke on the left side of her brain and she ordered an MRI for more specifics. I talked to her nurse and she said it confirmed the CT. We go again tomorrow to get specifics. She sounds just like your angel. I am praying that the care here is what it should be. She will get early intervention help in NC. The only insurance she has is medicaid. I doubt University of Alabama takes that. I look forward to hearing how things go for you and any insight you can provide as we wait for proper therapy to be scheduled. She does move her right arm and occasionally will open her hand and also will move her right leg occasionally. We have been stretching and moving her arm and leg, opening and stretching fingers, and stretching/moving ankle and toes on her leg. We hold her left arm and try to get her to reach w/right and I feel like if we just keep doing that it will help. I know God is faithful and she will be all that God wants her to be. I will be praying for your family and for sweet little Claire. I don't know about Claire, but Mackenzie is one of the happiest babies I have ever seen. That in itself is a huge blessing. God bless. Sue
Amy Shugart, OTR said:June 2, 2010 6:55 pm PST
I don't know exactly how I came across your story but the similarities to my family is remarkable. I think I originally saw the name of the PT working with your daughter and thought it was funny to have another therapist counterpart with the same name.
However, I have to tell you my daughter, Claire, had neonatal strokes in the right frontal/parietal regions. Like others that have described this, she was quickly diagnosed due to neonatal seizures. She is now 10 yo and uses her left arm fine (although occasionally I wonder if she is a little more clumsy than usual). She does however, walk with somewhat of a limp due to trunk and LE weakness. She doesn't notice it but others do. Otherwise, she is a normal almost 5th grader that makes straight A's, loves to swim and fights with her little sister.
I work with adult stroke victims and I currently have an outpatient that is scheduled to go to U of A Birmingham later this summer for the constraint induced therapy.
Anyway, small world. Good luck to you. As you well know, those tiny ones have such plastic brains that can overcome these events much better than the adults. I hope that you post updates. Your daughter is beautiful.
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