Misty - posted on 03/15/2011 ( 6 moms have responded )
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i am trying to connect with other mothers who have children/ a child with greig cephalopolysyndactyly sundrome, g tube. grand mal and simple seizures, vp shunts anything would help...thanks
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Misty - posted on 03/23/2011
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thank you for all the words of encouregment...and good luck to all of you as well... i love my daughter more then anything and i wlouldnt trade her for the world....its overwhelming at times but i just look into her blue eyes and see that beautiful smile and its amazing...she has saved me from myself more then she will ever know
Joy - posted on 03/23/2011
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I had a daughter that was so sweet. She had CP,seizures, a vp shunt,was blind & never was able to hold her own head up. It was alot of work but I tried to focus on the positive, no matter how small it was. She had a beautiful smile, loved music & me singing to her. As I prepared meals I would put spices or foods at her nose to stimulate that sense. She definately had her favorites. Surprisingly she liked onions.
She passed away just before her 12th birthday.
Dawn - posted on 03/23/2011
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After takeing time for your self,
Keep your head up and keep going.
I have a 5 1/2 year old boy who has
Epilepsy, receptive expressive language
Disorder, sensory issues, hypotonia and is globally delayed. And is the funnest kid to be with at times
Remember that is what our kids have not who they are.
Carol - posted on 03/23/2011
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Hi I have a 9 year old who was born 11 weeks early. And has CP and seizures. I wouldn't trade him for any other child. Although it can be overwhelming at times his good days make you forget about it all. Take it one day at a time and enjoy the little things ..... like there smile or laughter
Jenna - posted on 03/23/2011
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My three year old daughter has hypotonia and she has brain damage from when she was born early. She mentally is 1 years old even though she's three in age. She has to wear braces on her legs and it seems every year she has to be hospitalized. I wouldn't trade her for the world but the best advice I can give you is that there are really tough days and then ok days. Enjoy the ok days when you get them and just remember its ok to feel overwhelmed. Here's a blessing for you and your family.
Sherri - posted on 03/22/2011
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0
My son has a vp shunt and wears hearing aids. He was born 12 weeks early and we seen lots of docs and therapist, but now that he's older not so much. We see a great neurosurgeon yearly. Have had revisions, 4 to be exact. Hope your child is doing well. I know it's a lot and everyone seems to be looking at you for all the answers but their are other moms who have walked in those same shoes. Your not alone.Good luck
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