Hugbook

Give granny a Hug

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  LReneeNMike (09/30/09)

  Keep on, Keepin' on...! Prayers going out for you/family, as well!
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  ArmExtenders (09/30/09)

  Delighted you have your 3 miracles grandbabies. Don't know what 'mixed cp' is either, though.
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  Germaine08 (07/23/09)

  HELLO , I READ YR PROFILE ABOUT YOUR GRANDSON'S ARE PROFOUND DEAF AND NOW HE HAD CHOLEHEAR IMPLANT. I AM HARD OF HEARING.
  MY NAME IS LUCI / GERMAINE 08
  DAILY STRENGTH CHRISTIAN WOMENS GROUP
  ADMINISTRATOR.
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  Ray of Sunshine
  

  leifysmormor (02/04/09)

  how are youy? i am doing pretty good,my daughter is expecting again- for me it feels so healing. there is a group i joined- grieving grandparents, i really like it! you get to talk about how special your grandchild is, i t nice to have others that understand how you are feeling! anyways let me know how you are doing- also in grieving grandparents- under discussions- under a grandparents grief- it is interesting- it talks about the double grieving that goes on with a grandparent! found that part really helpful! take care! kathy
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  Shout Out
  

  sharabi_23 (01/03/09)

  TAG YOU'RE IT!! YOU HAVE BEEN CONSIDERED ONE OF MY SWEETEST FRIENDS ON MY LIST. ONCE YOU HAVE BEEN TAGGED YOU HAVE TO TAG 5 OF YOUR SWEETEST FRIENDS AND LET THEM KNOW THEY ARE SWEET. FAKE FRIENDS: Will ignore this. Send this to at least 5 people including me if u care. If you wake up in a red room with no windows and doors, DON'T panic..you're just in my heart!!! Send this to all the friends you want to keep forever... Don't feel as if you have to If you get 7 back you are LOVED!!!
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  Tor (12/31/08)

  Update?! Christmas story?!
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  Santa
  

  LovelyNiecy (12/25/08)

  MERRY CHRISTMAS AND A HAPPY, HEALTHY, PROSPEROUS NEW YEAR! HUGS'N'LOVE, NIECY.
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  Tor (12/13/08)
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  4ks (12/12/08)

  Yes. He was never able to get off of the ventilator. He had a narrow airway, trachea malasia(soft airway)which caused him to have a trach, damaged lungs, spasticity, oral adversion(he had a feeding tube), and Neurofibromatosis, NF1 for short. That is a genetic disorder that causes tumors to grow anywhere you have nerve endings. He had tumors on his brain stem, spine, and all around his major arteries. We are not sure what caused him to pass away. He was fine one minute and then he passed out and all his #'s started to drop. We thought maybe his trach got clogged but it wasn't. We did and emergency trach change but the new trach would not go in because his airway collapsed. We did CPR until the ambulance got to the house but by the time we got to the hospital they could not get him back. It started at 8:25am and he was pronouced at 9:36am. It was only an hour that seems like a lifetime. We are not really sure if the tumor on his brain stem had anything to do with it because it could have blocked the message to his brain to breath. We will never know. He was going to have surgery at age 2 to repair his trachea and then he would have no longer needed the trach. People can live with NF1 although his case was very severe. We did donate his tumors to research and his organs to Gift of Life which does give me some comfort. My daughter is 100% fine. I'm sure you heard from the nurses and doctors in the NICU that girls do better than boys. Karly was born 1 lb 12 oz, she wasn't breathing and they did not think she would make it more than a day. Kyle was 2 lb 3 oz. and crying his head off when he was born. He was doing great but then slowly declined. Sunday is National Child loss Day. We are going to a memorial service at Children's Hospital of Philadelphia where Kyle spent many months. As we light candles I will think of your grandson and all of us left behind to mourn them.
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  4ks (12/12/08)

  I'm so sorry for your loss. My twins were 15 weeks early so believe me I understand all that you have been through. I hope I never see a NICU again! My daughter is 26 months and Kyle passed when they were 15 months so she really doesn't ask about him either. We do talk about him all the time and try to teach her that she will always be a twin and what her brother was like. She does like to look at pictures of the 2 of them but I know she really doesn't get it yet. You and your family will be in my thoughts during this very hard time of year. I'm so sorry for your loss.

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