May 7, 2010
Emma is starting to tolerate her feedings. Now we just have to gradually increase them. She is not having any problems following her surgery. She sounded a little coarse, but with neb treatments, she seems to be doing ok now.
Happy Mother’s Day to Robin and all mother’s reading this!
Love to all, Grandma Carol
May 7, 2010
May 7, 2010
This is what Emma has, and this organization has been a great to Robin and John in learning about Emma.
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National CdLS Awareness Day is this Saturday.
Here are some snippets from some inspiring stories we’ve received:
She has spent more than half of her eight-month life in the hospital and has had more testing and medical procedures than most of us have in a lifetime. She is a tough little cookie and the light of her parent’s lives. … As grandparents we enjoy her sweet presence in our lives, are celebrating every milestone and look forward to supporting her in her growth and development. “ –Barbara T., grandmother of Marrianna  “Challenges, Denial, Lost, Senselessness. This is what we thought CdLS meant. But once we decided to face CdLS head on, these letters took on a new meaning for us. The feeling of helplessness and hopelessness lifted. Today, for our family, the letters CdLS aren’t scary anymore. They are for new things ~ good things. Now we have Courage. Courage to face all the challenges that go along with raising a child with disabilities. Courage to stand up and let people know it’s okay to have a child with special needs. Courage to have strong voices. We’ve learned a lot about Courage from Joey. He’s shown it every day of his life.
We also have Determination. We are Determined to have Joey get the help he needs. Determined to keep seeking support and raising awareness about CdLS. Determined not to let the feelings of hopelessness and helplessness ever return. And Joey is very Determined to reach his goals and be the best he can be. Love is also with us. It is unconditional and keeps us going through the tough times. Joey has taught us so much about Love ~ his smile, his laugh, his heart ~ he is so full of Love and shares it with everyone he meets. Love surrounds us. Having a child with disabilities helps us realize how blessed we are to have been chosen to be a part of the special needs world ~ Joey’s world. We don’t know where we would be without the Love and support of everyone we’ve gotten to know because of Joey. Today, we also have Strength. A strength we never knew we could possess. My husband summed it up best when he said “When Joey was born, I was convinced I wasn’t strong enough to raise a child with special needs. After watching how hard he has worked and how far he has come, I have changed my mind. I am a better father and a better person because Joey came into our lives.” —Rachelle, mom to Joey (View the awareness video Rachelle organized just in time for Awareness Day.) Happy Mother’s Day to all the moms reading this, especially moms of children with CdLS. Your care, patience and love is amazing. |
May 3, 2010
Emma’s surgery went well today. She was only under about 20 minutes. She was fussy for several hours. Emma grabbed Mom’s empty pop bottle and thought she had the best toy there was. That was all it took to change her mood. She then was happy to with the empty bottle. Of course, she exchanged bottles with Mom when Mom finished her water bottle. The water bottle was a little smaller and it made noise when Emma squeezed it, so she was happy. She did run a slight temp, but they stayed on top of it and by evening, she was laying in bed and playing. The plan is to be able to go home early tomorrow afternoon. At this point, it looks like that will happen. I will keep you posted when I know more.
Thanks for all your thoughts and prayers!
Love, Grandma Carol
Bible Gateway’s Verse of the Day
“It is hard to say when our story begins exactly, but in the midst of my daughter’s much anticipated pregnancy, doctors began to detect “problems.”
Emma Kissock - Emma's Syndrome 