Thursday, April 17, 2008
Patiently waiting :)
Grandma Cheryl said it was a good night. We still don’t have an answer from GI but Dr. Such-Neibar said she might have to go to their office and talk to him directly. The other possibility is we go home and when GI can fit us in we come back for a night. She is anxious to get us home so we aren't exposed to any more hospital germs than necessary. Charlie is doing fine on his new formula in the NJ tube however he is producing a lot of gas that wakes him out of a sleep. I'm not sure if it is related to the medication, the formula or the fact that we are putting the food directly in the intestines, but it seems to bother him. He is gaining weight again and looks so grown up. He has lost the baby look and now looks like a little boy.
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6 comments:
Doesn't Rob do that gassy wake up thing? Maybe he is just like his dad.
Have a good day Coop! And his family.
Hi Angel: Charlie is so special and you are right he is so handsome!!You are very lucky to have 4 very special men in your life!! ( God,Rob,Britty and Charlie) I will continue my prayers daily after you leave PCMC!
As an advocate for people with disabilities,i have to say that you are doing amazingly well. Teach Charlie the skills to be amazingly great boy and man!! Give him the tools to deal with his "new" normal. While you and Rob may get frustrated by the new
advocacy and bureaucracies that you are dealing with, Charlie and Briity are so worth it!!!!
Here are some resources for you
Programs for Infants and Toddlers with Disabilities: Ages Birth through 2
Utah Department of Health
Community and Family Health Services
Children with Special Health Care Needs - BWEIP
P.O. Box 144720
Salt Lake City, UT 84114-4720
(801) 584-8226; (801) 584-8496
Email: sord@utah.gov
Web: www.utahbabywatch.org
Utah Center for Assistive Technology
500 South 1595 West
Salt Lake City, UT 84104-5238
(801) 887-9500 (V/TTY); (888) 866-5550
Web: http://www.usor.utah.gov/
Utah Community Center of the Deaf and Hard of Hearing
Utah State Office of Rehabilitation
5709 South 1500 West
Salt Lake City, UT 84123
(801) 263-4860 (V/TTY); (800) 860-4860 (V/TTY, in UT only)
with love ms Shyla
Shyla-Thanks for that information- I'm sure it will come in handy. This is a totally new world for us and we are glad there are resources to help. --Angel
Angel,
I'd love to come help you when you get the "hero" home! Let me know what I can do (from the deaf stand point)!!
Good luck and we can't wait to hear the news of him coming home!
Jenefer
I'm so proud of you all and thrilled that Coop may be coming home to his new home soon! It will be great for you all to be in your own space and living your lives a bit more normally again. I love you all and can't wait to see you in June! ~~Trish
My name is Clancy. I am a "Northerner" (wink) who stumbled across this blog and obsessively read the whole thing.
I just wanted to tell you that I think you all are amazing. You are very strong parents. The strength you have is wonderful and inspiring. Little Charlie is beautiful and I will pray for him and his family as much as I can.
Thank you for blogging about your Charlie. I don't know how I would handle a situation like this. If a challenge like this ever arose, I imagine I might draw upon the strength and courage that I have felt as I have read this blog about wonderful Charlie and his wonderful parents.
Thank you.
-Clancy in Idaho
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