Ellie's aunt Beth had her tonsils removed last week. Ellie wanted to sent a message her way to help her feel better. She only ate two markers while making this sign.
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This is the story of Eleanor Brogan who was born in April 2006. She was born missing 90% of her small bowel and 20% of her large bowel. This made her "Short Gut" or "short bowel", hence the name of the blog. Currently she is being treated by Children's Hospital Boston. She was the 23rd child to go on the new lipid for TPN, called Omegaven. Which has saved her liver, kept her off the transplant list and we believe saved her life.
2 comments:
Aside from the obvious ("her writing is so precise"), thanks. I heard she had a great visit and that she and her cousin are becoming partners in crime. I'm so proud.
Your daughter is absolutely beautiful! I’ve written on your blog before, my name’s Erin and I have a baby with short gut. You have written on his page a couple of times, I just wanted to update you, check on your little angel, and ask a couple of questions about omegaven. Collin had a Step Procedure on the 15th of Aug and is doing great! We went home after nine days and after ten days he managed to pullout his g/j tube which caused us to started feeds through the gtube because it was Saturday and he managed to tolerate it! Up until this past week we’ve managed not to have any problems just lots of progress, however, two weeks ago he started teething and now he’s getting his second tooth and is dumping. I’m not sure if it has to do with the teething or that we went from 7oz of bottle and 1 jar of baby food to 11oz of bottle and 2jars of food in a weekend. Of coarse the Dr’s just say he’s dumping and don’t take into consideration that he’s teething. What do you think? Am I just trying to be too optimistic or could it be teething? By the way, he had 20cm of small intests when he was born, in two months it grew to 43cm and when he got stepped at five months his Dr measured 63cm before surgery and he came out with 126cm! So far so good, or so I think!
I’ve checked your blog here and there throughout the months and Ellie truly is an inspiration! A couple just came to NE for there son who has short gut. He has about 20cm of small intests,is five months and VERY orange. I want to suggest Omegaven to his parents but I would like to give them some firsthand advice, something other than what the Dr’s say. How should I suggest it and what advice can you give me to share with them given your experience? Please e-mail me or fill free to write on Collin’s blog. God Bless, and keep on doing great Ellie!!!!
Love,
another short gut family
p.s.
My e-mail is erin_nastase@yahoo.com
Collin’s blog is babycollin.blogspot.com
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