We are still not on oxygen!! This is exciting as Abigail has struggled so much in the past with her lungs due to a bout of RSV when she was only 8 months old. The down side is that her immunity is diminishing so she could take a turn for the worse at any time. She wouldn't eat this morning, but I'm hoping I just ordered the wrong thing.
It's been hard to adjust to a new hospital and all the policies and rules that come with any new change. Some things I totally hate, but others make a lot of sense. I just hate feeling like a rookie at this stage of the game. On the 22nd of this month a new children's hospital will open here in Orlando and then we will go there instead. Crazy that it will be almost an hour away but we are anxious to see it. Especially after what I've seen here. There are advantages in living so close to magic kingdom. I know the picture quality stinks, but I thought I would upload these photos anyway. I was so impressed with this castle and beanstock room in the hospital, I had to share. Plus, Abigail is asleep so I am trying to find something quiet to keep me busy;)
I didn't realize you were back in Florida. I'm so glad we got to see you in April. You guys are my inspiration. Love, Lynne
ReplyDeleteIs there a way to reach you via email? I am working with a very special lady, Dr. Julia Kinder, who has an 8 year old daughter with Down syndrome. We're trying to promote a Petition and I thought you would be a great resource to help spread the word.
ReplyDeletePetition - https://www.change.org/petitions/medical-school-faculty-require-complete-education-on-down-syndrome-for-3rd-year-medical-students
Press Release - http://www.prweb.com/releases/Dr-Julia-Kinder/Down-Syndrome-Celebration/prweb10028318.htm
Please get back to me at: colin@juliakinder.com
Thank you!
I would also like to email you. My nephew also has leukemia and is at the same hospital you are at. Would love to chat.
ReplyDelete