Good news! Hailey’s pneumonia is now completely gone. We got her test results back Thursday and the doctors gave us the all clear… thank goodness! They decided to do her last stem cell injection today (rather than tomorrow, as planned) and she got back from it about an hour ago. She is now resting comfortably on her back, with no pillow (and will be for at least the next 5 hours).
Hailey is now back to doing as good as she was before the infection. Thankfully she did not have a major setback, like I was expecting. We’re finally able to leave the room and go downstairs for massage, physical and occupational therapy. She is still trying to talk, roll over and is holding her head up better than she has in over a year. She is breathing so well now and her lungs are very clear. She is not as congested and is not chocking near as much as before. Her seizures are back down to 5-10 a day. The doctors have also noticed that her pupils are much more responsive to the light (meaning that her vision may be improving!).
Neil and Carter are doing well at home, though I know they miss us as much as we miss them. Carter’s condition is stable and we are hoping that he does not progress as quickly as Hailey. We have him on more preventative medicines, which we didn’t know about with Hailey. This will hopefully slow the progression of his disease and buy us more time, so that he can be a part of the Cornell trial. If not… we’ll always have China.
This is great! I got this website from Jon and Kate Gosselins website. Your email from one voulenteer made it into the “In Our Prayers” section of the website. If you haven’t alredy been informed. I would love to know these dear children and hold them close to my heart, but I am far away in MA. I sincerly feel sorry for them and you for their condition. Tell them to love life while they have it and to keep parents near and dear to them. Good luck with your search for a cure for the kids! Always believe in yourself. When in doubt, look back and remember that you love them and if they need a surjury or to leave this world, you were only doing it because YOU love them!!! Through any seizure, shot, or cough, love them for all of us with ALL of your big heart and nurture them with the best thoughts in mind! Congatulations on Hailey, and keep on fighting for the boys!!!
My son was diagnosed w Battens today, just wondering what preventative meds you refer to in your post.
Thank you.
Tracy
I also got this website from http://www.sixgosselins.com. I dont even know these kids but, they are in my prayers. i truly think that hailey, carter and neil hav e a special guardian angel that will be with them for the rest of their lives. my best wishes.