It's official...EJ is off O2 one hour TWICE a day! We got the order today when I called the pulmonologist to ask if we could begin time off since he's been on only 100ccs for a month and has been very stable. So he began today and he managed his first hour off without one dip. He was 97-98 almost the entire time. He never went lower than 94. He just finished his second hour off for the day and the same thing...high 90s and NO DIPS!!! We're on our way to saying goodbye to the O2!
Also, here are some pictures of the kids trying Hawaiian pizza. They both loved it, like most every other table food they eat.
6 comments:
Yay Edwin, Jr.!!! So exciting. I bet you can't wait to get out in the spring with them. It will be so easy!
Great news - what a wonderful christmas present :)
Congratulations!!! You are on your way to no O2!!!!!! What a great milestone!!!
GREAT NEWS on the O2 front! I remember when we were first allowed to trial Hallie off of the O2 (of course, we had accidentally done so once before when we forgot to turn her tank on, but that's another story). It was winter (February) for us, too, so we ended up holding on to the tanks until June, but it was so great to see her face. I would not be surprised, however, if Edwin starts fighting the canula from here on in...it's hard to go back to wearing it when you have the taste of freedom.
The kids have come so far, and as their corrected first birthday is looming, that must be such a good feeling. They are such amazing little kids and they are defying all expectations. Of course they have great parents who have helped them along, but their spirits are so strong and that's what's gotten them through all this. May you guys have a most amazing Christmas and a fabulous New Year!
AWESOME news!
Both your kiddos are seriously ADORABLE!
John cannot sit on his bottom so if he wants to be upright he has to W sit. His PT isn't to concerned but she does want us to push his legs and feet under him so he will be sitting on his heels instead of a W sit. We actually had x-rays on his hips done and they looked fine.
I still remember doing the W sit when I was little and I am fine:) Abby, said she still W sits:)
Anyhow, I hope you have a wonderful Christmas!
Great news on Edwin! Keep up the good work little man.
Hope you all have a very Merry Christmas!!
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