Ellie had a great drive to Atlanta - slept the whole way!
Then to the best news of the day - she had an x-ray "swallow study" to see if she was still aspirating (swallowing into her lungs) and she is NOT!!! She "outgrew" the floppy anatomy she had there and all the milk and sweet potatoes we laced with x-ray powder went straight down her esophagus! It's been just under six months since we've done that one - so we were hoping for an improvement there! So now she is approved to try to start some oral feeding - like a little bit of solids on a spoon and trying a sippie cup for about 3 minutes a day. Even if she does well, the other side of things with Ellie is we just can't make her work too hard to do regular things. Her body already works too hard to breathe and circulate blood and putting her through feeding Olympics is only going to take strength away from her for those other functions. So, we're going slow with that one.
Ellie liked the 101 Dalmatians on the x-ray apron. I guess for now this is her Disneyworld. She looks thrilled doesn't she?! :)
And finally to the appointment where the nurses and doctors (total of four in the room) ate her up! She looked great, very calm and comfortable. All of her vitals were good which is what we were seeing at home. They gave her a "room-air trial" and instead of 97 or 98 (100 is the highest number) which is what she is at home, she only breathes 88 or 86 when she does not have her oxygen in her nose. So she still needs that for sure.
She had her authentic "I love Rome" t-shirt on and was acting very holy indeed.
But she is still holey. And her ultrasound showed she is still sick. But not worse-sick! Woo hoo! They weren't expecting a huge change in three weeks since she's been discharged, so no big surprises there. They made a tiny decrease in one of the meds so that was nice. Also, her feeding regime through her machine will change slightly, allowing her to get meals every few hours instead of getting milk all day slowly dripping into her. And they said we don't have to go back to Atlanta for a check up until after Thanksgiving! That seems like forever away!
So we walked away with hope for feeding her orally soon, hope she'll continue to get better, and hope that we might have somewhat of a chance to relax and enjoy fall and be in our home long enough to eat some of the Halloween candy we plan to collect in Ellie's bag.
