Ashlyn is still on the mend…with a couple feet of tube still draining stuff out of her chest cavity. It feeds in under her right arm and goes in almost to her sternam. It’s not comfortable and even painful…but she’s getting tougher everyday. Less pain medication than ever… and usually not unless she’s been very [...]
Archive for March, 2011
Smelling Brownies and a Lamb’s Bum ?
Posted in Uncategorized on March 19, 2011 | 6 Comments »
On the Mend and On my Mind
Posted in Uncategorized on March 15, 2011 | 4 Comments »
Ashlyn is not only ready to be well…she’s ready for summer! I feel like I want to express something – but I have nothing new to say, or share or even request. We are just so happy to have our Ashlyn home and that feeling has not dimmed, rather it has grown. Our gratitude, which [...]
Ash and Ashlyn Wednsday
Posted in Uncategorized on March 11, 2011 | 4 Comments »
These last day and a half of having Ashlyn home as been almost as surreal as the last 31 days in ICU. Except that this Surrealness is filled with an absolute and undeniable sense of humble grattitude, wonderment, relief, and JOY. This picture taken just this morning has her holding her little chest tube device, [...]
Miraculous Happenings & Home
Posted in Uncategorized on March 9, 2011 | 41 Comments »
In the briefest terms… Ashlyn was scheduled last week for a unique surgery today in an attempt to help a collapsed portion of her very damaged lung do something they didn’t believe it could do on it’s own. This surgery was to have been a difficult one…but worth attempting rather than the final option of a [...]
Something to Sing About
Posted in Uncategorized on March 9, 2011 | 1 Comment »
Some folks from the Songs for Kids Foundation came to sing to and with the kids. Ashlyn actually made the first request for a song. “10 Million Fireflies” she said. And they played it. It was part of a very good day…and I’m so impressed with all that this foundation does. BUT WAIT! That [...]
Ashlyn is an “Outlier”
Posted in Uncategorized on March 7, 2011 | 21 Comments »
Ashlyn is an “Outlier” The wonderful doctors told us last Thursday that our little Ashlyn is NOT responding to treatment as 99.8 % of children do. She is an Outlier. In fact they have only been able to find 11 similar cases of children whose lungs and chest cavity have done what hers is doing…and [...]
No Steps Forward- No Steps Back
Posted in Uncategorized on March 3, 2011 | 13 Comments »
Yesterday was a great and mediocre day. They decided not to remove one of her two lung tubes as there was evidence of some air steal leaking from her lungs into her chest creating pockets. This is not good, so not removing the tube was good. But her lung doesn’t appear to be getting worse [...]
No Bad News
Posted in Uncategorized on March 2, 2011 | 7 Comments »
No Bad News… and that’s good news…..a quick update. We are not out of ICU yet…but I feel as though we walked to the door and are looking down the hallway. (YEAH) One of her 2 two chest tubes is no longer sucking any guck our of her chest (double YEAH)…and may be removed today(triple [...]
