Big Boy Bed

Daniel now sleeps in a big boy bed as Mommy took the side off of his crib (IKEA!) this week. He's doing fine with it. In fact he doesn't really seem to notice that he could roll right out if he wanted to!

Sofia has been a really good capper, capping all day every day since we got back from CHOP which is great news as we count down to May.

May

Our trip to CHOP went pretty much as expected. The Drs scoped and found that her lungs looked great and her airway above her trach (after last summer's reconstruction) looked great however below her stoma she has a lot of floppiness which is causing it to be difficult for her to breathe without her trach.

She capped pretty well overnight but they want to see that she caps very well over the next few weeks before confirming the surgery which is all about her not getting sick!

So the tentative plan is for a mini-reconstruction below her trach in May which will be another one of those several weeks in Philly deals.



You can see the first four pictures how nice and open it is. The fifth is where the trach is and the last one is suprastomal below the trach site where it is collapsed.

Back to CHOP

We're going back tomorrow for another scope for Sofia. We'll also likely be there 1 or 2 nights for them to do an overnight capping trial as well. There's lots of possible outcomes but the most likely is that this is all prep for another surgery in May/June that should fix her stoma area and allow decannulation. We're hoping that there will be no more work in her trach itself.

Chowdafest

Here is the family at chowdafest, a local event with chowder, bisques and other soups from 30+ restaurants. A yummy time was had by all...