Happy Memorial Day

The kids were outside splashing and having a great time on this absurdly hot Memorial Day. Daddy will be grilling later on again too!

Daniel and an apple

More and more sick

Sofia came down with the same bug on Thurs but it seems like she is already mostly recovered although with a touch of diarrhea. Daniel is mostly back to himself as of yesterday, and is talking more, but is still very weak and gotten very thin. He seems to be back to his nervous reflux vomiting. Mommy took him to the Dr today and they are upping his prevacid for now, and we will work on getting him to put on some weight.

Unfortunately Mommy now is sick too however Grandma is back from China and can help out.

Daniel sick

Looks like Daniel has caught his first GI bug. It's really making him sad and cranky. Mommy took him to the doc today but really there is nothing to do but wait it out and try to make him as comfortable as possible.

More on Day 1 and Day 2 at CHOP

The first day was a long one as we had four appointments and afterwards we had to get our hotel room all ready for Sofia. That night we went to a nearby restaurant for dinner and Sofia was a good girl throughout. She was pretty good at night as well, although it wasn't that restful for Mommy and Daddy as she beeped a few times.

Day 2 we brought Sofia in for surgery. They had us in pre-op where there are no toys for 2 hours then we finally were able to bring her back to the toy room so she could stay happy. They were in total about 3 hours late!

Afterwards we spoke to the surgeon and he said that things were better than he had been led to believe by the folks at Yale. Sofia is now at grade 2 stenosis and he thought a longer, lower set of rib grafts would succeed. He's seen A LOT of patients in similar circumstances so we were glad to hear this. Also GI did not see any sign of reflux damage which was good.

However they did do an impedance (pH) probe on Sofia for twenty hours and that was really tough on her as she was recovering from anesthesia and did not want to be messed with. Mommy spent the night with Sofia and Daddy stayed at the Ronald McDonald House and was able to see some friends in Philly.

The next day we picked her up. It took some time to discharge her but we were finally able to hit the road around 1pm.

Now we need to wait on the GI testing results but barring that the key really is to make a decision on where we want to attempt her second reconstruction. CHOP definitely has more experience and the surgeon seemed very clear on what he wanted to do, but of course logistically it is a nightmare.

We are back!

We just got back a few hours ago from CHOP. More details tomorrow but overall the news is good for Sofia, the head of ENT who scoped seemed optimistic that she would get off the trach after the next reconstruction!

It was a very long and tiring trip and we are all glad to be home, especially Sofia who at the end of it had had her fill of being poked and prodded in the hospital.

Here are some pictures from Day 1. More tomorrow...

Off to CHOP

We are off to CHOP very early tomorrow morning for a day of appointments. Then Friday Sofia will be admitted for exploratory scoping/testing/etc and we plan to be back with Daniel on Sat.

Grandmommy and granddaddy are here and will be taking care of Daniel while Daddy and Mommy hang out with Sofia in Philly.

One more video of Daniel reading

Here he is reading Goodnight Moon

More Daniel singing

ok so after three Sofia videos here is one of Daniel singing and reading

More Sofia Videos

She's figured out a new trick...



And here she is stomping around