XMAS

We're doing lots of small xmas's this year, first with Grandma before she left, then just the four of us, right now with Grandmommy and Granddaddy, and then tomorrow with Grandpa, Uncle Tim and Aunt Karen.

Whew.

There were plenty of fun presents and food for everyone and Daddy made a duck for Xmas dinner. Also to spice things up a bit, we're also starting to potty train Sofia so she can be ready when she goes back to school on Tues.

Here are some videos:

The kids got a trampoline and here's Daniel jumping up and down on it.




Today was also a big day as we went out to a museum in the morning, then later on all went out for the first time for a family dinner. The kids were really good!



Daniel ate a ton of rice and then decided to cook up some more...

Summer 2012

After listening and taking a look at Sofia it seems likely now that she will need one last surgery next summer. They won't know for sure until they scope her in March, but it is likely that her trach site will need further repair, what he is calling a mini-LTR. While it is disappointing to have to wait longer the upside is that if this procedure is done they will completely seal off the stoma when it is completed, so there is no going back! On the other hand it means another week in Philly this summer.

In the meantime we're going to start potty training her and trying to get her to eat more food by mouth.

Towel Time

Sofia, jealous of Daniel's turn taking a bath, insisted on wearing her towel around the house.

Getting Ready

For our next trip to CHOP on Mon where we will figure out when to do a decan trial. Sofia has been a bit sick so she's been on passy for two days but yesterday afternoon went back to capping. She's recovering pretty quickly these days from her colds so hopefully this won't be an issue.

No backpack!

Unlike Dora, Sofia no longer needs to wear her backpack during the day because we have *finally* moved her off of continuous feeds all day. She definitely likes the added mobility, even if the backpack was cute!

She's also being a really good capping girl. Now that she's been past her cold the past few days she's been capping essentially all day. We're going back to CHOP on the 19th to determine next steps.

Here are the kids building a tower with their future aunt.

Hooray for Daniel!

Today Daniel used the potty fully for the first time (fill in your own graphic details). While it is a little premature to declare victory, we hope that by the time Monday comes along he'll be all set at school!

Now if only we can get him off of drinking milk from a bottle.

Sofia is back to capping today. She stayed on passy throughout her cold which is a good sign and she still is a little congested but doing fine.

Both kids had a great Thanksgiving with Grandma and Grandpa Yang plus their uncle and future aunt. Like everyone else we'll be eating leftovers for a while! Pics to come.

All Day! Mostly....

Sofia went all day on her cap (except when sleeping) on Fri and Sat however it seems like she is coming down with something that is clogging up her nose and so she was half cap / half passy yesterday and today all passy. That's still really good given that previously when she's had any cold symptoms we had to put her on oxygen!

We still don't have a plan from CHOP yet but are going to keep pushing the capping. We're also waiting on the ok to shift her back to 4 bolus feeds so she doesn't need her backpack during the day.

Babbling

Here are two videos of Sofia babbling yesterday. Also a picture of Daniel sleeping on the couch, with our cat to keep him company while he's recovering.