Daniel Watches Jeopardy

There's been lots of Sofia updates so here's Daniel a few weeks back watching his favorite show.

Sofia is home again!

And happier than ever! She's back on CPAP w/ her new meds. She's not taking her bottles by mouth though so we'll be working on that over the next week and hopefully after that she'll be back on off the vent trials.

Daniel still has a runny nose but otherwise is pretty happy too and has figured out how to make all of his various (and pretty loud) toys work!

Hospital Pics

Some pictures of Sofia in the hospital.

During her gastric emptying test...


Feeling good enough to play...

Getting Better!

It looks like the new drugs are working and Sofia was really happy for Mommy today as well as doing much better. They are putting her back on somewhat more standard feeds and hopefully will start to wean her back to her vent settings tomorrow. Hopefully we'll have her back by the weekend.

More tests

Sofia had another test today where they checked to see how quickly she was processing food and it turns out she has a delay in moving food through her bowels. This could be what has been causing her to have bad episodes. Her chest x-ray came back clean as well.

So the Drs are giving her some new drugs to help move her bowels and hopefully this will resolve the issue. It is very likely she also had or still has some kind of virus which is making the situation worse (if only because Daniel and Mom have it too) so she's still on additional respiratory support and drugs.

We're hoping she's over the hump and will be home in a few days.

Staying the weekend

Sofia likes it so much she's staying the weekend in the hospital. Well actually she was doing really great yesterday (even though she decannulated herself yet again and needed to be resuscitated) but today she took a turn for the worse again. She's still doing much better than when we took her to the hospital but to be safe the Drs are putting her on some antibiotics and will try again to wean her back down to CPAP and the proper feeds before she comes home, target Mon.

Back in the hospital

Again.

We brought Sofia in yesterday early morning as she was retracting (breathing very hard w/ her tummy) with a very high heart rate and in general extremely unhappy and unlike herself. Of course all tests results and scans were negative but the thinking is she may have some virus that is causing her distress. She's back on ventilator support and on steroids and is tolerating her standard food again and appears to be on the mend.

The docs want to keep her for another day to make sure she is doing better before target releasing her tomorrow.

Mist collar trial!

Sofia started today on her mist trials, 15 minutes 2x a day off of the vent. She's doing one as I write this and is doing great, absolutely no issues!

We're on track to get her off the vent soon but due to her stenosis she'll be on the trach until next Spring at least.

In Memory of Raymond

We have decided to plant something each year around the triplet's birthday in memory of Raymond. This year we chose a pinky winky - a type of hydrangea that blooms this time each year. We will watch it grow as Daniel and Sofia grow too.

Happy Birthday!

The kids finally had their party with lots and lots of presents! Sofia is eating a lot, almost like she doesn't need her g-tube. Now she just needs to put on some weight!

Sofia Home

We brought Sofia home yesterday and she's still eating very well + taking the rest through her new g-tube. She's on track to really fatten up! And she's smiling and about as happy as she was before, which is great.

We're having a little belated birthday party for them today with all of the grandparents + Uncle Tim so we'll post more later.

Happy 1st Birthday!

Thanks for all the good wishes on their first birthday. The hospital had a small party for Sofia, and Daniel had fun with his new presents at home - including his Ching dynasty hat. We will all celebrate together soon!

Out of Surgery

And everything went well. She now has a little button for her G-tube feeds. They are planning on keeping her on pedialyte for today and quickly bring her up to full feeds tomorrow on alimentum. We're not sure yet if she will be home for her birthday party on Sat, but likely we'll have to postpone.





However she still has 90% stenosis in a small segment. Talking to the surgeon that likely means that she will have to wait until she gets bigger and is fully off the vent before they try to reconstruct, sometime in the spring.

She's back on cpap now though which is good, and she was cranky and fussing a lot when she got up, probably from all the new tubes and surgery.

Back in the hospital

Sofia was continuing to lose weight so we brought her in yesterday so they can feed/observe her before her surgery. She's doing well there. Here she is.



Daniel is doing well and crawling around and trying to pull himself up to stand! He misses his sister. Hopefully she'll be home before her birthday on Fri.