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.

6 hours!

Sofia did 2 hours of capping 3 times yesterday for a total of 6 hours! She's tired afterwards but very happy throughout. We figure she'll need to be able to sustain 9-10 hours a day for a week before we call CHOP to talk about next steps, so with luck maybe in the next month or so?

Unfortunately Daniel has come down with some kind of cold as he has a fever and isn't his normal self. Hopefully he recovers fast and doesn't give it to Sofia.

Update

We had a PPT with the kids' teachers/therapists today and overall both are making really good progress across their vast variety of issues. Most importantly both have really improved at their social and play skills since they started school.

Sofia continues to cap more and more today for a total of 1:45 w/ two 40 min sessions. She's really tired because of capping and practically all day passy. It is going to take time for her to build up the strength to cap all day.

Here's a video of her cracking up (and falling over laughing) while watching Olivia yesterday.

Back to cap

Sofia is up to almost the whole day on Passy and yesterday went to school on it for the whole time. However it dries her out a lot and caused some bloody secretions. After checking w/ the Drs this is normal and really the only way around it is to cap so that her mouth and nose can humidify the air.

She's mostly recovered from her illness so we started again this morning and she was able to do about ten minutes on the cap.

Power Outage

The houses around here must've been feeling left out because our power went out this morning just before 7 and only now just came on so we scrambled a bit, took the kids to church then came back and fired up the generator for a while. Luckily it turned out to be a non-event.

Lots of Updates

* During the storm Sofia pulled out her J tube so she is just a G girl now. That means at somepoint she may lose her feeding backpack when she goes to bolus feeds during the day. But not for a while.

* Daniel is *occassionally* using the potty. He's a big boy now!

* Sofia is back on her Passy. 4 hours yesterday! She's got a bit of a runny nose but we are attempting today to have it on her for all her waking hours and then repeat tomorrow. If that works we'll send her to school Mon on the Passy and then get back to capping.

* Today is Halloween for our town thanks to the storm. We finally cleared out the tree but still have other cleanup stuff to get done and a snowblower to fix (again!)

Preschool Pictures

Here are Sofia and Daniel's pictures from preschool picture day:

More on the storm

The other side of the tree fell which blocked off our driveway. Mommy forgot to mention yesterday how Daddy went out to bungee cord the tree together which slowed it down when it fell and likely saved our new roof!







There was way too much excitement yesterday for Sofia who fell asleep getting her neb early evening!

October Snowstorm

The trees are so heavy with all their leaves still on and now snow is piling up. Unfortunately, this was too much for the tree in front of our house. It cracked and half of it is now leaning on the house!

More halloween pics and video

due to popular demand!

Halloween

This kids had a mini-parade today at school. Here they are in their costumes!

Nebulizer

Sofia has been having some serious coughing fits as she recovers over this still lingering cold which has hit everybody so she's been put on an albuterol nebulizer which she takes while watching Dora or Kai Lan.

It takes her from crazy fussy to smiling in no time!

Rain Gear

Check us out!



In other news everyone is sick so we are taking a break on capping trials for Sofia. She was up to 10 minutes a few days ago.

5 min

This morning Sofia had her first really solid capping trial. She was relaxed and watching the cat in the hat when we put it on. She was able to go 5 minutes with a minimum of fuss and coughing! In fact she was able to laugh and smile while watching her show.

Extra excitement

After arriving back from Philly we found out that our contractor had unleashed a storm of dust from cutting drywall into our house. Of course with Sofia's trach this would've been disastrous for her to breathe in for any length of time. We evacuated the kids to the sun room and we spent the next few hours cleaning every surface and washing anything soft, while some guys dropped off "the beast", an industrial strength HEPA filter.



After running things for a few hours we got things clean enough for the kids to move around. We still have the filter going now just in case and the guys are going to come back and clean a high bit of landing that we couldn't get to ourselves.

Here is Sofia in "prison" ie the hospital.



No school today in honor of Columbus but that means serious capping trials instead for Sofia!

Going home today

Sofia is recovered and ready to go home. She is doing better on her capping as well so we will be pushing her on that starting tomorrow.

Here's a pre surgery pic.

Surgery done

No miracles as she still has some swelling so she isn't fully tolerating the capping. More updates as she recovers.

Two days

We've got the kids home today to try to stave off any illness which could derail Sofia's surgery on Fri. That means it'll probably be a crazy day with the kids bouncing off the walls!

Allergic

Daddy took Daniel to the allergist today and confirmed that he is allergic to peanuts (and nuts in general) so we need to stay vigilant with his epi-pen. He also interestingly is allergic to dogs but not cats so that's good for Truffle who loves both kids very much!

He also might have an egg allergy which is contributing to his excema so we will be laying off the eggs for him as well.

Check out my jeans!

We also tried a few capping trials today and Sofia and they went well. She seems to be able to breathe in but has some difficulty breathing out. She seemed to tolerate it until she coughed it off though. This explains why she can't stand the passy (which is all about breathing out). 3 weeks to go until CHOP.

10 years on / 3 years on

We attended a homecoming service at our church yesterday, which because of the date was also partly a 9/11 remembrance (and was standing room only). 10 years ago neither of us could imagine where we would be as we and everyone else we knew were very focused in the new present reality of what it meant to live and work in NYC and America.

Likewise neither could either of us imagine that 3 years ago when Raymond passed that we would still be struggling with Sofia (but perhaps not for too much longer!) or the craziness our lives have been with just the two of them!

We hope that by next year we finally get to some "normalcy" as a family but are very thankful each day to have two happy and (increasingly) healthy kids!

First Day of School Video

And as today was their first day on the bus that's included too!

First Day of School

The kids had their first day of school this week. Here they are in their preschool classroom.





Here are some overdue birthday pics (we need to get the good ones from granddaddy!)

Happy Birthday!

The kids turn 3 today, amazing! We'll post some pics later when the grandparents come over to help celebrate!

And our next trip to CHOP is scheduled for Oct 7. The goal is to repair the suprastomal collapse and get her started on the path, finally, to decannulation. We should be in Philly for a few days for it.

Great Wall of Legos

Daniel and Sofia occupied themselves (with help from Mom) by building a great wall of Legos the other day. Kept them busy while stuck inside after Hurricaine Irene:

Playing outside...

Mommy scored some cool new toys from our church tag sale. Here are the kids playing outside on them... whee!

And the results are...

Looking good! Her new airway measures about 4.2mm. Not quite the 4.5+ that the surgeon was looking for but he expects it to enlarge as she heals and grows over the next few weeks.

Which brings us to step two (really step two hundred and two with this little girl!). He investigated the site of her suprastomal collapse and thinks that it wasn't as bad as he thought. This is overall good news because he now can excise the granuloma tissue and then pin the collapsed tissue to the trach wall rather than have to do a mini-single stage LTR at the stoma site. Then he will downsize the trach and we will be on the "regular" capping/passy protocol towards decannulation. The plan is to do this the first week of October, to give her plenty of time to heal from the previous surgery.

This changes the nature of the surgery from an all-in-one, come home decannulated or fail to a less risky and safer course. But it will be longer, which over the winter has separate risks.

Overall though he was confident that the trach will be coming out one way or another which is great to hear, we just need to keep hanging on.

Daniel's hair cut

Take a look!

Long day with some good news

Yesterday was a really long day. Sofia started off the day by decannulating, probably because she missed having the EMTs come by! It took some doing but Daddy was able to reinsert the trach before the paramedics showed up and everything was fine. However it delayed our trip to Philly so we didn't get going until later on.

The scoping was super quick (maybe we should come late to CHOP all the time!) and a picture is below. Her airway is doing great (top two pictures)! In fact if you compare to the surgery from last April/May [http://yangtriplets.blogspot.com/2010/06/two-more-months.html] she is doing much better as it is completely open and the surgeon says it will open up even more. Sofia is building up mucuous on the new airway as well.

However (and there is always a however these days), her trach around her stoma has collapsed somewhat (suprastomal collapse on bottom two pictures). This is a direct result of having a trach for a long time. We'll know more when we go back for the next scope in two weeks but the surgeon suspects (and has suspected) that he will need to do a mini-single stage LTR right around the area. And he mentioned doing it in the SPRING (which of course Daddy immediately said well why not the summer/fall??)



Either way at this point Sofia needs more time to heal and then after the second scope we'll know more and get a plan together.

After the hospital we stopped by Grandmommy and daddys place in Philly, then hit some discount outlets for some kid clothes bargains before finally making it home late in the night. Whew!

First bronch tomorrow

Tomorrow we go back to CHOP for a day (a very long day!) to get a first view on how well Sofia's new airway is doing. We're all hoping for good news but it is probably too early to tell.

We're home...

Sofia and Daniel are back home and having a great time.

But Mommy had to run Sofia to Yale yesterday to change out her G/J tube because it had become contracted back into her stomach (defeating the whole purpose and putting her at risk for reflux). Again it was scheduled and should've been done at CHOP together with the stent removal but hit a SNAFU.

Stent is out

And according to the surgeon things look good and as expected. We're on track to be back home tomorrow after she recovers from the anesthesia and they give her a final checkout.

Unfortunately due to some colossal hospital miscommunication we will have to go to Yale early next week to have them take a look at and replace her G/J tube. It was supposed to happen right after the stent removal today.

We won't really know if things are going to be resolved more permanently or the course from here until we come back next Thurs for her first bronch. Still it will be good to be through this and to get back to Daniel!

OT in the hospital

As in Occupational Therapy, not overtime (we hope). Sofia got a chance to play with the therapist as we are waiting (as usual) on her surgery today which won't start until 3pm. She's happy as usual even though she can't walk as she has as IV in her foot.

Mouth suction

Sofia loves to have her mouth suctioned as she can't swallow. She was the same way right after she got her tonsils out too.

Now rotated!

Up and around

Sofia is up and walking around and watching her favorite TV shows. She's still a little drowsy which is good because otherwise she'll be running for the exit! We're in a holding pattern until Fri when her stent comes out.

Sofia is almost back to herself

She still can't swallow as she has her stent in but sh'e sitting up and we had her out and walking a bit this morning. Hopefully by tomorrow she'll be off her IV antibiotics and then is mostly a waiting and healing game until her stent is removed on Fri. We're keeping her entertained with her favorite shows and games which will get trickier as she gets better and realizes she's stuck in her hospital room!

Daniel

Let's not forget Daniel. He's been hanging out with grandma and having a good time!

Dora!

Grandmommy and granddaddy got Sofia a giant Dora yesterday. Here's a picture!



Experts will pick up that she is also watching Dora too!

Playing w the peg

Sofia is more active today and playing with her peg again. She is a bit puffy so they are backing off her fluids a bit and taking her off iv morphine in favor of Tylenol and oxycodone.

Done

Sofia wrapped up a bit early and is now recovering in the icu. According to the surgeon everything went well. She might need some further work around her stoma but we won't know until later. All in all he's pleased with how things went and we will know more when they remove her stent on Fri. For now they are managing her pain while she recovers.

Getting started

After a chop standard 3 hour wait Sofia has finally started her surgery. About 7 hours to go!

On Our Way!

We're leaving soon to go to Philly. Actual surgery is first thing tomorrow and we'll have some idea of how she is doing tomorrow night. The stent is planned to come out the week after on Fri and we'll see how it goes from there.

Wish Sofia luck!

Daniel eating cherries

Daniel loves his fruit and here he is eating his new favorite, cherries!

4 days to go until Sofia's surgery!

We are on!

The surgeon called and said that Sofia's reflux is much better managed so we are on for surgery on the 22nd!

Back from CHOP (again)

It went very well. Sofia was a pretty good girl even with her impedence probe inserted which last time drove her crazy. Other than the stifling heat, things went smoothly and we spoke to the surgeon all about the plan for her reconstruction in 2 weeks!! We'll know the results of the probe soon and that's basically the last piece remaining. Now we are focusing on the logistics of living in Philly for a week or so...

Unfortunately though Daniel came down w/ Strep and Grandmommy and Granddaddy took him to the pediatrician and took care of him while we were gone. Hopefully he'll bounce back soon!

Here is Sofia in the hospital with her probe fanny pack and probe backpack. Lots of gear for one little girl!

Moving up the date

CHOP has moved up the date of Sofia's surgery to 7/22. We're down there next week right after the fourth to verify her reflux is under control and then it will be go time!

Some pics of Sofia

Here she is licking the window (Daniel is playing outside).



Here she is on her way to get her G/J tube which had to be done radiologically which is why Daddy has a lead jacket on.