Merry Christmas!

Yesterday's Fun

Daniel decorating his gingerbread man (he didn't eat any of it of course, but did try an MandM) and Sofia using her walker (provided by her physical therapist) to cruise around the house:

Santa

On Friday morning, Sofia and Daniel visited with Santa at their Birth to Three agency (early intervention). They enjoyed the holiday music and weren't too scared to sit on Santa's lap, although Sofia was nervous when he let out a "ho ho ho".

Ouch

Daniel is sporting his first big boo boo. He tried to climb on the coffee table, slipped and bumped his chin. A big scrape/scab can now be seen.


Last weekend, Grandma, Grandpa and Uncle Tim visited for an early Christmas.

Walking...

Sofia is taking more and more steps. She's up to 12! We caught some on video...

plus extra bonus footage of her celebrating afterwards (well, sort of)...

Results

We're back from our early morning (6:30!) scoping and we finally have some results. On the plus side Sofia has no signs of reflux and on the GI side appears to be well managed. We're actually going to increase her feed as she needs some more calories to keep growing however they want to keep her more lean than just packing on weight.

However it is pretty clear she will need another reconstruction surgery as her trach walls are floppy and collapsing. She can move some air through but not nearly enough to be decannulated. There are no signs of inflammation, infection, or scarring, which pretty much means this is as good as it will get on its own.

The Drs are getting back to us with a plan sometime soon but it won't be until the Spring that the surgery can happen.

Attacking Grandma

Now that Grandma is back for a visit this week, Sofia and Daniel compete for her attention. This is how they greeted her this morning!

Weekend Activities

Sofia and Daniel now have their snacks, and sometimes read their books too, at their new toddler table. Here they are on Sunday morning "reading".




On Sat night, Mommy and Daddy went to an event to benefit Star Inc., the provider of birth-to-three/early intervention services for Sofia and Daniel. It was a rare night out!

Every little step!

Big milestone for Sofia - Yesterday while playing with Daddy, Sofia pulled herself up. Then Daddy was able to sneak away and Sofia took a step towards him! This is a big milestone for her. We hope she gets much more comfortable standing on her own and taking steps so that she will soon be walking!

Haircut

Daniel went with Mommy to have a big boy haircut. He was really good and didn't fuss at all until we came home to give him a bath afterwards.

Here he is showing off his new cut!

Daniel rides a tiger!

This past weekend the kids were at a fun little party hosted by the founder of their special pre-school. Both kids especially loved the guitar player (of course), riding down a hill on little scooters, and running around on the grass. They even got to play in a bouncy castle with Mommy and Daddy.

Here's Daniel going for a ride on a tiger... well ok a mechanical tiger.

Words

Daniel's speech therapy seems to really be helping him. Here are the words he is now likely to use:
more (mo)
moon (also mo)
go
car
bye
hi
mine
baa (for sheep)
moo (for cow)
kitty (more like ditty)
no
dada

What happened to the warm weather?

It seems like we went from air conditioning directly to heat this year (AGAIN!) as this week we've struggled to get out of the 50s. Everyone here is bundling up, so here is Daniel modeling some of his new cold weather clothes. Well at least they are new to him, they are mostly hand-me-downs!

Both kids appear to be mostly over their colds but still have some runny noses. Daniel also had a rough night last night and we're not sure if it is cold related or something else.

Rainy Day Fun

Sofia and Daniel were stuck inside this morning so Mommy whipped up some homemade play-dough for them. Daniel had fun but Sofia wasn't too sure about this new substance.

Both kids came down with colds this week and Sofia's seems to be lingering. They are happy and playful despite runny noses.

First Work of Art

Sofia and Daniel are now attending 3 hours of preschool twice a week. They both love it and are exhausted at the end. Which is a good thing.

Here's the first work of art to go up from Sofia!

Sofia has moved...

into the living room! It's gotten a bit too noisy in the family room so we've moved our home hospital into the living room. Now Sofia has her own baby grand piano!

It's still taking some getting used to but we think she's sleeping better and that's what is important.

Birthday pictures!

Sorry for the delay... here they are!

(pics courtesy of granddaddy)

9/11

9 years ago Daddy was 6 blocks from Ground Zero and Mommy was in midtown. Neither of us were able to make it home that night. As tragic as that day was, 9/11 has a different significance for us now as 2 years ago our son Raymond passed away.

In honor of his memory we are planting another plant, the one from the previous year is thriving despite the drought we've had this year.

On a lighter note here is Daniel in a somewhat apropos outfit for today, we need to complete the look for Halloween. We also had one of Mommy's closest friends from college (whom she hasn't seen in more than 5 years) stop by with her family and the kids were able to play together.

Back to the Doc

Sofia's infection returned last night so we were back to the pediatrician this morning. New antibiotics will hopefully do the trick. We are hopeful that this may explain why her scope last week wasn't stellar.

We also met with a new GI doctor who updated her medications so we hope to get Sofia's reflux back under control as well. The doctor agreed, though, that based on Sofia's history her reflux is mild, and probably acts up when she is sick.

We're Two

It's amazing to see how big Sofia and Daniel are now after their arrival at 24 weeks:



Here they are at 1 year:



It was a beautiful day on Saturday for their birthday party. Party pictures will be coming soon!

Just ducky for Daniel...

Here's Daniel playing with a duck toy that Daddy bought him. A pre-present for the big 2 birthday tomorrow!



Unfortunately in other news Sofia is not just ducky. Her last scoping wasn't encouraging and while she is tolerating her passy almost the whole day it looks to the surgeon that there is some damage in her trachea as a result of reflux. We are going to go see a *new* GI specialist so we can "aggressively treat" it, then maybe her trach issues can be surgically corrected. However, it looks like she may be keeping her trach in through the Spring, since no one performs surgery in flu/rsv season. We'll have to wait and see, as usual.

Working Together

Sofia helped push Daniel on the ride-on firetruck toy yesterday - all while getting her g-tube feed too! She is feeling better but still not over this cold yet.

Slight delay

Well unsurprisingly given this roller coast ride we've been on so far, Sofia has come down with a mild illness so we've postponed tomorrow's scoping until the following Thursday. It's going to be right before their birthday so hopefully she'll get some good news for it!

New pool!

Thanks to freecycle we have a new kiddie pool featuring two little areas and a slide! It was warm yesterday so we took the kids out. Sofia was a bit of a fraidy-cat but after a while got into the pool and started playing. Daniel jumped in and was all over the place right away!

Sofia continues to be maxed out on her passy and we're hoping she stays good until her scoping on Tues.

Sofia Giggles

Sofia is tolerating her passy-muir valve most of the day lately (~9 hours the last few days), and her voice is getting stronger. Here she is laughing, and hiccoughing in anticipation of the tickle monster:

Mommy and Sofia

Mommy got a haircut (finally) and was captured in some photos with Sofia yesterday:

Back on the passy-horse

Sofia is back up to 4 hours on the passy and we hope she soon reaches and surpasses her former 5-5:30 hours. Her scoping is set for the 24th so it is time to start crossing your fingers!

Things have gotten better on the nursing front as we've gotten a wealth of really great and on-time nurses in the mix. Just in time as Sofia is starting to show off a little attitude, just like any 2 year old (just a few weeks to go until their birthday!)

Both kids at the park!

We passed a big milestone today and had both kids out at the park together. Daniel is really into everything now and Sofia started off a bit hesitantly but jumped into things after a while.

Sofia is back up to about an hour on her passy and we are hoping to bring her back to where she was pre-infection next week so they can scope her the week after. Another month lost but hopefully her continued growth will mean the surgeons can come up with a path off the trach soon after that.

Tag Sale

Sofia and Daniel enjoyed Mommy's tag sale find this weekend! Also, we are lucky to have 2 new nurses on our case who are making things easier for us and having fun with Sofia.

Busy Weekend

We had a busy weekend....Daddy was away and Mommy had help from Granddaddy and Grandmommy who came to visit. Daniel and Sofia took a snooze in the stroller on Sat during a long walk:

Cousins at Play

Last week, Aunt Becky and Cousin Layla visited for a few days. Aunt Becky watched Layla and Daniel while Sofia had her scope. Unfortunately, due to an active infection and pseudomonas, Sofia's airway was inflamed. So we need to wait again until the inflammation goes down before they do another scope.

Here are pictures from the park

Layla and Sofia playing

An early nap for Daniel

I love cherries!

It isn't just lemons anymore. Daniel seems to like all fruit or in general anything healthy.

Fruit Lover

Daniel is a fruit lover. It turns out this includes lemons! Last night at dinner, he was fussing and pointing. We couldn't figure out what he wanted until Grandma handed him the lemon, which he actually enjoyed. He had to borrow his sister's bib because the ones Mommy ordered for him haven't arrived yet.

Cooking

Mommy watched both kids on Friday for a time and tried to entertain them while cooking dinner. They were very interested in the food prep activity - for about 10 minutes....

Museum!

The heat wave is finally over so Daddy and Daniel went to the children's museum today. He didn't like most of the exhibits but loved the water learning area. Despite his little blue smock he still managed to get very wet!