The Summer Finale

It's September already and the summer has come to an end.

We just returned from a short trip to the Bay Area over the Labor Day weekend.  Matt's mom celebrated her retirement with a big party, Kalista started her first day of school last week and Bella had a blast at the doggie hotel.

Grandma Evelyn's retirement bash at the Cliff House

 Bella enjoying playtime and making new friends at the pet resort

We got this emailed to us from the pet resort on Labor Day...Bella is too cute!

 Kali enjoying her last few days of summer vacation before her first day of school

Kalista also sat on the airplane for the first time over this past holiday weekend.  She did a great job on both flights.  She said "whoa whoa whoa" upon take off and then slept for the remainder of the flight. Whew...we were so glad that we did not end up a victim of those crying kid airplane stories.  She did a great job!

Here are a few pictures from our trip up north visiting friends and family:

 Having dinner with Great-Grandma (Jen's Grandma)

 Hanging out with Great-Grandpa (Matt's Grandpa)

Kali borrowed Auntie Jeanette's Barbie mobile with Grandpa's help

 Kali had to show off her new bathing suit. It hides her belly bump well!

 Enjoying pool time with dada

 Poolside party with the cousins

Because we haven't updated our blog over the past few months, we have plenty to talk about now.  Kalista is growing leaps and bounds.  Her speech and vocabulary has expanded and she talks non-stop.  her new favorite phrase is: "What is.....????"  So she asks us all the time: "What is a bird?  What is Brobee?  What is Muno? What is dada? "  Kali is still a big lover of Yo Gabba Gabba and asks about Brobee and Muno on a daily basis.

Bella has adjusted to life without Joey and is enjoying all the attention she gets from all of us in the house. She loves cuddling with Kali and I think the feeling is mutual from Kalista too. We will sometimes find Kali laying on Bella as if she was a pillow.

 Summer chalk art classes for Bella - Kali is a good teacher!

 Mastered the pursed lips pose for blowing bubbles

Enjoying plenty of time outdoors

We just celebrated our five year anniversary and will celebrate the monumental milestone in the next few weeks while we are on a long vacation.  Matt is working hard at the Marriott still, but Jen has decided to leave private practice after almost 7 years to join the optometry team at Sharp Rees-Stealy, a larger medical practice, as their pediatric specialist mid-October. It has been exciting news and a big change!

Update on Kali's medical status: We have been placed on hold from any surgeries until we wean her 100% off her g-tube.  Which might be a good thing since she is so petite.  We have seen the GI department and our nutrition team quite a bit over the summer because we were not gaining weight as quickly as we should have.  With a little adjustment in the calories and quantity of tube feedings, we are back on the growth chart with good progress. We had to bump back up to Boost 1.5 formula with some extra calories from Duocal, but we broke the 20 pound mark FINALLY sometime in mid-August.  Yay!! 

We have a feeding team evaluation coming up in the next month and a half to assess where we are and figure out our next plan since we are at a standstill with oral feeds again. Kali will get hungry...stuff food in her mouth....but won't swallow it and then gets frustrated and taps her belly for her tube feeding. She is too smart for her own good!  

We are just blessed that she is doing well overall and growing into such a little woman.

Surgery or No Surgery...That is the Question

We had our appointment today with the reconstructive/plastic surgeon, Dr. Gosman. The final verdict is.........(drum roll).........NO SURGERY! We really weren't anticipating that she was going to say "Yes".

This plan was determined by two good reasons:

#1: Kali is still so petite and tiny

#2: The G-tube site poses a monster infection risk.

SO....our ultimate goal, before any surgeon will possibly do anything, is to get Kali on a full eating course and be able to be G-tube free. It is so easy to say...but such a hard battle to go through.

Good news though...Kalista has now added cheeses (provolone, cheddar and mozzarella) and taro bread to her "OK" list of foods. She's like a chipmunk-mouse when she eats. Nibble..nibble ....nibble....store....maybe swallow....store some more...nibble..nibble...

Off the Growth Chart

We had our GI appointment this week to address the leaking g-tube issue. It looks like a new g-tube button swap is due and we might have to slip some gauze in between the tube button and Kali's belly to keep the tension tighter.

At our visit we found out that Kalista is off the growth chart....but not in the proper direction. Somehow between the last time we were weighed and now, she lost a little over a pound in body weight. It is probably a combination of her new found skill of walking plus the leaking from her g-tube that made her drop off the growth curve. Poor little thing weighs in a bit under 16 pounds now.

The remedy.....super soluble Duocal...essentially weight gaining powder. We have been instructed to buff up her calories by 100 everyday until we have our nutrition appointment mid-July. We hope that will throw Kali back on the growth curve and plump up those skinny arms.

My New Monster Doll

Our neighbor, Hiroko, was so generous and creative. She crocheted Kalista a monster doll. Its name is Sherbert...since it is pink and orange and reminded all of us of sherbert. We have goggles from the movie, "Despicable Me" and Kalista loves putting on and taking off the goggles on Sherbert.


The monster doll was the highlight of the week. Not much has happened since the County Fair, except trying to figure out why Kalista's g-tube site keeps leaking. It's starting to get annoying having to change her outfits multiple times a day since a large wet spot shows up on her onesie. Kalista is so smart now; she touches her g-tube button when it starts to leak to let us know that it's (1) getting wet and (2) uncomfortable. Hmmm..it's such a mystery!

Oh wait...we did see Ms. Tami, Kalista's PT, this week and she told us that she has no concerns about motor development. Kalista is so close to walking all by herself...she just needs to take that leap of faith and go for it. We don't have to go back for another visit with Tami until September.

**NEW UPDATE** Check out the compression wrap page for more updates on her wrapping progress.

We Gained An Hour

Oh...gotta love daylight savings time in the fall. An extra hour is what we need.

Not much new stuff going on in the home front. We do have an appointment with Kalista's pediatric surgeon on Monday since her monkey toes were up to mischief again and gripped on to her g-tube tubing. She is so strong that when her toes grabbed the tubing and kicked her feet outwards it made a good tug on the button and caused it to bleed at the base. It's been lightly bleeding for the past few days and we just want the doctor to check it out. We've been putting antibiotic ointment and doing frequent gauze replacements to prevent an infection. Darn those monkey toes!!!

I don't have monkey toes!

Kalista's newbies:

She has been getting much better at sitting up on her own. She's even learned how to dress and undress herself....just kidding. We're not quite there yet. Although, she loves to hang on to her clothes whenever we change her outfits. Her little fingers have also found a fascination with paper items. She has learned that paper crinkles and loves to scrunch at it. She is also turning the pages when we read to her in the evening. So cute!

Look at me! I have a cool headband.