BIG THINGS CAN COME IN SMALL PACKAGES

BIG weekend, small package of time...  Friday evening, we headed to Orlando for Aaja's ordination and Priya's baby dedication.  Priya's Aaja and Aaji are loved by lots of people, the church was packed and the service was really nice. This was the first time Priya met her Uncles Joel and Jerry, Sister, cousin Gian, and Auntie Mengkha.  It was Priya's first sleepover with her aaja and aaji while her mommy and daddy went out to celebrate her Uncle Lee and Joel's birthdays (fun, fun).  We had an excellent brunch Sunday morning at Sister and Uncle Jerry's house before making the long drive back to Charlotte.

IF I COULD ONLY BE A FAIRY-DUST AUTHOR...

Poppy's mom is a friend of my parents.  I have been following her story since before she was born.  Poppy was born with left hypoplastic heart syndrome and has had multiple surgeries since birth, and it just seems like one thing after another for her family.

I am sitting here drinking my morning coffee, flavoring it with my tears.  This poor baby.  Her poor parents.  Her poor big brother.  Tough as nails baby.  Tough, because they have to be, parents.  Tough story.  I wish it was a story I could rewrite.  It would go something like this:

I would wave my wand (with a shiny little star on top), say something like, "Bibbety-bobbety-boo, and bless you too." Fairy dust would rain down on Poppy's little head, scars would heal, and she'd ride away from the hospital for the last time in her pumpkin-turned-chariot, and she'd go home dancing in the arms of her parents, happily ever after, and hospital visits would be banished to the far corner of the land of Distant Memories.  THE END

https://prayforpoppy.wordpress.com/once-again/

WHAT'S UP, DOC? (UPDATED)

Priya has been meeting all her new doctors here in Charlotte.  So far, we like all of them a lot!  She has met her new pediatrician, geneticist, oncologist, and ear/nose/throat doctor, and plastic surgeon.  We have yet to set up appointments with GI or orthopedics.

This is what the ENT said:

Large tongue.  Large cleft.
Probably cleft repair in two stages, soft first and then hard.  Once cleft is repaired, there won't be much room in her mouth due to her tongue.  Large, unreduced tongue may cause problems with healing of repaired palate.  Needs tongue reduction, front and back (two procedures).  Keep the g-tube in; it's great she has it. Let's do a hearing test and sleep study in near future.  Come back in six weeks.


This is what the surgeon said:
Large tongue.  Large cleft.
Let's try to avoid the tongue reduction.  Tongues usually do not affect palate repair.  Only one palate repair surgery, both soft and hard, no earlier than 9-12 months.  Too early to give a timeline.  Most of the kids I do these surgeries on don't have g-tubes, so do what you want with it.  Come back in six weeks.

Hmmm... I hope they compare notes before our next visits.

WE HAVE ARRIVED

We have arrived...from medical school in CA, to residency in TN, to Mike's first day of computer training (today) for his position as an attending physician in NC.  We love Charlotte and anticipate wanting to stay here a while.  We've already done some great exploring of the area and have met some really great people. People are SO NICE here.  The city is beautiful.  There is LOTS to do.  Our house and neighborhood are great.  We are settling in really well.  One of my fellow BWS moms (on my FB support group) just moved from Charlotte to Nashville, so we pretty much flip-flopped.  We've been sharing all our favorite places for the other one to check out.  Her husband is in the military and will be deployed soon, so she will be coming back to NC to stay with family during those months.  We plan to get together for play dates.  

Our send-off from Nashville was the best!  We left on July 5th.  On July 4th, our friends Kristin and Al opened up their home to friends from 10:00 a.m. on to celebrate the holiday and as a last hoo-rah.  We had a great brunch, mini-lunch, and dinner.  The house was full all day, and it was the very BEST way to spend our last day in the city we loved for four years...with friends!

I also had a good-bye lunch with some coworkers before I left, but it got so hectic getting ready to leave that I didn't get to stop by and say good-bye to everyone else.  I was really sad about that, but hopefully I will be able to visit more people when we go back in October.

We have arrived...through Priya's first ear infection when we got to NC.  She is doing much better now.

We have arrived...to a full night's sleep for one and all--except the cat (just in time for Mike to start work...August 1st is his official first day).

Mike's dad helped us drive one of our cars during the move, so Priya got to spend some time with her Aaja. This weekend, her Uncle Lee is in town.  Next weekend, we drive to FL for her Aaja's ordination and her baby dedication, and Priya will get to meet her Uncle Joey for the first time, as well as her adopted Auntie Mengkha.  The following week, we are hoping to get a visit from our dear Nashville friends, the Llamas's, and then maybe a visit from my dear friend Mengkha in the near future as well!

Priya is almost FIVE MONTHS OLD!  Her last visit to the doctor was July 8th (first one with new pediatrician), and she weighed 13 lb 8 oz.  Next week is full of appointments as we establish care with doctors here (ENT, plastic surgeon, oncologist).  We have yet to establish care with a GI specialist, orthopedist, or speech therapist yet...soon.  She is doing great with feeds!  You would never know she has a cleft palate.  She smiles all the time and has started laughing.  She is cooing and getting better hand/eye coordination.  She likes flipping pages in her books.  It seems that changes so much from week to week.  I also think she MIGHT be starting to teeth, but we'll see how that all pans out.  She drools a lot, sucks on her hands, and has some days here and there where she is just plain fussy.  It's hard for me to see or feel her lower gum, because her tongue is so large and she just won't let me get in there.  Also, it kind of makes her gag, and HER feeling panicked makes ME feel panicked as well.  So...

We have arrived at new location, meeting new people, baby has an ear infection, lots to update, no internet access at home until late next week...difficult to do on phone.  Stay tuned!

MINI BUTTON, BIG MISTAKE

So, good news is that Priya was up for a new g-tube button this week and she was able to get the mini Mic-key button, which is half the size of her first one.  The bad news is that I fed her before her appointment like I always do without even thinking about it.  THAT was a mistake!

FULL STOMACH + HOLE IN STOMACH/ABDOMINAL WALL = MILK GEYSER

The poor girl was a mess when they pulled out her old g-tube, and it put her into quite a bad mood!  The good thing, I guess, is that I did this in the doctor's office.  The next time it will be ME putting in a new button  at home in three months!  I will not make the same mistake again!

In other news, Priya is rolling over!  Unfortunately, my full video won't upload, so here is a shorter version.

FIRST FATHER'S DAY

We celebrated Mike's FIRST Father's Day on Sunday! Here are some pics!  He's a good daddy!  

We started off the morning having a walk and brunch at a crepe and coffee house with some very special friends.  Mike had a soccer game, so we had a fun day on Friday to celebrate Father's Day AND my birthday.  He was off work, so we went shopping for some art. We started in the morning with brunch with some friends and their twin babies and finished in the afternoon, hopping around coffee shops and art galleries in Franklin and Nashville and treating ourselves along the way--pretty fun day.  The only glitch was our car getting backed into while we were in one of the coffee shops, so we did have to take a momentary break from fun to deal with insurance and drop the car off at the collision center (never a fun thing to do).  We did find some art at one of our favorite galleries.  It is not the type we were looking for when we started our day, but the pieces made us smile and we couldn't leave without them.  They just made us feel good, which after doing some reading is exactly the purpose of the pieces...to make people smile (photos below).

W