Trip out east

In less than her 1 wee year of life, Lucia has experienced so much and been on many adventures!  Our trip east to Philadelphia, The Children's Hospital of Philadelphia/CHOP, was eventful, enlightening, uneventful, and nice, all at the same time.   On Friday, Lucia had her fourth swallow study and it was extremely eventful!  A swallow study is a live x-ray snapshot of her swallowing food or a bottle.  A speech pathologist and doctor 'study'/observe to be sure it goes down the right 'pipe'.  Boy has little Lu come a long way!  She did not aspirate during the study, and therefore we are allowed to 'proceed with caution', but nevertheless PROCEED with giving her a bottle orally.  So we have been watching our baby drink a bit of a bottle during each feeding for the past 4 days and its wonderful!  Hallelujah, Hallelujah!!!  She is improving so Jason and I feel strongly that someday she will not always have her little button, feeding tube, yay...LU!

The other specialty appointments were the enlightening and somewhat uneventful part.  I think Jason and I expected someone to say-she seems mild, or she seems moderate or she seems severe..but they didn't really do that.  In so many words we think they pointed us to moderate and typical PKS child, not great and not horrible. I had so many thoughts going through my head every time a specialist examined her...I could feel myself being nervous for Lu, feel me trying to transfer my energy and strength to her, to help her be her 'aware and strong self' as she can be, feel myself wanting her to show them her best, my heart raced and I would forget to breath and blink.   But then I would remember that I'm the nervous one NOT her! She is totally and completely relaxed and herself.. as we all should be.  Its not a test, its an observation of a little girl with a special condition.  And that little girl is someone that just wants to be herself, look where she wants and is able, hear what she can hear, move when she wants to move, and be loved by and love those around her.  So, the genetics team spent time with Lucia and asked Jason and me questions...by the end they had shared that PKS is a very tough diagnosis to receive..all the kids are different, they may surprise you...love them, continue to teach them as they don't stop learning, and be pleasantly surprised if they are able to do certain things.  Somewhat vague and uneventful but good.  At the end of the appointments we were happy we went.  They are the specialists, and the only PKS specialists out there, so any feedback is good...and if we have questions or her doctors have questions, their team "is a phone call away".  They were very nice and told us to keep doing what we are doing for Lu.  I learned again that Lucia could give two hoots about the prognosis...she is a girl named Lu that is here for the present moment and here to spread her light in her simple, beautiful way!  Love you so much bird.

Geneticist Dr. Ian Krantz

The rest of the weekend was so much FUN!  Trip down memory lane through Lehigh University, Jason's college days,  quality time and stay at the Killea's home in New Jersey, beer garden with the Curley's, dinner in NYC with Jennifer Leach English and her little family, and back home again.
The highlight of Jason's trip was a moment with Lucia on his lap watching his friend Brian play ball with his 3 year old son, Bowan.  The playtime struck a cord with Lu and she giggled several times while watching the boys horse around.  Daddy's little girl...so sweet.

Brian and Jen Killea

Lu and Bowan Killea

Gavin Curly and Lu

Lori Curley and 10 day old Winston

family bier garten shot

waiting for ferry to NYC

precious Araceli English holding Lucia

There is no doubt that Lucia left her mark all over.  At CHOP they photographed her with our permission, she traveled by plane, we rode a train, ferry, drove a car, took a cab, and sprinkled her light amongst friends and they showered us with their light- SO MUCH!
Thank you Brian, Jennifer and Bowan Killea for a great weekend, thank you Curley's for taking the time, even with a 10 day old new baby, Winston.  Thank you Jenn Leach, Jeff and sweet Araceli for the night out and the sweet gifts!  Thank you Dr. Ian Krantz and team for researching and studying PKS to someday find a cure or a way to stop the progression.  Thank you also for some early birthday presents for Lu- Ana Redmond for Lucia's cute outfit above, Cayla for the thoughtful books and visit, Zapata's for the musical toys, Lizzie and Lucy for the personalized crafty gifts, and PKS donation.  We'd like to say good-bye to furry friend, our next door neighbors fuzzy dog, Zena- 15 years old.  She had the fullest and prettiest coat!  Thank you to my brother Andy for watching our dogs while we were away.  
We would also love to introduce the newest family member, born to Jason's sister Ashley and her husband Lee Hunt- Taylor Ashlynn Hunt- a baby girl born on Saturday night!!!

Taylor Ashlynn Hunt 4-21-12 6.5lbs

Lucia now has another cousin to grow up beside.  And our Little Lu will be 1 year old in just 2 days!  We are having a birthday celebration on Saturday..if you are reading this and would like to come..please do!
Tweet Tweet...Lu is so Sweet!  Now Lu, get ready for a tasty birthday Treat!