Sunday, December 15, 2013

The closing of another chapter...

Beckett and I flew from STL to Phili on Tuesday.  I was a bit nervous never flying with Beckett solo and without taking his car seat on he plane with us which we have done every time in the past.  It wasn't so much that I thought Beckett would mis-behave...not to brag, but anyone who has met Beckett knows what a laid back and non-drama kind of boy he is.  He really has never thrown a temper-tantrum.  **hope I didn't just jinx myself in putting that in writing**  Anyways, my concern was more the germs.  The last thing we ever want with a trip to Phili is to get all the way there and end up sick and not to able to get done what we came for.  And when your are by yourself it's harder to shield those germs as you are having to do everything instead of one person sanitizing things and the other holding Beckett until things are clean, etc.  And YES I am that person who travels with Lysol spray cans and wipes.  I spray down EVERYTHING...airplane seats, walls, windows, trays, rental car interiors, our clothes after getting off the plan, carpet and light switches in hotel rooms...EVERYTHING!!!  And the hand sanitize...let's just say we bring a full size pump bottle along with us.  As crazy as it sounds I love to see peoples reaction to my cleaning...I'm sure they think I'm OCD, but if they only knew the reason behind the madness.  A perfect example of why you should never judge someone or make assumptions about them by their actions alone.  Everyone has a story and a reason for their madness.

Anyways, Beckett was a gem of a traveler and once in Phili we got our bags, caught the rental car bus, got our car, and made out way to a nearby store for some essentials (milk, snacks) before heading to the hotel room. Of course Mr. B decided a nap wasn't for him this day and so we stayed entertained walking through the hotel atrium, checking out the pool, throwing coins in the water feature **I think I spent $5 on this activity** and later that evening we went to a nearby Ruby Tuesdays for dinner.  Then it was an early to bed from a long travel day and no nap.

Watching the planes take off and land in STL before our flight 

Such a big boy!

It's really hard not to want to put the window shades up...and down...over and over again :-)

Thursday AM Beckett and I caught the continental breakfast offered by the hotel and then decided to go swimming to kill some time.  Beckett loved it and as you will see in the pictures below, was not thrilled about having to get out of the pool.  We had a lite lunch in our room and then headed to CHOP for our clinic appointments.  At 1pm we saw ENT.  I can not say enough how much I LOVE THIS GROUP.  They are seriously like family to me.  Rose Mary Patel the Nurse Practitioner is so warm, caring and knowledgeable...the epitome of what nurse should be.  And Dr. Jacobs treats us like family...greeting Beckett and I with hugs and kisses and is SO incredibly intelligent and really the top-notch expert in what he does.  You can't ask for anything more.  After the ENT appointment, we headed to see Dr. Piccone in Pulmonology.  Again, talk about a nice guy with tons of expertise!!!  Both appointments were uneventful and were just kind of a check-in prior to heading to the OR on Friday.

Waiting for our next appointment and trying to stay entertained

Beckett loved watching the cranes and construction work at CHOP
We finally left CHOP around 3:40pm and stopped and grabbed a pizza at a nearby Pizza Hut for dinner. We ate that and then did our usual entertainment activities (Disney movies, walks, more coin tossing, etc.) at the hotel until about 8pm when we picked-up Ryan from the airport.  Then it was off to bed as we were the first case for the OR tomorrow which meant a 6:00am arrival time.

We left the hotel around 5:30am for CHOP and checked right into pre-surgery waiting.  It's crazy cause you would think that being winter and close to Christmas the OR wouldn't be very busy, but this time it was actually busier than I've ever seen it.  Thankfully a little after 6:20am we were called back to pre-op and then right about 7:30am Beckett was taken from Pre-op to the OR.  Ryan walked Beckett back this time and said he did very well.  We moved to surgery waiting and probably just about 20-minutes later Dr. Jacobs came to find us in the waiting area with the results.  He said Beckett's airway looked great!  Sizing at a 4.5 which is normal **feels good to use that word** for his age and size.  He advised that we could stop his prevacid med which he has been on as a part of all his surgeries **Beckett is now not on ANY meds!!** and the best news we would just need to come visit for ANNUAL check-ups, but no further follow-ups at this time.  YAHOO!!!!!  Since April of 2012 we have made 7-trips to Phili and as much as I LOVE CHOP, I will not miss the stress of flying and and expense of these trips.

Pre-op rocking and watching Mickey Mouse Clubhouse before heading back
Beckett Snapped this pic of Ryan in his "bunny suit" all ready to walk him back to the OR.

Beckett's face says it all
I think Beckett is trying to tell Ryan which door leads OUT of the hospital!
Post-op sleepy
Once we were cleared from post-op we headed back to the hotel where we stayed until close to 1pm.  Beckett slept most of that time which was good.  About 12:45pm or so we headed to return the rental car and then to the airport.  Once through security we had about 1.5 hrs to kill before our flight so we ate and shopped and walked the terminal :-)

Live Christmas music in the terminal - so festive!!

Beckett with his new custom Eagles hat and airplane

All smiles on the plane

 Despite an impeding snow storm in STL to made it in.  A quick stop at Mimi and Papas house to eat some dinner and a bath and PJs for Beckett and then we hit the road back to KC.  Unfortunately we had the white knuckle pleasure of driving through that impeding snow storm, which made our drive home a bit slower than usually, but shortly before mid-night we arrived home.

As we started our drive out of STL, Ryan said to me...."well...we did it..."  Yes we did.  It was a long, trying, heartbreaking and many, many times miserable road, but we made it.  Beckett made it.  Beckett's odyssey has taught me so much about life.  Not taking for granted the miracle of life and being given a healthy child - I think so many people don't realize what a blessing this is, but we do.  Not taking for granted how fortunate we are to live in the US, have access to top-notch medical care and treatment.  Had we lived elsewhere Beckett probably wouldn't be here today.  Learning to ask for help **I am terrible at this**   Being humbled by the goodness of people and organizations to give whatever they could to help us.  How to continue on when your heart is broken, your eyes are heavy and all odds are stacked against you. The power of prayer, positive thinking and keeping the faith.  To never give up.  And so much more...  

But ultimately I was shown the incredible strength of LOVE.  If I could contribute Beckett's success to one thing it would be love. The love of our families, friends and complete strangers supporting Ryan and I.  Ryan and I's love for each other and together our love for Beckett. 

Beckett is a result of LOVE and with LOVE all things are possible.


  1. This is the best Christmas gift ever Natalia! Thank you for sharing this journey with all of us these past 3 years, and for showing us what the real meaning of love is. Enjoy your holiday season with your miracle boy! Hugs, Aunt Deb Israel

  2. This is do beautiful, Natalia! I am so happy for you guys. I can't even imagine how hard this journey has been, and I am so so glad God is giving you relief and rest! I love you!

  3. Such a wonderful way to enter into the Christmas season. We are so happy to hear Beckett and your family are opening up a new chapter of life!!!