Always travel with a nanny.

It was a glorious trip to Philly on Monday.  The ride to the airport with The Edward was great, the kids were awesome on the airplane and the train ride from the Philly airport to University City Centre was astounding.  Then we ended our travels with the infamous walk to the hotel. (I thought at one point Becky was going to cave and grab a taxi…but then Addison said, “It’s good to exercise.”) So we walked all loaded with luggage and kids.  For a couple of blocks the kids pulled their own bags (they are on wheels); then Tristan wanted to be carried, so I became the “bag boy” so Mommy could carry the little man.

The family walking to the hotel.  Who needs a taxi?

We were not able to get into the Ronald McDonald House again, so the back-up plan at the University Sheraton has been enacted.  (Thanks again to Deb for hooking us up with a great rate.)  We plan to call each day to see if RMH can get us in, but in the meantime we’re enjoying plush towels on the 18^th floor.  Oh, and did I mention they have an outdoor pool? Of course people in “D Climate Zones” (always get a geography lesson with Becky) don’t swim in outdoor pools when it is nearly October.  Wait! We do! Becky packed the swimsuits, so as soon as we hit the hotel room, everyone changes into suits and we’re off to the pool.  Then, Becky puts her toe in the pool, “Oh, that’s freezing.  Adam you take the kids in.”  Apparently, I have more “insulation” and as the man, “I can handle it.”  The kids and I swam for about 10 minutes with Becky sitting on the edge ready to wrap the kids in towels as soon as they emerged into the cool night air.

Tuesday morning was typical with the multiple pre-op appointments.  The kids were great during check-in, x-rays and while waiting to see Dr. Flynn.  Of course, when Dr. Flynn shows up in the room to discuss the important need to know items about the surgery, you end up with a conversation something like this: “Great to see (I WANT THE IPAD) you guys (NO, I WANT THE IPAD).  (GIVE IT TO ME) Tristan will have to have a second rod placed (NO-NO-NO) in his back for more (AHHHHHGGG, MOMMY!) stability.  We would have liked (STUPID) to have (MOMMY, TRISTAN SAID STUPID) waited until he was bigger (NO-NO-NO SISSY) but his curvature is even worse than when we first (DADDY, I’M HUNGRY) placed the rod last year.”  I think you get the idea.  You should always travel with a nanny, to avoid these types of conversations.   Anyone want to volunteer for the next trip?  (Insert smiley face here.)

If you did not understand the conversation from Dr. Flynn, Tristan will have to have a second VEPTR installed.  Due to the severity of his curvature and where it is, he will have to have another VEPTR that spans from rib to spine.  This is not as common, but the only option for a more stable spine.  The worry is not only the curvature of the spine, but that it is now starting to twist as well, and in areas that were problem-free last year.  Not the news we wanted to hear, but it is something that we will take to our Heavenly Father in prayer. 

Tristan's spine directly after the first VEPTR was installed in October of 2010.

Tristan's spine on Tuesday, September 27th, 2011.  Notice the degree of curvature again.  Dr. Flynn also drew where the second VEPTR will go.

We will report to the surgical floor tomorrow (Wednesday) morning at 8am.  We ask that you keep Tristan and Dr. Flynn in your prayers.  We are again concerned that there may not be enough extra skin to cover his back and that is a huge risk for infection.  We serve a great God who has blessed us in so many ways and know that He is hearing not only our requests, but those of you joining us in prayer as well.

God Bless You All.

The West Family

Time for Another Philly Cheesesteak

So, it’s time for another Philly cheesesteak, and more importantly another surgery for Tristan. We leave today for Philly, please pray for us as we travel and ask God to guide our footsteps along His path. We know that all things work together for the good of those who serve Him and we are expecting good things during this third surgery for Tristan.

Tomorrow (Tuesday) we will have the pre-op check-ins at the hospital. Tristan will have another x-ray, some routine blood work, a quick conference with Anesthesia and then a meeting with Dr. Flynn. We hope that it is all timely and allows for us to have some downtime on Tuesday. We want the kids to be able to take some time out for fun before the surgery on Wednesday morning.

We’ll post more, as we know more. God bless each of you for your faithfulness to Tristan and our whole family!

The West Family