Monday, August 6, 2012

Notes for LTML and Caring bridge:

August 5, 2012

It's 6:25 pm, in flight, and the captain just turned off the “no electronics” sign. Jacob and I are finally on our way to DCA. Our day started entirely too early in St. Pete this morning. After our busy weekend, it was hard to get up to drive home, especially since we were headed home just so we could fly to DC for Jacob's surgery. TD has to go back to work and Brie has to take an Algebra EOC exam tomorrow. Just so we’re clear, I'm extremely nervous right now. We are in extremely thick clouds and pushing through turbulence. Our flight was delayed an hour due to bad weather and prior to departing, we were informed that we had to get extra fuel in case we had to fly around storms. Awesome. Jacob is a happy guy right now, though. His fellow Boy Scouts, Leaders and their families all came to the airport to wish Jacob well. They made this incredible poster for Jacob, too. Papa Ken, Nana, Pop Dana, TD, Brie, Gavin and me added to the group, so Jacob had an impressive mob of fans. My heart is truly warmed by the abundance of love we have received for Jacob. These are the moments that remind us of our foundations.

[A little while later…] Whoa. Rough landing. We survived and are waiting at TGIF’s for dinner (thank you, Papa Ken & Nana). Jacob is talking on the phone, and yes, he is still reliving his awesome fishing trip from Saturday. He and I had a great conversation about his little send off gathering at the airport. He is on cloud 9. Everyone coming to see him was really special. I printed the wrong shuttle schedule (the 06/15/2007 version) so the 9 pm bus to NIH that I thought we would be on doesn't exist. Oh well. We will be riding the Metro Subway. Again.

Hello, beautiful Children's Inn. Finally, after a four hour van ride from St. Pete to Tallahassee, the a vehicle change because our van broke down AGAIN on the way to the airport (if you can believe that), then a 2 hour flight that started an hour late, a 90 minute subway trip and lastly a fifteen minute walk from the subway to the Inn (because campus shuttle was shut down for the night and security isn't available), we made it. No biggie right? It's only 11 pm, lol. We did see a beautiful doe on our walk and we have a huge room with two big windows and a nice view of the hill. Too bad tonight will be our only night sleeping here.

August 6, 2012

Day before surgery.

Yesterday, when dressing for the airport, I put on my little pieces of love and hope. My Beads of Courage bracelet, blue CTF Cure NF2 arm band, my family birthstone ring, memory necklace and my necklace that's pendant reads, "The most beautiful stones have been washed by the waters and polished to brilliance by life's strongest storms." Jacob is a jewel for sure! At the airport yesterday, one of Jacob's Scout leaders gave me another precious piece to cherish, a "May Prayer Strengthen You" coin. I'm sure it has been held during prayer and I will keep it close to my heart to remind me of God's love and strength and our family and friends praying for us at home. The outpour of support Jacob and our family is receiving is amazing. God is working through so many people right now and I am in awe.

Even though I did phone admissions over a week ago, it was our first stop this morning. As always, everyone was very nice and it was painless, signing a few pieces of papers. We went to 1 Northwest and Jacob was admitted into his room, 1-1664 NW. We had to do a looong intake and a tech came in close after and took Jacob for his height and weight. Jacob had his port accessed and labs drawn, the usual. Dr. Asthagiri came in and talked to us, as did Dr. Yong. Jacob was able to ask all of his questions. I will write about our conversation later when I have my thoughts better in order.
After Jacob had lunch, we went to his pre-anesthesia appointment at 1:15 and then had his chest X-Ray. Now we are waiting for the doctors to say it is ok for Jacob to go over to the Inn to "hang out".

I am happy to report NIH has a new wifi system and that I can use my stuff! Yay! That makes Jacob and me both very happy. Jacob loves his new iPad.

To be continued :)


  1. oh man, Connor will also be hyped to know about the new WiFi system there :0)

    1. Tammy, thank you for always reading and commenting on my posts!!
      Tell Connor the new wifi up at Bldg 10 works pretty good!!!