Christmas was great this year. Not only did we get to celebrate the birth of our Lord, we also got to have fun watching the kids open up their gifts. It was very magical watching the two of them go at it. Addison was like a hurricane, non-stop paper flying in the air. Tristan was a little more OCD and would immediately put each section of wrapping paper (no matter how small) into the trash bin. Tristan’s process might have taken longer than Addison’s, but they each had genuine fun.
 |
| Becky and Tristan having some fun! |
We have survived the turn of the New Year and with that brings a sense of “what next?” Tristan had his first appointment locally since November on January 13. He had his typical dose of radiation with several x-rays taken that reveal the VEPTR is doing great. He is tolerating it well, and his growth has not impacted the site and surgery will not have to be earlier than expected. The films were forwarded to Dr. Flynn in Philadelphia and his review was the same as our local doctor (Dr. Zaltz). This means Dr. Flynn will do Tristan’s first adjustment surgery on April 13, keeping in line with the return to CHOP (Children’s Hospital of Philadelphia) every six-months. So now it is time to begin planning our next trip to Philadelphia. (Anyone know of an airline that can fly a four-person family round trip for only $100.00?) :-)
The tricky part of the next flight will be convincing Tristan that flying is fun. The other week we took a trip to the Henry Ford Museum and we went through the airplane exhibit. When we went to go into the “modern style” airplane, Tristan broke down and started crying, saying he did not want to go into the airplane. We believe that he is associating airplanes with Philadelphia and having surgery. Yikes! We may try to fly somewhere before April (Florida sounds good) and have some fun, so we can show him that not all flights lead to surgery. Poor little guy…we knew it would impact him, but we didn’t know just how much.)
Overall, Tristan has been doing great and has been pain free for months. He is in swim class with his “sissy” right now and absolutely loves it! We did have one little scare the other night as Tristan was pointing to his back and crying. He hadn’t shown any signs of pain with his back for over two months, and it really freaked us out…immediately we began to think something was wrong. We took his gel pads off to see if he was bruised and there was nothing. We were hoping that it was not a major internal problem because with the pads off he was even more upset. He finally threw himself back into the cushion on the chair and proceeded to sway side-to-side rapidly, pressing his back into the cushion. This helped us solve the problem quickly, the surgical area was itching and so we taught Tristan to say the word “scratch”. All that fussing turned out to be an “itch”, Becky says he’s just like me, which is a good thing, right?! After lightly scratching for several minutes, the alarm passed and everyone calmed down. Whew!
God Bless you all for your continued support and for checking in on our “little man.” We thank all of you who have shown support for Tristan with prayers and well wishes. The Hand of God is certainly guiding us all through this incredible journey. Please let us know if we can keep you in our prayers for anything and I promise to update the blog once we get closer to Tristan’s surgery date in April.
Until then, God Bless you in this wonderful year to come,
The West Family
