Richard, Evan and I arrived in Philadelphia yesterday evening. The drive was uneventful and Evan, as always, was the perfect traveler. He talked, he sang, he laughed and ate cookies. He never slept of course (he never does when we are traveling. . .too much to take in), but we enjoyed having the opportunity to spend some good quality time together with just the three of us.
We arrived in Philadelphia around 7 pm and checked into the Ronald McDonald House. We normally stay at the house in Camden, New Jersey, but were able to get into the Philly house (just a mile away from Shriners) this time around. This house is fairly new with sleep number beds in all of the guest rooms as well as TV/DVD players. It even has a "mini movie theater" which Evan thinks is pretty neat. It is nicer than most hotels I have stayed in. You could say that we are living the life here in Philly!
We went to bed last night with news of a Nor'easter (big storm) heading our way. The projected snowfall for this area was 6-10 inches. We were very grateful that the storm was coming from the south and that we didn't have to drive through any of it. We woke this morning to 2-3 inches of snow and a windy and frigid day.
After breakfast, we headed over to Shriners for some preop. testing. The labtechs had not made it into work yet by the time we arrived so we headed upstairs to visit with our friend Tracey. Tracey was the first person with arthrogryposis that I talked to after we made the decision to bring Evan into our family. She was (and continues to be) a wonderful source of information and support. She has been through so much in her 21 years of life, but she always has a smile on her face and words of encouragement for any and all who need them. She and Evan have the same wonderful doctor (and of course, she was the one to point us in his direction) and she is currently being treated at Shriners for limb lengthening and clubbed foot (using an external fixator). She has been in the hospital for months and is such a trooper. We love visitng with her whenever we are here.
We also had the chance to see our friends, the Eberhards, also from Ohio. Their son Gabe also has arthrogryposis. He had the same surgery that Evan is having tomorrow at this time last year. He also had severe flexion contractures in his knees. Since late July, Gabe has been in external fixators (large metal frames) to straighten his legs (Evan will be doing this proceedure later this year or early next year as well). His second fixator was finally removed several weeks ago and he was there to get his cast off this morning. His legs are straight and look amazing. He got his new KAFO's today and will be getting his first pair of shoes (he is 3) this afternoon! After Evan had his blood drawn we were visiting with the Eberhards in their treatment room when the orthotist walked in with a 3rd brace. When she walked in, Gabe, who already had a brace on each leg looked at her and said, in his sweet little voice, "But I don't have another leg!" Gabe is our hero and we think it is such a blessing for Evan to have so many friends who are just like him to help him get through the tough times.
Evan had his blood drawn. He cried while they were taking the blood and was very happy when they were done, but he did great and we told him that he was very brave. He was also measured for a new wheelchair to use after the surgery.
Once we were done at Shriners we headed back to the Ronald McDonald House for lunch and some brownie and ice cream sundaes, then headed downstairs to the "movie theater" to watch Rudolph the Red-nosed Reindeer. It has been a wonderfully relaxing day and we are grateful for this calm before the storm.
Evan needs to be at the hospital by 7 am tomorrow morning. He will be admitted at that time and will be hooked up to his IV. His sugery (bilateral femoral osteotomy- they will be cutting through the tops of his femurs, rotating them and securing them with metal plates) is scheduled for 1 pm and should take between 4-6 hours. He will likely spend the first several days of his hospital stay in the PICU where he will be on a morphine drip for pain. He will be in a petrie cast (long leg casts with a stablizing bar between them) for 6-8 weeks following the surgery. His projected discharge date is Saturday (this will depend on how well he is tolerating pain) and we hope to drive home on Sunday.
We greatly appreciate the outpouring of help, support and prayers that we have received from so many. We are especially grateful to those who are caring for our other children while we are gone (Nana, Big Dawg, Keenan, Chris and Haley, Dave and Stacey Kirchner, and Grandma DD), for those who are providing meals for the kids while we are gone, and for those who have remembered Evan and our family in prayer. We also wanted to extend a special thank you to Michelle and Kayla (Kayla is Evan's best friend). Kayla came to visit on Saturday and brought gifts (stuffed animals) for ALL of our children. It brought tears to my eyes that they remembered each of the kids because they are all effected during times such as these. It really meant a lot of all of us.
We appreciate your continued prayers and promise to update as soon as Evan is out of surgery and settled tomorrow evening.