Weekend of Ups and Downs

Whirl wind of activity this weekend. Friday Maeve came to visit. She and her mom also came down to visit. They braved the turnpike together for a girls only adventure. They hit the horrible Baltimore/DC friday rush hour and a rain storm. But, when they arrived, it was a lift for Nick. They treated us to a chinese dinner. Yum. Nick and Maeve had time to catch up. On Saturday Ross and Dad arrived for a visit. It was so nice to see them. We went to Brian's Boss' house for lunch and a relaxing time sitting by the pool. It was so nice to not look at the same four walls. That was all the ups. Then we got back to the House and proceeded to have multiple pole changes. We ended up having 6 during the day and 4 in three hours. We are only suppose to get 3 in a day. With the rapid pole change readings comes lots of pain. Things moving very fast and muscle aching. Up in the middle of the night waiting for the pain meds to kick in. Sunday, we are getting it back under control. So far it is 11:00AM and we have not had any changes. We are taking it easy! As of this morning we are 18 millimeters. Almost 2cm. We are getting there.

We feel so fortunate...

Nick and I have met so many special people at the Hackerman Patz House. People who all have a story to share. Many families have traveled great distances to be helped at the Institute for Advanced Orthopedics. The families we have met are almost all from somewhere in the United States. But, families from all over the world have come and stayed at the Hackerman Patz House. Nick and I feel almost like we should not be here because we could drive the distance in a day. But we are so thankful to be close to the Hospital, PT, pharmacy, and our doctors. We are also thankful that Nick only has to lengthen 5 cm. Some kids here have lifts as big at 10 cm on their shoes. Some of the parents here were told they should have their childs limb amputeed because there was nothing to do for them. Some how these families did some research and found out about Drs Paley and Herzenberg. They were seen and are being treated. Limbs that were supposed to be amputated have been fixed and lengthened. Parents talk to you and get choked up just thinking that they might have missed out on watching their child grow up walking and running on their own two legs. What would they do if they had gone through with the plan doctors presented to them. We have heard of how Dr. Paley travels the world meeting families on the tarmac of airports to evaluate children. He takes diagnostic equipment with him to see if he can help. He is know as the Miracle Man. What we thought was a big deal, turns out to be a walk in the park compared to others. We only have to stay in Baltimore for a few weeks not months. We only have a few cms to lengthen. We only need this one big surgery. Not the 13 one child has already had. Our lives have been touched by these people and their stories. Some day when Nick is healed and pain free we hope to pay it forward. Maybe we can spread the word, reach out to others, volunteer or be part of the center that I think is starting up in Pittsburgh. Pay it forward in a way to say thanks.

June 26th

Today was a busy day. We had visitors from Pittsburgh. Nick's covenant group came to lift Nick's spirits. It was so nice to see some familiar faces. Nick was very very appreciative of their efforts. Mrs. O and Dale braved the 8 hour round trip with four high school sophmores. (Are they nuts?) No they are very thoughtful and caring. Of course no Church youth event could not be complete without pizza, so we ordered lunch to be delivered. The meal was topped off with a "Get Well Soon Nick" cake. Nick visited, opened presents, and of course played yahtzee.

Later in the afternoon there was a party for Sean and Isabella who will be going home tomorrow. They both have finished their lengthening and have been staying at the Hackerman Patz house since April. It was fun. They also had cake and we watched the adults dance the Macaraina (sp?) We had to leave early for our PT evening appointment. Once again we managed to get dinner just before eight. Oh well, I am starting to win the battle with the wheelchair when we go venturing.

June 25th

Today we had a nice visit from David, Brians boss. He brought some interesting books for Nick to read and some snacks to keep us going. It was nice to have company. Of course we played some Yhatzee. This is our new favorite game. We sit on the porch and battle most afternoons. Then it was off to physical therapy. Today we got the tough therapist. She runs the department and means business. But, Nick stuck with it. Still movement is good. We heard a few physical therapy jokes. "What does PT stand for..... Pain and Torture" "We aren't really called Physical Therapists but Physical Terrorists" Ha Ha. Nick wasn't too sure if that was funny or not. At dinner time, we had a visit from International high school students participating in a ten day seminar at John Hopkins University. They came to see the Hackerman Patz House to learn what a place like this is for families of orthopeadic surgical patients. There were students from all over the world. Holland, The Netherlands, Canada, Middle East, Bermuda, and more. It was great for Nick to be able to talk to other students his age. They seemed releived to be able to really ask questions to someone who could answer them. Many of the kids in the house are little kids. The boy from The Netherlands did not really know what to talk about to Nick. Nick knew the world soccer tournament was going on and asked him what he thought about the games. That really got the boy going. Even though Nick really wasn't that interested in soccer. With all the excitement we missed dinner. So we shared PB&J in the room.

Thanks for all the comments. We love to read them!

June 23rd

Every day Nick does better and better. Today was his first physical therapy session. He did great. They were pleased with the movement he was getting with his leg. As of today we have 6.0 millimeters of new length. We are getting use to the monitor device and not so frustrated.

We ventured out into the world today. loaded Nick, crutches and his really big wheelchair into the car to head to Trader Joe's for some fruit and veggies. Got Nick in, got the crutches in, and then it was somewhat amusing. Had to laugh at myself especially when another parent came running to my aid. All went well until I got the chair stuck in the back of the car. Not far enough in and not coming out either. Took a deep breath and suddenly all was good again. We found Chik-fila to pick up dinner. Then on the way home the most beautiful rainbow came out in the sky. It was a rainbow that you could see from side to side. We chased it all the way back to the Hackerman Patz House and took some pictures with the Hospital and the rainbow. Nick and I both think that it is a sign. Either that we came to the right place or that we have a lot of friends back home thinking of us.

Great Place to be

We are so thankful for being at the Hackerman Patz House. Yesterday Nick and I sat out front of the house playing yhatzee. We watched the little kids having wheel chair races in the parking lot. Nick's competitive nature almost got him out there too. I think seeing the other youngers kids doing well has been a huge lift to Nick spirits and recovery. He has been wheeling himself around the house instead of waiting for me to give him a push. Bit by the bug of if they can do so can I.

Today is our first appointment with Physical Therapy. Hope all goes well.

Just you and Me!

this morning we all got in the car to take Dad to the airport. We made it. Nice to see Nick can be a little mobile.

Don't worry Nick we can do this together. Every day will get better. You will get stronger and the pain will get better too.