Home Sweet Home....

We finally are home. It feels so good to be in our own home! The ride was a little rough. We had to make several pit stops and I think each one was resulted in a pole change. So far we have five. That is one more than we are supposed to have. So, for the rest of the day Nick will just relax infront of the large HD tv. Sure did miss that little item while in Baltimore.

Nick hit a milestone today. He hit the halfway mark. He has 25 millemeters of new length. That is 2 1/2 cm. It is downhilll from here. I wont be smooth sailing but we are encouraged that we can see the light at the end of the tunnel.

Happy 4th of July to everyone!

Out and About...

Today was Nick's last PT session with his favorite therapist, Jeff. He was moonlight to make some extra cash for his upcoming wedding. He joked alot with Nick and gave us ideas of where to go for dinner. Nick has Erin tomorrow for his last Baltimore PT session. Nick thought Erin was tough until he experienced Mark. The only time I heard Nick Moan and try to hold back a scream he was with Mark. Who knows what our Pittsburgh therapist will be like. That starts bright and early Monday morning at 9AM.

Tonight we ventured to the Inner Harbor for dinner. We hopped into the car. Well, loaded slowly and methodically. We went to the ESPN Zone for dinner. It was nice to sit and relax and celebrate that we are going home. Nick and Ross enjoyed watching six baseball games all at the same time. Even the Pirate game was on one screen. And they were winning. Imagine that. Nick really enjoyed the walk back to the car. He loved the stone walkways and all the bumps in his wheelchair. I think the wood plank foot bridge was his favorite. Just as the pain meds were starting to wear off. He wont soon forget Baltimore.

Good News!

We got great news today. According to Dr. Herzenberg, Nick is doing great. He has 2cm of length already. X-rays show good bone healing material. He even said that maybe he would be done lengthening in two weeks. Alot faster than we thought and great to hear. It seems the majority of the pain comes with the lengthening process. I am not the doctor but in my eyes, that means less pain. Nick is definately looking forward to that. At first we were only supposed to get a small amount of growth each day. Now we have to look for too little. Too little could result in the bone consolidating too soon and need to be rebroken. We don't want to do that again. More good news, at PT today they said that Nick is doing very well. He has a lot of movement and flexibility still. Finally, the best news of the day. We are coming home!!!!!!! Yep, we will hit the road on Friday. We are going to finish the week of PT. We have PT at 4 on Thursday. Instead of driving at night. We will hit the road early Friday morning. Oh, yah. They are also having a BBQ here at the house with Chocolate sno-cones. Nick promised Amy, the house coordinator, that he would have a chocolate sno-cone. Actually in Baltimore they call them snow-balls but you know, same thing. So we have to wait until Friday to leave. Thanks for all the well wishes and prayers! They are working.

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!