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.

June 21st, Home Away from Home

Nick got released from the Hospital today. We arrived at the Hackermans Patz House. What a wonderful place to stay while we are away from home. This place is amazing. It is really nice and everything in here has been donated. Video games, big screen TV, furniture, etc. There is a kitchen for light cooking, a grill to use if you want, a great gathering room, patio. Each room has a small fridge, and private bathroom. We are sharing with house with families from Nebraska, Iowa, Texas, California, Ohio, Tennesee, New York, and Florida. I feel like a light weight for only having to drive for four hours. It has been nice to meet the other families. Great comfort to be able to talk to another family about what to expect for our recovery. there is another boy staying here who also has the ISKD. Hope to find out if his monitoring device works any better than ours. It is frustrating when you are supposed to get a reading and it just wont even after trying for 30 minutes non stop. Glad to be in a normal room. I am looking for a good night sleep. Those pull out chair conversion cots are not good for sleeping.

Posted by Nick's Mom

June 20th

Written by Luise

Tough night. After a day of activity and no pole change readings from the ISKD Monitor, suddenly several changes during the night. Four pole changes in five hours. We were all a little scared not knowing if this was a malfunction or okay. We read all the materials about how there should not be any changes in the first few days. Luckily, the doctor came to check and reassured us that all was okay. He took the time to check all the incisions and they look great. Nick might have been a little happier if they had shaved the hair on his legs before placing all that tape all over him. But, that pain is minor compaired to the daily surgery pain Nick still has. We tried percocet and that was no good. Tried Vicadin and that too was also no good. Finally we got Tylenol #3 and that at least does not send Nick for a loop. Does not work the best for the pain but Nick can tolerate the pain to be able to stay with us and not be wacked out.

Day One

Nick is so much better today. Up and talking. The physical therapist got Nick up early to go to the community room. There he enjooyed playing some video games. Beat his dad at Mario Golf! Took his mind of the pain. We got his crutches and a wheel chair. As soon as the epidural is out we will be ready to get moving.

We found out that we will have a place in the Hackermans Patz house to stay. They is next door to the hospital and very nice. Lots of kids going through the same thing. Should be great for moral support.

Surgery Done

Posted by Luise

Long day. Arrived at hospital at 6AM. Nick got ready and finally went to surgery at 8:35. We did not get called back to recovery until almost 2PM. Dr. Herzenberg was very happy with the outcome of the surgery. He ISKD device is in place and seems to be operating properly. Just from today we already have a few millimeters of new length. Nick did well with the anesthesia too. So, for now all seems to be going as expected. Nick is now in his room still groggy and in and out of sleep. They are trying to get the pain medications just right. He has an epidural and has had several small doses of morphine.

Thanks for all the prayers. They worked!

New Beginnings

Today is the start of the rest of your life.

I love you

Fitting for a brace....interesting

We arrived in Baltimore to have Nick fit for a brace. This is just in case he needs it. Well, you should have seen Nick's face as they covered his leg from hip to toes with a plaster cast! We were wondering what was going on. Turns out they were making a model of Nick's leg that could be used to fit a brace too without Nick having to be involved. Being in pain after surgery this would be an easy way to get the brace if needed.

As we looked at the leg standing up, the technician said, " all we need now is a lamp shade". Funny, I think we all remember the Christmas movie classic, A Christmas Story.

Hope all goes well tomorrow. Thank you for all of your prayers and well wishes.

Heading to Baltimore June 17th

Tomorrow we head to Baltimore for the surgery. We will leave at 9:30 so that we can make the 2:00 appointment at Sinai. Nick will have to be fit for a leg brace. the brace will be used if there is too much movement and the ISKD is extending too fast. After that we will check into the hotel and head out for a nice dinner possibably in the Inner Harbor. Then it will be nothing to eat after midnight and surgery 7:00AM on June 18th.

Nick has spent the last week cramming as much fun as he could into his schedule. He managed to go to Kennywood twice, the movies, birthday party at a club, end of the school year party, golfing, and swimming. But, now we are ready. sent off with well wishes from family, friends, and neighbors. Nick has enough candy and munchies that he should come back to Pittsburgh at least 10 pounds heavier. :)

ISKD

Internal lengthening rod will be used to lengthen.

June 10th Pre Op Visit

Written by Mrs. C.

Today was the pre-op visit. We found out yesterday that Dr. H. wanted to see us today instead of waiting until the day before surgery. So, we hopped in the car. Mom, Dad, and Nick. (Nick did not want to miss the last day of finals so he asked if he really had to go.) My response. Of Course, it IS YOUR LEG!

Although the ride was long and boring. (Four hours up and four hours back) We took it all in stride. A glimpse of the many more trips to come this summer. Ugh!

We talked to Dr. H and his assistants. We talked about two methods of lengthening that might be used. One, the use of a ISKD. Internal titanium rod inserted into the femur. This method is newer and less noticeable. Nick will only be on crutches. They have to make sure his knee is stable enough to use this device. From the initial exam, it looks like this is a strong possibility. Method two, is the use of another internal rod that is attatched to a metal external fixater. This is very stable but will cause more scarring and can is very noticeable. The external fixater is a metal cage that circles the leg and is attatched with pins to the femur. The doctors have a meeting every Thursday to discuss upcoming surgery cases. They will meet and decide what procedure Nick will get. It is comforting to know there is a team of doctors, world renowned, making the decisions together.

We will find out some time on Thursday what method will be used. Then Nick will try to cram as much summer as he can into the next five days.

Getting Ready

June 18th is approaching fast. I have had my pre-op physical and blood test. All looks good and I am ready for surgery. I have all my paperwork completed and now all I have to do is wait.

I am a little frustrated that the summer will be cut short.

I am playing as much golf as I can until my surgery.