August 19, 2008 Check up!

Yesterday we traveled to Baltimore for a check up. Nick has been working very hard this summer at his Physical Therapy sessions and it shows. Nick has regained full range of motion in his leg. Dr. Herzenberg is very pleased. The bone growth is going well too. The doctors looked at the x-ray and determined that Nick is ahead of schedule. He is now down to only one crutch. One crutch for one month and then NO Crutches!!! Back to see Dr. H at the end of October. As Dr. H left the room he said that he was please with Nick progress. And while in the doorway, he stopped looked back and said, "I am proud of you Nick". That made the long trip to Baltimore worth it.

Nick was given the go ahead to do some non-contact activities. Yes, Golf is on that list. He is planning to hit the links today. With Dad as the golf cart driver, Nick will finally get the chance to swing a golf club! Gotta start getting ready for the 2009-2010 golf session.

Doing Well!

Hello, The lengthening has stopped and now the bone is healing. With this new step, Nick is completely off the pain meds. Well almost. Nick still takes a tylenol, over the counter variety, just before Physical Therapy. But, his spirts are high. Last weekend we went out and bought new shoes. Two pairs. And they did not have to go to the shoemaker for a week. Nick was able to put them on and wear them immediately. what a milestone!!!!! It truely is the little things in life that really make us smile the most. Have a great day.

The monitor has finally stopped.

Although the Doctor told us the lengthening was considered done, Nick ended up having 23 more pole changes over the last five days. We thought it would only be 10 or so. Surprised when they keep coming. Especially at the 8 on Saturday. Yes, that causes us to call Baltimore to ask what was going on. Unfortunately for us the doctor on call was not much help. His only real advice was, "If you have seepage from the incisions please come in. Otherwise you are okay. it should be done, don't worry!" Easier said than done. Oh well, that seemed to be the last push. Nick has not had any new changes. Now, I think we can officially say that the lengthening phase is complete. Yeah! Still need to work on the movement and flexibility. PT three times a week. Joe David, do your magic!

Great News!

Nick is almost done! Well according to the doctor, he is done. The surgery and lengthening is considered a success. At Tuesdays appointment Nick had gained 4 1/2 cms in length. If he would stop now that would be okay. His legs and even and the hips are straight. If he continues to get a few more mms. that would be fine too. So, we are monitoring to see if we can get to 5cm but not worried anymore about moving too much and causing pole changes. Nick is more at ease and happy with the results. It has been so amazing. All the length in one month. Nick is continuing with PT and exercises to regain his leg strength and flexibility. Next appointment is in 5 weeks to check on the bone density and hopefully pitch the crutches.

Thanks for all the prayers and well wishes. We could hear God whispering in our ears during this lengthening process. Reassuring us that we were okay, delivering the many prayers, and letting us know that he was right there with us.

Shuffle off to Baltimore

Nick and his Dad are leaving for Baltimore tomorrow. Nick has an appointment on Tuesday. He will get an xray to see just how far he has come. Almost there. Nick you are my Hero!!!!!!!

Steadily moving along.

Good Morning. Nick is progressing well. As of this morning his leg monitor reads 30mm. Add that to the 4 gotten during surgery and he has 34mm of new leg length. Only 16 more to go.

Physical Therapy is going well. Joe David of David Physical Therapy is very good and Nick likes how the therapy is going. Seems to get the results without the intense pain. Mr. David took the time to take to the Baltimore folks and that made us feel very comfortable with continuing therapy in Pittsburgh.

Yesterday we went to Ross's 2008 Summer Choir Tour concert. Nick wishes that he could have gone but realizes that taking it easy and therapy are more important to him right now. This is the first year that Ross is going and he will have to manage without his older brother. At the end of the concert they always sing the song, "Friends". They ask past choir members to come up and sing the finale. Nick managed to get infront on his crutches. A good friend, Marissa, came down to stand next to Nick so that he would not be standing alone. Very special night. Nice for Nick to see his buddies and send them all off on Tour. Nick came home and ended up having five pole changes for the day. A little more pain than normal so today we will take it easy.

Being Home is feeling nicer every day.

Things were better yesterday. The ride home from Baltimore was tough. Nick got a little too much length too fast. That results in pain. So, July 5th was spent on the couch playing Tiger Woods Golf 2008. We stayed put and managed to get through the day with just the three pole changes that are recommended. We even got Nick upstairs into his own bed. He had a great night.

As of today we are 27 millemeters! Only 23 more to go. In the back of our mind we are reminding ourselves that the last two centimeters are supposed to be the worst pain wise. Also the pole changes might not come as easily and we will have to manipulate his leg to make them occur. So, keep Nick in your thoughts and prayers. He is not done yet. Thanks for the support!!!!!!!

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!

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.