The past 3 days have been really good days for Andrew. No pain meds for 3 days!!!!! Prior to that a night of crying from the pain, so this is a big deal. Still a little pain, but nothing major. The stretches he has been doing have been very helpful. Swimming and biking have been wonderful exercises for him also.
This morning Nathan had his first soccer game while on the field next to us were a number of Andrew's friends playing. It was hard for Andrew to sit on the sidelines while his friends were run around. It is starting to really sink in what he is in for. Keep your fingers crossed that we get a 4th day in a row with no meds.
Thanks everyone for your messages, they are wonderful to read.
Saturday, April 24, 2010
Wednesday, April 21, 2010
The Beginning
On March 29, 2010 was one of the hardest days we have experienced as parents.
It was this day we decided to make an appointment for Andrew because of a limp that just wouldn't go away. Though he never complained about anything we knew something just wasn't right.
On March 28th Andrew and Nathan were outside playing with a neighbors dog. Very casually I mentioned something to our neighbor about Andrew's limp. Our neighbors comment was something like this... "I don't want to scare you but, my nephews had this disease called Perthes disease and it started with just a limp about the same age as Andrew is (6)." Not too long after coming inside, Andrew was coming down the stairs and just stopped. He was struggling, but still didn't complain, he just figured out that he had to use his good leg first. Of course after this I went to the internet to find out more. The internet is a wonderful but horrible tool at the same time. By the time I was done searching I was sure that Andrew would be fine and the odds were he would not have Perthes disease, but the limp still bothered me.
Monday came around and we got an appointment for that afternoon. It was very quick, we talked to the doctor, she ordered X-rays on his hip and less than a 1/2 hour later we got the news. Standing in the hallway at the doctors office, Andrew's doctor went over the X-rays with us. Pointing to Andrew's right hip Shawn and I both knew from the research the night before what we were looking at. Our doctor explained that she had another patient a few years ago that had it, but other than that she had limited exposure to the disease and recommended a specialist. With her limited exposure she was still very positive it was Legg Calve Perthes Disease (LCPD).
Our next step, immediately limiting Andrew's physical activities. Yeah right! An athletic 6 year old not being able to run, jump and play sports, that is definitely going to be a challenge. The same day, we scheduled an appointment with a Pediatric Orthopedic at Children's Hospital of Milwaukee. The earliest we could get in was Thursday April 1st. Luckily only a few days waiting and searching the internet. Not a fun week, all the possibilities of what could happen and a lot of Kleenex.
On April 1st when we went to the Pediatric Orthopedic appointment, the doctor first talked to Andrew, which I thought this was great. If Andrew didn't feel comfortable it was going to make things a lot tougher. Then came the time for us to talk to him. The first piece of information was be ready for a lot of ups and downs, a lot of frustrating times and ready to not get the answers you want. This is an unpredictable disease in that there are no percentages, no definite time lines, no for sure outcome. 2 kids, exactly the same age, same amount of damage doing the same type of treatment can end up with completely different results. Anyone who knows me knows that I am a huge planner. There is nothing about this that I can plan for! The only thing I knew for sure is that we had to wait, 4 more months until our next appointment and we had to watch Andrew struggle more and more each day.
3 weeks later it has already been a roller coaster ride. Some days Andrew is completely fine, then the next day he struggles to walk. This will be a long road, but we as a family and with the help of all those around us, Andrew will beat this a be an active kid again. This disease is not life threatening nor does it affect his thinking, so we are blessed in that way. God only gives you what you can handle, so I guess we will handle this!
Please check back, every so often Shawn or myself will update this to let everyone know how it is going. Thank you for your love and support, Andrew is truly lucky to have so many who care about him.
It was this day we decided to make an appointment for Andrew because of a limp that just wouldn't go away. Though he never complained about anything we knew something just wasn't right.
On March 28th Andrew and Nathan were outside playing with a neighbors dog. Very casually I mentioned something to our neighbor about Andrew's limp. Our neighbors comment was something like this... "I don't want to scare you but, my nephews had this disease called Perthes disease and it started with just a limp about the same age as Andrew is (6)." Not too long after coming inside, Andrew was coming down the stairs and just stopped. He was struggling, but still didn't complain, he just figured out that he had to use his good leg first. Of course after this I went to the internet to find out more. The internet is a wonderful but horrible tool at the same time. By the time I was done searching I was sure that Andrew would be fine and the odds were he would not have Perthes disease, but the limp still bothered me.
Monday came around and we got an appointment for that afternoon. It was very quick, we talked to the doctor, she ordered X-rays on his hip and less than a 1/2 hour later we got the news. Standing in the hallway at the doctors office, Andrew's doctor went over the X-rays with us. Pointing to Andrew's right hip Shawn and I both knew from the research the night before what we were looking at. Our doctor explained that she had another patient a few years ago that had it, but other than that she had limited exposure to the disease and recommended a specialist. With her limited exposure she was still very positive it was Legg Calve Perthes Disease (LCPD).
Our next step, immediately limiting Andrew's physical activities. Yeah right! An athletic 6 year old not being able to run, jump and play sports, that is definitely going to be a challenge. The same day, we scheduled an appointment with a Pediatric Orthopedic at Children's Hospital of Milwaukee. The earliest we could get in was Thursday April 1st. Luckily only a few days waiting and searching the internet. Not a fun week, all the possibilities of what could happen and a lot of Kleenex.
On April 1st when we went to the Pediatric Orthopedic appointment, the doctor first talked to Andrew, which I thought this was great. If Andrew didn't feel comfortable it was going to make things a lot tougher. Then came the time for us to talk to him. The first piece of information was be ready for a lot of ups and downs, a lot of frustrating times and ready to not get the answers you want. This is an unpredictable disease in that there are no percentages, no definite time lines, no for sure outcome. 2 kids, exactly the same age, same amount of damage doing the same type of treatment can end up with completely different results. Anyone who knows me knows that I am a huge planner. There is nothing about this that I can plan for! The only thing I knew for sure is that we had to wait, 4 more months until our next appointment and we had to watch Andrew struggle more and more each day.
3 weeks later it has already been a roller coaster ride. Some days Andrew is completely fine, then the next day he struggles to walk. This will be a long road, but we as a family and with the help of all those around us, Andrew will beat this a be an active kid again. This disease is not life threatening nor does it affect his thinking, so we are blessed in that way. God only gives you what you can handle, so I guess we will handle this!
Please check back, every so often Shawn or myself will update this to let everyone know how it is going. Thank you for your love and support, Andrew is truly lucky to have so many who care about him.
Subscribe to:
Posts (Atom)
