We went to the specialist today and have great news...there is a lot of regrowth and it is contained! Even though it was less than 3 months since our last appointment, there is obvious regrowth on the X-rays! We went in because Andrew has been having a ton pain and trouble walking for more than 3 days in a row. I was prepared for horrible news, but we didn't get that. The specialist doesn't know exactly what is causing his pain, but they also say Perthes is one of those diseases that don't follow any specific path. Every patient is different.
Andrew will have to start therapy to help with the pain, change his pain meds and do more swimming. Also, he will be getting a wheelchair to help when during the long summer activities such as parades, zoo trips, etc. He was just getting too tired and in too much pain if we didn't anything that required a lot of walking or standing, this is a great fix, since he doesn't fit in a stroller (nor would he go in one), the wagon will still be used for some "off road activities" - but that is getting really heavy to pull with him in it. Also, lets not forget how fun it is to carry 60 lbs on your shoulders for 2 days in a row - NOT!!!
This is a very brief explanation of today, but all that matters is that we are 1 step closer to healing and he is now in the regrowth phase of the disease. Wish him luck that he can continue to stick to his restrictions and continue with only good news.
Thanks!
Caryn
Thursday, May 19, 2011
Quick change
After what seemed to be a great last 6 months and quickly turned into the opposite when it comes to Andrew's hip. He went from very little pain and us easily being able to manage it, to having troubles walking and always in pain. Because of this I called the specialist and we are headed there today. Wish us luck that it is just the weather changes and not something bigger.
Thursday, March 31, 2011
Too much time has passed
I know it has been way too long since I have posed again. Things have been crazy busy. Moved, now at home with kids full time, loving it. Love being by family all the time.
The kids have adjusted great. Andrew is loving school here. He was doing really good for a very long time. We had an appointment less than a month ago. Last appt we thought there might be some regrowth, that is not the case, he has some more fragmentation occurring, but not on the outside part of the ball. It seems to be contained to the middle. Which is good and bad. Good because the outsides aren't being affected, but bad because he still has fragmentation. In the last 2 weeks his pain level has gone way up. He has had some trouble walking in the morning and no longer partakes in recess at school. He has been sitting in the office or hanging out with the teachers. Don't think that is too much fun for him. It has been frustrating because he no longer listens when we say take it easy, stop running, don't jump, etc. He is passed listening to us and doesn't want to sit still anymore. Not sure what to do next. Daddy is better and being strict with it and chasing him down. I just sit and shake my head and wonder what damage he did today. Hopefully this is just a very short stage and growth will restart before our next appt. Our next appt is in Sept and we can't wait to see what that brings.
We know we have been very lucky so far and hope to stay that way. Wondering what would have happened if we didn't discover he had Perthes so early?
I will try and not as much time before my next post. Thanks for reading!!!!
The kids have adjusted great. Andrew is loving school here. He was doing really good for a very long time. We had an appointment less than a month ago. Last appt we thought there might be some regrowth, that is not the case, he has some more fragmentation occurring, but not on the outside part of the ball. It seems to be contained to the middle. Which is good and bad. Good because the outsides aren't being affected, but bad because he still has fragmentation. In the last 2 weeks his pain level has gone way up. He has had some trouble walking in the morning and no longer partakes in recess at school. He has been sitting in the office or hanging out with the teachers. Don't think that is too much fun for him. It has been frustrating because he no longer listens when we say take it easy, stop running, don't jump, etc. He is passed listening to us and doesn't want to sit still anymore. Not sure what to do next. Daddy is better and being strict with it and chasing him down. I just sit and shake my head and wonder what damage he did today. Hopefully this is just a very short stage and growth will restart before our next appt. Our next appt is in Sept and we can't wait to see what that brings.
We know we have been very lucky so far and hope to stay that way. Wondering what would have happened if we didn't discover he had Perthes so early?
I will try and not as much time before my next post. Thanks for reading!!!!
Sunday, December 12, 2010
Lovely Weather
So much has happened in the last 3 months. It is wonderful being back in Green Bay. I think the kids are getting too comfortable at Grandma's house. They will be in major shock when they are back to reality and we no longer live here. Can you say SPOILED children.
Since our move, Andrew hasn't needed pain meds very often. Maybe once a week. The bad news is that lately he has been limping really bad whenever he walks. I think that has to do with his activity level. As hard as we try to limit his "running" we are not doing a very good job at stopping him. At least he listens to his teachers at school when they say no running. He also has started to complain about ankle pain, which I think might have to do with how he walks to avoid causing pain in his bad hip. Not sure, but hopefully that pain goes away. He has been waking up at least 3 nights a week crying about not being able to sleep. I again am guessing that his has to do with pain, but Andrew never really says exactly what is wrong. The only complaint Andrew really has is that he can't do everything that his friends can do, but he still does most of it. I don't know many 7 year olds that can takes things as they come like Andrew does. His next appointment is in February, so we have a long time to wait til then.
Keep your fingers crossed that one of these days our house sells so we can look for a house here. Hate paying mortgage on an empty house.
If I don't post again before Christmas..... Happy Holidays!!!!
Since our move, Andrew hasn't needed pain meds very often. Maybe once a week. The bad news is that lately he has been limping really bad whenever he walks. I think that has to do with his activity level. As hard as we try to limit his "running" we are not doing a very good job at stopping him. At least he listens to his teachers at school when they say no running. He also has started to complain about ankle pain, which I think might have to do with how he walks to avoid causing pain in his bad hip. Not sure, but hopefully that pain goes away. He has been waking up at least 3 nights a week crying about not being able to sleep. I again am guessing that his has to do with pain, but Andrew never really says exactly what is wrong. The only complaint Andrew really has is that he can't do everything that his friends can do, but he still does most of it. I don't know many 7 year olds that can takes things as they come like Andrew does. His next appointment is in February, so we have a long time to wait til then.
Keep your fingers crossed that one of these days our house sells so we can look for a house here. Hate paying mortgage on an empty house.
If I don't post again before Christmas..... Happy Holidays!!!!
Tuesday, October 19, 2010
Lots of changes...
There have been a lot of changes since my last post....house up for sale (anyone want to buy one in Waukesha?), no job for me, new school, new town, new job for Shawn (not starting til the 15th of Nov.). Life is great.
Right now we are going to be living with my parents until our house sells. So far, so good!! Thanks mom and dad for helping us out. It will be hard to leave, built in babysitters, always having someone to talk to, shopping partner (Sorry Shawn and dad!!!). Gotta love it. We have it so good we may never leave!
Andrew has been really good for the last two months. It is amazing how much taking away stairs at school and home has helped. We have had a rough last week with pain meds, but that is to be expected because Andrew is no longer listening to the no running and no jumping rule. 6 months was enough for him. Little does he know it will be another few years, if all goes well before he can be a "normal" kid again. We can only hope he starts listening again or things will get tough.
As soon as we are settled into our new life, I will fill everyone in more. Please keep your fingers crossed that we can sell our house soon! The house will be empty very soon.
Right now we are going to be living with my parents until our house sells. So far, so good!! Thanks mom and dad for helping us out. It will be hard to leave, built in babysitters, always having someone to talk to, shopping partner (Sorry Shawn and dad!!!). Gotta love it. We have it so good we may never leave!
Andrew has been really good for the last two months. It is amazing how much taking away stairs at school and home has helped. We have had a rough last week with pain meds, but that is to be expected because Andrew is no longer listening to the no running and no jumping rule. 6 months was enough for him. Little does he know it will be another few years, if all goes well before he can be a "normal" kid again. We can only hope he starts listening again or things will get tough.
As soon as we are settled into our new life, I will fill everyone in more. Please keep your fingers crossed that we can sell our house soon! The house will be empty very soon.
Monday, August 9, 2010
Next appointment set!
Now we are back to the waiting game. We scheduled Andrew's appointment, begin the countdown til Feb 7th. It stinks waiting so long, but it is what it is.
Since the wonderful news we got at Andrew's appointment last week we thought all was good. He had a great week, only pain meds once. That was until we lightened up too much last night. A few neighbors came over and we didn't restrict Andrew like we should have. He had a blast, he was up and down the stairs, not really running, but almost, playing and having the best time. He seemed fine and who can blame us for not stopping him! Andrew is 6 and should be able to act like a 6 year old sometimes. Then 9:30 came around and he was in pain and upset. Morning came and he crawled up the stairs because it hurt too bad. We really thought the good news of regrowth meant things would get easier. Keeping our fingers crossed that Andrew can get through this quickly.
Since the wonderful news we got at Andrew's appointment last week we thought all was good. He had a great week, only pain meds once. That was until we lightened up too much last night. A few neighbors came over and we didn't restrict Andrew like we should have. He had a blast, he was up and down the stairs, not really running, but almost, playing and having the best time. He seemed fine and who can blame us for not stopping him! Andrew is 6 and should be able to act like a 6 year old sometimes. Then 9:30 came around and he was in pain and upset. Morning came and he crawled up the stairs because it hurt too bad. We really thought the good news of regrowth meant things would get easier. Keeping our fingers crossed that Andrew can get through this quickly.
Tuesday, August 3, 2010
additional info
What I did not put in yesterdays post is that yes regrowth is wonderful news but... he still has the long road to recovery. Now that regrowth has started, we have to keep Andrew swimming and biking to keep the ball regrowing correctly. This can be a tough stage for some kids. This stage if I understand correctly can take years and there still can be a lot of complications. We are keeping only positive thoughts that Andrew will have none of those complications.
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