Back to Seattle on September 22nd

Just a quick update.... We decided to take the 3 hour trip back to Seattle children's hospital in a few weeks, where we had a second opinion done last February. We would just like some confirmation that we are on track (with just waiting things out at this point) and also have them take a look at the hip xray - where there is a thin line of bone coming from the flattened head of the femur out to the edge of the ball - if that makes sense. I wish I could get a picture of the xray online! I may try to request that.

Simon limps at his baseline now - whether he's running or walking. I don't really know what that means - OK - or bad. But he's sleeping through the night and doesn't complain - so we are just waiting.... He does fatigue easily so we don't go anywhere where there is more than 5 minutes of walking without a stroller (the umbrella one) - or else I'll be carrying him! And he does seem to be getting heavier! I guess they do gain weight.... ha! - but he's only gone from about 31 to a max of 34 pounds in the last year. But he's gained alittle height so that makes it trickier for carrying. Luckily for us, we can still do it.

So I'll post an update after our appointment in Seattle. Lots of times it's just status quo info.... so don't get too excited!... I use to wait on pins and needles for the appointments - hoping for more info, something to say we were moving in at least some direction - good OR bad. But with perthes, it's usually a snails pace progression - so a lot of times, little changes between appointments. So I try not to get too excited. However, I will be very happy if we hear that things are looking favorable for NO surgery - at least for now. So we'll see!

BIG Setback. Hopefully he has just overdone it....

Simon started limping a few days ago. He didn't let it slow him down so we weren't worried. We asked him if his let hurt and he said no. Each day he limped more. Yesterday he would only take a few steps and walked on the ball of his right foot and would ask me to carry him - which I did of course! Today, he can barely walk at all and says it hurts. Ack. A week ago, he seemed fine.

We weren't suppose to see his Ortho MD until Sept 1st. I called him up and he's seeing him on Monday August 10th with new xrays. He is on modified rest and motrin around the clock until he shows improvement until Monday.

We are hoping it's all just inflammation. He has been in summer camp the last 8 weeks and today was suppose to be his last day (but he didn't go of course). We spoke with his teacher and they said that he doesn't jump.... (yeah, he finally gets it!) but he runs constantly - including up and down a small hill on the playground. This actually made us feel alittle better. If he over did it the last few weeks, then it could just be inflammed tissue and not a worse scenario of his hip coming out further from the socket. He also says that there is a clicking feeling or sound in his hip. This doesn't seem like it could be a good thing. But again , no way to tell what's really happening under the skin.

It's the terrible waiting game of Perthes. Even waiting until Monday is stressful - wondering what they will say, what the xrays will show. But we are happy we have a responsive doctor willing to get him in immediately - because we know from his nurse he is booked out 2 months.

More updates to come Monday afternoon! Lets keep our fingers crossed....

Alitte stiff after a very active week...

Well Simon is really enjoying his cast free freedom.... and so are we as a family. But maybe alittle too much! Together with the wonderful weather have been many opportunities to be very active outdoors and we have! We put the training wheels on Simon's two wheeler (which we had taken off because he can practically ride it if he were only alittle taller he could stop and get off it). We've read it's great exercise with Perthes to ride a bike. He is thrilled and has been riding 100 miles an hour everywhere. Then he started limping a few days ago. Oops, maybe a bit too much riding. But we don't know if this is really a bad thing (his hip is working, moving in the socket... that is suppose to be good!). But we backed off a wee bit the last few days and his limp is almost not noticeable. He is now able to run which he couldn't do the first 10 days post cast. So that's another workout for the hip. We are just hoping that this is all good and will result in a good outcome, despite the limping. We have been told that the limping is due to inflammation usually and from over exertion - not necessarily that the disease is going south...
So we wait and see. Looking forward to the June 6th appointment for a teeny piece of any information to think things are going well. In the meantime we are enjoying the good pre-summer weather to the MAX and making the most out of everyday and having FUN!