How we are coping....

I'm feel like I've been slacking with the posts! It's because life has been alittle hectic to say the least - with Simon's symptoms and behavioral reactions to them, end of summer crazies, and big brother broke his finger and sprained his ankle.... so everyone is cooped up and going bonkers!

Well, the above picture coincides with the title of this post! We have planned many times to get rid of the binkie..... but then something would happen with his health, and we couldn't do it....

Then it was when he turns four - which is just in about 10 days....

Well, we just went to the dentist - and he is all for not getting rid of the binkies! So there, we are keeping the binkies for awhile longer. And in the picture above you can understand why. Now he does not put all the binkies in his mouth usually - but this does describe how he feels about them! They are his security - his blankie so to speak - and while we are trying work on his high energy behavior - we thought taking away his main security may not help things too much.

I know we will get some slack for this - and already have over the last year! Luckily for us - he is still just the size of a turning 3 year old - so that may help some. We know that he won't be going off to high school or walking down the isle carrying his binkies.

As far as his Perthes goes - we are coming off the most recent flare. He still limps more than early in the summer, and we aren't sure what that means as far as the final outcome of this disease, but we are using less Motrin, and he is sleeping now through the night. So for that we have to be happy. His limp is more pronounced in the morning and tapers off in the afternoon.

We don't see the Ortho MD until November. We've considered going back up to Seattle Children's hospital where we had a second opinion last Feb to have them look at his xrays again... but I haven't gotten around to making the appointment. They seem to be in line with what our current doctor has done, so it seems like a big trip to just get some pat answers. However, for the peace of mind we will probably do it. You want to know that you did everything you could when you are facing a not so perfect outcome like we have been prepped for. Until next time!

Update on last Ortho appointment...

I'm usually so prompt in putting up an update after Simon's appointments with Dr. Turker, however this week was so exhausting, I've been lagging. Sorry!

The news is definately mixed. The xray did not show a significant difference or anything serious enough to require immediate intervention. However, the doctor states he has a very serious case - expecially for a 3 year old, and he is very unsure how things will progress from here. It was quite somber. He did seem impressed though with Simon's ROM - which I really think is a result of going to the swimming pool. Simon can practically swim now and spends half the time in the pool exploring under water and moving his legs all about on his own. This allows his leg to move in all sorts of positions that he would otherwise not move it on his own out of water or while walking or running.

On the upside, Simon's mobility has improved each day and his limp is starting to be less and less noticeable. In the morning right after getting up, it is more prominent. But as the day progresses, much less so. He does do this "gallop" running which he has done a lot since he has had Perthes, which alleviates some of the pressure off his right leg when he is running. We have been giving him Motrin - and hopefully that has been helping.

His behavior has been quite awful. Loud, wild, not listening..... We are hoping it is just a reaction to this flare up and not some new stage that will test our sanity....

Next appointment is in 3 months with xrays unless something happens in the meantime to make us concerned. It's really a waiting game at this point.

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....