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....

Status Quo - waiting for xray to see whats really happening....

Before I begin - this picture is of Simon (the little one!) and his big brother Sebastian (6 1/2) on 4th of July on their balance bikes. My older one already rides a pedal bike but he was test riding this bigger version balance bike for kids 6-9 years old for my balance bike business. And no, I don't let Simon ride barefoot or without a helmut! I got them to pose briefly for me (which is a rare opportunity!) before sending Simon back to get shoes and his helmut on!

Things are status quo with the Perthes. Simon tires out easily when walking and after a few blocks (or less) usually wants me to carry him (luckily he is only 33 pounds - but he still feels heavy!). I noticed over the weekend when he is running that his gait is off slightly and there is a small gallop. He doesn't ever complain about it and he is sleeping fine through the night. So who knows exactly what that means! It doesn't always mean good news for the hip - but it does make our lives easier for now with no major issues glaring down on us.

His allergies and asthma seem to be in check (barely sometimes) so we are hoping to take him off the zyrtec in August - which I think makes him alittle more hyper than his usual self. I did get a metal frame backback for our upcoming vacation so he can ride back there instead of me carrying him! Luckily since he is small he can still fit OK and we tried it out the other day. This is probably the last summer I can use something like that. When we went camping recently, I ended up carrying him a lot down the hiking trails and that got tiring after awhile. Since I use to be an avid backpacker, I think the backpack will work just fine.

Not much new on the Perthes front... however....

I wish I could post something interesting and new about Simon and his Perthes. However.... we are so consumed with the weather change and how it's affected Simon's eczema and asthma, that the Perthes has taken a back seat (WAY back!!) He had a bad asthma attack 2 weeks ago and had to go on Prednisone.

The Prednisone kept his eczema (and asthma) under control, but once off that, the humidity and seasonal allergies seem to have sent thing south. Poor guy has little scratches all over his body from itching! We tried stopping his Zyrtec because we thought it might be causing his irritability. However we started it up again because his skin was getting so bad and today he does seem alittle better.

It's so easy to forget how these season changes affects his health! We haven't had these types of problems for several months (and I think we innocently think it's gone for good...). Hopefully in a few weeks things will settle down and we will skate through summer. Fall is always bad for him and his asthma.... so we are gearing up this year to increase his daily inhalers (at his doctors suggestion) to see if we can have a peaceful Fall this year. Stay tuned!

Good news, so-so news.....

Simon had his check-in with Orthopedist Dr. Turker today. We ended up having xrays which we didn't expect, but I'm always happy for because I get to see what's happening under the skin!

Good news is that things aren't worse. The growing bone looks aligned with the top of the femur. His ROM is better than before the casts. He is active and not in pain, and not really limping (barely noticeable).

The so-so news is that there is still a deformation so to speak or growth outside of the socket. Dr. Turker states that this will not go away. If it remains stable and does not get worse, and the rest of the bone aligns with the top of the femur, then we probably won't need surgery. These are a lot of ifs and he is cautiously optimistic. However, even he says he cannot say what will happen next. No one knows with Perthes disease what the next xrays will show. Simon's right leg will also probably be slightly shorter than the left and this may cause some problems later on. Still unknown.

So we will just continue onward. Swimming twice a week. Biking as we can. I will do some small form of stretching exercises, as Simon tolerates and does not cause pain. Dr. Turker feels that when a child is in pain from stretching exercises, they will not move freely because of that pain and it will further cause stiffness and possible poor regrowth in the joint. Again, with this illness, there are so many different schools of thought! I often hear parents state they saw three doctors who all told them different things or ways to treat Perthes. And this is true. Even the doctors we saw (three different doctors) confirmed the wide differences in treatment for this illness! So we are going to have faith and trust our doctor and hope we have a positive outcome. He wants to see Simon back in about 2 1/2 months with more xrays so that will be right before school starts in the Fall.

So we will forge ahead with summer plans and enjoy!

Coping with multiple health issues - and enjoying life anyway!

The other day someone at work asked me how Simon was doing - " you know, his allergies and asthma, is everything under control?" Oh those ole things I thought to myself! Oh yes, those are old hat. You must not have heard about the Perthes. That's the "big thing" I was thinking.

But it got me thinking. With each issue Simon has dealt with in his life - each one WAS a big issue at the time - almost all consuming just like the Perthes was the first 6 months after his diagnosis. Each diagnosis or health issue set off a rash of research on symptoms and weeks of worry... does he really have it? What are the symptoms? What is the treatment? What are the alternative or natural treatments? And most of all.... when will he outgrow it (or more like - when will it go away?!). Once we exhausted all our reseach and started just living with the issue - it got easier and we stopped thinking about it so much. But then something else would creep up...

It (really) started the day he got home from the hospital and he was pooping every 15 minutes OR MORE. The advise RN said this was normal - but I knew it wasn't. I was going through boxes of diapers a day! So I started cutting out foods I was eating because I was nursing. No big deal. I did this with my oldest. Couldn't have dairy. I guess I could survive. But things only got worse. The eczema started around 5 weeks old. Then the severe scratching/itching. I had to sleep with him to make sure he didn't cut himself too much from itching. He had to be swaddled until he was over a year old due to the itching. We tried all sorts of medicines - benedryl, atarax, acupuncture, nothing helping much. The color red couldn't even touch his skin. No perfumes, no bounce, no chemicals. I tried to have him food allergy tested at 4 months old, but the doctor thought I was just a nervous mom (even though it was my second!). He couldn't have any type of formula - I even tried pasterizing goats milk myself - he seemed allergic to everything and I was starving - well we both were because I was having (wanting) to nurse him and he seemed to react to everything I ate. We finally got a GREAT PA (physician assistant) allergist who tested Simon for food allergies at 8 months old. Boom - we got it - all dairy, eggs, nuts, peanuts, marginal soy, dogs, cats.... Anyway- food allergy crisis over and under control just in time for the asthma to start at around 15 months old.

It took about 4 months to get the asthma under control. We finally had to accept to start him on a daily inhaler - Qvar. OK, finally the asthma was not an all consuming struggle.

Everyone kept telling us - "Oh, many kids usually outgrow food allergies and asthma around 4 or 5 years old". OK we were thinking..... we can handle this for a few more years.... boring eating and daily inhalers that makes our child hyper. A few years.... anyone can get through that right? Then the chronic ear infections started...... and then tubes. OK, that's fixed.

Just when we thought we were hitting a status quo with only maybe 2 more years of allergies and asthma to go and we'd be home free we were hit with the Perthes. Whoa.... OK . Now were were reading 3-4 years to recover from Perthes (if you are lucky).

OK, I'm starting to wear thin now. Three to four more years of health problems. Gosh, I'm wondering if I can 'wait' that long? 'Wait' for our lives to become 'normal'. 'Wait' until we can really sit back and relax and not worry so much (at least about health issues). 'Wait' until we can start doing fun things we want to do like a normal family (and without emergency kits of motrin, benedryl, epi pens, rice milk and stinky soy cheese) .

Then it hit me. What are we really waiting for? What if he never grows out of these health problems? What if we don't have the best outcome with the Perthes? Who knows what the future will bring for any of us. We have to just forge ahead and have our fun in the moment.

Yes, it's more work for sure and we do have to plan some.... but the fun we have in the end is more than worth it! I've decided that there really isn't much we can't do as a family (besides bounce houses right now!) and there are really so many things to do and see that we are missing out on. The few things we can't do pale in comparison to what we can.

It seemed easier to put thing on hold (trips, outings, even eating out) because it was a lot of work (and sometimes worry) to make accommodations and was out of our comfort zone. We kept thinking - oh, in a few years we can do those things.... it will be easier then.

But you never know what the future brings. THESE could be our easy years. No one really knows. So we are moving on.... a new outlook, a new stage. Today IS our new normal now. No more excuses why we can't/shouldn't do something if we really want to. It's all out there waiting for us. And we are very excited to begin....