New year ...New Obstacles!

Well yes it has been a few months since I have been able to blog...things have been crazy busy with doctors appointments...

Cayden is such a sweet boy with a heart of gold .... Last visit to the Ortho landed Cayden in a CT scan of his lower back due to severe pain...after months of nagging got me nowhere.

One morning when I woke Cayden up for school he started complaining his side hurting.....so I decided that he better go to the doc because I always think the worst and pray for the best..so as I am getting him showered ..he drops down in pain at the bottom of the tub. So instead of waiting until 9 am to take him to his primary care physician I end up taking him to the ER...

We got to the ER and back in a room...by this time he was still in pain, but it was easing up. The nurse came into the room to take the vitals and get everything ready for the doctor to see him...the whole time the nurse was in there he was telling Cayden how he believed Cayden was faking just to get out of school...and was going on and on about how he didn't believe Cayden was in pain...so after a few mins of this I very bluntly kicked that nurse out of the room. I am his mother... I know my child and I believed he was in pain! ... if he was "faking" he was going to win an emmy and make millions with an acting career. The doctor finally came in and immediately began to talk about Cayden's pain being appendicitis...after a brief in shock moment I urged the doctor for a CT. .. 

The CT was terrible...the initial pain and then the needles on top of the pain..but thank god it showed the appendix weren't inflamed...however it did show an undesceneded testicle on the right side...REALLY? as many procedures and well child checks that he has had this is just now an issue? ...

Well after a month of waiting he finally gets into a Urologist who says surgery! April 22nd Cayden goes into surgery to bring and tack down the testicle....

Surgery goes well and he is now on the road of recovery once again.... he is still in and out of pain and still undergoing tests to determine where the pain is stemming from in his side...he is still in and out of the wheelchair and still in a lot of pain with the hip...


Sometimes I feel if the doctor would listen to the parent who spends an extensive amount of time with the child most of the medical issues that go undetected for several months or weeks would be caught a whole lot sooner...

July 2012....

It has been a while since I last updated and for that I am sorry...so here it goes. Cayden is almost 7 in less than a month! I can't believe it. Cayden still struggles with Perthes everyday.

Regrowth has been detected, but we are not out of the woods yet. He now is complaining of stinging and burning in his hip...his range of motion is still awesome. I am so proud of him.

Cayden has missed out on so much since he was diagnosed, but he doesn't look at it that way..he says he learns different ways to do more stuff! He is my inspiration.

Next APPT is October...wish us luck!

October.....

Cayden goes to the Orthopedic doctor Tuesday....I am extremely nervous for my baby!...Last appointment he was diagnosed bilaterly, at this point we are trying to make the best of a bad situation.  HE is really scared that the doctor might say he needs to stay in the chair and not go trick-or-treating.....

Cayden received 6 weeks for physical therapy, however insurance doesn't think he needs to continue because he wasn't progressing fast enough. If this was an injury I could understand..but it is a condition that isn't going to go away in 6 weeks, 8 weeks or even 12 weeks...this is something that he has to live with everyday...I am in the appealing process with the insurance company and I will fight the battle until the end..Cayden deserves to be able to go to the PT and at least get the equipment use that he needs...excerising and muscle stretching I can do at home.

The important thing is that eventhough I feel the insurance company has given up we are NOT! We will take this one tiny step at a time and pray that things will work out!

Thanks for reading...I will update after the appointment on Tuesday.....PASS ALONG!

O my baby boy!

Cayden is still in physical therapy...everyday he goes it gets more and more difficult for him....I keep reminding him that PT is why he gets to walk and play like the other kids...and he says back to me "what if it doesn't work momma?.. I want to be a normal everyday kid..like the ones in my class." ..at 6 years old he does not understand why this is happening to him..and even at my age I don't understand either. He continues to push through the pain everyday..even when I know he is hurting he still doesn't give up...

Emmotionally this has taken a toll  on my baby's confidence..anger issues and just socializing in general.

My heart breaks everyday for him and what he is going through, but I am so helpless and can't take the pain away. He still refuses to take the wheelchair to school due to how he gets treated...he says they (the teachers) don't help him so he would rather hurt and walk. This is so not fair to him....last week a teacher "forgot" about his condition and he had to walk laps with the other children for being loud at lunch...seriously so 45 mins of loud voices.... plus laps around a playground... equals severe pain for him that could last for a week or longer...and all I get is "I forgot" or "I didn't think about it, he should have said something" As a Perthes parent I believe there should be more accomodations at school for him..ex: an aide to help him get around..or just encourage him throughout the day!

My child already felt like he was in trouble so why tell them in fear he would get into more trouble if he stopped walking....they are the adults and they should know...I have a 504 plan and his condition is explained extensively to both of the teachers who made him walk that day.

Awareness is why I started this blog and why I will continue...everyone needs to know why he looks fine on the outside, but in pain on the inside. They need to know what to look for and not just settle for "growing pains"

As I tell Cayden "we continue to do the things we love to do....just in a different way"

Thanks everyone for reading...please pass this on and help spread the awareness!

...Just a little short and sweet update!

Cayden has started Physical Therapy and is extremely sore. October we go back to the ortho to see how much more damage has been done to his hips!...Cayden is at the age now that being different is really starting to effect him...he hates taking his wheelchair anywhere...I try to assure him that things will get better...but he is having a hard time believing me...someday he will understand mommy is always right! Cayden doesn't let this slow him down to much, eventhough, I'm constantly reminding him he will be hurting later and his response is "I know"...while running away ...As things happen I will try harder to update more often...I'm one busy mommy!


Thank you for reading and please pass this on! Awareness is very important!

Physical Therapy

     8 months into this what some call a "journey" but I call it a nightmare of Legg Calve Perthes....symptoms are getting worse, longer painful nights and less play.... Cayden is starting to ask questions about why he has to hurt all the time and why he has the wheelchair and can't play like all the other kids......Its difficult to explain to my innocent 5 year old why this is happening to him.....when I wonder the same thing...When he has tears of pain...and hurt I try to explain to him why he is so special....I remind him of all the fun things we do still....and how he gets to ride when I have to walk..so far it puts that little grin back his cute little freckled face.                                                             

    Next week he starts.. Physical Therapy and this is going to be the first of what I feel will be many sessions...I am nervous and scared at the same time...I know in the long run he will benefit from it...but I can't help to think of the what if's that come to mind...like what if he is more sore...I can't stand to see him in anymore pain than what he already has to deal with...
    
  As soon as Cayden got old enough to some what understand things...I decided that I would explain everything to him that I possibly could about his medical conditions....so when we found out about the physical therapy I sat him down and tried explained what physical therapy was....I said "Cayden next week you are going to start physical therapy" ....immediately Cayden said " oh no I don't want shots"...I said "they don't give you shots..they are going to help you exercise your hips"...he said " mom I can do that. They don't have to help me do that" I said " well they know how to exercise in special ways" Cayden said "do they get paid?" I said "yes son" He says " well I exercise everyday and don't get paid".....and stomped off to his room... we will try that explanation again later!!!....

People are Amazing.....

          So tonight a Bowl-A-Thon was coordinated by citizens of this small town that we live in.....it was 5pm to 7pm and half the proceeds go to a Perthes fund that would help Cayden and other children with Perthes as well......I cannot explain how grateful we are that people of this community came and donated,hung out and had an all around good time....NOW we can build his wheelchair ramp that he so desperately needs.
          Cayden bowled and had such a good time...but with the good time came the pain...by 10:00pm he was in so much pain he couldn't stop crying....he still insisted that he had a good time and would do it all over again!....This little boy has more physical strength than most adults ever dreamed of having.....and through the pain and agony he still finds that strength to push on....HE is my hero....
            AS a mother I wish I could take all his pain and suffering away....I wish he could run and play like most kids his age...or go to sleep and stay asleep pain free....I pray every night that the lord will give him relief....they say there is power in prayer...and prayer is all we have left!