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!

UPDATE: June 14,2011.......

     Sorry it has been awhile Cayden is pretty much keeping me busy!......So to update everyone....Cayden went for a about three weeks with very little pain...He was actually playing like a 5 year old should....and then we were broad sided by extreme pain that kept him confined to the wheelchair for the better part of 3 days....we were up at all hours of the night....pain medicine every 4 hours and bathes at hours of the night I didn't know exsisted.....he would use an electric blanket to soothe the pain with the heat...it was a very long 3 days....It took alot out of all of us...
     June 14,2011- As I pushed him in his wheelchair down the long hall at OU Childrens University to the Orthopedic department all I could do was pray......Cayden had a good summer so far, but I knew those three days of pain were different than usual....we signed in and waited to be called back.....Finally what seemed forever the nurse came to the waiting room and called Cayden's name...the whole time I sat there I prayed we would receive good news...First thing we did was x-rays...then it was time for truths...the first thing the doctor said when he came into the room was does Cayden complain one or both hips hurt?...My stomach dropped..I knew exactly what that meant....Cayden said both my legs hurt and they are really tired all the time...the doctor checked his range of motion which is very impressive...and then pulled up the x-rays.....he went over the left one which continues to break down normally and then he pulled up the right hip x-ray....and there we seenimmediately what we were terrified of...Cayden now has Perthes in the right hip as well.
  When both hips are affected it is called bilateral perthes...which only occur in about 10-20% of all cases and normally diagnoses come months apart.....
   Cayden is a fighter and we will get through this together.....Perthes is LIFE altering not LIFE threatening! We will make it!

Consideration.......

For those of that are new to this blog here is a recap.....Cayden is my 5 year old little fighter...Dec 2010 he was diagnosed with a rare hip condition called Perthes, this is just another obstacle that he is fighting to overcome. Up to this point we feel like we are running in circles trying to bite the tail that isn't there!

                  Today Cayden is having just a little bit of a problem walking.....he refused his wheelchair this morning,because he says the other kids stare at him...and that is where I wanted to start today.....when Cayden was old enough to start asking questions about those with disabilities we would sit down and explain it to him.....it was really hard sometimes knowing what to say, but we did the best we could.
                 When Cayden takes his chair out in public or even when he limps people stare....not only kids,but adults too! I was shocked by the amount of adults that would act as if they to were a child...and point...not to mention those that would not move out or the way or assist going through doorways ect...but just stare. It is very hurtful.....all he wants is to be "normal" as he says. 

                Cayden is so self conscious that he doesn't want to be the center of attention.....he has hard days when the wheelchair is a must and good days where he forgets he has it......so what I am getting at is if you are a parent put yourself in my shoes......what if that were your child people are staring at or won't move to get through. Explain to your children what it means to be in a wheelchair or why they shouldn't stare...........

Emmotional day.....

                 Yesterday started out an awesome day except for the part that Cayden was in some pain....We loaded up his wheelchair and off to school he went...at school he overcame many the obstacles in his way..such as pulling his chair up to the table to color. Lunch was a little more difficult...wore most of  his lunch than ate it.
                  Recess is when the day took a turn....he couldn't run or play...no more running from the girls...couldn't get out and play basketball or climb on the playground equipment. Several times he got stuck in the grass and had to get help getting out. When he returned to the classroom his teacher said he was teary eyed.
                 After school when I picked him up his arms were tired....his hip was still hurting and he felt he missed out on everything.....Cayden was mostly quiet the way home from school...he limped inside while I unloaded his chair...when I came in he was crying and upset...I said Bubba whats wrong? He said momma I can't do the stuff I want to do when I'm in that chair...and I can't do them when my leg hurts either..he said all the kids were staring at me and it was hard to even go to the bathroom.....I was at a loss for words...what do I say to him?...My heart was broken into a million little pieces....as I fought back the tears I finally said what would help you?...he said for me to be my little normal boy....I tried to explain to him the best I could that he isn't a normal little boy nor was he ever. I reminded him how we dealt with his kidneys and the extra things we had to do...like frequent the restroom..or be careful what he drank...he remembered and then I reminded him what we have to do when his asthma acts up....he has to have his nebulizer and sit down for a few...and then I went on to tell him that when his hip is hurting and he needs his chair we will figure out some other stuff for him to do instead of sitting on the playground watching the other kids play.....I try to remind myself as well as Cayden (in different words for him) that this is life altering, not life threatening.....but to Cayden it is his life...he thinks basically his life has ended....he is starting to give up on things that he can still do.....I think this is going to be a hard rough summer.....in the end of our conversation I hope Cayden seen that not everyone is the same and there really isn't any such thing as normal....I continue to pray every night to the lord to help us better understand this and how to deal with it......

Just an update.....

            Cayden got his wheelchair yesterday and the look on his face was priceless! He kept asking me questions about where he could go now...Can I go to the zoo now?......Can I practice in the house?.....How do I get down the stairs mom?...and then when he was out of questions with the biggest grin of all he looked at me and his dad and said Thank you..and I knew all the worrying, stress, phone call after phone and then the paperwork was all worth it!
             This weekend we are going to work on a ramp to get up the stairs so we aren't trying to lug him and the wheelchair off the porch!.......I am so proud of him for dealing with this disease with such a positive attitude!

Wheelchair........

               Today we got good news that insurance is going to pay 100% of Cayden's wheelchair, which comes as a big relief. We should be getting his wheelchair in the next couple of days.
                Cayden is upset that its not an electric wheelchair...he likes the idea of running unexpecting kids over in the halls of school! He said it could be camo so they wouldn't even see him coming!
                 The chair will be for an occasional use. He may go a week out of it and then three days in it....it is just for the really bad days.
                  This morning as we pulled up to school Cayden said "mom I can't climb those stairs" I said "why? Does your legs hurt?" He says "yea I just can't make it up them. My legs are really tired today"...I stopped a minute and took in the harsh reality that there are many mores times like this to come...I said "Bubba you tell momma what you want me to do to help you?" He stopped for a second and said I want you to help me get up those stairs. So with my pink eeyore pajama pants,blue and yellow shirt, pink slippers topped off by smeared make up and hair thrown up in a mess...I got out of the car walked around and told him alright son you take as long as you need to get up the stairs and I will help you. As I had explained many times before to him start up the stairs with the leg that isn't so sore....Very carefully he started up the stairs...with me by his side. It didn't take him long to get up them...and then he was ok, but the stress of those stairs really got to him and I was so proud of him that he was so determined to walk up the stairs that he refused to use the ramp!...days like this shouldn't be something that a 5 year old or any child for that matter should face....I do have to say the other parents at school and most of the teachers are very understanding and doesn't rush him!
              The rest of the day he played like a normal little boy...and this is what makes the disease so hard to understand....he can be sore and not want to walk part of the day...and then walk and TRY to run (eventhough he isn't supposed to) the rest of the day! I AM SO PROUD OF HIM AND CAN'T TELL HIM ENOUGH!

The third opinion......3/29/2011

                                Cayden seen doctor Puffinbarger on the 29th of March....Going into this appointment we were hoping to get an opinion that corresponded with the opinion from the Shriners....to give us a base to start with treatment.
                                 The appointment was at 8:45 in the morning. The day started out like many days in the past with a limp and pain..........when we arrived we waited for approx 45 mins to be seen. We went back took x-rays and then seen the doctor. The doctor had Cayden walk down the hall and back...after a few minutes the doctor said that he didn't believe the varus osteotomy would be beneficial. He also said that we needed to "wait and watch" and return in 3 months. After asking several questions he did prescribe Cayden a wheelchair to assist in getting around on really bad days!
                                   This has been such an emotional rollarcoaster the last few months for all of us. Cayden is so upset that he isn't supposed to run and play like the other kids. He cries sometimes when he can't participate in things like summer soccar, T-ball or other active sports. Cayden was a very active child since he could walk and now to basically shut him down to a screeching hault because of a disease that has taken his childhood is so heart breaking and what makes it worse is not getting straight answers that correspond with what other answers we have gotten.....We are lost right now as to what to do next. My gut feeling says that he needs something more than just "wait and watch", but financially we can't pick up and go see the specialist guru's in Baltimore or Florida....so sitting and twittling our thumbs waiting for a sign from God as what to do.......
                                 

Shriners!

                          Cayden got the an awesome opportunity to see the Shriners in Shreveport, Louisiana on March 22,2011.....It was a long trip....We left early on the 21st, went to the hospital on the 22 and then started home.....While at the Shriners We meet such awesome people....I was very impressed with the whole experience and so was Cayden....He was amazed by the colors and toys...that filled every inch of this hospital. We were at the hospital a whole 2 hours......and it was a blast!
                         First they did more x-rays and then we went back to a room where a PA came in first and then the doctor. I know how this disease works, but it still caught me off guard when the doctor said he compared the x-rays he could see a big difference from January until now. He said they wanted to do an Osteotomy which is basically where they put a pin through the femur up through the ball of the hip....it would mean no braces which are usually worn anywhere from 12 to 18 months...but he would be walker for 6 straight weeks with little weightbearing on the hip....then he could start the process of getting his hip used to the weight.........the hospital told us they wanted this procedure done with in the next 4-6 weeks.
                          It was very emmotional for both Cayden and myself. After taking in all the information we returned home where we discussed the option with his dad and chose to get a second opinion before we jump into things!........So March 29 we will obtain our second opinion at OU.......
                          Again I would like to stress that the Shriners took awesome care of us the whole way around. Next time you go to make donations think about the Shriners and the awesome things they do for the children!

Cayden's journey........First appointment

                        01/06/2011- Our appointment with the orthopedic doctor didn't go as well as expected. Up until this point every doctor we spoke with was very concerned. We walked into the office this day unsure as to what was gonna happen. We always prepare for the worse and pray for the best!
Throughout the appointment I had alot of questions and most of them wasn't answered. This Orthopedic doctor wasn't concerned with the pain or the long term affects of this diesease. The final determination was that we were going to "wait and watch" for three months and return for x-rays. Two weeks went by and Cayden was in terrible pain, so we returned to speak with him. He basically said that Cayden was using the pain to get out of doing things and that I was over reacting. I was not happy with what he had to say......upset and annoyed I decided to seek a second opinion.


                       I immediately contacted his primary care physician and requested another referral for the second opinion. After several days of waiting I finally got a call that the new appointment with Children's OU would be on April 20th 2010......That was the soonest they could get Cayden in.

                      A Month went by and several different occasions Cayden would wake up in severe pain or couldn't walk. When I had enough I contacted the Orthopedic department at OU again and insisted that Cayden get in sooner....finally a sigh of relief Cayden's new appointment got moved to March 29,2010.

Cayden's journey........

                               I am the mother of an awesome 5 year old little boy who already has faced more medical issues than a boy his age should.....and with this experience he has done some pretty amazing things......he has over come kidney disease, fighting asthma and now battling Perthes.
                               For those who don't know Perthes is a rare hip disease that robbs our children of their childhood. Few have heard of this terrible diesease and even fewer know how to treat it. Perthes is where due to lack of blood flow to the hip it begins to break down and deteriorate....this is a very painful and life altering disease not just for the child, but the whole family.
                              

                               On the morning of 12/30/2010 Cayden and I were going to have a VCUG done on his kidneys due to an ultrasound showing an adnormal hump on one of his kidneys....little did we know we were fixing to be blind sided by something we never knew exsisted.
                                As we walked the long halls of Children's OU hospital I noticed Cayden started to limp....then started to complain that his leg was sore. Up until this exact day he never even showed a sign anything was remotely wrong with his leg. So I picked him up and finished traveling down what seemed to be the never ending hallway! This was a very emotional day for all of us, this "hump" could be almost anything....very nervously Cayden went through this uncomfortable procedure like a champ....due to him still limping I carried him back down every long hall we previously traveled....little did we know what was in store for us.
                                Later that evening Cayden stopped limping.....puzzled I just thought he played really hard the night before and maybe he was just sore...after all boys are always jumping,climbing and running all over everything!! This was on a Thursday and then the weekend went great...we had so much fun! Monday morning Cayden woke up at 6 in the morning screaming in pain.....and he couldn't walk.
                                As fast as I possibly could I got him dressed, him screaming the whole time, loaded him up and off to the ER we went....after about 45 minutes of waiting to be seen Cayden was up and walking and playing around......at this point I am thinking this kid needs a grammy....the doctor still decided to do X-rays and came to the conclusion that he had a "strained" hip. Me not knowing any different and out of answers had to take what they told me as fact....after all he is now walking and playing just fine.
                                 January 3,2011- after practically making myself sick worrying about how the VCUG turned out I finally called the doctor at the children's hospital....that is when the nurse broke the news of Perthes disease which hit us like a ton of bricks...I remember telling that nurse no it was a VCUG of his kidneys not a hip....and insisted she recheck the name and date of birth again....and again she verified and told us we needed to get him to an orthopedic doctor ASAP! At this point we had a name for this "disease",but didn't have a single clue what it was. That very next day we were in the Orthopedic office very nervous at what this was....and this is where his journey first began....