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!!!....
Cayden....
Saturday, July 2, 2011
Saturday, June 25, 2011
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!
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!
Friday, June 17, 2011
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!
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!
Monday, May 2, 2011
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...........
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...........
Saturday, April 9, 2011
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......
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......
Wednesday, April 6, 2011
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!
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!
Tuesday, April 5, 2011
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!
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!
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