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.......
Cayden....
Thursday, March 31, 2011
Monday, March 28, 2011
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!
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.
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.
Saturday, March 26, 2011
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....
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....
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