Merritt has an appointment at Shriners Hospital in Tampa on Wednesday. We are excited and anxious about this. If you have read my previous posts, you know that we have been given 2 estimations regarding Merritt's LLD. The first at a little over 2 inches and the second at almost 5 inches. I am thinking that a third opinion will really help us to understand Merritt's leg.
Plus, Shriners seems totally awesome! If you haven't checked out their facilities, you can at this link... Shriners Tampa. I watched the online tour and was really impressed.
Well, our appointment is Wednesday morning at 10:30. The whole family is going. So, it should be an adventure. 4 hours in a mini-van with an almost 1 year old, a 2 1/2 year old, a big grumpy 29 year old (yes, that would be my husband, ha), and me - as a nervous wreck! My biggest fear is that this doctor is going to give us even more bad news; that Merritt's LLD is going to be even larger. Honestly, I don't know how I will even handle that.
Please keep us in your thoughts and prayers. I'll let you guys know how it works out!
Sunday, February 28, 2010
The Bar
Yes, I am alive. Sorry I haven't posted in a while. I've been in a book somewhere! Thanks to all of you who have emailed me. I am so happy to hear from all of you and hope that everything is going well for you and yours.
Thursday, February 25, 2010
Visit with Paley Part 2: LLD plan
The consultation with Dr. Paley was rather quick... well, I thought it was quick. Dr. Paley checked out Merritt's x-rays and Merritt's leg/foot. After commenting on how fabulous Merritt's foot was looking, he began talking about what is wrong with Merritt. Well, as it turns out, Merritt doesn't have Fibular Hemimelia or Tibial Hemimelia. Both of those bones in his left leg are shorter than the ones in his right leg. So, really, he just has one leg proportionately shorter than the other. Apparently, there is no wordy diagnosis for Merritt's condition. A fact that I find a little weird, but whatever. I guess, "He has a 'short-leg" will have to do for now :)
Dr. Paley explained that Merritt's LLD at skeletal maturity will be well over 4 inches. This news really shocked us. This estimation was almost 2 times as much as our footy doctor's estimation. UGH. Well, after talking about that a bit he explained what his plan would be for Merritt... According to Dr. Paley's SUPER expert opinion, Merritt's LLD requires 2 lengthening surgeries to correct. One at 3 years of age and another when he is a teenager... Double UGH.
So, that news really sucked. We were really hoping that Merritt would at the most require one corrective procedure. My heart was just through the floor. Then he continued on to explain that there are many things about Merritt's condition that we will just have to "wait and see" about. Such as, is he missing any other bones or ligaments or whatever. (Oh, that reminds me - Merritt is missing his ACL in his left leg. Anyone have any advise how to keep a little boy out of contact sports? Man oh man.)
We are set to bring Merritt back to Dr. Paley in March for a follow up visit and to get Merritt's first shoe elevation prescription. More on that later!
Dr. Paley explained that Merritt's LLD at skeletal maturity will be well over 4 inches. This news really shocked us. This estimation was almost 2 times as much as our footy doctor's estimation. UGH. Well, after talking about that a bit he explained what his plan would be for Merritt... According to Dr. Paley's SUPER expert opinion, Merritt's LLD requires 2 lengthening surgeries to correct. One at 3 years of age and another when he is a teenager... Double UGH.
So, that news really sucked. We were really hoping that Merritt would at the most require one corrective procedure. My heart was just through the floor. Then he continued on to explain that there are many things about Merritt's condition that we will just have to "wait and see" about. Such as, is he missing any other bones or ligaments or whatever. (Oh, that reminds me - Merritt is missing his ACL in his left leg. Anyone have any advise how to keep a little boy out of contact sports? Man oh man.)
We are set to bring Merritt back to Dr. Paley in March for a follow up visit and to get Merritt's first shoe elevation prescription. More on that later!
Thursday, February 11, 2010
Visit with Paley Part 1: Four toes...
So, I'm studying away and need a break. I thought I would share a bit of our visit with Dr. Paley. Rather than get into any real meat of the visit, I kinda got off on a tangent... this is one of my favorite stories to tell when I am kinda down about Merritt's funny foot. I hate to think that he will suffer and I hate not knowing exactly what is going to happen with him. So, whenever I start thinking like THAT (there I go again!) this really makes me feel better. But I promise to get into some "meat" soon... Anyway, here ya go!
We reached Dr. Paley's office, checked in and were sent directly to have Merritt xrays done. While in the xray waiting area, I "overheard" a mother talking about her daughter. Her daughter, now about 9, had been diagnosed with FH and had a large LLD already... about 6 inches. I couldn't help but cry while listening to the mother speak. She was so proud of her daughter. You see, the little girl had taken her LLD and ran with it... literally! She was an all star athlete on pretty much every sports team you can think of. The woman must have noticed me crying and then we got to talking. I explained to her what it meant for me - mom of this little guy in my arms who is not even able to sit up yet - to hear that her daughter was so, well, functional. I wasn't crying because I was happy Merritt would most likely be able to play sports, I was happy because he would most likely walk. I know, I know... our clubfoot doctor had told me that Merritt would walk, but I guess it just meant more coming from another mom who knows what I am going through. Plus, she was southern and had a serious accent. For some reason, I always trust Southern Folk more :P
So, we talked. Then, the cutest thing happened. The little girl - who was drop dead gorgeous, btw - walked out of the xray room. Her mother said to her, "Look here, this little baby has what you have." Then, and I will NEVER forget this, the little girl said to me in true Georgia Peach fashion, "Yeah, but see, I's only gots for toes!"
We reached Dr. Paley's office, checked in and were sent directly to have Merritt xrays done. While in the xray waiting area, I "overheard" a mother talking about her daughter. Her daughter, now about 9, had been diagnosed with FH and had a large LLD already... about 6 inches. I couldn't help but cry while listening to the mother speak. She was so proud of her daughter. You see, the little girl had taken her LLD and ran with it... literally! She was an all star athlete on pretty much every sports team you can think of. The woman must have noticed me crying and then we got to talking. I explained to her what it meant for me - mom of this little guy in my arms who is not even able to sit up yet - to hear that her daughter was so, well, functional. I wasn't crying because I was happy Merritt would most likely be able to play sports, I was happy because he would most likely walk. I know, I know... our clubfoot doctor had told me that Merritt would walk, but I guess it just meant more coming from another mom who knows what I am going through. Plus, she was southern and had a serious accent. For some reason, I always trust Southern Folk more :P
So, we talked. Then, the cutest thing happened. The little girl - who was drop dead gorgeous, btw - walked out of the xray room. Her mother said to her, "Look here, this little baby has what you have." Then, and I will NEVER forget this, the little girl said to me in true Georgia Peach fashion, "Yeah, but see, I's only gots for toes!"
Thursday, February 4, 2010
Dr. Paley to be on Fox!
I just received this email from Dr. Paley's office...
I thought that you might like to know that Dr. Paley will be featured tomorrow, (Thursday, Feb. 4) at 10:00 pm on Fox 29. This segment will highlight his work with a very special 4 year-old girl from Philadelphia. This patient was born with Congenital Femoral Deficiency resulting in a deformed hip and a significant limb length discrepancy. When she was born several doctors advised Eva’s parents to amputate her leg which would have resulted in a lifetime of artificial limbs. The results of Dr. Paley’s intervention are truly remarkable and this child eventually will have two legs of equal length.
I thought that you might like to know that Dr. Paley will be featured tomorrow, (Thursday, Feb. 4) at 10:00 pm on Fox 29. This segment will highlight his work with a very special 4 year-old girl from Philadelphia. This patient was born with Congenital Femoral Deficiency resulting in a deformed hip and a significant limb length discrepancy. When she was born several doctors advised Eva’s parents to amputate her leg which would have resulted in a lifetime of artificial limbs. The results of Dr. Paley’s intervention are truly remarkable and this child eventually will have two legs of equal length.
Tuesday, January 26, 2010
Leg Lenth Discrepancy...UGH!
As many of you know, Merritt wore a cast on his entire left leg for the first few months of his life. Practically, this meant that I only actually saw his little leg for a couple hours each week during his cast changes. Well, at one of these cast changes I noticed his left leg seemed to be shorter. After alerting the doctor, Merritt was forced to endure manipulations, stretches, and finally x-rays which confirmed what I had feared most from day one... there is more wrong.
Merritt was diagnosed that day with Fibular Hemimelia. A condition that Merritt's doctor explained, was not my fault. How could it not be my fault? I made this little man... I screwed him up... all of these thoughts whirled through my mind. I know I shouldn't feel that way, but I would be lying if I said that I still didn't believe it to be true.
The doctor explained further that Merritt's leg will always be proportionately shorter than his right leg and that this most likely caused his clubfoot. He went on to say that most of the children born with Merritt's condition have four toes, at the most, and we should feel "lucky" because Merritt has all five. Yeah, that's what I felt... lucky.
Treatment... nothing we could do then. Just wait and see. Wait and see how much of a discrepancy Merritt would have. At that point, the little guy was just too little to properly predict. But, the doctor gave his best guess, which was about 2 inches at skeletal maturity. 2 inches would require one leg lengthening.
But what happens if there is going to be more of a difference? How is a leg lengthened? I needed answers.
As soon as we made it home I started the internet research. I joined blogs and emailed doctors around the country. I actually emailed Dr. Dror Paley at 2:30 am and he called me back at 7:15am that morning!
At the time, Dr. Paley was practicing in Baltimore at the time, but informed me that he was considering moving his practice to Saint Mary's Hospital in West Palm Beach.... 45 minutes from our home!!!! Seriously???? YES!!!!! If there was ever a time to thank God... I think I found it.
Long story short, we made an appointment to see the good doctor. More on that later! Now, my time is up and I have to STUDY! (Yup, studying for the Florida Bar and taking it Feb 23 and 24. ahhhh!) :)
Merritt was diagnosed that day with Fibular Hemimelia. A condition that Merritt's doctor explained, was not my fault. How could it not be my fault? I made this little man... I screwed him up... all of these thoughts whirled through my mind. I know I shouldn't feel that way, but I would be lying if I said that I still didn't believe it to be true.
The doctor explained further that Merritt's leg will always be proportionately shorter than his right leg and that this most likely caused his clubfoot. He went on to say that most of the children born with Merritt's condition have four toes, at the most, and we should feel "lucky" because Merritt has all five. Yeah, that's what I felt... lucky.
Treatment... nothing we could do then. Just wait and see. Wait and see how much of a discrepancy Merritt would have. At that point, the little guy was just too little to properly predict. But, the doctor gave his best guess, which was about 2 inches at skeletal maturity. 2 inches would require one leg lengthening.
But what happens if there is going to be more of a difference? How is a leg lengthened? I needed answers.
As soon as we made it home I started the internet research. I joined blogs and emailed doctors around the country. I actually emailed Dr. Dror Paley at 2:30 am and he called me back at 7:15am that morning!
At the time, Dr. Paley was practicing in Baltimore at the time, but informed me that he was considering moving his practice to Saint Mary's Hospital in West Palm Beach.... 45 minutes from our home!!!! Seriously???? YES!!!!! If there was ever a time to thank God... I think I found it.
Long story short, we made an appointment to see the good doctor. More on that later! Now, my time is up and I have to STUDY! (Yup, studying for the Florida Bar and taking it Feb 23 and 24. ahhhh!) :)
Thursday, January 21, 2010
Bracing
The above photo is of Merritt's FIRST DAY in his brace... an exciting and challenging time!
I feel like I could write an entire book on boots and bars! I did so much research, emailed doctors, moms, dads... needless to say I became a little obsessed. I guess it was my way of controlling some portion of my son's situation.
After all the research, I decided that I NEEDED to get Merritt in a Dobb's brace and Mitchell Sandals. For more information on these items, just click!
While our physician regularly proscribed the Mitchel Sandals, I was the first in my doctor's practice to use the Dobb's brace. In fact, I had to convince the man that the brace was worth trying. Fortunately, it all worked out and Merritt was in his Dobbs brace and Mitchell Sandals as soon as his last cast was removed.
Of course, we went through the normal h*ll of starting bracing. Merritt wasn't accustomed to having both of his feet on "lock down." But, after about a week, he was well adjusted and everything has been smooth ever since! He even began crawling at about 81/2 months... a day that I was so looking forward to :)
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