My son, Merritt, was born with a left clubbed foot and congenital shortening of his left leg. Our journey in understanding his conditions and in seeking the best possible treatments has definitely had its ups and downs. This blog is my way of sharing our experiences. It is my hope that similarly situated parents may use information on this page as a resource and as inspiration. Thank you for visiting!

Sunday, February 28, 2010

Shriners visit coming up this week

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!

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!

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!"

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.