Decisions, decisions

I took Merritt to our CF doctor last week for his check up. Merritt's foot is doing well... whew. Dr. Ramono demonstrated some more stretches he wants me to do with Merritt a few times a day. I HATE doing them b/c Merritt hates it and it seems to be kinda painful. Of course, we are still going to do it, but I just wanted to complain a bit :)

I want to make sure that we are doing all the stretches correctly, so I am going to start PT with Merritt again. There is a nonprofit in our area that helps with the cost of services for kids that need them. The problem is the kiddo has to "qualify" by having a "qualified issue" and some type of developmental delay. I made Merritt an appt for an eval on April 22. I'll keep you guys updated on that one... lets keep our fingers crossed!

As for his LLD, Dr. Ramono disagrees with Shriners' diagnosis in one respect. He believes that Merritt will definately require at least one lengthening. As much as I want to believe that he is wrong, I have to agree with him. So, the problem which faces my family now is, when should we do this lengthening? Should we follow Dr. Paley's advice and have a lengthening done when Merritt is 4? or should we follow Shriners' advice and wait until he is older? Both opinions have valid arguments in their favor. For example, Dr. Romano explained that one benefit of having a lengthening early is that it would help keep Merritt's CF from relapsing. You see, because of the discrepancy Merritt is always tip-toeing which is a big NO NO in the CF world. On the flip side, you can only obtain about 25% of a patient's total height in length during a lengthening. When Merritt is 4 he will be much shorter than when he is a teenager. Therefore, we could obtain more length when he is a teen and that may increase our chances of only one lengthening. I hope this is all making sense... sorry if I am babbling! I guess we really need to wait and see what happens over the next couple of years. Those of you with older children out there know that 4 years old is going to be here before we know it! So, when I allow myself the think about it, I really feel the pressure.

On a lighter note. We dropped off Merritt's little shoe at the orthotist last week to have the elevation put on it... one inch! I think that this will really help him obtain the balance he needs to start walking. He is trying SO hard to walk now. It is so darn cute! Actually, over the past couple of days he has been making huge strides. He has been standing by himself very often and for longer than ever. I better get on my running shoes... I'm about to have a 2 year old and a 1 year old, each running in different directions! Gotta love it!

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!

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!"

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!) :)