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!

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!) :)