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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!

Friday, March 26, 2010

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!

2 comments:

  1. Lots going on,you're always in our thoughts!

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  2. That is a tough decision. What does the doctor think about the lift reducing the chance of relapse?

    With Matthew (I know, we are only dealing with 1/2 inch difference) it seems that his relapsing has slowed for the first time ever. We are thinking that the lift he started wearing last June could be part of the answer.

    Maybe because it is only 1/2 inch, maybe it was an inexperienced doctor, but his LLD was missed until last year. Because of that, he almost always walked on his tip toe. We thought it was due to a tight heel cord. Little did we know that the tip toe walking was CAUSING the relapsing.

    Anyways, what I am saying is, ask if the the lift could help with relapsing. Maybe with the lift and p/t the surgery can be delayed longer then initially thought.

    And, having lived through 7 yrs of relapsing, I can say, it is annoying, but castings every few months are doable.

    Just a thought. :)

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