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!

Thursday, March 11, 2010

Shriners RULES!

Hi there everyone! Sorry I have been MIA. My laptop is like a toddler magnet!

Anyway, our visit with Shriners went really well. Here's the brief overview. In their opinion, Merritt does in fact have Fibular Hemimelia. We will have to go back every six months for a while until we compile 3 sets of xrays. At that point, they will enter all the data into a Moseley graph and then give us an estimated LLD. If the estimate is under 5 centimeters, then Merritt can opt for the epiphysiodesis,
If the estimate is over the 5 cm, then Merritt will have to have his leg lengthened... and of course, the possibility of 2 surgeries. BUT... and this is my favorite part... . Here's what the PA said, and I quote, "It is possible that you guys have a lengthening in your future, but probably not." WOOHOO! Okay, I'm not going to get my hopes up too high, but I sure have my fingers crossed!

So, on top of all that, the hospital was great! The whole place was really geared towards the children and their caregivers. Tons of toys, playhouses, playgrounds, and even a little gift for each child in the waiting room! Each member of the staff that we spoke to was extremely sweet and helpful. They even made strides to include my older son by giving him stickers and talking to him. That was huge! Turner really felt included and that helped him to stay in a much better mood :)

As for Merritt's foot, we have an appt with our amazing footy man, Dr. Ramono, on March 17th... (deep breaths and fingers crossed. Man, I seem to be doing a lot of finger crossing lately! haha.)

Alrighty all... Mickey Mouse Clubhouse is about the end. My time is up! Hope you all are doing well.