Treatment Plan

Our visit to Baltimore and the Ruben Institute of Advanced Orthapedics (RIAO) was great.
 First of all the drives were pretty uneventful and Elsie did so great in the car! Plus I thoroughly enjoyed driving through the Appalachians. Gorgeous!

When we got to RIAO it was a beautiful sunny day.... I took this as a sign of what would follow :)

We arrived at 1010 for our 1100 appointment. By 1050 we had been checked in, gotten X-rays and talked to a fellow. Not bad considering we were told we may have a few hour wait!! By 1130 Dr. Standard came in with Lee (a nurse who I've been emailing and does the chats) and with the fellow, Fredrico. We talked a lot... Great discussion. We're really comfortable with the RIAO staff and Dr. Standard.

Summary of Dr. standard's diagnosis:
Current leg difference: 7.5 cm
Projected Leg difference in adulthood: 24cm give or take
Description of her severity "mild to moderate"
Evaluation of other parts of her leg (ankle, knee, foot): Appears to have good joints. Many cases are not as fortunate, though no promises that knee surgery won't ever be needed (or any other for that matter)

Here is a summary of our treatment plan:
15-18 months: Superhip Surgery This is like a salad bar surgery... Meaning there are about 15 possible things he could have to correct, Elsie may need 1 or up to 15. One thing we know she'll need is the femoral head to be straightened. This procedure will likely add 2cm to her left leg.

3-4 years: First lengthening. This will use an external fixator during the recovery. We will have 14 weeks of potentially staying in Baltimore for physical therapy and follow-up visits with Dr. Standard. If we decide to try and do physical therapy at home, we would only stay between 2-6 weeks in Baltimore and then come home. We'd then have to visit every two weeks through week 14. After week 14 we'd most likely return home and send periodic X-rays to Dr. standard until he calls the lengthening complete. At that time we'd return to RIAO once again and have the fixation removed. This procedure could add about 7 cm. This will be the most trying and challenging portion of Elsie's treatment. After hip and first lengthening, Els' legs will be pretty close to even, however as she grows, the difference will grow as well. Nice to think though that for a little while the difference won't be too noticeable - a glimpse into the overall success.

8-10 years: Second lengthening. This lengthening would use an internal lengthening device. No external fixation this time. This technology is something Dr. Standard developed (with others). We'd have physical therapy, time in Baltimore and of course recovery. however, not as intense as the first time. Again this could add 7 cm 10 years or so: remove a growth plate in her right keg. This is an option if we wanted to reduce the amount of lengthening needed in her left leg. Not sure what we'll decide, but this could eventually make up for 5 cm of the difference. Overall, this move would reduce Elsie's full-grown height by 2" which isn't a big deal coming from parents who are 5'10" and 6'2".

13-15 years: Final lengthening!!! Same as the second. This is where we'd make up the final difference. Girls' legs are generally done growing about 14, so we will do Elsie's surgery when she is done. This lengthening will depend on if we shorten right leg and the success of others.
So that's our going forward plan!!! We go back to RIAO to have a check-up and to plan/schedule her hip surgery in about 6-8 months. I'll update on other parts of our visit soon. :)