Sunday, May 13, 2012

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. :)

Monday, May 7, 2012

Recent Visit with Dr. Nowicki

Aghh!  Where has the time gone?  Over a month without an update and I have so much to share!
On Wednesday, April 25 we visited with Dr. Nowicki here in Kalamazoo.  We had some x-rays done of her knee and hip.  Good news…. Dr. Nowicki was very pleased with the results.  Based on what he saw, he definitely thinks that our best option will be limb lengthening.  What a relief, I just hope that Dr. Standard and Dr. Herzenberg can confirm.  I know limb lengthening will be a trying process, but I feel so blessed that we have a clear front-runner, that it isn’t a ‘six to one, half dozen to another’ scenario…. where Matt and I are forced to choose what’s best. 
So, you’re asking what was it that made Dr. Nowicki pleased?  First of all, he was pleased with her movement of the leg, and to hear that she is bending and rotating it well without signs of pain… (reminder, early on any movement in her leg was obviously painful – leading to her wearing a harness)  Also, the x-rays showed what appeared to be the femur being held into place, even though we couldn’t see a femoral head.  A certain gap in the hips, along with her movement, lead him to believe that there is a femoral head present, but we just can’t see it on the x-rays (whether it hasn’t ossified or it may be turned).  This is great news because often PFFD children are missing their femoral head.  On top of that, Dr. Nowicki thought her hips looked great and said that hip reconstruction may not be needed!  Though not definite, I take any good news we can get J 
Soon I’ll add a few shots of her x-rays from 4/25/2012…. 6.5 months old.

Trip to Baltimore!!!!


Here it is Monday night and we leave Wednesday morning for Baltimore!  I CANNOT believe it!  We are so close to the appointment.  What am I feeling?
Overwhelmed – so much to do, in so little time! 
Nervous – Baby and 10+ hour car ride (and that’s if we didn’t stop or hit any construction).  Oh yea, I get car sick too.  Plus I know I’ll be a ball of nerves leaving my oldest behind… which brings us to the next emotion.
Sad – I do not, I repeat DO NOT want to leave my 2 year old Mimi.  I don’t think she’ll understand us leaving her but taking Elsie.  Plus, I’ll just plain miss her. 
But, most of all I am EXCITED! – I am excited to meet Dr. S, Dr. H, Lee a nurse and the rest of the RIAO team.  I know we’ll soon spend lots of time here, so I’m looking forward to essentially acquainting myself to a large part of our future.  Wednesday is the first step into a major life event, so how could this not be exciting. I’m very optimistic – I know God will take care of Elsie and I truly believe that RIAO is where we’re supposed to go! 
Expectant – Let it be known, I have high expectations of this trip.  Up through now, we have very little answers on plans for the future, just a list of possibilities.  However, I am confident that with Dr. H and Dr. S’s experience, they will be able to give us a fairly accurate picture of what Elsie will be facing in the next 14-16 years. 
Finally, I’ve never been to Maryland, so it’ll be fun to visit a new place even if expedited!  

Multiplier Q&A


I participated in the most recent chat with Dr. Standard and Dr. Herzenberg on April 26.  Last time I participated they suggested we download the multiplier app for our iPad.  As I discussed earlier, we did this and it predicted a 12.4” discrepancy in adulthood. 
I know my measurements aren’t official since it doesn’t take into account bowing of the bone, nor am I an official measurer.  However, I still wanted to see what the Drs thought of this.
So, I shared these results with Dr. S and Dr. H on 4/26 and they said, even if that were accurate, they could probably perform surgery and correct that severe of a discrepancy!  YAY J