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

Monday, March 26, 2012

Multiplier Prediction

There is an application available for my iPad called "Multiplier".  It's icon is below:
During the monthly LLD chat that Dr. Herzenberg and Dr. Standard host, they mentioned this app as a tool that can predict the limb discrepency in adult hood, based on a child's current stats.  So, I figured if they're supportive of it, I would give it a try.

I had to select Femur, Female, input Elsie's DOB and the current discrepency (8cm).  This spit out a calculation of 12.4 inch discrepency at full growth.  Matt and I obviously aren't expert measurers, and we aren't trusting Elsie's future to an iPad app.  However, it's the first prediction we've got.  Unfortunately, it is a steep difference.  Within the next few months Dr. Nowicki and Dr. Standard should be able to give us more percise predictions, as well as what the implications of such predictions are.  It is a neat tool though.

Saturday, March 24, 2012

Change of Doctors

Originally, we wanted to see Dr. Paley and shared our brief communication with him. However, since then we did finally make the decision to switch to Dr. Stanard and Dr. Herzenberg of RIAO in Baltimore. We're seeizng Dr. Standard on May 10th and I'm very excited!

Thursday, February 23, 2012

Tough Choices

25 Months ago today I became a Mommy.  Ever since I've been making choices.... how long to breastfeed, when to start feeding food, what type of childcare we wanted, when to have another baby.... the list goes on.  Some of these choices were easy, even fun to make.  Others were given greater consideration prior to actually having my answer.  It's part of my role as a parent.  I've been given my children's future as the greatest responsibility.  Of course I knew I'd be making choices on their behalf.  But nothing could really prepare me for the choice I'll soon be forced to make - how to treat Elsie's PFFD. 

Lately I've been obsessing about what decision we will make.  Limb lengthening, rotationplasty, amputation...something else?  I don't know the risks and benefits of each to truly make an informed decision, but within the last week I can't think of anything else.  I am thinking about it 24/7. 

It all started from last week's chat when Dr. Herzenberg said Elsie's leg looks to be on the severe side of PFFD.  He mentioned a total of 7 surgeries.  Initially I was relieved he thought he could do surgeries.  That's what I've been hoping to hear.  BUT then my wheels have been going since then.  If Elsie had surgery to reconstruct her hip at 2 and then 6 surgeries for limb lengthening..... what would her childhood be like?  I'm guessing that the 6 surgeries is comprised of 3 to put on a fixator and 3 to take it off.  If that's the case, I've seen in multiple sources that a fixator is on for 8 months for each lengthening.  If Elsie has 3 lengthening surgeries, that's a total of 24 months in a fixator.  24 months of cleaning the needles everyday, 24 months of possible complications leading to chronic pain.  If this was the path we chose, would Elsie get a fun, carefree childhood?  Also, I'm starting to wonder what the increased risk is that's associated with greater discrepency.  Will there be a chance that we could go through these surgeries and her leg be shorter still?  If lengthened to meet the right leg eventually, how strong and functional will her left leg be?  We are making a list of all of the concerns we have so that come June we can ask Dr. Paley. 

Aside from the Physical concerns that Elsie may face, I'm wodnering how in the world we'd make it happen?  We live and work in Michigan.  To have so many surgeries and recovery in MD or FL we'd have to take off a significant amount of work.  Not to mention the finances associated with living in a hotel or short-term apartment each time.  The worst part to think about?  If I'm in FL or MD for 4 months at a time, where would Mila be?  I can't stand the thought of dragging her away from home, but even more so I can't stand the thought of her not being with me.  But then I think of the fact that part of those 4 months are bound to intersect with the school could she stay with me.  My only logical answer to this is to MOVE.  Seems far fetched I know, but it's the only way I feel like we could stay together as a family, keep the girls in school as well as Matt and I being able to keep our jobs. 

So, needless to say, the Limb Lengthening is exhausting to think of.  Are the benefits worth the physical toll it could take on Elsie? 

On the flip side, I recently connected with a family whose little girl had her leg amputated at 9 months due to PFFD.  Her mother graciously has been open with me on their experiences and with photos.  Her daughter learned to walk with her prosthetic leg, her daughter had a single surgery and may never have another surgery again, her prosthetic is all that she knows (and as Mom says "she loves it!").  This beautiful little girl is seemingly able to enjoy her childhood just like others her age.  The prosthetic is functional and isn't noticable visually unless you're looking for it/know it's there.  This mom told me that they've never looked back.  So in April we see Dr. Nowicki again.  I want to find out more about our non limb lengthening options and the associated risks. 

Hopefully come June after seeing Dr. Nowicki and Dr. Paley, we'll have a good idea of our options and the risks/benefits of each.  Matt is trying to wait to think about it until we have all the knowledge... I wish I could. 

I pray alot about Elsie.  I want to make the right decision, I want a miracle in her leg, I want to know what God's plan for her is.  Right now my heart and head are pulling me towards amputation.  Seeing the little girl with the prosthetic calmed me.  I saw what I want to see in my daughter.... a little girl loving life.  A little girl in her home, with her family....every day.  But I can't help but wonder, am I REALLY leaning this way because I think it'll have the greatest results or because it'll be the easiest option?  It is obviously easier to not travel and go through all the surgeries.  But deep in my heart I'm feeling this is (with my current knowledge) the best.  If it comes down to it and we have an amputation.... will 18-year old Elsie understand the decision?  Will she wish we would have tried something else?  What would she have done differently?  These same questions would apply even in the event of Limb Lengthening.  Would Elsie be regretful of all the time she spent in the hospital?  The time away from home?  The pain associated with the needles?  Was it worth the years and years of physical sacrifice in the end?  And that's the worst part - no path is the easy one.  There isn't a right and a wrong.  And it's a decision I don't want to make - but at the same time, I trust no one else to make it for Elsie.  She's my precious little girl and no one cares for her like I do.... and no one would put the time and consideration into choosing like I will.