family fall 2016

family fall 2016

Friday, February 27, 2015

Mabel update

So many of you incredible people have asked for an update on our sweet Mabel and this was my best way to let you know. For most this will be waaaay more than you want to know :)
 
 
 
 
 
 Mabel was born with left proximal femoral focal deficiency (PFFD) AKA her left leg is shorter than her right. Most research studies to date show that there is no genetic correlation but we know that Mabel's aunt has something very similar so there is most likely a genetic component. As of today, it is ~11 cm shorter but it will continue to grow at a slower rate than the right leg. Her surgeon predicts ~15-18 cm difference if we didn't correct it.
 
 
We met with Mabel's orthopedic surgeon this morning to get some updated x-rays and make a plan to start her leg lengthening surgery in late May, early June. He estimates the surgery to last 3-4 hours and we will spend 2-3 days at the hospital pending no complications. He will break her distal femur (near her knee) and put on an Ilizarov frame that looks like this (We may not be friends Ilizarov frame... sorry!)
 
 
Once the frame has been on for ~4 days, me and Jeremy become the surgeons (in the words of her orthopedic surgeon today). He said "I will be the consultant, you are the surgeon"). Jer's face was a little pale :0 We (and by we, I mean "I") will be turning the "keys" on the frame 3x/ day to lengthen her bone 1.25 mm/day for ~8 weeks. Yes, this will be painful. He predicts it to start as a dull ache and increase as we gain more length which makes sense.  We are trying to get ~6 cm new bone growth with this first lengthening.
 
 She will be able to swim (in clean water) ~ 2 weeks after surgery. We will go in 1x/ week to every other week to have xrays and check for infection risk and make sure the tibia (one of the lower leg bones) is not pulling away from the tendons and ligaments in her knee. This is the most important complication for us to pray against and watch for.
 
She will be non- weight bearing for ~ 10 weeks after surgery so we can complete the lengthening and new bone has time to form. Once this occurs, she can start slowly bearing weight and then we will go in monthly for x-rays. We will also start some PT in this time but it will mostly be done at home.
 
She will have the frame on for ~6 months (1 month per cm we lengthen). The frame will come off around December and she will have to go back to non- weight bearing for 1 month. Then the extensive PT will start. In the past, Mabel has been very good about staying active and doing most of her PT by just being a child and playing.
 
 
What Mabel is most excited about:
  • Her new beautiful wardrobe of flowy dresses (pictured above) that her Lovie has bought her to go over the frame
  • She will get to take ~ 1/2 of her current shoe lift off her shoes!!
What she is NOT excited about
  • People looking at her
  • Wheelchair (especially at school)
  • Pain
  • Not going to the ocean (but her AUNTIE BECCA is getting married at the BEACH in 2 weeks so that helps :)
We will go back in April to finalize surgery details. Until then if you think of us, please pray for her physically, emotionally, and spiritually.
 
If you made it reading this far... go you!!
 
Blessings,
K

3 comments:

  1. Auntie Rachel & Uncle Luke are praying for you, sweet fighter of a niece, Mabel! We love y'all!

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  2. As a momma of a little girl, this brings tears to my eyes and I will DEFINITELY be praying for you all. Keep us posted!

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  3. Praying for all of you! So glad that Phyllis, aka Mimi, keeps us updated at TRH!

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