Spring 2015 Update

Wow I can't believe it's been almost 2 years since I've posted.  Well...actually I can.  We've had it pretty smooth for the last 2 years.  She's growing and no surgeries have been needed.  On the 11th and 12th of May we went out to Minnesota for her annual update.  It was a long and informative visit.  We do so much in 24 hours; it's exhausting.

Monday morning in Ohio we put the 3 older kids on the bus to school, took two planes and arrived in MN by 2pm.  That night we had scheduled a meet up with 2 other kids who are around Katelyn's age and they have FH just like Katelyn.  That's where we met Lilian.  You see kids with FH generally have 1 thing in common, they're missing their fibula bone.  However, there is a huge spectrum of other complexities that kids can have right along with FH.  For example with Katelyn she has 3 toes on her little foot, she's missing her ACL and PCL in her knee and so on.  But Lilian, her little details are just like Katelyn's which made this visit (and discovery) so special.  Lilian is about 3 months younger than Katelyn and her LLD (leg length discrepancy) is the same, she has 3 toes on her little foot and her walk even looks the same.  They look like FH twins!

Lillian (on the left) is a mirror image of Katelyn. Bigger legs bent in the back, smaller legs in the front

Smaller legs on the outside, bigger legs on the inside

It was so nice to be with other parents of FH kids and to share our joys and fears, as well as to laugh and cry together. It can be so lonely being the parents of a 1 in 40,000 child that it's nice to just be with someone who uniquely understands your feelings and can identify with you.

The next morning we went to the clinic in the hospital.  We always get a height and weight measurement taken and a series of x-rays updated.  In the lobby Katelyn got to play with a therapy dog, make a door knob craft and play in a play area.

Every patient got a goodie bag on this day.

Crafts

Lucy the playful puppy.

It was nice to visit with the doctor.  We had been preparing ourselves for him to say she needs a surgery of some sort because we know they are inevitable and he spent some time talking about possible ones that she could need, but then he made the point that for various reasons she doesn't need any surgery at the moment.  Her range of motion in her ankle is improving.  It's not great but it is getting better. She's walking just fine despite her growing difference in leg lengths.  We're up now to 8.5cm difference.  The biggest change we discovered was the discrepancy in her femur bone is growing.  For many appointments it stayed at 1cm shorter than the right side but it's within this last year that I've noticed her knees are not lining up evenly anymore.  The femurs alone are up to a full 2cm difference now.  Actually I've noticed that the whole left side from her hip down is just more petite.  I think for the longest time I tried to compartmentalize this birth difference into thinking it would just affect her from the knee down, however, time has shown that she's just smaller in her whole left leg entirely.  The x-ray did show though that the hip joints are equal in size for now so that's good.

Image from 2013 she was about 1yr. You can see knees are almost even.

Image from Monday. Shortened femur is noticed and smaller left side.

Lastly, we spoke about her leg lengthening surgery, since that's the big one that she'll undergo a few times in her childhood.  Our doctor (different viewpoint than some of the other specialists) really isn't comfortable with lengthening more than 15-20% of the total bone length at one time because of the potential damage it can cause on the joints on either end.  So, while she's so small we've all agreed that we'd rather wait until we can get some significant length when she's older.  We also talked about some new technology being invented.  I love that while Dr. Dahl is older and more experienced he's really still abreast of new technology coming and passionate about his field of expertise.  He's working on some new inventions and if all goes well Katelyn will be in a clinical trial for internal lengthening of her femur bone within the next year or so.  There is still so much to be learned but for now we're content with waiting, both for technology and growth.  I'm also so pleased that Dr. Dahl is very patient in moving forward with surgery.  He realizes that the whole team has to be ready: the child, the parents, and the doctor. 

When you give a toddler your phone to play on and she decides to take pics of all of the
 grown-ups talking. Mom and Dr. Dahl.

For now though it's life as usual. We're having a phone conference in January to see how the clinical trial is progressing and then coming back next spring for a face to face visit.  If anything this journey has taught me to just appreciate today.  It's easy for me to get overwhelmed with what possibilities the future holds, but since we've been given this year pass I'm choosing to enjoy today and let God sort the details out for the future.  After all, He's the one with the ultimate plan for our lives anyways.