Second Visit

Today as I write this it's January 13th.  So much has happened since the first post.  I think I've been delaying updating this because I'm not a great writer and I see so many blogs that are just beautifully written and deep and well I'm just not that great at writing.  But I do want to give you and update and so here goes.

Relocating...

It's strange now how I'm sitting here in an apartment living room in Columbus, Ohio that I realize those who will be among the readers of this post from afar will be our friends in Mankato, Minnesota. However, all along I started this blog so that our friends and family from afar in Ohio and Virginia could be the ones who get the in depth story since they were so far away.  But here some few months later I'm residing with the friends and family in Ohio and no longer with the friends in Minnesota.  Can I just say, how the heck did that happen?  How is it that I just blinked and we're back in Ohio again? I mean really, we're just as shocked as you are that we were moved again in such a short amount of time AND that my husband's company wanted us to go back to where we came from.  I also need to mention that I wasn't as over-the-moon excited when the opportunity came up as you'd think I would be.  So many people thought that I would just be elated.  Yes, returning to "home" was always a dream but we really were making our way in Mankato and we were loving the school, our church, all of our friends, the area and home that we had made for ourselves in the 3 years we had been there.  But, at the heart of not wanting to leave for me was the fear (and still is) of leaving Katelyn's doctors and specialists behind.  It's a big feat to find childcare for siblings, get on a plane, rent a car, book a hotel room, etc...every time you need to see the doctor.  Yes that part made me really hesitate for a few days before we could say yes.

Meeting Amanda..

Shortly before we left we did return to Minneapolis for another assessment of Katelyn's leg.  While we were up in the "big" city we stopped by the Mall of America where I knew of a woman named Amanda whom I'd met online. Amanda is a woman ( about my age) and has FH like Katelyn.  Amanda was working at one of the stores in the mall and we stopped in for a visit while she was there.  It was really great actually to not only meet someone in person who has the same differences but she could help show me what those differences look like as an adult.  I realized through talking with her that while I look at the difference in length in Katelyn's infant leg as well as all of the things that could possibly hinder her, Amanda was able to show me that as an adult the differences just aren't as noticeable. Yes, Amanda's severity of FH and Katelyn's severity do differ but I realized that what I see on a baby is not going to be as drastic on an adult.  Amanda said "I have a shorter femur, see my knees aren't even" AND I COULDN'T TELL.  She also said "I have a smaller foot too"  BUT I COULDN'T TELL.  I guess what I'm trying to say is that it was such a shift in perspective to realize that what we see today may not be that big of a deal down the road.  Amanda:  I know you will read this and I just want to thank you for that visit.  You have helped make a difference in the way I worry for my child and for her future.  If anything you helped to ease the worry.  You gave me hope, such a priceless gift.  Thank you.

So soon...

On to the doctor's appointment.  We met with Dr. Dahl again and got to do more x-rays.  He discussed that her femur is now 1 cm shorter than the other (I knew that was coming) and that her tibia is now 5 cm shorter than the other.  Its a significant difference.  It's nothing I/we didn't know.  However what I wasn't ready for was the discussion of her Achilles tendon being so tight and how he wanted to do surgery within the next 4-6 months (before she starts to walk) to not only correct the tendon tightness but to straighten her leg.  Part of her length discrepancy is due to the fact that the tibia is curved like a rainbow in her leg.  She was born with a scar on the top of her shin which marks where the apex of the bowing in her tibia happens.  During this surgery he wants to cut into that bone, reset her leg in a straighter position, insert some metal pins for stability, lengthen her tendon as well and do some soft tissue reconstruction.  Whoa.  This makes getting tubes in the ear look like a walk in the park.  Yeah I wasn't ready for all of that.. You mean THIS spring?  Really?  So soon?  After the surgery her leg is casted for 30 days and then we will return again to Minneapolis for the removal and assessment of the procedure.  Thankfully the doc's scheduler has reached out to me because I found myself getting intentionally distracted with the household relocation to actually sit down and make the appointment.  Right now we've got it set for April 24th.  We will fly on a Monday get the assessment/pre-op appointments taken care of on Tuesday, Wednesday is the surgery and then we will remain in the hospital for 3 days post surgery before returning home.  This surgery though is one of the smaller procedures that's in store for her future.  We as her parents have chosen the road of reconstruction and are praying that it's the right decision.  Just someone please remind me of that when I'm laying my head next to hers in the hospital crib.

From the beginning...

If you're reading this you're either family, friends of ours, acquaintances or perhaps you're like us, a parent who has a child diagnosed with Fibular Hemimelia (FH) and you have no idea what it is so you've googled it and found this site. To those parents: we are just like you and this is a blog of our journey as parents with our youngest daughter as we reach each hurdle in her life. It's been difficult to communicate with all of our loved ones as there aren't enough hours in the day to talk to everyone.  I realized quickly that if I'm going to keep normalcy in this house with 4 kids, I can't talk about Katelyn all of the time.  So hopefully this blog will help relay information when I can't get to you personally.

As of the date of this post we have an almost 11 week old little girl, Katelyn.  She was born via c-section and shortly after her birth I remember the pediatric nurse handing her to me, pulling out her little leg and saying "well it looks like some  sort of amniotic banding has amputated her two little toes, and well she also has a scar on her shin from some sort of uterine trauma."  I can't blame them though for being wrong, after all we live in a small town in Minnesota and when this type of thing affects only 1 in 40,000 according to some reports (actually 1 in 10,000 according to our doc but it's rare and so you get the point) the nurses don't see it all too often if at all.  Katelyn ended up going to the NICU because she had some breathing problems that were urgent however that issue had nothing to do with her FH and that complication resolved itself within a few days.  During our stay in the hospital they had X-rays taken of her leg and originally they told us that her tibia and fibula were fused together.  Later we would learn that she actually has no fibula bone altogether thus the diagnosis of FH or the absence of a fibula.  The spectrum of FH is very wide or so we've been told which means that kids can have all sorts of different issues resulting from the FH. Katelyn has a "moderate" case.  The standard treatment for FH is amputation of the limb.  Yes, it is a frightening thought and something I've cried over nearly every time I let myself go there.  However with a moderate case the specialist has said that while we can't take amputation off of the discussion table, there is hope to "salvage" her leg through a list of surgeries and major bone corrections.  I thought the word "repair" would be better but he said "salvage" is the medical term so we need to go with it.  GREAT. 

So in Katelyn's case as of her 7 week old x-ray Dr. Dahl (the specialist) said her hip seems ok (they can sometimes have shallow hip joints), her knee though smaller than normal seems in workable condition (but it's to be determined at this point), and her ankle bones...well he could identify just barely that she had the bones there because my husband's finger bones were in the way during the x-ray.  However we can tell from the outside that something is bent or wrong on the inside.  Her foot is smaller on that leg than on her regular leg partly because she's missing the rays (or the bones inside the foot) as well as the last two toes. Her left leg is also significantly shorter than her right (both the femur and the tibia are shorter), by about 20% and the tendons/soft tissue are also tight giving her foot a pointed down or ballerina look.

So, with that information all there is to do now is wait.  There is so much more that I'd like to say.  I'd like to share words of encouragement that have meant a lot to us or how this is all impacting her siblings and our family, but that will have to come in another post.  There are lots of unanswered questions that we have right now but basically during this first year of life they grow so much so fast that you wait and see how her body is growing and shaping.  Our next appointment is in November and we will know more then. For now though, every day as I change her diaper I kiss her feet along with the bump on her shin (we now know that it's actually her bowed tibia bone inside) and I pray that as she grows that God would stretch her bones and perhaps allow the ones that she does still have to grow in a way that would give us the best outcome for her to keep her leg.  However, regardless of the outcome with her leg, her father and I know fully that she is knit together perfectly just the way God created her.