Wow. Time flies. If feels like not too long ago she was born,
then a surgery at 9 months, and now here she is 4 years old and the doctor has said
she’s ready for her first leg lengthening. It also feels like not long ago we were in
his office with a newborn being given the choice of amputation or to undergo
lengthening of her leg in the future. But the
actual lengthening part of treatment wouldn’t be until age 4 so it was
manageable to put off emotionally. There
was still time. But here we are. She's 4 now and the doctor feels it's a good time to intervene with limb lengthening. So here’s
the plan for what lies ahead in the near future.
On Tuesday the 26th of July we’ll fly to MN. We’re bringing the whole family.
*A moment about bringing the siblings… We’ve put much thought into whether or not we
would bring the siblings with us or leave them at home with family. For her first surgery (at 9 months) we didn’t
bring them and it was nice actually. She
was young and we could focus on her and we were only gone for 6 days. But now she’s older and lengthening is a much
longer process. Sure it would probably
be easier to only have to focus on her and then we wouldn’t have to buy six
flights and accommodate 6 people for a few weeks but we ultimately decided that
the older siblings can be at times her source of energy, strength, joy and
distraction which is much more important than the cost of plane tickets. They bring a lot of direct value to the table
when it comes to her emotional care. Also, at this point they know more about what
she’s going to go through than she does and it affects them greatly. So the decision to bring them was more about
the family as a whole and having us walk this road together, not leaving any of
us in the dark for better or for worse (or richer or poorer). We are a family. We will get through this together.*
The afternoon of Tuesday the 26th we will meet
with the doctor and review his plans. We’re
planning on heading to Mankato shortly after to drop the big kids off and to
visit with some good friends.
Wednesday at 7am we’re due into the hospital. Surgery is at 8:30am. It takes a few hours I believe. During this surgery the tibia bone is cut horizontally and a fixator
is placed on her leg which has between 13 or so pins that go from the outside metal frame, through the skin and
are screwed into her tibia bone on either side of the bone break. Up until recently the process of
lengthening a limb was that the parents would daily use a key to turn the
struts of the fixator so that it would slowly pull the break in the bone
apart. However, Katelyn is going to have
a slightly newer technology where 2 motors are placed on the fixator and the
motor will make the turns up to 300 times in a day in lieu of the parents
turning. It’s so fractional of a turn
that it’s supposed to be less painful.
We really hope so. The body then treats this like a continual break of the leg and manufactures new bone growth in between the opening.
If you’ve read this blog in the past you might remember a
special little girl Lillian that is a kindred spirit of sorts with
Katelyn. Lillian was also born in
Minnesota around the same year and is a mirror opposite of Katelyn having FH in
her right leg and Katelyn has FH in her left. Lillian has already gone through
lengthening and her mom has graciously let me borrow some pics to show you.
This is sweet Lillian.
She’s wearing the fixator with a cover over it so you can’t see the
fixator but you can see how wide it is compared to her leg. This is why all of Katelyn’s clothes have to
be altered. Underwear, shorts, pants
etc… all have to be able to be opened from the side and snapped on because
nothing can fit over top of the fixator.
Thankfully a sweet woman from our church has offered to help with sewing
everything. I’m not a seamstress! God sure worked that detail out for me.
This is Lillian sporting the fixator. Yes, I understand it's hard to look at, I've been looking at these kiddos for 4 years now and it's still hard to look at. It's why she'll be on lots of pain meds. Pain killers, muscle relaxers, meds to keep her stomach from getting upset from the meds, stool softeners, nutrition supplements because it's such a long time to not feel well from all of the meds and more. Kind of makes me look sideways when I hear people talk down about Tylenol. Silly parents, bless you though. I can't wait for my girl to be on just Tylenol! We'll get there.
This is Joseph. Such a cute young man. He’s just finishing up lengthening by now, but during the spring when we went to MN he was visiting the doctor as well and we got to see his fixator up close. He has the newer frame with the motors. You can see the motor down at the bottom.
 |
| Lillian's face cracks me up! They were all into taking pics. |
In addition to having limb lengthening Katelyn is also
having knee surgery at the same time.
The doctor is inserting an 8 plate into her knee to help with some
valgus knee issues. The valgus knee
(knock knee) wasn’t present at birth but it’s a part of the progression and
it’s appearing. The limb lengthening
will put pressure on the joints above (knee) and below (ankle) and the 8 plate
will help combat that and straighten the knee at the same time. I have no idea when they take the 8 plate
out. It seems I zoned out when the doc
was explaining that part. I think I was
stunned when he said “if now’s a great time for you family I think she’s ready
for lengthening.”
Anyhow back to the schedule.
Katelyn will be hospitalized for a few days and then we’ll move down to
a home on Madison Lake. I cannot tell
you how God is in the details of this surgery and planning. Every detail from beginning to end God has
basically put in front of us saying “follow me I’ve got this” and finding this
place was all a part of His plan. We are
so grateful to this generous family. Your
kindness is beyond measure!
We were given two options with this treatment. Either reside in MN for 40 days while the
fixator is on or commit to traveling back and forth every two weeks. So with work schedules and life schedules we
agreed on a compromise. We’d stay for
the first two weeks to be monitored and then begin traveling back and
forth. In the off week when we are in
Columbus we’ll be seen by an orthopedic doc here at our Children’s
Hospital. He’ll take pics and x-rays and
relay them back to Dr. Dahl. Then on the
even week we’ll travel to MN to visit Dr. Dahl in person. This schedule will continue until September
or until her body says it’s time to stop the lengthening. The part about the body saying “I’ve had
enough” I don’t even want to talk about.
We don’t want her body to fight against the limb lengthening, so for my prayer warriors please pray that
her body is totally flexible and is accepting of all of the stretching and
pulling on muscles, tendons, blood vessels etc..
At the end of the lengthening (whenever that is) we’ll
return for the removal surgery. He’ll
place a plate alongside of the new growth that will help stabilize it during
the consolidation phase. Thus the term
Plate Assisted Lengthening. Other docs
across the country have the kids wear the fixators for 4-6 or more months but
with the plate assisting, the fixator can come off at the end of the bone growth stage which is
around 40 days. One of the reasons we
loved this doctor was because of this reason alone. Each one of those pin sites is an open wound and needs cared for and monitored for infection. So the faster you get the fixator off (in our eyes) the better.
During the consolidation phase she’ll be casted or in a
boot. We haven’t really reviewed the
details for when we need to return to make visits then once she’s casted so
that part will just have to be an unknown until later.
And that’s it for now.
A lot to digest. I know. I’ve had 4 years to accept this process and
it’s still hard. One thing is for sure
though I know that she was created by God who is so much bigger than us all and
she was created by him for a reason and with intent. He created her with a purpose just like He
created you and me with a purpose. We
all are on a journey of some sort and none of us have an easy one at that. What I keep clinging to is that even though
we’re about to enter a more difficult stage of her journey God will be right
there with us. He’s always working
upstream for us making a way, laying out the details for our lives to unfold. All he asks is that we trust his plan. Sometimes trust is the only thing we have
left to do.
TRUST in the Lord with ALL OF YOUR HEART and do no lean on your own understanding.
Proverbs 3:5
