Monday, March 5, 2018

Cast Off Time!


The six weeks are up and tomorrow Melody gets her cast off.  I am more excited than anyone.  Even Melody is pretty nonchalant about the whole thing.

But, the reality is that now the real work begins.  The six weeks in a spica cast have been relatively easy, for Melody.  She has had to have most things done for her and she is fine with that.  But now, that will change dramatically.

Before surgery I gave the following list of hopes and prayers:

  * After surgery we would see a great improvement in Melody's scoliosis
  * After surgery Melody will be able to walk with less bracing than she currently uses
  * No complications during surgery
  * Pain levels would be manageable
  * Wisdom in navigating 6 weeks in a spica cast
  * Peace for Mom and Dad, especially during surgery. 

The last four of those have answers!
 - no complications during surgery.... other than it was very long
 - pain levels were awesome... she hardly complained of pain at all
 - we've made it through spica cast life
 - overall we've felt pretty peaceful about the whole thing.. the last 3 hours of surgery and not hearing     updates from surgery was trying, but that is behind us now.

Continue to pray about the first two.  Tomorrow the cast will come off and x-rays will be taken.  I'm not sure if we'll know how the surgery has affected her scoliosis until much later, however.  We will discuss with the doctor what Melody is released to do and contact her physical therapist to get started.  We hope to at least be cleared to work significantly on range of motion exercises.  Her legs are going to want to stay in the position they've been in. We expect to have to get fitted for new braces and all the many fittings that accompany that.

We would add to the list of prayer:
* pain levels would stay low - I'm concerned she might have more discomfort when the cast is no longer protecting her and she actually has to move her legs.
* Melody would have a positive attitude and determination as she tackles physical therapy.  It wouldn't hurt for Mom to have healthy doses of those as well.

Thanks for all your love, prayers and encouragement along this journey.  We have a wonderful support team.

Sunday, January 21, 2018

Hip Surgery Musings

Will she be able to do this after surgery? 
It's amazing how time flies.  Glancing at my blog and realizing it's been 2 years since I last wrote is another reminder of that.  

It's also a reminder of how "normal" life has become.  And, maybe, an indication of how crazy busy it can be, also.  

Tomorrow Melody goes in for a rather large surgery.  Tomorrow life will be anything but "normal" and the recovery from the surgery is predicted to be long and will definitely include new routines. 

We have known for some time that Melody has scoliosis.  Her doctors have been watching it and we have seen the degree of curve increase fairly rapidly over the past couple years.  They've mentioned a back brace "24/7 until she is 16!"  We were surprised, however, when last fall her doctor said he thought the scoliosis was being aggravated by her hip displacement.  The orthopedic surgeon agreed and we found ourselves talking surgery.  

This is a departure from what we had been told about spina bifida and hips.  Most often the hips are simply left out of place, especially if the person isn't likely to walk anyway.  Surgery tends to be futile as the hips don't stay without the muscle structure to keep them there.  
They don't do this surgery after age 8, and since Melody is currently 8, time became a factor.

So... here we are in January headed to surgery.  The surgeon plans to create hip sockets and place both hips in a more typical position, straighten a shin bone, and release a tendon that is preventing her from standing erect.  This is a lot, but since recovery is 6 weeks in a spica cast plus physical therapy, the theory is to do one comprehensive surgery and recover once rather than many small surgeries with multiple recoveries.  

So, as we go into surgery, here is a list of our hopes and prayers:
  * After surgery we would see a great improvement in Melody's scoliosis
  * After surgery Melody will be able to walk with less bracing than she currently uses
  * No complications during surgery
  * Pain levels would be manageable
  * Wisdom in navigating 6 weeks in a spica cast
  * Peace for Mom and Dad, especially during surgery. 

Tuesday, January 19, 2016

A Braceful Journey

Melody's journey in braces.  This is still a work in progress.  But it shows how far she has come!

Friday, October 2, 2015

Spina Bifida Conversation with a Kindergarten Friend

October is Spina Bifida awareness month, do you know what SB is? Here is how we answered a Kindergartener this past week:
Kinder kid - "what is wrong with your legs?"
Melody - "nothing, I was born this way."
Kinder kid - "why do you have that wheelchair?"
Melody - "because I can't walk. I have spina bifida."
Kinder kid - "here's how you walk, put this foot and then the next foot."
Me - "do you know how your feet know how to move? Your brain tells them to. When Melody was born she had an owie on her back and the messages don't get from her brain to her feet telling them to walk like yours do."
Kinder kid - "do they hurt?"
Melody - "nope."

But.... the official definition from the Spina Bifida Association is this:
What is Spina Bifida?
Spina Bifida is the most common permanently disabling birth defect in the United States.
Spina Bifida literally means “split spine.”
Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about 8 babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.

October is Spina Bifida Awareness Month

This is the face of spina bifida in our home!  Cute, sweet, and an amazing blessing to our family.

Friday, March 6, 2015

20 Post-Travel Reflections - Cincinnati Children's Hospital

Two weeks ago we returned from our trip to Cincinnati Children’s Hospital for a week long bowel management program at their world renown Colorectal Center.  I have kept a very detailed medical journal that I would be willing to share if anyone wants more specific medical details, especially if you are considering this program.  However, here are some of my thoughts post-Cincinnati:

1 – There is a reason you go to the experts.  They make the process seem easy.
2 – Bowel clean out, while effective is an extremely messy process.  If you’re going to go through this, I can give you more details and suggestions.  If you’re not going through this, you don’t want to know.
3- Child life specialists are awesome!  Toys, i-pads, bubbles, magic wands, stickers and so much more to help with your little one during not so fun procedures.  What awesome people and what a cool job!
4 – Daily x-rays were the norm, and I don’t think I’ve ever been in and out of radiology faster.  Truly about 15 minutes each and every day.  This department knows what they are doing.
5 – Our nurse, Ebony Moorefield, is pretty much one of my favorite nurses ever.  We met with her daily and she was so wonderful all week.
6 – Going to Cincinnati in February meant -17 degree weather and lots of snow.  It also meant we had a nurse all to ourselves and got lots of personal attention.  Life is about trade offs.
7 – Getting in and out of the car in -17 degree with a wheelchair is COLD and person in chair will refuse to push those cold metal wheels for some time after entering a building. 
8 – Having a child who barely reacts when needles are involved is an incredible blessing.  Have the coolest bubble machine I’ve ever seen in the lab room where they do blood draws is an incredibly smart idea, too. 
9 – A laptop with DVD’s is the best help ever for getting through a bowel program.
10 – A Ronald McDonald house is an amazing place.  Full of fun, incredible volunteers and so conveniently located, especially when the city is in a stage 2 snow emergency.  All your meals are even provided here, too. We fell in love with this house and now all our kids want to stay there due to all the stories we tell about it.
11 – If you live in CA, chances are you don’t even think to bring something to wipe the snow and ice off your child’s wheelchair wheels before entering buildings. 
12 – If you go to Cincinnati in February, you’ll be very thankful that you grew up in Idaho and snow driving doesn’t paralyze you. 
13 – Spending time with family while you’re in the midst of a program like this, is pretty wonderful and a sure-fire guarantee you won’t be bored or lonely.
14 – X-rays of a clean and happy colon are some of your most treasured photos while you’re going through a program like this.
15 – Having the nurses and doctors find the exact combination/dose/program for your child from the very beginning is AWESOME and testimony to how good they are at their job.
16- Checking in to several different departments and doctor’s offices daily means you will be asked repeatedly if you have traveled outside the US or been in contact with someone who has.  At some point you just have to start making smart comments. 
17 – If I ever am put in charge of designing a floor for a children’s hospital or school.  I will remember that a bumblebee/zebra path to follow is pretty cool and the kids will love it.  However, I will remember to put in one on each side of the hallway, one for coming and one for going, so children don’t weave all over the hallway and block other people as they try to follow the cute designs. 
18 – Hospitals with excellent signage make me REALLY happy.  Especially when they hospital is extremely large.

19 – A 21 ½ hour day getting home is exhausting.  A flight delayed 2 hours and then 1 ½ hours on the ground being de-iced and burning off fuel will cause your 5-year-old to exclaim, “Hello?  Plane? You can GO now!”  To which everyone around you will laugh and heartily agree.
20 – No matter where you travel, there is no place like home, even if you arrive without your luggage. 

Monday, February 9, 2015

Pre-Travel Jitters - Cincinnati Children's Hospital

Tomorrow we will awaken very early to be on a 7:15 a.m. flight to Cincinnati, Ohio, via Dallas.  It will be Melody, Hannah and I.  Taking Hannah is such a blessing as having her help during the travel will be invaluable.

Over the past week I've experienced many emotions.  Excitement, fear, worry, confidence, misgivings.  I guess it is pretty normal as it is a huge deal to take 12 days and travel about 2000 miles to take your child to a Colorectal Center weeklong program.  Acting on faith and a parental belief that this will be a huge positive step for Melody and her future independence.

We have the testamonials of other parents spurring us on, "this is the best thing we've ever done for our child."  But still, sight unseen, it is a pretty radical step.  We know of no other programs like this where we live or anywhere else in the U.S., but that is mind-boggling, too, as we are accustomed to believing that comprehensive and excellent medical care is available anywhere in the U.S.

We are incredibly grateful that though this program is 2000 miles from home, it just "happens" to be within an hour of my cousin and her family and my Aunt and Uncle.  As well as near enough for my brother to drive down from Michigan.  Between them, we have a car to use and a place to stay.  We are so thankful for family and God's provision through them.

We will arrive Tuesday evening and Melody's first medical test is first thing in the morning on Wed. Our adventure with driving in Cincinnati and vicinity and navigating an enormous hospital campus will begin then. By the end of our trip it should be very familiar.

So, tomorrow we'll step on the plane and trust God's leading in this huge endeavor.  We will trust that even in February snow storms, cold and likely travel delays will not derail getting to and traveling around Cincinnati as needed.

Isaiah 41:13

For I am the Lord your God
    who takes hold of your right hand
and says to you, Do not fear;
    I will help you.