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.

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. 

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.