A Braceful Journey

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

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.

Five Years!

Melody just turned 5!  It is hard to believe it’s been 5 years.  5 years seems like an appropriate age to look back and give thanks.  I am often asked, “how is Melody doing?”  Though that is a loaded question, the answer is, “She’ll always have spina bifida, but for having SB she is doing great.” 

I’ll never forget 5 ½ years ago when we first heard Melody’s diagnosis.  We had very little idea what Spina Bifida (SB) was, though I knew it involved the spine.  All the dire predictions from the doctors and the suggestion that we consider ending her life, made the future look so scary.

And then Melody arrived, and her SB was real and we could see it with our eyes, but the future doesn’t look so scary when you’re holding this:

  

Melody Annalise – 5 days old

As expected, she would have her back closure the day after she was born.  And then, a few days later, our hopes of being able to leave without a shunt were shattered, and a shunt was placed. 

But, what the doctors didn't expect was that Melody would leave the NICU at 9 days old and NEVER return to the hospital for the next 5 years.  Other than an outpatient procedure, Melody has not needed any surgeries and has NEVER even needed pain medicine her whole life. 

To put into perspective, I have heard of children with SB having up to 30 surgeries in 5 years of life.  Many live with chronic pain.  Surgeries on feet, legs, hips, and shunt revisions are far too common. Though we don't know what the future holds, for now we rejoice that, so far, Melody has avoided these.

We spent the better part of a year fussing with hip bracing in an attempt to help Melody’s hips develop properly. 

We did the “pavlik” harness:

 Jan 2010 – 4 months old

And the “rhino cruiser”:

May 2010 – 9 months old

We’re not sure whether they worked or not, but it was worth a try.  We learning Melody’s hips may always have a mind of their own, do we want to be in or out today?  But, that her hips aren’t going to keep her from doing what she needs to do.  And we are thankful that some things just don't really seem to matter much after awhile.

We are part of a special group of parents who hear the word “braces” and don’t automatically think teeth.  We’ve learned all kinds of new acronyms like AFO’s. These were Melody's first Ankle Foot Orthotics. 

Oct. 2010

And a couple years later we could show how much she had grown just by looking at her braces. 

Nov. 2012

We have spent more hours than we can count working on physical strength, therapy and exercise to figure out what Melody can and can't do and what we thought she needed.  We researched and read and asked questions.  We fought the doctor to get RGO braces we believed would help Melody walk and we silently celebrated as his mouth dropped open when she walked in them 6 months later. We are so thankful for amazing physical therapist and orthotist who walk with us on this bracing journey.

Sept. 2011 – Melody’s first pair of Reciprocating Gait Orthotics

We spent hours with Melody learning to use her new braces, though she hated them and screamed for the first two weeks.  They still aren’t her favorite (too confining), but they allow her to stand and stand up straight, walk, develop bone density, stretch tight ligaments and train her feet in the right position and many other things that walking helps.  We continue to believe that these have been the right choice for Melody.

Of course, along with fancy braces, come lots of other fun equipment.  Like. ..

Melody’s first walker.  We never knew about pull behind you walkers, but found it to be the perfect solution for Melody’s needs. We rejoice that all this equipment has been provided for Melody.  What a blessing.

Nov. 2011

Sometimes life requires a new understanding of terms and though we say “Melody can walk,” we know walking carries different meaning for her. We are okay with that.  

Though we are happy that Melody can walk at all, we accepted that the bracing and equipment required just aren’t practical or speedy enough in all situations, so before her third birthday Melody got her first wheelchair. 

July 2012 – Idaho – age 2 ¾

Her wheelchair has given her independence and speed and she is getting more adept with it every day.  At this point she never uses it at home, but it has been so helpful in public places and especially now that she has begun transitional kindergarten. 

Over the past 3 years Melody has walked further and more and with more style as she has grown older. 

Dec. 2012

Along with growing older means growing bigger which means new braces.  Casting for these babies is quite a process. 

July 2013 – Melody’s second set of RGO’s.

We’ve joined on-line groups with help us keep up with all the wonderful products out there to help Melody access and enjoy the world as much as possible. Like her first handcycle!  How thankful we are for family that all pitch in and make birthday presents like this possible.

 Sept 2013

Over the last 5 years we learned about so many things we didn’t even know existed.  We’ve navigated medical mazes and fought hard for milestones.  Our eyes have been opened in so many ways.  We can see many differences in our lives today.  But, much of the time life just looks like this.  Our beautiful daughter loving on any animals she can find, playing contentedly and just enjoying life. How thankful we are for Melody's life.

  

A beuatilA beau

A beu

Ou

We’ve learned doctors can look at an ultrasound and tell you all kinds of scary medical stuff.  But, they'll never be able to tell you about the person that little baby will become.  Until you look into the eyes of your precious child and see how unique and amazing they are.  Until you realize all that you would have missed in the colors of life if you God hadn’t given you this incredible child.  Until you watch their life unfold before your eyes, you'll never really know the whole story.  And the whole story is beautiful.  We can't wait so see the rest of it.  

Whatever Happened to Compassion?

Whatever Happened to Compassion?

Compassion. Defined as “sympathetic consciousness of others' distress together with a desire to alleviate it” in the Merriam-Webster Dictionary.  What happened to it?  Often I feel like compassion is missing from our society. 

This month Disneyland changed their disabled guest access policies due to rampant abuse of their Guest Assistance Cards (GAC).  If you’ve been there recently, you’ve probably observed abuse of these passes.  The abuse had reached epic proportions prompting Disney to change its policies. It is a real blow for people with disabilities, and the really dishearting part is that Disney was ever given a reason to change their policies.

What happened to cause so many people to believe it was okay for them to cheat the system?  That they, too, were entitled to a GAC?  I believe one reason is an overall lack of compassion and a presence of selfishness.  Instead of other guests seeing a person using a GAC and being grateful that Disney was offering assistance to someone in need, other guests felt jealous. 

Other guests watched those with GAC passes “go to the front of the line” and “not have to wait” and felt this was unfair. And of course, life MUST be fair.  I only have to have compassion and kindness when life is fair.  If you missed the memo, life isn’t fair.  Ever.  When did our society start seeing disabled access as a “privilege” to be gained?  When did being first become more important than compassion? 

Let’s assume for a minute that the GAC really DO give special treatment to people with disabilities (which for the most part is completely untrue, but that is another entire topic), would that really be so bad?  Would it really be so awful for there to be ONE place on earth where having a disability gave you a bit of an edge?  Would it be so hard to celebrate a company that chose to have compassion and mercy toward those who struggle every day? 

If we really had a sense of compassion as a society, we would see another struggling and we would happily allow them to go first or anything else that would alleviate their distress.  However, I think our society lacks a consciousness of others’ distresses as well as a lack of compassion when they are made aware of them.  Get over it seems to be the prevailing attitude. 

When did we become so uncompassionate and selfish as a society?  What are we going to do about it?