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.