Miracle Children - Our Story

Will & Ellie's "Miracle Story" as told by Children's Miracle Network
(Scroll to bottom of blog & hit pause on music playlist in order to hear sound on video.)

When I was pregnant with Will, we sought a trusted friend's counsel as we determined various medical decisions for our unborn baby.
I remember he told me that while I needed to find specialists who were the best in the field to operate on my child, yet I needed a pediatrician who would hold my hand in the waiting room.  He suggested I needed a pediatrician who would quarterback appointments and be a sounding board and help me navigate this highly specialized world with its own language and insurance paperwork and things far beyond my brain's capacity.
And he described something he called the "special needs clinic."  It sounded wonderful but in my overwhelm at that point in the pregnancy, I don't think I paid it too much attention.

Three years later, I walked into his office, this time as the mom of two of his newest patients (officially at last.)  And as I sat in that office with a baby in a spica cast, he and his nurses began to reveal to me what this special needs clinic was and how it would affect our lives.
I had no idea the magnitude of what they do.
I never realized their impact on our community.  

The SPN clinic provides two nurses that serve over 400 children in our region.  They are intimately familiar with my kiddos' medical histories.  I don't have to explain things over and over again to new people every time I call with a question or go to the doctor.  They have special powers that somehow work to get me into specialists.  When I hit a brick wall, I call them & before I know it, I'm through the door.  They've set up appointments for me - saving me that trouble.  They've answered countless questions and researched what they don't know.  My kids have familiar faces when they go to the doctor.  They know Mrs. Shirley & know that she loves them and cares for them.  

And I know that when I need to vent about something medical or when I am frustrated with the system or at my wits' end and need help processing through a decision  - Shirley is so patient to listen to me and help me.
She organizes special needs lunches and dinners for parents to get together and find community with one another once a month.  She organizes a huge picnic at the lake for doctors and nurses and the 400 patients and their families served by the SPN clinic.  It brings community resources to the patients and provides us with information and knowledge and a day of fun.   And it builds relationships between kids and their doctors as they spend an afternoon playing outside together.

Shirley & Molly are a huge asset to our community and to our life.  
And their salaries are completely paid for by Children's Miracle Network.

Then there is Chanda.  She is a child life specialist.  If you have ever had need of a CLS then you know how very valuable (& creative) they are when your child is hospitalized.  Chanda recently joined us in the hospital for some tests.  When Will needed an IV, she was right there beside him, teaching him in terms he could understand about what was going to happen.  She calmed his anxieties and offered him fun little surprises.  She let me just be his mom.  (If you've ever held your child down for blood draws - you know that just being a mom is a huge treat- just to be able to comfort instead of restraining and being the bad guy.)  We've had a lot of blood draws in various hospitals.  Never has a CLS visited for those much less offered toys as rewards.  But here, every child that gets poked sees the CLS and receives a prize.  Sometimes its the little things that make such a difference.

I've watched Chanda in the halls on the pedi wing.  She knows those kiddos.  We don't have a children's hospital here.  Most of the children in the hospital here are there for routine things - sickness or routine pediatric surgeries.  They aren't usually there long term.  Yet Chanda knows their names.  She is comfortable with them and makes the kids feel comfortable and cared for and known.
She also works with siblings - helping to explain to them what is happening to their sibling who may be undergoing emergency surgery, for instance.  And she works with parents too.  And sometimes, in gut wrenching cases when one or both parents may be involved in accidents or are in the ICU, she works with the children  - helping to mediate between them and the doctors, to explain in terms they can understand exactly what is happening to their parents.  The Child Life Program employs play therapy to help ease the stress of pediatric patients.  
She comes armed with toys and stuffed animals and books and ipads to distract kids and the occasional t-rex.
She brings calm and peace and a smile and loving arms.
She carried Will through the hospital recently.  I offered to carry him but she insisted - she wanted him to know he could trust her.  
Most cities our size don't have child life specialists.  They are commonly found in big cities and in children's hospitals.
It is a huge asset to our community to have a CLS  here - available to any child who needs her in the hospital.

Her salary & the Child Life Program is completely paid for by Children's Miracle Network.

When Will was born, he spent 9 days in a NICU in Dallas.  He wasn't there for issues regarding his limbs.  It was a blood sugar issue.  He was quite healthy compared to many of those precious babies.
I remember once walking in and seeing his little isolette empty.  It was time to nurse him and odd not to see him in his bed.  Suddenly, I heard U2 - with an accent.  
One of our favorite nurses, Bongo, was on duty and he came around the corner carrying Will. 
Will was "unwired" he said and Bongo informed us that he felt like Will needed a walk.
We loved Bongo.
He was foreign and so loving of those babies.  He was singing all the time (usually U2) & couldn't figure out how to pronounce Wisconsin.  

Too many of those babies in that NICU couldn't be walked.  Many couldn't be touched.  They were too sick or dependent on their wires or fragile and tiny... so tiny.

This little bed is used in NICUs.

(photo credit here.)

It's a Giraffe Bed.  It provides exceptional warmth to tiny, fragile bodies and better allows for parent and medical staff interaction with babies in the NICU.  It allows for more control of the baby's environment and therefore rapid healing and development.
It costs a lot.  A whole lot.
There is a NICU in our local hospital.  For parents who require NICU support, this is a huge asset to the community - it means that parents don't necessarily have to transport their baby to Dallas and then deal with the commute or moving temporarily there (as we did for medical reasons.)  
When Will was in the NICU, I was so thankful for the support of R's job and our family to allow us to stay there with him.  We never missed a feeding and spent our days and nights at his bedside.  So many of those babies never had a visitor.  Nurses explained to me that many of their parents had to return to work or they didn't live nearby so they only came on weekends.  I noticed a huge increase during those weekends of visitors for those tiny patients.  The reality is that for people who don't have flexibility in their jobs or family support and help with childcare, etc, they simply can't spend as much time as they would like visiting a NICU.  With better NICU access in our community, parents are able to both return to work or keep their other children while still visiting their new baby daily.

The equipment designed specifically for NICU babies is paid for by
  Children's Miracle Network.
The staff of two neonatologists is paid for by Children's Miracle Network.

Here's a few other things provided by our local CMN...

pediatric nebulizers for the ER 

numbing cream for ivs for pediatric patients

funding of the NICU and ongoing support for highly specialized equipment

a playroom on the pediatric wing

a child abuse intervention program

crash carts for pediatrics

an invasive treatment room - allowing a patient's room to remain "safe" - no invasive procedures (ie:  needles/ivs) are done in the patient's room.

Any child who accesses the CMN hospital has access to CMN equipment or services.

That is what has been so eyeopening to me.  It's not about special needs or disabilities.  It's not even just about kids who are sick or terminal.  

It's just about kids.

And it's about making a child's experience in the hospital less painful and less scary.  It's about promoting healing and providing the best equipment and specialists to serve a child's unique needs.

Any child can access CMN.  Any child who requires the hospital for any reason - whether that be related to a diagnosis or medical condition or even something as routine as a tonsillectomy or appendicitis or perhaps something such as a car wreck or injury.  The services and equipment are available to all children - at no cost to the patient.

Some Children's Miracle Network hospitals assist specific patients with bill pay.  Our particular one is unique in that it provides unique pediatric services and equipment in an effort to impact more children.  All money raised for each CMN stays in that local CMN to benefit that community.

We are so honored to have been asked to represent CMN this year.  Will and Ellie are certainly our miracles.  We are loving the opportunity to share their story and hopefully provide others with hope and encouragement.

For information on how you can impact our local CMN, please visit here.
(100% of local donations stay right here in our community!)

We are so excited to participate in the telethon this weekend - tune in to CBS if you are local!  (The kids are live Saturday night at 7:30pm, Sunday morning at 10am, & Sunday afternoon at 2pm.)  
Will recorded voice overs at the tv station this week and had a blast.  He had even more fun showing off for the news crew that came to our  house one evening.  (I fear he is enjoying the film crews following him a little too much... I worry he will take an interest in pursuing reality tv!:))
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