Neurology {Again}

When Natalee was 18 months old she was diagnosed with muscle spasticity.  She was often delayed on her developmental milestones and it seems that we fought hard for each one.  With physical, occupational, and language therapy and a TON of hard work she leads a very successful life.  She hasn't had therapies for almost four years, and again we are noticing a lag in development.  Nothing that we've noticed has been *hugely* alarming, but what has been disconcerting is the pain that she is feeling.  Her muscle spasms are worsening or tightening, or something.  We decided that we again needed to reach out for help for her benefit and began last spring with an evaluation through the public school district, just for special services, not for academic enrollment.  She qualified for both OT and PT but was unable to receive services because she didn't fall into one of the disability categories. Sigh.  We moved forward with a fresh neurology referral.  She'd been pretty well dismissed at 2 years because she was progressing with therapy, but the pain, combined with the fact that services seemed unreachable without a diagnosis or neurology input, made us think it was time to have her seen again.

On November 30th, we traveled to U of I Stead Family Children's for an appointment with a neurologist that we loved.  After a lengthy and detailed collection of her background and history and a long examination that included several muscle strength and motor tests, Natalee was diagnosed with mild cerebral palsy, spastic and static encephalopathy.  We appreciated how thoroughly Dr. Matsumoto talked us through her reasons for the diagnosis and the pros and cons of having an MRI done.  She drew pictures, explained terminology, and helped us be comfortable with this "label."  Dr. Matsumoto believes Natalee likely had an in utero stroke that affected the left hemisphere of her brain, leaving her right side weaker.  She was impressed with Natalee's abilities, skills, and coping mechanisms and praised how well she gets around in life. We owe a lot to our therapy teams from Natalee's younger years.  A. Lot. 

While we are SO proud of her, it's frustrating to have your child have *just* enough ability to function but still need services beyond what we can give her.  These kids fall in the cracks so easily because "the world" sees them as pretty normal (stupid word) and thinks that we should just deal.  We do deal.  Everyday.  We make accommodations daily and we're not sorry we need to, but it gets to feeling desperate when you are crying for help and can't seem to find it.  People say "so she's a little different, so what?"  Hey, that's no problem.  Different is my middle name.  You know what is a problem?  My child crying after trick or treating because her legs hurt so bad.  My child being embarrassed because she's never had the dexterity to tie her shoes or the strength to use kitchen tools and clothing fasteners.  My child getting hit in the face with a ball because she has about a 5 second delay in reaction time.  Those are a sampling of the things we are reaching out for help for and the things we are determined to conquer.  Oh boy, did I just climb on a soapbox?  Excuse me, won't you?

So now, we move forward, with yet another and different label.  Labels are just words.  Here's what I know.  This kid is a warrior and her fight is MY fight.

She is beautiful and unique.  She will never stand alone because we will always have her back. 

We are wading in these new waters and figuring out how to navigate our "new" but familiar world of cerebral palsy.  We've always lived here, we just didn't know it.  The saddest thing about a diagnosis is that it gives you power to get more help.  For that, we are so thankful, but it breaks my heart that we needed the right words on the right piece of paper from the right person to get this beautiful girl the help she deserves to live her best life. 

Natalee knows about her new "label," and she may choose to talk to our friends and our family about it, but please understand it doesn't change the her you've always know, if you've had the privilege to know her personally.  She gave me permission to post and said it's not a secret, it's "just who she is."  We have a lot to think about moving forward, so please be patient.  We are learning about new things and feel like we are kind of catching up.  We appreciate your love and support and your prayers as we move forward.

Pictures from our day together...
We processed our information downstairs at Stead's...We played in the interactive theater and visited the library before leaving for the day.

Natalee chose Mexican food for lunch.

A walk through the mall, including her first escalator ride at Scheel's.

Then a dash to Target to clearance shop.  She and I tried on matching dresses but voted no on buying them!  She did get to pick a new shirt, jammies, and dress for her birthday.  And yes, she road in the cart basket while we shopped, because we'd already walked part of the mall.  We learned that her "complaining" when we walk any substantial distance isn't really complaining, it's muscle fatigue that affects her endurance.  While we will continue to push her to meet her utmost potential, and while we won't always be able to let her ride in the cart, this was not that day.