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Saturday, December 29, 2012

The first evaluation...it was awful!

“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.
Delicious Ambiguity.”
Gilda Radner



Driving home from Dr. Hyun’s office that day my brain felt like it had shifted into overdrive. I was calling all of the doctor offices and the medical center trying to schedule Oli for her appointments,  MRI and lab draw.   Flipping through my appointment calendar I remembered that I also had to call Nevada Early Intervention Services and schedule an appointment with them.  NEIS serves the special needs children in the Las Vegas and surrounding areas that are under the age of 3.  After age 3 the children transition into the school district. www.health.nv.gov/BEIS_EarlyInterventionPgms.htm


No one had recommended that I call NEIS.  I just happened to remember referring some of my patients to them while reading off their discharge instructions. 

I’m thankful that I knew of them and knew that they might be able to offer us some help.  To be honest, I didn’t know exactly what they did.  I just knew that when I had a patient going home that might have some developmental delays we told them to call NEIS. 

 A woman from the front office answered my call and set up an evaluation for the following week.  She told me to bring Oliana to the appointment and they would look at her and decide which services she would benefit from.

I hung up the phone and was proud of myself for finally doing something for her instead of just worrying about all of the things that I couldn’t do.

Later that day a woman I worked with contacted me and offered to come out to my house to look at Oli.  She was a neonatal nurse practitioner in the NICU I worked at and she also occasionally worked with the pediatric genetic doctor in Las Vegas.  She told me that if she came out and did her own evaluation of Oli she might be able to submit it to the doctor and get her in earlier than the 6-9 months that we were told.  I was more than happy to comply.

When she came out to the house she began the physical exam.  She laid Oli down on a small flowered blanket and began measuring every inch of her body with a little fabric measuring tape.   I was not prepared for the onslaught of abnormalities that were revealed to me during that evaluation.

Her little ears were too floppy.
Her eyes were too far apart.
Her eye brows were not level.
The bridge of her petite nose was too wide.
Her nipples were too far apart.
The space between her delicate fingers was too wide. (What? Why does that even matter?)
Her peach fuzz covered head was too small.
Her physical tone was too weak.

The list went on and on….

I just wanted to scream at her.

Stop! Stop! I don’t want to hear any more! 
This is my child!  My perfect little angel and you are picking her apart!
What child could possibly measure perfectly according to your standards?
Please, just stop!
Leave my baby alone!

But she didn't stop because I couldn't yell any of those things.  I just let her continue until she was finished and I was completely defeated.

Then she got into her car and left and I picked Oli up and cried.

 

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