The McClintic Family
Est. 2010
  • Home
    • Click for recent site updates
  • Book
  • Blog
  • Media
    • Changing the Face of Beauty
    • Professional Documentary
    • Talk Tools Voice
    • Angel Eyes
    • My Lucky Number 21
    • Life Liberty and the Pursuit of Happiness
    • Spirit of the Season
    • Promoting Acceptance
    • Cutie with Down Syndrome
    • Bets Against Her Doctors
    • My New Lucky Number
    • Talk Tools
    • Pop Pop has no need to worry
    • On March 21st
    • Home Videos
  • Photos
    • Growing
    • Pregnancy
    • Birth
    • First Birthday
    • Second Birthday
    • Fourth Birthday
    • Baptism
    • 3/21 Down Syndrome Day
    • Making of Movie
    • Springtime 2012
    • First Surgery
    • First Vacation
    • Fall 2012
    • Dolls for Downs
    • Gymnastics
    • Summer 2013
    • Preschool Intro
    • Fall 2014
    • Christmas 2014/5th Birthday
    • National DS Day 2015
    • Easter 2015
    • Changing the Face of Beauty
    • Princesses 2015
    • 4th of July 2015
    • Kindergarten Intro 2015
    • Photo Shoots
  • Medical Updates
  • Jamie's Desk
    • New Mommy
    • Letter to Maddox
    • Disabilities
    • Inspiration
    • Book Preview - Grieving the Gift
  • Guest Book

DOCTOR THIS, DOCTOR WHO?

9/16/2010

0 Comments

 

POLKA DOT PRINCESS

Picture

Maddox’s assessment for plagiocephaly treatment.  She loved her temporary polka dot hat.  Actually, she loves every minute of Ann Arbor.  She talks to the doormen, the patients, the cooks, the doctors, the receptionists, the nurses, the housekeepers, the statues, and my list goes on......


There are so many doctors that I can’t even remember them by name anymore.  Quite possibly so many that I can’t even recall them by face. 
Picture
In the past six months we have visited the:

Cardiologist in Alpena
Cardiologist in Ann Arbor
Genetic Counselor
Geneticist
Audiologist
ENT doctor (and her Resident)
Physical Medicine and Rehabilitation Physician
Orthotist
Speech Therapist in Ann Arbor
Infant Home Teacher
Pediatrician
Family Practice Physician
And soon to come is school based PT and SLP


14 doctors, 14.  All with the best interest of Maddox in mind but it truly gets overwhelming.  It’s no wonder these parents that I work with get so stressed sometimes that they start kicking people out of their homes.  I understand it now, I really do.

I hear lots of parents say that I have it good, I am so blessed, or that they have always wanted to care for a child with Down Syndrome. 

I will be the first to tell you, at this very moment I don’t feel so blessed.

My car has more miles than I planned on putting it through, my vacation money is now spent on travel accommodations to and from medical appointments.  All of the state agencies tell us we make too much money to get the help we need.  To make matters worse, I am on doctor overload.

Navigating the medical community is like being a mouse in a crazy difficult maze.  You scurry around, check for secret passages trying to find your way out of this mess, all while someone hovers over and snickers every time you fall for the bait all the while you are consumed with finding an exit to freedom.   

In the past two weeks we have gotten up at 3AM, driven three and a half hours for five appointments.  That does not include the local appointments and all of the 6 month follow ups that were just scheduled.  Some places want several 4-6 week follow ups.  Some want 1-2 year follow ups.  I can’t keep them straight anymore.  I thought I was an organized person.  And I really was, until I became the designated U of M personal secretary.  I feel like all I do is take phone calls from them, reschedule appointments for them, find out what days the doctor is working, switch appointments around, etc...  

I do all this, while trying to live a normal life, get up for work, take care of other peoples sick children, try to remember to make it to my own dentist appointments, or heaven forbid find some time to throw a ball for my firstborns (Copper and Daisy).   

Today I am simply on overload.    

I think I have it tough but the answer to that is, yeah right, not really.  Tomorrow I go back to work.  Multiply the stress of my problems by 60.  Yes, there are 60 kids and parents that I work with who are all dealing with the same things I am.  

My job is to help these parents navigate that maze we call medicine finding supports for their children just as I am doing, day after day, after day, after day.  Easy recipe for burn out.  

I am trying to decide what needs to give, which way to bend to make this all work because not only do my students need me, my family needs me.

Maybe this is a dose of new mommy syndrome, new priorities and no memory, but all of the sudden multitasking doesn’t seem so easy or exciting anymore.  

That was my bum news.

The good news is that we learned today that Maddox is hearing, in fact, she is hearing much much better than her mommy hears!  We also learned that the ENT systems are currently functioning well. Check the medical page for more specific updates.

That is the scoop for now.  In two weeks hi ho hi ho, it’s off to Ann Arbor we go......again

I just heard there might be a surprise visitor for our next appointment and that would make my trip totally worth it
0 Comments



Leave a Reply.

    Why blog?

    These are personal realtime reflections that we have opted to share openly and honestly so you and others can learn about our journey.

    Click on January 2010 below to read Maddox's birth story and view photo's of her birth-day.

    Archives

    November 2021
    September 2015
    August 2015
    May 2015
    February 2015
    June 2014
    March 2014
    February 2014
    December 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    February 2012
    January 2012
    July 2011
    June 2011
    May 2011
    April 2011
    March 2011
    January 2011
    December 2010
    November 2010
    October 2010
    September 2010
    August 2010
    July 2010
    June 2010
    May 2010
    April 2010
    March 2010
    February 2010
    January 2010
    May 2009
    April 2009

    RSS Feed

Powered by Create your own unique website with customizable templates.