POLKA DOT PRINCESS
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.
Cardiologist in Alpena
Cardiologist in Ann Arbor
ENT doctor (and her Resident)
Physical Medicine and Rehabilitation Physician
Speech Therapist in Ann Arbor
Infant Home Teacher
Family Practice Physician
And soon to come is school based PT and SLP
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