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Medically Complex Care Program at Children’s Healthcare of Atlanta

Recent posts

Submitting to Lack of Control

When Ivey was a baby, I literally had drawers and spaces in her closet labeled, everything had a space, a place.  One special friend loved showing off Ivey's closet to newbies coming by for a visit. This level of organization mystified my friend. Secretly, I wanted to go back to haphazardness.  Justifying why I did this is simple.  At the time, I had friends helping me with my laundry, as were my mom and some night nurses.  With so many people, I found it more efficient, for all of us, to label everything.  No one had to search or guess where things belonged.   This approach to find order has only amplified with time. I have come to accept that being Ivey's mom has brought out a controlling aspect in my personality. For the record, I have always found peace in order and organization.  It could be described as controlling, maybe.  Ivey ramped up my need for order. On her hard days, or in times leading up to what I know will be hard, my need for order raises it’s merciless head. 

Sevo (vs) Propofol.... Crisis Averted: Ivey's Hearing Update...

I used to say, "Life with Ivey is a rollercoaster ride."  Scratch that.  It's nosediving in an airplane where she pulls up on the controls in the last second just before crashing.   We have updated information on Ivey's hearing.  I have been in a state of joy and confusion.  Results from the November MRI and ABR are in.   To recap, the MRI was looking for any structural quirks to the temporal regions in the skull/brain directed to hearing and the ABR was to see if there was any further changes to Ivey's hearing.  The MRI showed no new changes to the regions of the skull/brain, all is as it has been.  Still microcephalic, agenesis to the corpus callosum, and structural deformities to small bones that help conduct hearing.  And, everything still looks good from the cranial vault many years ago.   As for the ABR, there is good news.  It seems that the November ABR was consistent with past ABR's, with the exception of the August ABR.  This means, Ivey's hearin

When You Can't Leave the Past Behind

Today Ivey and I will head to Emory.  Specifically, we are heading to Emory's Department of Human Genetics.  We are going back to hopefully find answers to a question that has materialized in the past few months.   Ivey's inner circle is aware of changes that have occurred and the steps we have in front of us in a search for an answer, if there is an answer.   In Ivey's last sedated procedure(s), an ABR was conducted.  An ABR (Auditory Brainstem Response) tells us if her inner ear (cochlea) and the neural pathways for hearing are working.  Over Ivey's lifetime she has had several ABRs.  An ABR is the only accurate way we can test Ivey's hearing because of her limitations in communicating what she hears.  Where Ivey has consistently maintained a mild/moderate hearing loss, that has now shifted.  The latest ABR indicated that Ivey's hearing is now a moderate/severe hearing loss.  Her right ear having a moderate loss; her left ear having a severe loss.  Due to this

Unexpected Lady in the Parking Lot:

It's 2 am and I am up replaying one particular event of the day. It's one of those things that my mind holds tight, edging itself in my mind in a way that most people don't give a second thought.  But in Ivey's world,  small events can be a reminder and rather symbolic of just how overlooked individuals with disabilities are in this able-bodied world.  Even in this tumultuous time of political correctness, the world of disabilities is still not part of the conversation. So here I am up at 2 am replaying today being grateful for a moment and opportunity to meet a stranger in a parking lot. I am reminded that education, means, and even faithfulness can never replace the kindness of strangers.  And, my girl has angels all around watching her.   Over the years I have often found peace in what I have called "God Moments". Those moments that could be meaningless, yet, they happen at just the precise moment, in just the perfect way. I can look back at slivers of t

Living in a Pandemic

 Living in a Pandemic has made for interesting times.  In the beginning, I panicked just as did the rest of the world.  I read anything I could get my hands on. I tried as I might to weed through the media bias as the pandemic became a beacon of political ammunition.  At the end of the day, put most of the articles down, turned off the news and tried to step out of the social media world.   Here's why.   I was (and at times remain) angry.   Why? I became resentful. Why resent? You see this virus, COVID, places no increased impact on our family than any other cold, flu or nasty little bug that flows freely through communities on any given day, pre-COVID.  For 14 years we have juggled going out in public and "self-quarantining" when necessary.   Why? Our family has a member who is a little more fragile.  A family member who has a compromised immune system requiring IVig.  A family member with a heart deformity.  A family member that has been trached.  A family member who is

And When This Passes, Remember Us: Thoughts on The Church in the Midst of Pandemic

And when this passes, families living with a someone with disabilities and medical complications hope our church families and congregations remember the isolation and loneliness they felt not being able to worship together. We hope you remember our family lives this type of isolation week-to-week and year-to-year. Keep the avenues open for us to worship with you from afar. Once this passes, remember we cannot sit with you in the pews at times, we just don't fit in the traditional manner. Even in the most traditional churches, embrace the avenues of inclusion you are discovering that are not-so traditional and keep the virtual doors open. And when this passes, remember us. In this moment, congregations have the opportunity to lean into families like ours and ask, 'What coping skills have you developed to survive the isolation from community, the unknown, the barrier of worshipping together as one?'.   Right now, no one is asking us how we survive day in and day out, for y