One year anniversary of DD
Everyone remembers where they were the day the twin towers fell. I can envision the scenario.. I had just finished a grad school class, and I went to meet Peter at his apartment...only to sit in front of the TV for the remainder of the day, jaw dropped and concerned for the future of this country.
I even remember sitting on the couch, with strep throat none-the-less, in third grade when the space shuttle "Challenger" exploded.
Or most recently, learning of the unimaginable in Connecticut.
Significant events that impact our lives and leave an imprint that is uneraseable.
December 22, 2011. Diagnosis day (DD).
Gosh, I had waited and hoped and contemplated and rehearsed and did everything I could to prepare for that day. I prayed, prayed, prayed for the group of professionals to tell me it was a sensory integration disorder. I remember exactly what I was wearing, what I had for breakfast that day, and most vividly, remember the look the psychiatrist gave me when I turned towards him at the end of the evaluation and point blankly asked him, "Are you diagnosing my son today?"
So wish I could have changed that day. After challenging the psychiatrist with the first thoughts that came to my brain (well, I might not have said ALL the things I was thinking), he told me, "I hear your story and I want you to know that PANDAS is a very real thing."
I wish I could have changed the initial day, changed the path the virus took, and instead of heading up to Hunter's brain, have it settle in the normal anatomical places.
But I can't change the past, so I lean on faith to push forward.
I hear this song frequently on the radio and it lifts me up. "God I need you now," by Plumb.
http://www.youtube.com/watch?v=9ylnx0NA9X4
So how far have we come in one year?
We have been given a diagnosis of PANDAS that somehow eases the initial PDD-NOS label. We have been justified in our assumptions and our hypotheses. We have networked with so many professionals, friends, and colleagues, some who share situations similar to our own.
But most importantly, we have begun to see Hunter again. One year consisting of weekly occupational therapy, ABA therapy (up to 20 hours per week), adapted swim lessons, indirect speech therapy from his mama, organized playdates, special education in an integrated classroom, regular education preschool with an ABA therapist, school district play-based assessment, private therapy IQ and achievement testing, summer play-group sessions at a university, three comprehensive genetic, metabolic, and nutritional evaluations, dozens of doctors visits with specialists including immunologists, allergists, dermatologists, infectious disease, and neurologists, MRI, EEG, EKG, and countless pricks and swabs to evaluate the strep that continues to linger.
So after one year, are we tired?
Yes.
Are we stressed?
Yes.
Are we reminded daily of the challenges that have been brought before us?
Yes.
Are we back to normalcy?
No.
Are we a stronger, more cohesive unit?
Yes.
Do I depend on my life partner for not only his love, but for his patience and optimism?
Yes.
Are we happy with the progress our son is making?
Yes.
Some days, I feel we are challenged more than most and that we are somehow warriors who will not back down.
Even if we have not reached normalcy, we have slowly adapted to what is considered our normal.
We will not give up the fight to recover our son.
I even remember sitting on the couch, with strep throat none-the-less, in third grade when the space shuttle "Challenger" exploded.
Or most recently, learning of the unimaginable in Connecticut.
Significant events that impact our lives and leave an imprint that is uneraseable.
December 22, 2011. Diagnosis day (DD).
Gosh, I had waited and hoped and contemplated and rehearsed and did everything I could to prepare for that day. I prayed, prayed, prayed for the group of professionals to tell me it was a sensory integration disorder. I remember exactly what I was wearing, what I had for breakfast that day, and most vividly, remember the look the psychiatrist gave me when I turned towards him at the end of the evaluation and point blankly asked him, "Are you diagnosing my son today?"
So wish I could have changed that day. After challenging the psychiatrist with the first thoughts that came to my brain (well, I might not have said ALL the things I was thinking), he told me, "I hear your story and I want you to know that PANDAS is a very real thing."
I wish I could have changed the initial day, changed the path the virus took, and instead of heading up to Hunter's brain, have it settle in the normal anatomical places.
But I can't change the past, so I lean on faith to push forward.
I hear this song frequently on the radio and it lifts me up. "God I need you now," by Plumb.
http://www.youtube.com/watch?v=9ylnx0NA9X4
So how far have we come in one year?
We have been given a diagnosis of PANDAS that somehow eases the initial PDD-NOS label. We have been justified in our assumptions and our hypotheses. We have networked with so many professionals, friends, and colleagues, some who share situations similar to our own.
But most importantly, we have begun to see Hunter again. One year consisting of weekly occupational therapy, ABA therapy (up to 20 hours per week), adapted swim lessons, indirect speech therapy from his mama, organized playdates, special education in an integrated classroom, regular education preschool with an ABA therapist, school district play-based assessment, private therapy IQ and achievement testing, summer play-group sessions at a university, three comprehensive genetic, metabolic, and nutritional evaluations, dozens of doctors visits with specialists including immunologists, allergists, dermatologists, infectious disease, and neurologists, MRI, EEG, EKG, and countless pricks and swabs to evaluate the strep that continues to linger.
So after one year, are we tired?
Yes.
Are we stressed?
Yes.
Are we reminded daily of the challenges that have been brought before us?
Yes.
Are we back to normalcy?
No.
Are we a stronger, more cohesive unit?
Yes.
Do I depend on my life partner for not only his love, but for his patience and optimism?
Yes.
Are we happy with the progress our son is making?
Yes.
Some days, I feel we are challenged more than most and that we are somehow warriors who will not back down.
Even if we have not reached normalcy, we have slowly adapted to what is considered our normal.
We will not give up the fight to recover our son.
Comments
Post a Comment