Sometimes Mamma Bear Needs to Make an Appearance
This morning Jayde-Rhiannon and I
spent an hour and a half with her primary care physician. During a phone call
with my mom on Tuesday night, she inquired about Jayde's upcoming visit. I told
her, "If you hear an explosion coming from the Cracker Barrel area of
town, no worries, it is just your daughter." She laughed but wholly
understood.
Thankfully there was no big
explosion, just two much-needed mini outbursts - one from Jayde, the other from
me. After Jayde informed her doctor, she did not feel she was receiving proper
care. I went into great detail regarding the mismanagement of her health from
almost all physicians involved. I finished with, "I am watching my
daughter wither away right before my eyes. Either you will be the doctor who
figures this out while helping her heal, or we will find a doctor who will. If
this is out of your scope of expertise or you are too booked to take time to focus
on Jayde thoroughly, please speak up so we can find someone who is willing to
help her." She apologized to Jayde, strategized with both of us, increased
her weekly infusions to three times a week, wrote down her cell number, and
sent us to the lab where Jayde had thirteen vials of blood drawn.
For Jayde to receive proper
health care, Mamma Bear needed to come out to play. I wish that were not the
case, it is definitely not the first time, and I am confident it will not be
the last, though you will never hear me making any apology for advocating for
either of my children. This morning I barely contained my pride as I quietly
observed Jayde assertively using her voice, advocating for herself.
We are still unsure precisely
what Jayde is facing. We only know it is autoimmune in nature. The severity is
what needs to be determined. Many more tests and appointments are to follow,
hopefully keeping our Baby Girl at home and out of the hospital.
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