Last month, my other half and I
found out that our daughter, who we suspected had health issues, was worse off
than we had initially thought. We’re actually still on the road to answers, but
so far, we’ve found out that she has an immune deficiency, severe allergies to
some foods and some animal dander (dog, specifically), and a heart murmur,
which is functional.
This last weekend, we also discovered she’s having seizures. They called them Focal Seizures, and for her, they seem to occur mostly when waking, and generally, it’s shaking/convulsions, spacing out, and loss of hand-eye coordination and control. We rushed her to the ER when it was so bad that she couldn’t even lift a banana to her mouth without shaking and missing, and was falling over because her arm buckled under her.
We’re exhausted, all of us. Her
big sister is worried but also doesn’t fully understand. She wants to play more
with her, but she can’t. She wants to know why her baby sister can’t have any
milk, or pickles, watermelon, etc. Why we can’t bring those foods in the house
anymore, and why she has to wash everything after eating them elsewhere.
How do you explain to a 3 year
old that her sister just can’t have them and make them understand it?
She has to see so many
specialists that my head is reeling. Immunologist, Cardiologist, and now
possibly a Neurologist for her seizures and G.I. Specialist for her lactose
intolerance.
And on top of all of this, I’m in
the middle of my Spring semester of University, for my Teaching license, a
Bachelor’s Degree in Elementary Education. I’m overwhelmed. I feel like my head
is going to explode with all the possible disorders that I’m having to learn
about, and all of the things I have to tell new doctors when she has to go to
an ER. My day to day life is me juggling nebulizer treatments, disinfecting the
house, double the daily cleaning since she can’t be exposed to allergens,
disinfecting her toys, spraying her bed and toys with allergen reducer, doctor’s
appointments, and finding a way to study. Hell, that’s why I’m awake right now…
I was studying and doing homework and couldn’t sleep after.
And through all of this… all we
want are some answers. We just want to get her on a treatment that will do more
permanent good.
We believe in vaccinations… well,
her previous vaccines may not have even done her any good. Future ones could
cause reactions, so we have no idea if they can be given to her. And now we
have to worry about measles, what with all the recent outbreaks.
I’m keeping up hope that things
will get better. I keep making things more and more orderly, more clean, more
sanitary, but it feels like a losing battle most days.
I’m lost, in so many ways. No one
wants their child sick, it’s something I wouldn’t wish on my worst enemy.
I’m angry at her old pediatrician
for ignoring me and not listening when I told her that my baby was sick
constantly, and delaying a diagnosis for months. I’m furious that she missed a
heart murmur for 10 months. I want to go scream in her face, but that would
solve nothing.
And all I can do is trudge on.
We have much more of a story to
tell… Both my kids are strong.
