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.
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.