I’m really, really tired.
No, I’m exhausted.
Rae isn’t getting better.
She’s almost getting worse.
Remember that crazy little thing that was almost walking at 7 months?
Now she can barely manage to crawl across the room without stopping and crying halfway through.
She stopped standing up on her own.
She always wants to be held and cuddled and she just seems so defeated.
And I’m right there with her.
It’s been 6 weeks of the dairy/soy free diet.
Then they took away gluten.
Nothing has changed.
She’s still not growing.
Now her head hasn’t grown in almost 3 months.
Her blood work showed high white blood cell count. And my mind automatically goes to “she has cancer”. I know that’s extreme, and I pray it’s unlikely, but there’s clearly something wrong here.
She’s “malabsorbing” her food, no matter what we cut out of her diet, she’s still not getting better.
It’s so frustrating. I’m willing to give up any food for her, I take her to the doctor every week, by myself and I have to explain over and over again what’s wrong. I’ve got a GI asking me why she isn’t gaining weight, like somehow it’s my fault. I gave up brownies for her (this is a big deal)! I stopped running so I wasn’t burning off too much energy and having it affect my ability to nurse (this is also a big deal). I’m doing EVERYTHING I physically can to make her better, but it isn’t working.
I feel helpless. Week after week I see her getting poked and prodded and having test after test done. They sent her to do blood work, to cardiology, gastroenterolgy, and now more blood work, and sweat tests, and neurology, and allergists, and testing her for cystic fibrosis, her blood chemistry, and retesting her white blood cell count and it’s so overwhelming.
I’m only 23.
I’m not equipped to deal with this.
I don’t know what else I can possibly do for her that I’m not already doing.
I feel like I’m failing her.
Like clockwork, the kids go down for naps, I sit down on the couch and I just want to sob. And sometimes I do. Everything I’m doing for her isn’t enough. It’s just a game of “let’s try this and wait and see” and it’s exhausting. Big S doesn’t have vacation time so he can’t go with me to any of her appointments. And then half the time I have Little S with me at the doctor’s office, which is super fun trying to explain everything over the sound of “MOMMYMOMMYMOMMYMOMMYLOOKLOOKLOOK”. Then the conflicting information from the 10,000 doctors she sees is rampant. “Give her water and juice,” “Don’t give her any water,” “Keep pushing the formula,” “She doesn’t need the formula,” “Add Duocal (powdered calories basically) to all her foods,” “Add olive oil to all her foods,” “Don’t let her snack,” “Give her 5 small meals a day,” “Don’t feed her a night,” “If she wakes up to eat you can nurse her” and on, and on, and on.
Friends, I know you mean the best, but please don’t tell me not to worry.
Please don’t ask me why I don’t just give her formula.
Please don’t give me suggestions of what other testing I should have done.
And please, please don’t tell me that she’s just petite.
This is bigger than that.
The one thing I’d ask you to say is that you’re praying for this sweet baby girl of mine while we figure all this out.