Raelyn.

I’m really, really tired.
No, I’m exhausted.
I’m anxious.
I’m scared.
I’m frustrated.

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.
Now eggs.
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.

M

12,845 Responses to “Raelyn.”

  1. Erin Hawkins | December 6, 2013 at 9:40 pm #

    I am so sad to read this….how discouraging this is…and knowing personally how doctors can just throw you around like a friggin peace of meat (I worked with them as a nurse), not taking into consideration the fear and emotionally tired state that your in, is even more frustrating. Keep pushing them! You deserve answers….that’s their job! What an amazing mother you are! Certainly a woman/mother that I look up to! Please know that we continue to pray for you and Rae. I would like to start watching Sam during your appts when you need somebody. Zach would love to play with him! So next appt, please call/text me at 513-675-8984. I REALLY want to do this for you….PLEASE!!!

    ~ Erin Hawkins

  2. Anonymous | December 6, 2013 at 11:09 pm #

    My prayers are with you and Rae. I really urge you to keep bugging the doctors for answers. Like others have said, you deserve to get some questions answered. Rae is worth it. She’s a darling girl.

  3. Anonymous | December 6, 2013 at 11:29 pm #

    Oh sweat M. Praying for you all continually here!

  4. Kelly | December 7, 2013 at 3:55 am #

    my heart is breaking for you…and I share your concern. It doesn’t matter if you are 23, 33, or 43, a mother is never equipped to cope with a child who is not well. I hope to see you soon. I’ll be praying for you and baby Rae.

  5. Anonymous | December 7, 2013 at 4:33 pm #

    As a mother I completely understand your fears and frustration. I also know that our God is bigger than any of our trials and so I speak healing on Rae in the name of Jesus! In His name I rebuke sickness from her body! Amen.

  6. Ruby campos | December 9, 2013 at 12:03 am #

    I’m praying for her hun this makes me sad 🙁 I hope they find answers soon for her sake and yours. <3 Poor baby

  7. Anonymous | December 10, 2013 at 9:12 pm #

    I’m praying for you guys, too. That’s so scary and I can’t imagine how hard it is for you.