For the past five weeks Cora has been really fussy and irritable. At first I thought it was a cold or teething or a flu. But it hasn’t gone away. It’s also not consistent. Sometimes she’ll have a low grade fever, cough, no appetite, trouble sleeping, diarrhea, and scream for hours on end. Other times she’ll eat more than Kimball, have normal diapers, sleep great, no fever, no symptoms. She now hates bathing and will scream bloody murder whenever she's in the tub. Strange I know, she used to LOVE them. I know that something is wrong I just don’t know what. Last week she had a really bad rash in her diaper area. One day here and there she’ll act completely normal. I’ve taken her to a few different doctors, the ER, and to an urgent care center. I have no answers at all, nobody can tell me what is wrong!
But I know that something is up. This isn’t the typical always happy, always smiling girl. Last week I called her pediatrician and he wants to do a stool sample to run a few different tests. I called her nutritionist last week and come to find out Cora has lost 20% of her body weight and hasn’t weighed this little since November. She’s quite concerned about her weight and hydration so I’ve increased Cora’s milk caloric density from 26 to 30 and will eventually work up to 40 calories to get some weight back on her. Even a few friends and her therapists mentioned how thin she’s looking.
What I do know is what I’ve been saying all along: it’s something with her gut. I can’t pinpoint it but I know it has to do with her digestive system in some way or another. Out of desperation I started her on a gluten free diet on Sunday, and would you know her diarrhea has completely cleared up. But going gluten free didn’t help the fussiness so I know there’s something more than just that.
You know the phrase, “The squeaky wheel gets the grease.” I’m an awesome squeaky wheel when I have to be. And after being refused and refused for earlier openings to her allergist and GI doctor, I finally got in for tomorrow morning and Monday morning.
I’m really frustrated. I feel completely defeated. I feel like I’ve failed again as a mom because for five agonizing weeks, Cora is still in discomfort and pain and I don’t know how to give her relief! Mothers are supposed to be nurturing and protecting and I don’t know how to give that to her. She’s had a few blessings and I know it’s all in the Lord’s hands, I just wish I could administer the healing that she needs to enjoy life again. And it’s getting to my sanity a little bit too, I guess I can admit that. The fussiness and crying is hard to endure when I know there’s no end in sight. She doesn’t calm down when I or anybody holds her……..sigh………I don’t know what to do…………besides tell myself, ”Be still, and know that I am God.”
These blurry pictures are just for my record keeping: behold the purple hands and feet. Right below the knee you can see her leg start to turn colors and become more purple the further down you get. The texture of the skin also changes; it's more dry, wrinkly, and rough.