Wednesday, December 10, 2014

It's a gloomy day.. week... year. Nothing feels right :(

My sweet girl is constantly on a roller coaster from hell. We did some grocery shopping and strategically found such an impressive variety of new foods that are still safe for her. Annabelle was so happy for the blessing to be able to expand her diet.... And now, she won't eat, not even the beloved chicken nugget. She has no appetite, or she's scared of food, I'm not sure which. Multiple times I offer her something and she responds, "no mommy, I can't have that.." She's lived her entire life unable to eat like others. She now has her own shelf of food in our pantry, for the first time ever, and she doesn't trust us. Food has the potential for Annabelle to relapse, a relapse is painful and all its associated side effects are understandably not something Annabelle sees worth it to eat food. I can't tell if she's scared of food, has no appetite or if she is in pain. I pray with everything that she's not in pain.

She won't sleep in her bed any longer. She is never comfortable. I stayed awake with her until nearly midnight last weekend with her silently laying over my lap. She tossed and turned, head in my lap, feet over my shoulders, head on the armrest of the couch and me rubbing her back, her cradled into my arms, me laying beside her, and nothing. She is never comfortable. When she falls asleep, it's more of passing out and praying she can stay asleep than actually getting any rest.



Her cough has returned, with a vengeance. She's utterly miserable again with this barking. This marks 4 months straight with a persistent cough.
Her BMs are horrible. They're so much time between them, they're so large and painful despite all the meds she is on. I really wish I had an explanation for this issue.. 3yo's do not just have constipation issues that require daily doses of Mineral Oil, Miralax and enemas. Im not buying it.

Good News to report (if you even want to consider it good)
We have our next surgery on the books. January 13th, Annabelle will go for her 7th endoscopy in less than two years. Personally, I would really prefer to not scope and subject her to another round of anesthesia when I know she will be put under when we get to our next hospital. I'm working my butt off to get us on the books there, but it's such a long process. I hate hate hate my kid being put under anesthesia so much, it terrifies me. If I can schedule with the next hospital soon to scope her for this trial instead of here in Richmond, that is our desire. Wish me luck to see if I can make that happen!

Say a prayer for my Annabelle that she feels better soon, cough subsides and her appetite returns - hug your babies with everything you have and never forget to tell them how much you love them and never blink without recognizing how grateful we all are even if things feel so broken. 


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