Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Sunday, February 13, 2011

Pressing On

So far we have a full 4 days of amoxicillin in Kara and we push on. It's definitely not going as bad as the augmentin went but we are having some questionable symptoms.

I've heard of FPIES Moms talking about how their child has periods in the night where they are wide awake. We've never experienced this symptom in the past but last night we had our first one. Kara was up for over 3 1/2 hours. It started with fussing, and lots of it. I finally got up and she looked at me asking for a ba-ba. I made a bottle, went to bring it to her and she screamed. She wanted to be snuggled. Ok, I can handle that. She laid in bed next to me, drinking her bottle. Once she was finished, I put her back in the crib and she screamed again. Something was wrong and she was in no way going back in there. I put her back in the bed with me and she snuggled. I rolled over, pretending to be asleep and periodically would look over at her, and those big blue eyes would be staring right back at me. For a while, she fussed and squirmed, and then finally had an icky diaper. Thinking this was the reason for the fussiness, I changed her and attempted to put her back in the crib but she would NOT have it. She normally dives into the crib, and is not a snuggler at all! She LOVES her crib! This went on as I watched the clock, starting at 12:30. At 4:00, the last time I checked the clock, she had finally started to relax and I was able to doze off, only to be woken up by this same behavior at 6:00. I grabbed another bottle, hoping she'd go right back to sleep and we battled, only this time she was one cranky little girl! With the lack of sleep and tummy ache all night and day, I guess it's to be expected.

We've had some icky diapers, some crankiness, and now the restless night. I'm trying not to think too much into all of this, and am trying to remember that the benefits are outweighing the risks at this point. We need these ears to clear up, so we press on.

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