We were worried she would need blood because she seemed to have little energy and was complaining of a headache. Luckily she didn't, and most likely she is tired from her lack of nutrition. We will discuss her nutrition in clinic on Wednesday. TPN is not an option, yet her tummy struggles to keep foods down, it will be a tricky thing for her to overcome...the doctors want Alice to have another feeding tube. We aren't sure how well that will turn out, but maybe it can help bridge the gap. She has made improvements, just little by little.
|Last Cidofovir treatment|
A few nights ago I was feeling very discouraged and sad regarding Alice. It was a hard night for me, each time Alice vomited I became more and more emotional. It was hard for me to watch her struggle so much...and feeling so helpless. I suppose I realized at that moment that I am not as strong as I thought. Tyler and I have had to be so tough for our girls...we are strong so they can feel secure and lean on us. Being strong isn't always easy, and this particular night I wasn't holding back my real emotions as I have had to do so many times in the past in front of my children. Not sure why of all the days, this day was more difficult; nothing out of the ordinary occurred, maybe it's been building up. Anyway, Alice looked at me and with a very concerned voice asked what was wrong with me. I told her that I was sad that her tummy wasn't better. She said, "Mom, don't be sad for me, I am not sad for myself."
I couldn't believe what I heard, she said exactly what I needed to hear. I had been in tears earlier asking Tyler what kind of mother couldn't make her children better, just venting in frustration. Alice understood it all, and helped me understand too.
Alice's last words to me that night before she feel asleep beside my bed were, "Mom, I will never give up!"