We are in our second day of steroids. I can tell Avery just wants to jump out of her skin. She is always moving as it is and you add the steroids and she is out of control. I am trying to be as understanding as I can while she is on this medicine, but it does test my patience at times. The next few days while on this med we are going to try and keep her extra busy. On a VERY positive note she is hungry all the time. I love hearing the words, "Mommy, I hungy now."
Her cough is better. I am soooo hopeful we can kick her cough with this round of steroids. We just have to. Can you believe hand, foot, mouth has put us on this path of Cipro and two rounds of steroids? It makes me so scared of the common cold. Just as we were getting comfortable with CF and feeling like we can deal with it....we get hit with hand, foot, mouth.
I am very disappointed Avery cannot attend mothers day out. I was looking forward for her to have new experiences. She is such a social little girl. Hearing our friends all going back to mdo and we are left behind is another slap in the face that this disease has changed our lives. If you can believe it makes me even more dedicated to getting the new drugs to my Avery. SHE deserves to have all the things (even the little things) that a healthy child gets to have and do.
Those are my thoughts on for tonight...
Yeah!!! (about the food). Does this mean you might be able to avoid the hospital stay for feeding? I'm sorry that once again cf is changing your plans and not allowing Avery to lead a "normal" life. But you and mike are so inspiring the way you take such great care of her. You know what is best and you do it. It will be hard and I pray there comes a time when you are able to be a little more relaxed (not sure if that's the right word but I hope you get my meaning). Thinking about you guys. GO AWAY NASTY COUGH!!!
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