She has been on Prednisone - a type of steroid that she is taking twice a day. It tastes horrible. We've gotten to the point where I have to hold her down while Thomas shoves it in her mouth. We've tried mixing the liquid with root beer or orange juice, then getting flavored liquid, then getting the pills and crushing them in pudding, yogurt, ice cream... anything. I actually inhaled some of the powder last night and the taste in my mouth wouldn't go away for almost an hour. It's awful. I just have to sit there and think that a few minutes of crying is so worth it if it helps her get better.
Side effects of prednisone are intense hunger and irritability. There are more but these are the ones Avery has had the worst. I have to make sure she eats at least everything 2-3 hours or she has these fits that last at least a half hour at a time. These are the worst because she is inconsolable. She'll hit her head on the ground and kick me. It's so hard because I don't know where Avery stops and the Prednisone begins. Sometimes I want to scream or put her in time out but how can I discipline her for being sick?
I've been trying to keep things as normal as possible and I keep getting wake up calls that things are so NOT normal. We went on an outing the other day and it turned out to be a disaster. I was so worried about her getting a cold or getting hurt I couldn't enjoy anything. Not to mention people kept coming up to see the "sick girl". I hate that people know her because she's sick. Why does this have to define her? It doesn't to me. She has endured so much already and will continue to fight probably the rest of her life. The whole way home I just sobbed. I feel like I will never get used to this. I will never stop feeling like this. I don't think it will ever get easier but we will both get into a routine eventually.
One blessing to being in this "world" is that I feel like my heart has grown x1000 for people going through this. I feel like this will make me more compassionate and aware and hopefully give back in the future as much as people have given my family. I feel like I will never look at life the same way again. Everything I cared about before this trial seems so trivial and... stupid. This will help me live life to the fullest. Appreciate the little things that much more. Love Avery with all of my being and know that there is nothing more important I will ever do then help her fight and WIN this.
My princess :)
Hey Kristen. This is Kelley Birrell. I am a friend of Jackie Josephson's and she told me about your little daughter. I've read back a bit in your blog, and I want to tell you that Avery is beautiful! I so hope she is able to beat this. I know how awful it is to have a sick child and have to force awful things down his throat. My oldest has autism and seizures, and has had to take some horrible medications for it. He was on a liquid med when he was about Avery's age, and it was a horrible experience having to give it to him every day. We started finding him trying to take other stuff on his own. I think he figured that since he had to take medicine anyway, it might as well taste good. LOL! IF you don't mind, I'd love to follow your journey with Avery. I will keep her in my prayers, too.
ReplyDeleteI know your world has been completely turned upside down. I wish I had some good answers/solutions for what you guys are going through. I'm sure there are support groups out there for parents who have children with serious illnesses...
ReplyDeleteHang in there Kristen. Things will settle into a routine - you'll find your groove again. :-)
When I worked on the Infant Unit at Primary's we used to mix crushed prednisone with Hershey's syrup. It is so bitter that the chocolate was the best way to mask the taste so the patients didn't throw up. I've tried it at home too when my kids had to take it for croup. See if that helps. We're thinking of you and praying for you. It was so good to see Avery at nursery on Sunday.
ReplyDeleteHang in there Kristen. Hopefully things will get back to somewhat "normal" for Avery and you. We are praying for you all. Please let us know if there is anything we can do.
ReplyDeleteKristen I can't imagine the stress and challenges that you are facing. Please know I am thinking of you and your family every day. You are certainly one of the strongest and loving people I know.
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