We had the Cystic Fibrosis Great Strides walk yesterday. The rain stopped a few hours before the walk. I stayed at home with Dad while Mom went to the walk. So many family and friends showed up to support me and my fight! My parents and I are so touched by each and everyone of you who have donated and walked to show your support. We definitely feel the love. It makes us hopeful that with this great support, from wonderful people like you ,we will find a cure.
I am doing very well. I am no longer on IV fluids. My blood results have been great without having the extra hydration. I am keeping myself well all on my own! Not being hooked up to a pump at night is great. I am up to 30.5 calories per ounce for my Elecare formula. Since I have a milk allergy I will probably be on the Elecare for quite a while. I can't have any milk products or products with milk proteins (casein, whey) in them. That is a lot of stuff. I am a mad man with my walker. I run with it and plow through anything in my way. I can stand on my own for a few seconds and then I plop down on my bum. I think that is a fun game to play...stand up, plop down, stand up, plop down. I am finally getting to sleep about 8-9 hours without having to wake up to be changed or eat. Mom loves that she can finally sleep for longer periods of time too. I am not on TOBI this month so that is a nice bonus as well. I don't have to be restricted as much during the day. At my age I like that. I hate when Mom and Dad make me sit still for my treatments. I am a very good boy for all the stuff I do have to do.
I also got my first haircut. Mom cut off my curl and saved it. Dad took the hair trimmer and tried to even up the sides. I liked the buzzing of the trimmer. I am really getting to be such a big boy.
Happy Spring!
Ben
I am doing very well. I am no longer on IV fluids. My blood results have been great without having the extra hydration. I am keeping myself well all on my own! Not being hooked up to a pump at night is great. I am up to 30.5 calories per ounce for my Elecare formula. Since I have a milk allergy I will probably be on the Elecare for quite a while. I can't have any milk products or products with milk proteins (casein, whey) in them. That is a lot of stuff. I am a mad man with my walker. I run with it and plow through anything in my way. I can stand on my own for a few seconds and then I plop down on my bum. I think that is a fun game to play...stand up, plop down, stand up, plop down. I am finally getting to sleep about 8-9 hours without having to wake up to be changed or eat. Mom loves that she can finally sleep for longer periods of time too. I am not on TOBI this month so that is a nice bonus as well. I don't have to be restricted as much during the day. At my age I like that. I hate when Mom and Dad make me sit still for my treatments. I am a very good boy for all the stuff I do have to do.
I also got my first haircut. Mom cut off my curl and saved it. Dad took the hair trimmer and tried to even up the sides. I liked the buzzing of the trimmer. I am really getting to be such a big boy.
Happy Spring!
Ben
4 comments:
Hi Ben,
We were glad the rain held off for the walk, and thankful for everyone who attended the walk and donated to Great Strides.
You are a mad man with your walker, but we love watching you play and enjoy yourself. Sweet dreams and God Bless you, Grandma Carol & Papa Phil xoxoxoxox
Benjamin,
What a wonderful turnout for the walk! Your family is always in our thoughts and prayers. Thank your Daddy & Mommy for keeping this site up to date for us to watch your progress. Thinking of you on your Christening Day and hoping your Mommy has a great Mother's Day.
Love,
Aunt Kathy
Hi Ben,
You are getting to be such a big boy, I had so much fun with you this weekend, you are doing great!
Love you,
Aunt Tera
what a good-looking bunch that you had helping out. nice to see the t-shirts make a reappearance. wish i could have joined you again this year!
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