The Sunbathing Beauty
We've kept our MD infection free since the middle of May--the longest we have ever gone and it keeps me breathing grateful sighs of relief daily. Our current battle is getting her to eat and keeping it down. She usually averages 1 cracker a meal plus calorie revved milk. I tearfully watched her this morning as she ate two pieces of cereal, two crackers and cheese, one goldfish, and 4 ounces of milk--a feast for her belly and a feast for my eyes. CF plays games with her body, making it hard to absorb fat and its soluble vitamins and her appetite seems to be almost nonexistent. We give her 6 pills of enzymes a day to help her absorption. We've had to come up with some creative methods to get her to take these pills and it has, unfortunately, made her gag reflex hyperactive. This makes the 9 other doses of oral medications tricky to dispense. I've sworn to never get an apartment/home with carpet again after cleaning up one too many upchucks. Wood floors for us, thank you.
This little girl always amazes me with her quick bounce-back to her sweet self after one of her eruptions. She's teaching her mama to do the same. Yesterday I had to retreat to the laundry room where she couldn't see me cry as I tried to recoup control of my emotions. I may not have control of what happens but I'm learning to control my reaction--a tough lesson but it's made our life bearable during the tricky times.
11 comments:
After mom got used to picking up MD, she was sore the day after she hoisted our heavy little Cloves. Two ends of the spectrum, you dealing with something I may never fully comprehend, but you do it with grace and strength. Love you.
Ann, you AND Mary Deane are amazing. Brendon is too. We have seen you all in action and I'm awed at your patience, your resolve, your resiliency and your love.
What a blessing Mary Deane has been infection free since May!
Looking forward to a MD fix in a few weeks! See you soon!
Love,
Dad/Grampa
PS like your new music
Oh, it never stops, does it? But she and you and Brendon continue to shine!
Cleaning up after throw-up is tough! It sounds like eating is something you will never take for granted again. MD is in my prayers, I hope she can continue this trend of eating enough.
Can't wait to come help you out and see her in a week! Maybe she will eat lots of Wheat thins with Aunt Karlie again. Love you all!
Oh Ann, you are doing so great (so is MD)!
:)
Ann, you are such an amazing example of sacred motherhood. Thank you for doing it so gracefully. I hurt when you hurt and cry when you cry just like I do with my own children. So sorry that this is at times such a trying journey but so glad that for three months MD has been infection free. Yay, Mary Deane, Yay Ann. Love you, Tinampgrammajones
Is it just me or do I see some "Lucy" in this photo? Love Lucy, love Mary Deane. love you, gramma jones
You are AMAZING because of all you do AND because you cry.....because those tears of ones of love for you sweet little MD. Praying that she will continue to remain infection free and eat her belly's full!!
Dear Ann,
I'm a friend of Katy's. We knew each other in Jacksonville and served in the Primary together. I've clicked on your family's links in the past and not taken the time to say hi to you, but hi :).
This may seem really forward of me because we don't know each other, but I just felt compelled to share with you a little bit about a branch of energy medicine nicknamed "allergy elimination." I hope you aren't weirded out or offended by this in any way. (I promise I'm not a stalker!)
Anyhow, a few years ago I became really interested in energetic allergy elimination due to some health problems I was having. The basic premise of allergy elimination is the idea that the body's energies (think energy meridians) can be re-programmed to be desensitized to almost any offending substance.
The reason I'm writing is because I was reading the story of a mom who wrote into a newsletter about how much allergy elimination had greatly helped her daughter who had Cystic Fibrosis. I think it is intended to be used as a companion treatment and not to eliminate or replace traditional therapy. I don't think it's a magic bullet and wouldn't be so insensitive as to suggest that, but in the spirit of being generous with information, I thought you might want to find out and research it yourself. I have had some friends who've had great success with it (helping their son who used to have an extreme reaction to egg whites). I've heard dramatic stories for cures to peanut allergies, celiac disease, and then some which are less dramatic.
It's non-invasive and completely gentle. I've had it done on myself. It just uses finger-touch. And for children and infants it can be done through a parent (hard to explain, you'll have to read about it). There are practitioners everywhere, the work is finding one who is affordable and one whom you can trust. They're not all awesome, but some are! If you find a practitioner of allergy elimination that is generous with her/his knowledge, often you are able to learn the technique and use it yourself, eliminating the need to go anywhere and pay people for their expertise.
Dr. Devi S. Nambudripad is the founder of this modern method (NAET), but there are shoot-offs and branches of this original technique. E-mail me if you have any questions about it. I'm no expert, but I'll try to find a link to the story I read. I haven't had luck so far tonight. mkaneyuki@gmail.com. Take care.
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