Thursday, May 3, 2012

It's May and the local CF Walks are gearing up...
The girls are doing well, unfortunately the baby contracted MRSA in the NICU (just like her sister!), and she's on a month of antibiotics trying to get rid of it.
I'm not-so-patiently waiting to see the results of the VX809/Kalydeco trial. Come on, Phase 3!

Please remember us in your prayers this month. Not just for a cure for CF, but for getting rid of MRSA, good results in the drug trials, and a healthy summer for these kids. Their mama is amazing. We were talking a couple months ago when we were both kinda depressed and worn out, and she said "You know I never would have pictured CF for our fam" - you never know what life is going to hand you.

I spend too much energy wishing that things were different, not just for my nieces but for my own kids.

I have to keep reminding myself that In acceptance lieth peace -- (Amy Carmichael)

And glitter makes everything a little better.
(I'm totally making glitter salt and pepper shakers for the girls at the beach house. It'll mix fine with all the sand)
Posted by Katy On 2:10 PM 5 comments

5 comments :

  1. My nephew has terminal heart issues, and another nephew deals with painful advance arthritis and my son was born with a neurological speech defect.... so I can surely understand your love, concern, care and desire for a cure with your nieces. I pray they find the cures. They, your nieces and children have a the blessing of being in such a loving family! I just love the glitter in the salt and pepper containers!
    dee dee

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  2. Love it, Katy! You guys are AWESOME and we're all in this together. Now, I must go find me some glitter to take to the beach this summer! :) xo ~ Blake

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  3. outside my office door right now, my co-worker is discussing the 12 hour heart surgery his 9 year old granddaughter is undergoing as i type. 1200 miles away from her home. no words or life philosophy soothe the pain especially when our little ones are the bearers of such things. my ex-husband's nephew was born with a list of troubles and wasn't expected to live til 6. at 6 the doctors said- he won't make it past 12. but somehow in his case, medical advancements kept arriving in the nick of time for him. he lived to see 42 years. he was better at accepting life in the nick of time than the rest of us, though. ....i feel like nothing i am saying here is healing. all the more shakers of glitter become so necessary. yes!

    sherry

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  4. Everyone knows someone dealing with a life-ending illness. It's just so gut wrenching when you get a diagnosis like that right at birth. Philosophy really doesn't help the pain, i know, but at least with awareness and research and drug trials, we can feel like we are doing something to ease the suffering.

    Not so long ago, children born with CF wouldn't live to 1 year old. Now, because of all the drug research, the average age of survival is 37. But so many of these patients are still dying in their 20's. So we keep on raising money and hoping in drugs, just so we can give our kids a few more easy breaths. I never make the mistake of thinking that we are trying to create heaven on earth -- that would be a joke.

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  5. I thought I would pop on over and say "hi". Just catching up on some of your posts. Left a comment on mine for you but do not think they go through back to you. I am soooo bad at these computers sometimes.

    I am sending my prayers up for your family. I read your comment about the the low points and how overwhelming they can be. I know I do not have to tell you that family and friends are so wonderful and supportive but in the end it is just "you" sometimes. Gathering up the strength can be so difficult but somehow you do it.

    When I was at Children's Hospital in Vancouver away from my home I discovered blogging and it has kept me going in many ways. I am not always the best at posting myself but I so enjoy seeing what everyone is up too. It is sort of odd but at times I feel that visiting everyone's wonderful sites keeps me in touch with the world. They remind me of all the happy things again. It is my warm and fuzzy fix that you get with a hot chocolate and a good chic flic when things are dark and cold and feeling horribly off and weird.

    I am so GRATEFUL for all the time and thought put into so many blogs.

    I am thinking of your family.

    xo Sheryl

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Welcome to my three ring circus. Cake? Tequila? Pardon me while I cut this lumber and yell at my kids for the 100th time --

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For many years I was a mechanical engineer by day, a house renovator by night, and a single mom. I previously built a tiny house on Tybee Island that I sold in 2015. Then I lost my day job, met Prince Charming, and now work full time demolishing (fixing) his lake house. ;) Stop by for the house stuff, stay for the never-ending disasters, pianos falling out of the sky, floods, threats of financial ruin, & panic attacks. It's like house flipping meets the zombie apocalypse! with lots of kids!

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