Category: School Years

Late Night Worries

November 26, 2019November 26, 2019 Amanda

I’ve been meaning to write a post for ages about all the things that have been going really good for Elsie and our family lately, BUT I’m finding that it’s much easier for me to write when they’re not. I’m actually developing a reputation at work for being someone who talks about all the reasons… Continue reading Late Night Worries

Tagged cystinosis, fears, late nights, worriesLeave a comment

Intro

Hi my name is Amanda and my daughter, Elsie, has cystinosis - a rare, genetic, metabolic disease. Right away I found all the facts about cystinosis and its treatment overwhelming. What I really wanted to know was if my little girl was going to be okay. Could she still have a happy, normal life? The answer is absolutely!

I've created this blog so that other families affected by cystinosis can follow our journey through this disease, learn what life is going to be like and how one happy, amazing little girl makes it through.

Above all else just know that there is hope, you're not alone and your life can still be filled with love and laughter.

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So a few months ago Elsie told me that she was starting to feel different from her friends. She wanted to know why she was the only one who had to take medicine everyday. Why she was the only one who had to have regular blood draws and doctors visits. It’s hard when you’re only 1 of an estimated 2,000 people worldwide living with cystinosis and though she can’t make friends that live in her city with the same disease, she can make friends with other children living with medical conditions. In came @zajacranch an organization that helps sends kids with disabilities and medical conditions to camp! You might not know this, but a lot of summer camps can’t take children with special needs, for instance, someone like Elsie who requires medications on a rigid schedule including in the middle of the night, so the fact that Zajac Ranch exists is incredible. And this year we really lucked out because Dave, Linden and I also got to go with her!

It’s Cystinosis Awareness Day! This post today is for the parents of young children with cystinosis who are worrying themselves sick with trying to get calories into their baby. When Elsie was diagnosed at 15 months old it was a struggle to get literally anything into her. She didn’t want to eat, she didn’t want milk and she definitely didn’t want pediasure. At times it felt like she would never eat again and I was slowly going crazy. But one day, shortly after meeting with a feeding therapist and learning how freaking expensive it was, I just sort of...let it go. All that doubt and guilt and fear that I was failing her. In truth, she was getting enough, we WERE doing enough. She was getting by, and in the end I had to accept that I had enough to worry about. And it turns out that was the best decision I could’ve made! Little by little she started to eat more. I can’t even say that it had anything to do with something that we did, I honestly think it was just her growing and learning and finally being ready to eat on her own. Today I’d say she eats like any other kid—albeit a very, very picky one with a need to dip everything in seasoning salt and mayo—and I have the pleasure of watching her eat her breakfast, take her meds, and send her off to school with everyone else. I know it sucks to be told just to wait and be patient and gentle with yourself, but that really is my best advice. At least when it comes to your child’s eating 😉

Today is rare disease day and this little lady is just one of millions of people out there living with a rare disease. She’s strong, resilient, and currently a giant pain in the ass who knows what she wants and will not compromise for anyone. And we love her. Always and unconditionally. I wish life were easier for her, but I think she’s doing great as is. We love you Elsie. So very much 💖

I hope everyone had a safe and Happy Halloween 🎃

Just look at all that third grade attitude! Don’t know where she gets it from 🤫

So apparently I am now the mother of an 8-year-old wizard. Where has the time gone 😩🥳

She really is magical ✨

Picking strawberries 🍓🌞 #strawberryseason

Donate

Because cystinosis affects only an estimated 2,000 people worldwide there is no government funding for research towards better treatments and hopefully one day a cure.

The Cystinosis Research Foundation commits 100% of your donation to issues grants for bench and clinical research studies in order to accelerate research progress and ensure that cystinosis research is on-going.

Click on the logo to donate today

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