Archives

2016

Jul 12: Tips For Keeping Your Child Cool in the Heat
Summer is here and it’s hot! Some children with cystinosis have problems regulating their body temperature so I share some insider tips that can help keep them cool

Jun 22: Help Layla’s Wish Come True
The Children’s Wish Foundation is holding their 5th Annual Princess and Pirates Tea Party on July 10 in honour of little Layla and you could win tickets!

Jun 15: Tiny Superheroes
Elsie just got her TinySuperheroes cape and she loves it!

May 20: Beads of Courage and Bravery Buddies
Beads of Courage is an arts in medicine program that allows children to share their medical journey through beads. And bravery buddies are cute little stuffies to store them in.

May 3: I Hope He Knows
A rough morning for out family and what I hope Linden will always know

Apr 18: Listen To Your Mother
I’m super excited to be a part of Vancouver’s first Listen To You Mother show

Mar 24: Advice I Have For Parents New to Cystinosis
6 pieces of advice that I would give to parents

Feb 19: We Should All Care About Rare
I share some scary facts about rare diseases and why Rare Disease Day is so important

Jan 13: New Year, New Medicine
First check up of the year wasn’t quite as awesome as I hoped and a new medication gets added to Elsie’s daily regime

2015

Nov 29: Holiday Giving
I share a couple ways that you can bring the act of thoughtful giving into your holiday season

Oct 25: She Just Keeps Growing!
Another update on Elsie and how awesome she’s doing on growth hormones!

Aug 26: A Loving Tribute
We join the cystinosis community in paying tribute to three lives lost to cystinosis this past week

Aug 17: Is it Terminal?
Is cystinosis a terminal disease?

Jul 3: Dream, Achieve, Inspire
As part of the CRN’s cystinosis family conference they are unveiling the “Dream, Achieve, Inspire” travelling art show, with a special piece from our budding artist

Jun 29: My Daughter’s Disease is Not Useless Information
“The Indispensable Book of Useless Information: Just When You Thought It Couldn’t Get Any More Useless–It Does” added cystinosis to their Mystery Diagnosis section. I am outraged

May 21: How Things Are Going
An update on Elsie and her current medication schedule

Apr 5: Cystinosis Sunglass Day
Help support Abbi and all people living with cystinosis by participating in this global event

Mar 28: Welcome Baby Linden
We’ve had a beautiful baby boy, Linden!

Mar 20: Preventative Bed Wetting Measures
Most people with cystinosis suffer from polyuria. Here are some tips for how we deal with night time bed wetting

Feb 7: Our Tiny Light
We were so lucky to be chosen by the Tiny Light Foundation for some beautiful family photos

2014

Dec 16: The Dark Moments
Every now and then a dark moment comes by and reminds you that your baby has a lifelong disease

Dec 7: Baby #2
Quick pic of baby #2 with some good news!

Nov 20: Genetic Testing
The long saga of how we finally got the genetic testing done for Elsie’s CTNS gene mutations

Oct 2: We’re Expecting!
After months agonizing over whether or not to try for another child, the decision was made for us!

Sept 25: Roller Skating with Rickets
I review Jessica Jondle’s book Roller Skating with Rickets

Aug 12: She’s 2!
Can’t believe my little girl is already 2 years old and doing so well!

Jul 23: Up, Up and Away
How well Elsie is doing on growth hormones and her new medication list

Jun 22: Dealing With Insurance
The long battle with our insurance company to get Elsie’s medications covered

May 21: Step Up
We bought the cutest stools for our parents from Step Up For a Cure. And a quick update on how great Elsie is doing!

Apr 21: One in Four
Dave and I struggle to come to terms with the one in four chance that our next child will have cystinosis

Apr 8: The CRF Day of Hope Conference
A recap of the Day of Hope conference and how truly uplifting it is

Mar 1: The Importance of a Second Opinion
We meet with a Nephrologist who’s treated patients with cystinosis before and couldn’t be happier with him!

Feb 5: And the NG Tube is Out
Why we decided to take the NG tube out

Jan 17: To NG or Not to NG?
Our family struggles with the decision to give Elsie a nasogastric feeding tube

2013

Dec 19: Happy Holidays!
One of the best Santa pics yet and I share some great ways to support cystinosis research this holiday season

Dec 7: Risky Business
Attempting to get a “clean catch” urine sample from a toddler

Nov 21: Everybody Look Out… She’s Walking!
Now that she can walk we’re really in trouble! Also an update on her levels since starting her medications

Nov 12: Finding Support
The importance of finding support from either family, friends or through support groups

Nov 10: Welcome to the Rest of Your Medicated Life 🙂
A list of the medications Elsie must take and how I get them into her

Nov 8: Finding Out About Cystinosis
The story of our journey to Elsie’s diagnosis

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