2018
No posts 😦 I’m so sorry, real life got in the way hard this year. I promise I haven’t forgotten about this blog and that we’re all doing well. Hopefully I can get my act together and start posting regularly in 2019
2017
Aug 2: Strength: Lives Touched by Cystinosis is Here!
It’s finally here, a collection of stories from the cystinosis community with all proceeds going to the Cystinosis Research Network!!
Jun 17: Strength: Lives Touched by Cystinosis Cover Reveal!
Super exciting reveal for the cover of an upcoming collection of stories from the cystinosis community that author Amanda Leigh and I are compiling
May 11: Looking Back
Sometimes looking back at old photo’s makes me think of life before cystinosis
Apr 11: The Day of Hope Family Conference 2017
I recount the amazing time Elsie and I had in California at the CRF’s Day of Hope Conference
Jan 30: The Year Ahead
Why I’m looking forward to 2017. I also share Elsie’s updated medication schedule
2016
Nov 28: Take Care of Yourself as Well
How I learned the importance of taking care of yourself and what I do
Oct 4: When It’s More Than Just Picky Eating
I share some tips I learned from a workshop put on by SHARE on how to help picky and problem eaters
Aug 4: My Listen To Your Mother Experience
I recount the terrifying time I got up on stage in front of almost 300 people and why I have cystinosis to thank for it
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
Elsinosis: Living with Cystinosis 