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Susan Patient Expert

Seattle, Washington
I am mom to Ainsley, an adorable two year old with a ready smile, who has been through more in her short life than most people will go through in their entire lives.  I am also mom to her two siblings Evie (age 8) and Adrian (age 6) and write about Ainsley's life, her medical... Full Bio
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Decann with CPAP on Monday by Susan Patient Expert Posted in: Blog Posts in Children's Health SURPRISE! Ainsley will be going in MONDAY to attempt decannulation (removing the trach)!!! Really I wasn't trying to leave you hanging as much as I was waiting for con ... Read on »
Some Summer Fun by Susan Patient Expert Posted in: Blog Posts in Children's Health I hate it when I go long periods between blog posts. It makes it harder to write because there is so much to include. That makes it even harder to find the time to blog when ... Read on »
Spring 2014 Medical Update by Susan Patient Expert Posted in: Blog Posts in Children's Health Here's that update I promised. Even when things are relatively calm there is a lot going on medically. Echocardiogram On 5/9/14 Ainsley had an echocardiogram to make sur ... Read on »
Landscaping and May Happenings by Susan Patient Expert Posted in: Blog Posts in Children's Health I'm sorry it's been so long since I posted. Mostly we've been busy with landscaping projects. We are blessed to have a house that works so well for Ainsley's needs. Even the ... Read on »
Forearm Crutches & Goal of Walking Independently by Susan Patient Expert Posted in: Blog Posts in Children's Health In April we had a 3 hour meeting to prepare Ainsley's IEP (Individualized Education Plan)  for the coming year. You frequently hear parents say they had to fight thei ... Read on »
Easter 2014 by Susan Patient Expert Posted in: Blog Posts in Children's Health   At our house the wine always floweth. The beer too. Or whatever you care to dr ... Read on »
Penny's 1st Year or All About Penny by Susan Patient Expert Posted in: Blog Posts in Children's Health Our pretty puppy Penny came to live with us on Adrian's 10th birthday. In case you haven't heard, it's  a great story .  This photo, by Blue Lily Photography, was taken ... Read on »
Habits & Beliefs by Susan Patient Expert Posted in: Blog Posts in Children's Health Some people believe that whatever you believe about your own life, the universe will give you experiences that are in line with your beliefs. It's a scary thought. I feel li ... Read on »
Shine On by Susan Patient Expert Posted in: Blog Posts in Children's Health So apparently part of why I was feeling so drained when I wrote my last post was that I wasn't just "not 100%" but was hours away from having a 101.7 degree fever with muscl ... Read on »
A Day In the Life by Susan Patient Expert Posted in: Blog Posts in Children's Health Today was a day filled with Ainsley. Many days are like this. Sometimes I forget how much of my energy is directed toward her care in one way or another. Then all of a sudde ... Read on »
Craniofacial & Eyelid Update by Susan Patient Expert Posted in: Blog Posts in Children's Health Last week we had two important appointments with the craniofacial clinic and the occuloplastics surgeon. I've been wanting to blog but we had another round of illness hit ou ... Read on »
Joy Among the Tedium by Susan Patient Expert Posted in: Blog Posts in Children's Health This week I happened to stumble upon this interesting article All Joy and No Fun: Why parents hate parenting . It got me thinking about why it might be that I can love my ch ... Read on »
Airway Appointment Results & Other Happenings by Susan Patient Expert Posted in: Blog Posts in Children's Health We recouped over the weekend and thankfully by Monday Ainsley was well enough to go back to school because there was a lot going on this week. Last week we got the word ... Read on »
True Love by Susan Patient Expert Posted in: Blog Posts in Children's Health This Valentine's Day I find myself reflecting on true love. It is easy to love when life is easy. It is harder when things get hard. A simple and perhaps obvious fact. After ... Read on »
The Thing That Never Gets Done by Susan Patient Expert Posted in: Blog Posts in Children's Health  I don't think I had a chance to show you my fortune cookie from dinner with my friends while in Arizona. I thought it was perfect for how I was feeling after my trip th ... Read on »
Every Life Counts by Susan Patient Expert Posted in: Blog Posts in Children's Health It's been a week since I returned from a trip to Arizona to be by the side of my dear friend Ann as she buried her beloved son Jack. I came back from this trip a changed per ... Read on »
Major Feeding Progress and New Stuff by Susan Patient Expert Posted in: Blog Posts in Children's Health I have exciting news to share. Hopefully I don't jinx things by talking about it. Ainsley has made major feeding progress. Over the years we have worked SO hard to get Ainsl ... Read on »
In Honor of Jack and His Amazing Mom Ann by Susan Patient Expert Posted in: Blog Posts in Children's Health Seven years ago my world was turned on end when everything I knew changed with the birth of my third child. I was totally unprepared to be the parent of a medically complex ... Read on »