Welcome to our family blog. We've been experiencing complicated changes in our lives, and we hope this helps keep our friends and family informed.
You can contact me at "patrick [at] lovewinters.net" if you're a parent of an affected child and want any help, support, or information. I've also put together a Anti JAK Guide with everything I know as of May 2019 about the research and logistics of the experimental treatment that my daughter is benefiting from.
26 Posts
Happy Birthday, Lennox
Although Auri commands a lot of our time and attention, it's important for me to highlight Lennox, Max, and some of our other activities…
Advancement
About two years ago we went out on a limb and started Auri on a drug that we knew very little about. It turned out to be a wildly successful…
Hold On, Be Strong
You might think that we're in the middle of Winter, but I have my head in the Spring. It's coming quickly, and we're preparing. I was…
Home Is Where One Starts From
Quite a few times recently, I've been reminded that many of our readers don't follow Natalie or I on Facebook or Instagram. I've begun to…
There's No Place Like Home
There's no place like home, which is great because we're back in ours and going to be spending a lot of time here. We've made the decision…
An Unpleasant Situation
"It’s important to recognize that pandemics are difficult to talk about. Anything said in advance of a pandemic seems alarmist. After a…
Anti-JAK Treatment
This is a Work in Progress You might have heard that there was a clinical trial at the Children's Hospital of Philadelphia (CHOP) using the…
New Year, New Perspective
We made a mistake yesterday, a small one that won't have any real consequences; but it has me thinking about the pressure we've put…
Merry Christmas
It's been awhile, and I wanted to write to tell you all that we're still moving forward. And, with the exception of the past week or two…
Happy Birthday, Aurelia
We're excitedly celebrating Aurelia's second birthday today, and we trust that the years to come will be kinder than what has passed. We…
Our Wild Ride
I'm feeling like it's time for me to slow down and write fewer posts. I'll admit that I had hoped for more improvement this year and that…
Summertime
I recently returned from a three week, self-imposed exile in South Florida. With Lennox starting elementary school next week, we wanted him…
Peace
We're finally achieving a peace that has been hard won. The past month has brought more of the same kind of waves that have made this year…
Auri's First Milestone
The 15th of June marked four months of Aurelia's treatment with Baricitinib. When her treatment started, we were given the expectation that…
Slow and Steady, Auri. Onward, Max!
Slow and Steady, Auri Slowing Down Heading in to Mother's Day, I think Natalie and I had been feeling a little defeated. For whatever reason…
For A Wonderful mother
Our lives flipped upside down, but I'm grateful to have such a strong partner. She's become a veritable super mom, carrying my daughter and…
OLD - Parent's Guide to Securing Anti-JAK Treatment
This is old and out of date. I'm leaving it around and archiving it for posterity. I wrote this in March of 2019, just after my daughter…
Lennox's Birthday and Some Videos of Auri's Movement and Play
A Roller Coaster Ending With Improved Lab Tests It's been a stressful few weeks. On my birthday, April 9th, Auri had some disappointing lab…
A Week in the Life
With this update, I'd like to give everyone a sense of our weekly experience. We have a lot of regular appointments with doctors and…
Anxiety
In my past and with mixed success, I've fought my tendency to withdraw. A good friend once described me as "insular," and, admittedly, I'm…
A Trip to Philadelphia to Gather More Information
Auri, Natalie, and I traveled to Philadelphia this week to consult with Dr. Vanderver at the Children's Hospital of Philadelphia (CHOP). She…
Celebrating Progress
I've been cautious and hesitant to openly acknowledge how well things are going because of how fearful I've been ("hope is the luxury of…
With Auri and Hope, Into the Unknown
Having started Auri's drug therapy, we're inching into the unknown, still carrying the fear that has caused us indescribable grief. However…
Tomorrow Begins Auri's Fight
Until now we've struggled to identify and understand Auri's disease, search for hope, and advocate for early intervention. The drug therapy…
Aicardi-Goutières Syndrome
On Thursday, we were told that genetic testing has identified a mutation in a copy of Auri's IFIH1/MAD5 gene known to cause…
Auri's Suspected Disease
At this point I think everyone has heard the term "leukodystrophy," and I thought it might be good for Natalie and I (and you) to hear where…