top of page
Kristen
Jan 16, 20223 min read
HPS Diagnosis
September 25, 2016 Tegan was born with vibrant white hair, nystagmus, light sensitivity and difficulties with vision. It was known at...
22 views0 comments
Kristen
Jan 16, 20224 min read
Feeling Equipped
September 28, 2016 On Monday, Jodi and I had the opportunity to meet with Tegan’s hematologist without Tegan being there. This was our...
4 views0 comments
Kristen
Jan 16, 20223 min read
Becoming the Experts
October 10, 2016 1 in 1,000,000. We say this to make someone feel special, unique, irreplaceable. Now it just feels like…oh crap, that...
6 views0 comments
Kristen
Jan 16, 20223 min read
Genetic Results
November 25, 2016 I don’t really know what to say right now. With Thanksgiving upon us and family coming into town Jodi and I were given...
3 views0 comments
Kristen
Jan 16, 20223 min read
Recruiting a Team
December 11, 2016 Our brother-in-law Brady is a College Basketball Coach. His focus is constantly on recruiting players to bring new...
4 views0 comments
Kristen
Jan 16, 20224 min read
A New Family
April 20, 2017 Being rare has really made us feel isolated. Isolated geographically from others that share our same journey, but we knew...
10 views0 comments
Kristen
Jan 16, 20223 min read
Oh the Worry...
May 30, 2017 There has been a fine balance of us wanting to bubble wrap him and wanting to see him take his bike off the ramp. It is...
6 views0 comments
Kristen
Jan 16, 20223 min read
A Lost Opportunity
September 21, 2017 On Tuesday afternoons Tegan has a Ninja Gymnastics class we signed him up for. Let me tell you it is awesome!! I...
1 view0 comments
Kristen
Jan 16, 20224 min read
Update and Ear Tubes…again!
June 5, 2018 I know it has been a super long time since I have updated or wrote about Tegan. What is new? Tegan will be 5 in June and...
2 views0 comments
bottom of page