July 23, 2026
Just a cute summer throwback to a Toronto memory. I miss the simple days of fun family memory making.
Tate is hanging in there. I’m seeing lots more sleeping and lower blood pressures. She’s still retaining SO much fluid which is hard in all kinds of ways. Her coloring hasn’t been great, she’s had more pain and nausea again and she just isn’t feeling well at all. I’m wanting to blame it on this GI infection but we’re several days into those antibiotics. My hope is it’s not this tissue infection battling to be seen again as the GI antibiotics only sit in her gut and she’s off the IV antibiotics. But my prayer is always for something to treat and fix and the fear is always a worsening baseline.
Keira is holding steady while still dealing with daily struggles with multiple body systems. I never really updated on her brain imaging. We bounced from a cyst to a tumor on her pituitary gland. She does have a cyst on her pituitary. Often, when people find these they cause no issues. Keira’s is about 3 times that typical size and is pushing her pituitary stalk to the side. If it’s impacting hormone production/regulation, it can cause lots of problems. The pituitary is the master gland in your brain. We’re working with endocrinology at Mayo FL to either confirm or rule out this contributing to her mosaic of issues. She’s on waitlist for 3 other specialists here in CO including GI and cardiology. The earliest being Oct and the latest in March of 27. She’s doing a great job pushing where she can and resting when she needs while she tries to rebuild stamina and strength to combat the dysautonomia.
It’s been a really challenging season once again. We’re so grateful for the loved ones who just meet us where we’re at. It’s hard to convey the 24/7 daily life that has medical background noise running all the time. Daily life has been so hard for my 19 and 21 year old girls. And heartbreaking to be on the sidelines of. If I share, we’re left wide open to personal interpretation on our life from those living lives filled with vacations and normal work days, and all the simple things being taken for granted by healthy people. If I don’t, it’s assumed all is well. In the end, we are grateful for the prayers of those who see us for what is our reality without a competitive undercurrent or judgment. We know that even on the most isolating days our God fills in all the gaps and is the foundation that keeps us steady. There really is nothing else that matters.