Team Dallas - Our Canavan Disease Warrior

03/21/2026

Took Ryan to to the ER today. The wound on his leg was debrided on Tues and yesterday it was looking really ugly. It also smelled really really bad. So vascular surgery who is managing his wound care told us to take him to the ER. All of his labs were really reassuring. His WBC was within normal range and his inflammatory markers were only slightly above normal. All great news! They put him on two different antibiotics to get us by until our wound vac supplies get here. And we will follow up with the vascular team next week. If infection is starting we caught it plenty early.

I am going to share pictures of his wounds in the comments, but I will hide them under the Nest. They are incredibly graphic so please do not look if you don't have a strong stomach for gross stuff. Its bad.

Dallas had a good week. He was a little uncomfortable today but we got him feeling better. Cheeks are super rosy but no fever! We are ready for some Live on Patrol tonight!

ETA: The wound photos are of Dallas' dad, NOT Dallas' leg.

03/15/2026

The kids are having a blast! The weather is getting bad fast so I already extended our stay by 1 day. I just do not feel like the roads will be safe enough to drive on tomorrow with all these young ladies I am responsible for. Needless to say the girls and Deputy Dallas are THRILLED to be snowed in at a hotel instead of their own houses. Stay safe everyone!!!

03/14/2026

03/14/2026

What do you do when there is a Blizzard Warning and a birthday party on the same day? PARTYYY!

03/08/2026

Dallas is looking so fresh and ready for a nap after his haircut, bubble bath, and massage 🥰🥰

03/08/2026

Haircut day and Deputy Dallas is THRILLED 😂🥰

03/03/2026

This is why Deputy Dallas and I are proud be Live on Patrol backseaters. We love and support our friends at the Ramsey County Sheriffs Office 💙

These are humans
We as society have to be better
We all bleed red
How would you want your loved ones to be treated?

Spread kindness and respect. You never know what someone else is going through.

02/28/2026

My friends at the Ramsey County Sheriffs Office are Live!

02/26/2026

Dallas is having a better day today! It wasn't off to a great start. He did throw up this morning and needed an outfit change but has been much better overall than he was yesterday. Still some shaking and high tone/clonus, but he hasn't needed any rescue meds so far.

And we have smiles!

Gaaaah.... he is SO extreme 🙄
Day to day you never know which version of Dallas you are going to get!

Also because I saw a lot of comments asking yesterday....Ryan is doing better! The wound on his leg is gnarly. Its starting to weep and drain a lot more now which i think is part of the healing process. Or just swelling in his leg having nowhere else to go? Its not infected, just dead. We will see plastic surgery In about 4-6 weeks to discuss skingraft. He is still sore but has weaned back a lot on pain management so he can do more. Trying to make sure he doesn't OVER do it has been a bigger challenge lol.

Emma is doing great! She has been helping me with Dallas when she isn't at school or church or racing. YES Emma is still racing! She is doing snow drags instead of ice ovals now. Her big sister Bre has been racing this year too! They were at Triplefest Last weekend with our race family while I took care of our boys from home.

They will be racing in Hugo this Saturday 🏁

02/26/2026

Today has been a terrible day for Dallas. He has been battling dysautonomia tone, clonus, mini cluster seizures, and pain alll day. His suspected seizures episodes are intermittent, brief, but fairly frequent. The more painful episodes are far worse. Something is changing. His doctors have been consulted and arent quite sure what this is or what to do. "Try this, try that, if it gets worse or persists through the day tomorrow, bring him in"

He just finally fell asleep after his 5th dose of rescue meds. Please just pray that he has a better day tomorrow.

He was SO HAPPY yesterday!!!

This life is such a rollercoaster ride ...

02/21/2026

We are hanging in there! By threads... but hanging, none the less.

So let's start with Ryan.
Appointments appointments appointments this week! Orthopedic Surgery, PT, Wound Care, home care nursing, primary care, urgent care visit for pain management, repeat labs, repeat imaging, etc etc etc.

Ryan (as of now) will not need surgery on his knees/legs. He has several fractures in both knee joints. He also has the fracture in the middle of his fibula. All should heal on their own. The complete MCL tear on his right knee could also heal on its own. Bruising is getting better every day. But he is a hurting man. Still very very sore. His tailbone and legs are giving him a hard time. But we will get through it. If anything NEEDS surgery it will likely be the impact wound where his skin has died. We are going to see what we can get to heal over the next 4 weeks with daily wound cares, then we will meet with a plastic surgeon to discuss skin graft surgery. We will also meet with orthopedic Surgery again in 5 weeks to follow up on the knee fractures and MCL tear.

🙏🙏PRAYER REQUEST🙏🙏
Monday, Ryan will be going to the OR for a push enteroscopy and a biopsy on the mass that was found in his duodenum on the CT. Please pray that it is some sort of vascular anomaly and NOT anything cancerous 🙏

Now Deputy Dallas...
Keeping us on our toes as always! He had a pulmonology appt this week that went pretty well. He is still moving good air on his own but isn't clearing secretions well. So we increased cough assist treatments and they are ordering a portable oxygen concentrator for him so we don't have to haul oxygen tanks around. Today we have been struggling to keep his oxygen up. Its gotten worse as the day goes on so he is on O2 but he is still pretty happy. We did have some iffy and hard days this week that required extra meds to keep him comfortable. But we are getting through it.

Thank you SO MUCH to everyone that has brought us meals these last 2 weeks! I appreciate that more than you know. I have a LOT on my plate and every little thing that makes if easier helps 💖