It’s been awhile. I’d say there is so much to catch up on but honestly, it’s just been 9 months of tough work. Katja has spent the last 12 months in a wheelchair. Both for her lack of function and safety. She’s received therapy (PT, OT and Aquatic) 4-5 days a week for the last year. It’s been a very tough year. We’ve had our ups and downs. Lots of tears, wanting to give up, frustration, aggravation but through it all she always succeeds.

Katja doesn’t believe in the word “no” or you “can’t”. She believes everything is possible if you try hard enough. And try she does. On a recent trip to the aquatic center for swim PT a women sat next me and said “I come here every Friday for swim lessons for my grandchild. I’ve watched your daughter’s determination and it’s absolutely inspiring”.

When I say “I gave birth to my HERO” I absolutely wholeheartedly mean it. Katja is better than any super hero I could imagine (yes, even Thor 😆). Her determination has gotten her so far and it will carry her through great things, that I have no doubt.

So what’s happened the last 9 months?

Well Katja has gained 11lbs! Her appetite has returned (with the help of medication) and she’s back to being a bottomless pit. She hit a big growth spurt and went from 35th % back to 70th % for height. She’s filled in so much and finally has a healthy coloration back to her skin.

Her recent Cardiology appt was all around good news too. Not only is everything stable but her heart function improved slightly and her ventricle decreased down to the mild/mod range.

Neurology has been a rollercoaster for us. Boston and Seattle have been battling things out which has really been a blessing for me and a much needed break not fighting Seattle on everything. Katja has formally been diagnosed with ADHD (not just via a telemed appt during Covid) and high functioning Autism. She received a Neurodevelopmental test that took about 8hrs to complete. The results were very reassuring. Though her Chorea is affecting her daily life (obviously) and it definitely sets off the ADHD/ASD it has NOT affected her cognition (she’s still a smart a** 😆). Her reading is a little behind but that is to be expected when our focus the last year has been on gaining basic functions back like writing, talking and eating. Outside of that, she is developmentally normal for her age (she’s actually well beyond her age in problem solving and puzzles). We’ve had a lot of medication changes and dose changes the last few months. Including adding on Clonidine to help with the Carbidopa-Levadopa “lows”. I feel like a drug dealer when I do med pick ups monthly 😬

But I saved the best news for last 😉

After 12 months in a wheelchair, Katja has graduated to a walker!! 🤗🥳

She’s up and walking! She is still working on stamina, which is why her walker comes with a fancy seat to rest on 😉 but she did it. She was determined to get out of her wheelchair and she did. At home she uses the walls/furniture to get around and even that is much less than before.

Our hope, is that like last time, the Chorea gets better by about the 3 year mark. It’s been 18 months since it’s return. With any luck this is the halfway point.

She still has so much therapy ahead but we are down to 3 days a week now. Meds are still being changed and adjusted but TODAY she won, she beat the odds, she did what they said “no” too. She’s walking again because she was determined to believe in herself. She refused to give up. She is a hero, one I am inspired by every single day. The future is brighter because she’s fought for every breath, every beat of her mended heart and every step to be here. To be the version of Katja she wants to be. If that ain’t a hero, I don’t know what is 🥰