Category: Updates
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Katja Needs Your Help!
Read more: Katja Needs Your Help!The waiting is the hardest part, honestly it is. Katja got to watch her big sister Nevaeh graduate (thanks to the kindness of the Angel of the Winds arena). We were able to breeze her in a separate exit, avoid all the crowds and take her right to an isolated box suite. She was able…
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The Calm In Our Storm
Read more: The Calm In Our StormA question I get asked often is “How are you so calm about Katja?” The answer is, well, complicated. To understand why we take all of this in stride, you first have to understand Katja’s journey. We found out at 19 weeks pregnant that Katja’s heart was not “normal”. We had months to learn, prepare…
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A Partial Gift With Significant Risks-PHT
Read more: A Partial Gift With Significant Risks-PHTThat big “T” word that makes everyone’s heart flutter just a bit. It’s scary, it’s unknown but when it’s spoken out loud, you just know, something is wrong. Transplant. There I said it. Did your heart skip a beat? Mine does, every time and I’ve been saying it a lot lately. So let’s talk about…
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Save Katja’s Heart: Urgent Flight for a Rare Transplant
Read more: Save Katja’s Heart: Urgent Flight for a Rare TransplantHelp Katja! Spread the word! https://gofund.me/33c1e6e5
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Can you Cure a broken heart?
Read more: Can you Cure a broken heart?I don’t know but I’m willing to find out……. Katja was doing great. She had made the transition from wheelchair to walker and was slowly building her endurance back up. Her Chorea was still progressing but at a slower rate. We decided to have a talk with her Neurology team at Boston and finally caved…
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That walker is made for walking
Read more: That walker is made for walkingIt’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…
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De Novo: How New?
Read more: De Novo: How New?I’ve been trying for a few weeks now to find the words to write this. Let me first start by saying that Katja’s doing well. We’ve gone up on her dopamine to a point where she was starting to get side effects. Specifically weight loss, nausea and occasional vomiting. So we decided to pause on…
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Stranger Things Have Happened
Read more: Stranger Things Have HappenedI know I’ve been a bit silent the last 2 weeks. I wish this was due to a much needed recovery from being impatient but unfortunately not. It’s been a super busy few weeks for us. Lots of follow up Dr appts, therapy consults, permanent wheelchair sizing and trying to navigate life with our new…
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Rainbow Power
Read more: Rainbow PowerThe Princess on wheels has been a little down about her new chair. She said it was “dark and sad looking”. A few hours later, some tape, accessories and a aching back… And we have a very colorful Rainbow Powered Ride 😉 She is super happy about it. These days I’ll do anything to get…
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New Reality
Read more: New RealityKatja’s home!! 🤗🤗🤗 It’s been a long week. I know many of you are just as heart broken, frustrated and upset as we are for Katja. I wish I could give all of you answers but we still don’t have any ourselves. Everything being negative, though not helpful in pinpointing cause, is an answer. It…
Confessions of a Mended Heart 