Tag: Truncus
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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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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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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…
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Concessions
Read more: ConcessionsShort Version: Yes, we are still inpatient. No, we still don’t have answers. I figured we’d get that out of the way 😉 The long version: Katja’s MRI/MRA were negative for any significant findings or changes. Her EEG was normal. Her swallow study was also good. PT/OT have been stopping in daily to find ways…
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Hopeful for a New Year
Read more: Hopeful for a New YearMy absolute hope for 2024 is answers. Why does this keep happening? Why isn’t she responding to meds appropriately? Why is she getting worse instead of better? Why after everything, her? We as a family are heading into this New Year with hope. Hope for answers and hope for Katja. While I don’t have any…
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Answers come to those who wait
Read more: Answers come to those who waitAnd wait we have. Over 5 years to be exact and while we didn’t necessarily learn anything new, we have new perspective on what we do know. Let me back track slightly to last night. Katja’s labs, X-ray and testing were all negative. She did test positive for Rhinovirus (common cold). Add to that a…
Confessions of a Mended Heart 