Tag: CHD
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When Stars Align
Read more: When Stars AlignTo say the last 3 weeks have been absolutely insane would be an understatement. We arrived in North Carolina to be greeted by Tropical Storm Chantel and multiple days of thunderstorms after. With all the flooding in the area and hotel issues, we were forced to move hotels, not once but twice in the span…
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Tick Tick
Read more: Tick TickIt’s been a long week. Shortly after we arrived Katja crashed and went to bed early. The next morning she was completely exhausted. Very tired and crabby. We were prepared for her having some jet lag but this was much worse. Over the next week her appetite disappeared (she’s on medication to stimulate it), she…
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Up Up and Away
Read more: Up Up and AwayWriting this from inside a plane that up until 48hrs ago I never thought we’d achieve, is a bit surreal. I think we as a family are still very much processing everything that just happened. From feeling hopeless just a few days ago, discussing emergency back up plans that we knew had significant risks to…
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Thank You
Read more: Thank YouWe are beyond grateful for all the people that reached out to us and the media to make this happen. Thank you all so so much! Kiro 7 King 5 (click to watch) https://www.king5.com/embeds/video/responsive/281-fc70c02e-2332-47b6-b696-7ba27a8c0679/iframe
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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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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…
Confessions of a Mended Heart 