Tag: Truncus
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Boston Round 2
Read more: Boston Round 2We officially have dates for our 2nd trip to Boston. Katja and I will be flying out via a redeye Dec 3rd and returning Dec 7th (if additional testing isn’t required). Her appointments with Neurology and Cardiology are Dec 5th. Cardiology just wanted a check in since we’ll be there anyway. So far we’ve tried…
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Stages of Grief with a complex child
Read more: Stages of Grief with a complex childIt’s taken me a long time to write this. I wish I could have found the words sooner but the many stages of grief have been difficult. I’ve been in denial. Hoping that what I’ve been seeing was just my imagination. If we pretended everything was okay, then it would be… Right? Guilt for not…
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(W)Hole Heartedness
Read more: (W)Hole HeartednessKatja’s recovery has been slow and smooth. Which is just the way we want it 😉 Her stamina is improving weekly. The first days after surgery included multiple naps, then getting to lunch was difficult. Now she can make it to about 6pm before she’s ready for bed. The amazing thing about the human body…
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hospital adventures
Read more: hospital adventuresKatja is doing extremely well the last 2 days. She’s been asking to leave her room, visit other areas of the hospital and play in the activity room. She saw both rooftop gardens, both indoor gardens and the WishingStone terrace. We’ve been playing lots of games in the activity center and fingers 🤞 we get…
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Anniversary 0f OHS #2
Read more: Anniversary 0f OHS #2❤️Our 3x OHS survivor❤️07/28/2015~06/26/2018~06/21/2023 👏👏👏👏 Happy Heart-iversary!
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Todays going to be a fantastic day
Read more: Todays going to be a fantastic daySassy pants is back! Katja had a really good night. She’s off her narcotics now and down to IV Tylenol/Toradol. She is finally starting to drink and will hopefully eat some breakfast. Her poor digestive system is finally starting to wake up and cause some minor discomfort but she is still much better today. Chest…
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baby Steps
Read more: baby StepsBaby steps… Last night Katja had her first “bath” in a chair. We called it her “Spa Night”. She even had a hair washing shower cap. She definitely perked up after getting clean and walking a little. Today has been much better. Eating/Drinking have been limited. She’s on such high levels of narcotics that she’s…
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givIng up is not an option
Read more: givIng up is not an optionToday was a step back. Today was hard. Today was exhausting. Today will hopefully be tomorrow’s memory. Katja has been in severe pain since 6am. Even with a lot of Dilaudid on board. Around 10am, I did what I do best…. I went into Mama Bear mode 😡 By 10:25am the entire unit was outside…
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Popsicles and pain
Read more: Popsicles and painIt was a long night for Katja. She was pulled off a majority of her meds and started on oral medication. Unfortunately with her sedation finally wearing off she’s in a lot of pain, which is spiking her blood pressure.We’ve talked to the team and gone through a lot of different options but it seems…
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determination is her strong suit
Read more: determination is her strong suitTo say “this kid is a RockStar” would be an understatement. I am in awe of her. She is a warrior. When she decides something, nothing will stop her. Absolutely nothing. She has been breaking through sedation since a few hours out of surgery. Giving us all her fiesty sass and her famous raised eyebrows.…
Confessions of a Mended Heart 