Tag: Katja Strong
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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…
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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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Helplessly Hopeful
Read more: Helplessly HopefulHelplessness is never a good feeling. When it’s yourself it can feel terrifying but when it’s your child, it’s maddening. Katja’s Chorea continues to worsen. 3 months ago she was a fully functioning independent 8 year old that was recovering from her 3rd open heart surgery. Now, she’s a fully dependent child that can not…
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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…
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Can We Get A Break?
Read more: Can We Get A Break?I wish I could say that our Redeye to Boston was uneventful but what would my complex warrior be, if not even more complex? Katja decided mid-flight to start coughing like crazy and send her O2 into the 80s. Lots of Albuterol, steroids and scaring the living daylights out of Mom and we were able…
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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…
Confessions of a Mended Heart 