Tag: Boston Childrens
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Here we are
Read more: Here we areChecked in and waiting to head back…. I will update the blog as often as my Facebook today to keep those of you not on my social media in the loop. So be prepared for multiple posts today!
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Surgery Day choices
Read more: Surgery Day choicesTo say “it’s been a day” would be an understatement. There are so many times when this little girls bravery amazes me but each time it still takes me by surprise. Today was long. Very very long. As adults, we struggled with the schedule. There were lots of shed tears, frustrations, cries to return home…
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Getting Settled
Read more: Getting SettledWe arrived safe and sound yesterday. It was definitely a whirlwind of a day. Patient housing is situated right by Fenway park. Which means we have lots of food options to try out 😉 Katja picked Woodfire pizza for dinner and some delicious noodles for this evening. We did some grocery shopping and found a…
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cotten Candy clouds
Read more: cotten Candy cloudsUp, up and away…. We’ve departed Seattle and have had a fairly smooth flight. We are about halfway in a 5.5-6hr flight. Katja’s tired, crabby and always hungry. So it’s been a struggle keeping her entertained AND masked! 3 days to surgery, she can’t get sick now! I think the highlight of flying for her…
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The last minute shuffle
Read more: The last minute shuffleWith all the chaos going on before we leave (I’m looking at you refrigerator that decided to break down yesterday 😑) what’s a little last minute date shuffle? Received the call this morning that the surgery date has been moved from Friday (June 23rd) to Thursday (22nd). Looks like we won’t make Legoland before surgery…
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What’s life without a little chaos
Read more: What’s life without a little chaosIt’s the 10 day count down! Things here have been super busy. Lots of end of school year activities, last minute appointments and getting everyone ready for us leaving. We’ve been trying our hardest to keep Katja’s day to day as normal as possible but with the heat and her heart, she’s been pretty tired/crabby.…
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Echos of the Heart
Read more: Echos of the HeartLatest Heart Echo update
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We have Dates for OHS #3
Read more: We have Dates for OHS #3Katja seems to be a little better. We had an ER visit last week after she spiked multiple high fevers a week apart. Her Cardiology team was worried about endocarditis.
Confessions of a Mended Heart 