Tag: Boston Childrens
-
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…
-
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…
-
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…
-
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…
-
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…
-
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…
-
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…
-
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!
-
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…
-
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…
Confessions of a Mended Heart 