#magscoonley

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Great news! Magnusson had his annual EKG and echocardiogram last week. Dr. Rhee from Phoenix Children's Hospital called today and said both valves (aortic and pulmonary) look perfect!!! No leaks or narrowing/expanding. He’s doing so well that his next appt. is in 2022 (2 years out). We are soooo relieved! ❤️ 👨🏽‍⚕️🥳

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When Truancy Programs Target Chronically Ill Kids, It’s Harassment

Due to his heart condition and cerebral palsy, my second-grader Magnusson tends to exceed the state’s limit for absences each school year. To protect him, we have a 504 plan and chronic illness form in place. His current school, however, decided to involve the state’s truancy program CUTS this year, and I had to meet with their representative yesterday.

Me: I don’t understand why you’re dragging me in here when you already have doctors’ notes and other documentation to prove that he’s chronically ill, not truant. He has excellent grades. This feels like harassment.

Man from CUTS: Well, we do this so to make you aware of the importance of attendance and aware that your child can get cited when he’s older.

Me: You do realize that we can’t prevent sickness due to his medical condition, right? Is your goal to stress us out? Is he supposed to magically heal himself in light of this information? And are you saying that when he’s older and misses school due to heart surgery, you plan to charge or fine him? Should I get a lawyer now?

Man from CUTS: [dumbfounded look]

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And just like that, we have a 10 year old! 👦🏼🎂🥳 The doctors feared our Heart Hero wouldn’t last a day, and now Magnusson is still going strong an decade later! 😁🌟❤️

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GREAT NEWS for my heart hero Magnusson this CHD Awareness Week 2018!!! His heart and valves look perfect and are functioning well. We were a bit worried because of the number of viral/bacterial infections he’s had this winter, but that’s just par for the course with a heart warrior. Dr. Rhee said he should be all good for at least another 2 years!!! So happy I could cry! ♥️🎉🎉🎉♥️

P.S. Can you believe this boy is already turning 8?! I’m going to have to change the name of those blog from “World’s Strongest Toddler” to “Boy.” I suppose it’s long overdue.

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After years of fear, Magnus suddenly started swimming today! This event is huge for us, as he's had three open-heart surgeries and has hypotonic cerebral palsy. We've been working with him all summer. He humored me and did a quick demo I could share. 👱🏻🏊🏼😍

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Saturday silliness 🎸 #rockstar #superhero #supermags #magscoonley

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Fake Mustache Day: one of the few events for which this mama was well prepared! 😜👍🏼 l

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Do you wanna chalk a snowman? #olaf #chalkart #magscoonley

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Mended Little Hearts has supported us through every one of Magnusson’s hospital visits. Each year, we participate in their virtual run during CHD Awareness Week so they can keep comforting heart families like mine. This year, we created a team you can join: GET MOVING FOR MAGS!

Click the link to join our team ($25 donation), and then you have the entire week of Feb. 7-14 to walk/jog/run 10K (6.2 miles).

From MLH: “Register for the Roar ‘N Run 2016 virtual race, and walk, jog or run your way to better heart health. Participants get the satisfaction of knowing they are improving their health AND supporting Mended Little Heart families at the same time! One of the important programs this event supports is our Bravery Bag Program for families with kids in the hospital. Registrants can choose their distance: 5K, 10K, 13.1 miles or 26.2 miles and then complete their mileage during CHD Awareness Week, February 7-14. Registration is only $25 for adults and $15 for kids 16 and under. Shirts are also available in many sizes.”

Thank you from the bottom of Magnusson’s mended little heart!

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Darth Magnus has gone to the dark side. #darthmaul #StarWarsChristmas #starwars #magscoonley

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Look who lost his first tooth yesterday. #magscoonley #1sttoothfairyvisit