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@magscoonley
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! ❤️ 👨🏽⚕️🥳
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! 😁🌟❤️
Why CHD Awareness is So Important
Most people don’t know much about Congenital Heart Defects (CHDs), and until four years ago CHD wasn’t in my vocabulary either. Now I’m a heart mom 24/7.
Today kicks off CHD Awareness Week 2014. I’m wearing red for my “1 in 100” son Magnusson. Between Mags’s birthday on the 28th and CHD Awareness, February is our month.
This week, we’ll be raising awareness by making a special video for TinySuperheroes, participating in the Mended Little Hearts Roar ‘N Run 13.1K, doing a photo shoot for the Rock Your Scar contest, and more. I think many people have a misconception of what awareness is, and Lance Armstrong’s charity fraud didn’t help. Knowledge is power. It can save lives and increase chances for survival. I wish someone had made me aware of CHDs before Mags was born. I had no clue back then, and I’ll always wonder if things might have turned out a bit better had we only known. I was completely unaware of Mags’s condition and the warning signs of CHD. I didn’t know which questions to ask during my 20-week ultrasound, when they found a “marker” on his heart but thought it was “probably nothing” and didn’t follow up with a fetal echocardiogram. I didn’t know not to let my labor drag on for 40 hours—I should have requested a c-section instead (ironically, I didn’t want a scar). And I didn’t know to request a pulse oximetry screening, which could have alerted us to his heart condition hours sooner, before he lost significant oxygen, turned blue, and developed Hypotonic Cerebral Palsy.
When Mags was born, I spent about half an hour with him before the nurses noticed his irregular heartbeat and whisked him away for testing. A few hours later, a nurse informed us that his heart was enlarged. Before he even had a name, they airlifted him to St. Joseph’s Hospital in downtown Phoenix. We were in total shock, and the grave looks on the doctors’ faces told us we needed a miracle. Later that day, we discovered that he was born with a rare CHD. A sub-aortic stenosis (extra tissue below the aortic valve) prevented the blood from leaving the left ventricle and thickened it. Dr. Cleveland performed open-heart surgery on Mags’s 3rd day of life. During surgery, he had to remove the aortic valve along with the excess tissue and replace it with a donor valve. Despite some initial issues getting Magnusson to eat, he recovered extremely well. In fact, his rapid growth astounded doctors—his height and weight were regularly beyond the 90% for his age. By 8 months old, Mags required a second surgery, a Ross Procedure, followed by a third surgery at Phoenix Children’s Hospital shortly after his 3rd birthday. We got lucky, and we are thankful every single day for our strong little heart hero.
Mags is alive today thanks to CHD awareness and research. Technological advances save lives. In fact, Mags might be able to skip his next surgery thanks to a fairly new device called a melody valve. When his pulmonary valve starts to narrow, they can insert the melody valve inside it to hold it open.
Hopefully, you have a better idea of why awareness is important. It’s not just about “Yeah, I know CHD exists.” It’s about prevention, preparedness, and research.
I invite you to help us spread awareness this week. Educate yourself about CHD, learn the five questions to ask during a 20-week ultrasound, or donate to a wonderful organization like MendedLittleHearts.org. Thank you from the bottom of Mags’s mended little heart!
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]
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.
President-Elect Trump, You Owe Us an Apology
Trump’s mockery of a disabled reporter hasn’t been an easy thing for me to stomach, as both Magnusson and I struggle with disabilities. The ableism we face from others–even “friends”–is bad enough, but outright mockery and then denial of that mockery is simply disgusting. When Trump mocked Serge Kovaleski, he mocked me. He mocked my innocent little son with cerebral palsy. Trump needs to own up to his horrific error in judgement and apologize to the 20% of us with disabilities. We deserve at least that much. TheMighty.com has featured many people with disabilities speaking up, but I was extra glad to see that an Arizona reporter wrote this opinion piece on it. http://www.azcentral.com/story/opinion/op-ed/ej-montini/2017/01/10/montini-donald-trump-meryl-streep-golden-globes/96381830/
Strep throat turned my sweet Magnus into an Angry Bird! #angrybirdsmovie #red #redbird #angrybirds #magscoonley #magnus #magnusson #strepthroatsucks
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. 👱🏻🏊🏼😍
Saturday silliness 🎸 #rockstar #superhero #supermags #magscoonley
Fake Mustache Day: one of the few events for which this mama was well prepared! 😜👍🏼 l
Magnusson's spring picture 😍⚾️📚
Mema & Mags exploring the Sonoran Desert. Roadrunners, rattlesnakes, and gila monsters--oh my! 🌵🦂 (at White Tank Mountain Regional Park)
Magnusson's description of his painting 😆🎨#magscoonley #art #painting #acrylics #hideandgoseek #artist #kidartrocks
#1 Cubs fan #magscoonley #gocubsgo #gocubsgo⚾️🐻 #chicagocubs #springtraining #springtraining2016
Me and my Bat-Mags on his 6th birthday ❤️😻🎉
BatMags is birthday party ready! T minus two days and counting. (Apparently, his weakness is chocolate ice cream. Shhh! Don't tell.) #batman #batmags #darkknight #capedcrusader #birthdayboy #partyready #magscoonley
Why CHD Awareness is So Important
Most people don’t know much about Congenital Heart Defects (CHDs), and until four years ago CHD wasn’t in my vocabulary either. Now I’m a heart mom 24/7.
Today kicks off CHD Awareness Week 2014. I’m wearing red for my “1 in 100” son Magnusson. Between Mags’s birthday on the 28th and CHD Awareness, February is our month.
This week, we’ll be raising awareness by making a special video for TinySuperheroes, participating in the Mended Little Hearts Roar ‘N Run 13.1K, doing a photo shoot for the Rock Your Scar contest, and more. I think many people have a misconception of what awareness is, and Lance Armstrong’s charity fraud didn’t help. Knowledge is power. It can save lives and increase chances for survival. I wish someone had made me aware of CHDs before Mags was born. I had no clue back then, and I’ll always wonder if things might have turned out a bit better had we only known. I was completely unaware of Mags’s condition and the warning signs of CHD. I didn’t know which questions to ask during my 20-week ultrasound, when they found a “marker” on his heart but thought it was “probably nothing” and didn’t follow up with a fetal echocardiogram. I didn’t know not to let my labor drag on for 40 hours—I should have requested a c-section instead (ironically, I didn’t want a scar). And I didn’t know to request a pulse oximetry screening, which could have alerted us to his heart condition hours sooner, before he lost significant oxygen, turned blue, and developed Hypotonic Cerebral Palsy.
When Mags was born, I spent about half an hour with him before the nurses noticed his irregular heartbeat and whisked him away for testing. A few hours later, a nurse informed us that his heart was enlarged. Before he even had a name, they airlifted him to St. Joseph’s Hospital in downtown Phoenix. We were in total shock, and the grave looks on the doctors’ faces told us we needed a miracle. Later that day, we discovered that he was born with a rare CHD. A sub-aortic stenosis (extra tissue below the aortic valve) prevented the blood from leaving the left ventricle and thickened it. Dr. Cleveland performed open-heart surgery on Mags’s 3rd day of life. During surgery, he had to remove the aortic valve along with the excess tissue and replace it with a donor valve. Despite some initial issues getting Magnusson to eat, he recovered extremely well. In fact, his rapid growth astounded doctors—his height and weight were regularly beyond the 90% for his age. By 8 months old, Mags required a second surgery, a Ross Procedure, followed by a third surgery at Phoenix Children’s Hospital shortly after his 3rd birthday. We got lucky, and we are thankful every single day for our strong little heart hero.
Mags is alive today thanks to CHD awareness and research. Technological advances save lives. In fact, Mags might be able to skip his next surgery thanks to a fairly new device called a melody valve. When his pulmonary valve starts to narrow, they can insert the melody valve inside it to hold it open.
Hopefully, you have a better idea of why awareness is important. It’s not just about “Yeah, I know CHD exists.” It’s about prevention, preparedness, and research.
I invite you to help us spread awareness this week. Educate yourself about CHD, learn the five questions to ask during a 20-week ultrasound, or donate to a wonderful organization like MendedLittleHearts.org. Thank you from the bottom of Mags’s mended little heart!