Tagged: health

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In the Beginning – Part Three

Update Week 3 from my sister Becca We finally have some good news! Aidan may have a transiently elevated level of an enzyme (tyrosenemia) which is treatable with Vitamin C and could be reversible. He was started on Vitamin C on Monday and they are going to take a level on Friday.(This did end up bringing his levels to normal but had nothing to do with the big picture). They don’t know if it is...

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Doctor vs. Nurse

So Aidan did a face plant this weekend and knocked one tooth out and one tooth up. This all happened while I was at a speaking engagement so Garreth did the whole Emergency Department visit on his own. Here’s what we learned. We need a visible, ready to grab one page medical history for Aidan. I tend to be his walking medical record and I’m seldom away from him…but still. Aidan has been a great...

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Yale in Review – Part 2

My last point for the Yale nurses came directly from Team Aidan’s own Dr. John Morrison’s promo video: Be the navigator. As I was preparing this presentation, I realized we have lots of navigators on S.S.Aidan and we need them all. That’s why we also need one captain (or two people acting as a unified force). We have to take in wisdom not only from the medical world, but the school and community world as...

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Little Tidbits

A special shout out to Aidan’s fan club at Yale. Here’s an interesting perspective on some medical issues. First, genetic testing. What a hot button topic laden with emotion. I believe every prospective parent or pregnant woman should have access to accurate information. I also believe they should all have a safe place to voice their concerns. That being said, no one lives life without challenges of some sorts. This blog was birthed out of...

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Doctor’s Appointment

I went to my very own doctor’s appointment yesterday for a regular eye exam which I haven’t had in over 5 years. I had to turn off my automatic responses to questions and actually THINK!(you may collectively gasp) Me? Hmmm…allergies? Nope. Surgeries or illness? Central line and g-tube, no wait, None. Other issues? Umm…I count seizures as if I’m on Sesame Street? Is that an issue? They had to dilate my eyes which I’ve never...

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Strange Paradox

I rarely get sick, and when I do I just keep trucking. This is the 3rd year in a row that I’ve gotten sick during VBS week. I get a sore throat, cold, and last year a whomping fever. I had to listen to my own words today as I was teaching the kids about health care, or rather the lack thereof, in Africa. I was telling them that simple illnesses can be quite serious...

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Thankful Thursday

Today I’m thankful for Garreth’s health. For as long as we’ve been on a medical journey with Aidan, we’ve been on one with Garreth as well. The similarities have been the lack of solutions and a plethora of medical professionals. The differences have been that while I’ve been intensely engaged with Aidan’s medical world, I’ve been too exhausted to engage in Garreth’s. Garreth is amazing and wonderful in many ways, and (notice I didn’t say...

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Drinking the Kool-Aid

So we went to the major Children’s Hospital for a 75th opinion on Aidan’s questionable seizures. I have to say it was one of the best doctor’s appointments ever, as far as medical information is concerned. He had highlighted other doctors’ notes and read pieces back to me to check for accuracy. Sounds like a waste of time for the un-initiated. Here’s the thing, there are errors in Aidan’s medical records so this was really...

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Thankful Thursday

Today I’m thankful for the numerous doctors, nurses, and administrative staff that have been part of Aidan’s team. We’ve had mostly great experiences and I’ve heard enough horrible stories to know that we’re very lucky. So, Dr. Morrison is not part of Aidan’s medical team but he is part of Team Aidan as a Powerthirster. Ok, so I realize this is a PR clip but I’m going to trust the sincerity of it. Here’s what...

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Second Opinions

Please please please make it easy for us to get a second opinion. It’s not at all an insult to your experience or intelligence. We, as parents, have to believe we’ve done everything we can for our child. You have our medical records and we very well may come back to you for further treatment. When you give me a litany of your experience or worse, make cracks about another doctor’s experience, it’s not professional...