Category: Family Synapse

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ipad Strikes Again

Aidan came home from school with a new button on his ipad -“I have a warrant for your arrest.” I’m wondering if in these hard economic times the police department has decided to collaborate with the education department. It’s apparently never too early for our youth to get some life skills and job training. So, the next time a police officer detains you, ask yourself these questions, “Is he 10, using a wheelchair, and trying...

1

Miles for Miles

Having been inspired by Team Powerthirst and making his health a priority, Garreth has decided to run his first 5k for Miles. On June 25th he’s running in the Bobcat Bolt in Durham. Garreth has really taken to running and is hoping to do a half marathon with my sister this fall. I’m insanely proud of him and very moved that he’s chosen to pay it forward in this way. So here are some options...

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More on Miles

Here’s one thing that really struck me from Miles’ mom. She found out she was pregnant while she was at the hospital with Miles. She had to go to the teen center to tell her husband, because that’s where the video games are and it’s a good place to take a break in the evening. An event that would most likely take place at home or perhaps out at a celebratory dinner, takes place at...

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Ride for Miles

A brilliant and beautiful advocate for people with disabilities once said, upon having a specific need met, “Let’s not get complacent. There are plenty of other people out there with this same need, a need that can’t be met through social agencies nor government, but by people getting involved in each others lives.” Or something like that. I said it here, and I get to misquote myself. So now it’s time to rally again and...

4

ereaders

I’m drinking the Kool Aid again, this time the good stuff. I have 2 friends who are big readers and who are not such techno-nerds that they would simply run out and buy the latest gadgets for no reason. That being said, they both love their Kindle and Nook (see the equal opportunity love). Liam and I are both people who have mini-panic attacks if we don’t have book options available immediately. When other people...

4

Funny Story

So I have Aidan’s ipad programmed to say “I’d like to choose a drink please.” When he touches that button it switches to a page where he can choose a drink. A few weeks ago I was helping him show off this skill to his grandparents. When he touched the button it said, “Give me a drink now. No questions.” Hmmmm….I’d say big brother had been messing with the ipad. I left it that way...

3

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...

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Medical Records

Oi vey this is a loaded one. There is so much more to doctor’s appointments than just the visit and it can be done well, or not so much.  I always ask for the doctor’s note and I know which offices will send it and which will require a follow up phone call.  I personally think that specialists should automatically send them out. We, as parents or patients, are the ones going to all the...