Team Double Trouble Needs Help

Beckwith-Wiedemann Syndrome

I am pretty cool and collected when it comes to the twins and their many doctor visits. I had a lot of doctor visits when I was a kid and everything was always fine. Sometimes I wonder why we bother with all these inconvenient appointments because everything is clearly fine.

So, you can imagine I felt rather blind-sided today when everything wasn’t fine.

As I have mentioned before, the boys and I have Beckwith-Wiedemann Syndrome. It’s usually nothing more than a story I like to tell at parties. (Tongue surgery is a real ice breaker, let me tell you what!) But, today it showed some of its nasty side.

Robert is starting to show signs of having a hemihypertrophy. His left leg and the left side of his face are a little longer and fuller than the right side. He’s not to the point of auditioning for Elephant Man on Broadway, but it is starting to affect his development. I’ve never tried, but I imagine trying to run or ride a bike with one leg bigger than the other is rather difficult and an epic pain in the butt. So, we need to make my FAVORITE 800 mile round-trip journey to the Mott Children’s Hospital in September to see what can be done about that.

I look forward to navigating the U of M hospital and surrounding areas during college football season about as much as I look forward to a root canal performed by Orin Scrivello, DDS.


And because it’s gotta pour when I am outside without an umbrella, there’s more. Both of the boys, it has been determined, need to have their tongues re-evaluated because it looks like there will be more surgeries in store for that. And more 12 hour road trips of doom for me.

We aren’t done yet! To put the cherry on this sundae, we have a 16 year old Jeep that looks at us funny when we try to run it for more than 20 minutes at a time and a bank account that, were it possible for Wells Fargo to calculate such things in its online banking system, would print statements saying it contained nothing but dryer lint. So, we need a little help. The medical expenses themselves will be covered, but travel costs, food, and lodging are things we will need but cannot afford. (Yay, economy!) So, if you have a couple extra bucks, consider helping out the boys. We have a Chip-in page and we’re currently 1/3 of the way to being able to afford a rental car, gas, food, and basic lodging for a couple days so the kids can have consultation appointments with a cranio-facial surgeon and some fancy-pants geneticist who has a lot of letters after her name that I don’t understand.

If you would like, visit our Chip-in Page and donate to the twins. (I can’t even describe the overwhelming thankfulness I feel to all the people who are helping us. You really are angels. I will never forget this. Thank YOU.)

Or, if you are a little skeptical about this (I understand. There are shady people on the Intertubes. I would be cautious with my cash, too.) please consider donating to the Beckwith-Wiedemann Children’s Foundation to help kids like mine.




6 thoughts on “Team Double Trouble Needs Help

  1. I remember reading that the Ronald Mcdonald foundation has very low-cost housing near hospitals, for people trying to stay with their kids, or who need to take their kids to the hospital.
    Hopefully eveything turns out well with your boys

  2. I don’t understand. You don’t have enough money to afford a very necessary trip downstate for your children, but you somehow can afford internet, an internet serviced cell phone(which I can very easily assume is upwards of 100+ per month), cable television, etc. That truly does not make much sense to a person that chooses to save money by living without those unnecessary expenses and still struggles to pay the bills.

    1. At the risk of “feeding the troll”, I will indulge you on this.

      My husband does most of his work and job-hunting on the internet. It’s rather crucial for us to have it so he can look for jobs without driving 40+ miles daily to go to the nearest job-search place. (Michigan Works.) I do most of my class work online as well. We can’t afford to drive in to town every day for classes so, 90% of my current degree was obtained through internet classes. It is the cheapest available internet access plan available, for your information.

      Yes, we do have internet-capable cell phones. We got them BEFORE the economy took a dump on us. We’re in a contract. So, may as well use them while we can/have to.

      We don’t have cable TV, but thanks for playing.

      I am sorry you are struggling as well. I hope you never have to be faced with sick kids, financial struggles, the guilt of having to ask friends and strangers for help, AND people chastising your “extravagant” lifestyle in the middle of all of it.

  3. Aye, you’re an idiot! MOST folks dont have a land line anymore & you commented that You are a person that saves money w/o those expenses, ill make the assumption that you are online at the library…WHO can live w/o a telephone? You couldnt find a payphone these days if your life depended on it..You suck & your penname is right on so: ‘Justshutupalready’ and

    if you dont want to be involved, then go away..

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