Little's Life

Little's Life

Monday, April 23, 2012

That big scary clown

isn't so scary anymore.  In fact, I'm beginning to like him.

Little and I headed off to Nationwide Children's Hospital in Columbus, OH last week to meet with Dr. Mendell and his team.  Our goal was to get Little into their database for upcoming clinical trials.  Mission accomplished plus he's been enrolled in their continuing research project which means yearly trips back to see them.  That is awesome for 2 reasons: 1.  The research project is covered by the MDA so no matter our insurance situation over the years, we'll have 1 clinic visit each year that includes neurology, pulminology, & cardiology totally taken care of!  2. We have family near NCH so we'll get to take turns seeing all of them!  This trip we got to see Mister's cousins, BJ & Tiffany and their 3 tots (1 of whom we'd never met since he's only 4 months old ~ and gorgeous)

We still have 2 (soon to be 3) of Mister's other cousins nearby and a whole slew of relatives on my mom's side that I've never met.  Side story - when I was about 21, my mom found her bio dad on the internet.  Turns out he's Jewish and that is why I have this crazy rat's nest on my head.  I'm the only one in my family with curly hair and since finding out it is due to Hebrew heritage, I have dubbed it my jewfro. So, some of those long lost relatives live in the Columbus area and hopefully I will be meeting them in the coming years.

We met with 6 different doctors and clinic workers and none of them had anything new to tell me.  But that's what I expected.  I dove into DMD education as soon as it was mentioned as a possible dx for Little so there's not much left for these docs to tell me about short of new treatments in the works.  Ew, Andrew is really screeching from his crib.  Guess nap time is over.  Ok, nuggets and Word World ought to hold him long enough to finish this.  So speaking of new treatments, I did get to learn a little more about exon skipping and which one will work for Little.  Another DMD mom, Stacey found this great website with illustrations that are leaps and bounds past my train scribbles from Building a Bridge and I'll be adding that here soon along with what I learned from Dr Mendell.

We were privileged to stay in the Ronald McDonald House, right across the street from the hospital.  It. Was. Awesome.  Right as we got there, the OSU hockey team arrived with about a hundred stuffed animals for the children in the house to pick from.  Little wasted no time snagging the biggest one and posing for pictures.

Seeing as how those men are Buckeyes, Mister was less than thrilled about this.  Little, however, thought it was fantastic.

R McD House is really an amazing organization.  I only stayed 2 nights and got to have my child with me, but I can see what a huge blessing it must be for parents who are in it for the long haul with critical munchkins.  There are toy rooms on every floor, a library with books the children can keep, 2 laundry rooms, 8 fully functioning kitchens, a computer lab.......and so much more.  Little's favorite room was the elevator, followed closely by the 3rd floor toy room (because it had a Thomas the Train table).  We found this gargantuan in the library:

Plus - R McD House feeds you!  All 3 meals, every day.  They have an incredible team of volunteers!  I will be adding this organization to my list of groups to fund raise for in the near future.

Oh, back up.  On the drive there, I was about 1.5 hrs in (of the nearly 7 hours) and my vision went wonky in my right eye.  Quite a few of you already know where I'm going with this, I bet.  I got a sinking feeling in my stomach and sure enough, about 10 minutes later, my left eye filled with snow and portions of my left wrist and hand went numb.  I started to panic a little.  My chest got tight and I got really hot - I could NOT drive all the way to NCH with a migraine!  I prayed.  Hard.  I straight out begged God to take the impending migraine from me and to not let anything happen that would endanger us on our drive.  And He did.  For the first time ever, my migraine ended with only the aura.  God continues to show me His grace.  I hope that you all take the time to notice what He's doing for you, too, and remember that He is listening and He is ready to take care of you, if you'll only ask.

Another super fun thing that happened last week was the arrival of the book!  Finally, my copy of Saving Our Sons & Daughters II, the book I collaborated on last fall, arrived!

I read the entire thing in one sitting and cried my eyes out.  It's crazy to hear someone else's story and know EXACTLY what they were feeling.  Most of the stories are uplifting and meant to inspire, my tears were just because the emotions related to learning my son has DMD are still very new and raw.  We've only known about this for 6 months.  But the book is for sale and the proceeds for the ones that I sell personally go directly into Little's Medical Fund - there are links here in this post, on my fb page, and on the right hand side of this page.  So go buy it!!!!

Meet today's Little's League team member, Katie!

1 comment:

  1. I'm so happy you loved the RMH. In college I spent a lot of time at the RMH in Philadelphia volunteering and doing holiday events. RHM was/is my sorority's philanthropy and it was such a great cause to be involved with :).