So Much Swag

There are SO many ways to support Andrew and Duchenne research!  I have just been so blessed with people in my life who want to help Little.  I'll go in timeline order.

1.  Remember that little book idea I ran by you all?  Well it's HERE!!!!  Saving Our Sons & Daughters II, the collaborative book by over 40 Duchenne family members is finally up for sale on Amazon! 



I wrote a piece back in October that means quite a bit to me.  I'd love for you all to read it, so buy the book!!!!  Click on the book to purchase it or click on the one on the right hand side of the page. 


2.  A sweet ma'am named Jennifer Hodges runs Harper's Jubilee, an Etsy shop where she sells some SUPER cute digital art prints.  Jennifer blew me away last night by asking me if she could design a few prints to sell on Andrew's behalf to support his medical fund and the Muscular Dystrophy Association's Duchenne Initiative.  How much does she rock?!?! 
 








Click on the link to her shop above and pick the print you'd like to order.  Then you get to pick the colors she makes it in!!!  So you can make it coordinate with any room in your home or office that you'd like to hang it in.  How great is that?  What an awesome, awesome way to support Little!

3.  Next saturday, March 10, is that Muscular Dystrophy Association's Muscle Walk that I's been bugging ya'll about on FB.  It starts at 10 a.m. at Murray Park off Rebsamen Road - come out and see us!  We'll be there all day (Little and weather permitting) showing our appreciation to this fantastic organization that takes care of Andrew and so many others who have been afflicted with neuromuscular disease.  Can't make it out to the park?  No problem, you can donate here online! Little's League will be taking donations until the end of the day on March 10th.  Did you know it takes 13 muscles to smile?  So what about a dollar for each of those muscles involved?  $13 may not sound like much money, but if even one quarter of you who are reading this post donates that amount, we could make a real contribution to MDA's duchenne research!  You can add your dollars here: Little's League  Every cent helps!

4.  On Thursday, March 15, students in the Montgomery Central school district are putting on thier annual talent show for charity.  This year's cause?  You guessed it - Duchenne Muscular Dystrophy.  Andrew and I have been invited to attend and will be presented with a check to put towards DMD research.  The amount we receive is dependant upon how much those who attend give at the door (donations in lieu of a flat admission charge).  SO COME OUT to Montgomery Central Middle School on March 15, at 6:00 pm and watch a fun and entertaining group of high schoolers put on a show benefitting Andrew and Duchenne!  High schoolers doing for others?  That in itself is worthy of a donation!  :) http://www.facebook.com/#!/events/396723517011241/ 

5.  I'm willing to order a second batch of tees if anyone still wants one.  Just let me know what sizes you want!  $12 per shirt plus one $5 fee if I will need to mail yours to you.   And as always, you can order any of the products up for sale on www.cafepress.com/GeronimoGifts

So there you have 5 fantastic ways to put your extra change to work for Andrew and other boys suffering from this horrendous disease;  a book, a tee shirt, art prints, and more - all things you can purchase to help support Andrew and Duchenne research.  Let's high five Duchenne....in the face...with a chair.

A Day in the Life

Thought I'd show you what a typical day in Little Land is like.  Well......almost typical.  Mister had half the day off work and we went to dinner, two things that RARELY happen.  But the rest of the day was pretty much business as usual.  So here is a photographical and video recorded chronological diary of Friday, February 17, 2012.

7:20 a.m. - Tot wakes up.



7:22 a.m. - Tot decides it's ok for me to come in the room now.



7:30 a.m. - The 1st of many screeching diaper changes.

8:15 a.m. - Breakfast!









8:26 a.m. - Wash your hands!

8:45 a.m. - Time for a round of golf and a good read.



9:06 a.m. - Discovered a new game.



9:15 a.m. - Breakfast part II with Dad.



10:10 a.m. - Morning chores and hygiene.




11:24 - Off to Babies R Us to find Flower a birthday present.


12:52 - Arrive home thoroughly ticked off that lunch is late



12:56 - Apparently not what he wanted for today's entree.




12:58 - Found a more suitable meal (don't worry, he did eventually eat more than just Saltines).



1:10 - Angry once again, this time it is because his fruit pouch was empty.



1:20 - Still irate. Getting a diaper change and a nap.

3:00 - Wake from nap and help Dad attach a new passenger side mirror to Mama's car. No, Mama was not the one who broke it.

4:26 - Helping Dad unload the dishwasher before dinner.



5:38 - Belated valentine's dinner




5:48 - Things start sliding downhill and he makes me eat my salad over his head.
*this picture is gone forever.........I do not know where it went, or it left me, but it has disappeared.

6:25 - Back home with our uneaten meals in To Go boxes since Little decided eating in a restaurant wasn't in his plan.


6:40 - Finally content enough to play with his new puzzle mat.

6:55 - Learns a new word from Dad.



7:23 - Off to bed.

And such is life with a 2 year old.  I'm tired.

February 11, 2007

5 years ago today, God took Russell home.


Russell was, for those of you who don't know my life before this blog, one of Mister's and my closest friends when we were living in Alaska.  He was more than a friend, he was like our brother.  He is the man our son is named after.  He had his own room at our house, even though he rented an apartment within walking distance, and spent about every waking moment on our couch (and in my face).


See............Russell was truly, madly, deeply in love with me.  Yup, that's right.  (Didn't think I was wise to it, did you Russell?)  Didn't make any difference to Mister, he knew Russ didn't stand a chance - I wasn't going anywhere - and I never will.  In fact, I think Mister was amused by it.  He got to watch Russell make an arse out of himself on a daily basis either to me or at work.



 Russell was hilarious, but not on purpose.  He was very selfish, very moody, and very demanding.  He was like a woman with perpetual PMS.  In fact, we called him Negative Nancy (usually just Nancy), Pissy Patty, and Sally.  He sounds just awful, doesn't he?  Well he wasn't.  Those female qualities just made him more ridiculous.







































What a hot mess.

Never a dull moment when he was around.  Lots of arguing, but more laughing.  Any of you who knew Russell know exactly what I mean, but reading this back to myself - it really sounds terrible.

HAHAHAHA.  Once, he needed some furnishings for his apartment and didn't want to spend any money, didn't want to go by himself, and didn't want to change his clothes first.  So he dragged me down the street to Fred Meyer's (a northern version of Wal-Mart) wearing a long sleeved Steelers shirt, Michigan yellow sweat shorts, and green Army socks stretched up to his knees to see how cheaply he could score some plastic dishes.  It was mortifying.  But I went along bc as horrific as his outfit was, it was even more histerical to see the looks on everyone's faces as we passed by.  That's what I mean by his frusterating qualities also being what made him so great.  I am still haunted by those shorts.  In fact here they are, in a teeny tiny picture from when we went deep see halibut fishing:



Through Russell's passing, I gained a name for my son, a sister named Stephanie, and an extra set of grandparents for Little.  We are lucky to have had Russell for those 2 short years.  In that amount of time, he was able to weasel his way into our hearts ant cling on for dear life like a tick on the end of a sprinting dog's tail.

And now, seeing as how it's the 5 year anniversary of that fateful day, I feel the need to share your true spirit with the world.  So here it is, Pants Off Dance Off.



You're welcome.

Baby Steps

Little Bit was referred to early intervention services a year ago this month.  This was before we knew about his Duchenne, before we knew he had anything life long or life threatening.  In the past year of therapy, Little has just turned into an entirely different being.  He couldn't do anything by himself other than roll over.  There was no crawling, to pushing himself up to sitting, no cruising, no bearing weight AT ALL on his legs, and no voluntary reaching of his arms over his head.  Had our 1 year assessment with Kentucky 1st Steps this morning and all 4 of us were just so so so so proud of how far he's come.  He hit ALL of his 1st year goals!  I was skeptical that he'd hit the big ones, like walking and drinking from a straw (and I think the therapists were, too)  in just a year, but Little One worked his heiney off and blew us all away.  He's definitely deserving of the 3 week therapy break he'll get starting at the end of the month.  This tiny boy has been so brave, so determined.  He has had to work 10 times harder than a tot without muscular dystrophy to master even the slightest of motor skills.  Skills like holding his own bottle - most of you take that skill for granted with your child.  You might even be a little bothered by him or her grabbing and holding onto the things in your hands like his/her life depends on it, but Andrew couldn't do that until he was about 14 months old.  Do you know that Little Face can't kneel?  Can't jump?  He can't even pull his own socks off.  That's how weak he is.  In church Sunday, he saw his friend, who I will call "Nugget" clasping her hands together during prayers. I didn't even realize he couldn't do that - it was so adorable watching him try.  There are just so many things Andrew cannot and will not ever be able to do.  But he can walk.  




He walked and walked and walked and walked.  I think he was at it for 20 minutes last night.








I was so proud.  Those were the longest walks he's ever taken!  But just as we were getting relieved and excited that he seems like he'll be able to walk down the hall to his room by himself one day, he collapsed.  Just crmbled to the floor as the muscles in his legs gave out.  Mister held him for a minute and let him rest then set him back up on his feet.  He instantly dropped to the floor again.  It was like a punch in the gut from the Duchenne Goblin.  Well, more like a dead leg, really.  Like "Haha!  Don't get too excited, I'm still heeeeeeeeeeeeeeere.  Don't forget about meeeeeee!"  I could see it in Mister's face as he held him - that realization that all of this progress is just masking the DMD, not curing it.  I hate seeing that in his eyes.  Mister doesn't like to talk about what's going to happen to Andrew, it's just too difficult for him to face right now.  So seeing him having no choice but to acknowledge it last night while cradling Andrew on the floor of the hallway was rough.  I wanted to cry, but I didn't want Mister to feel any worse.  It was just so bittersweet to see Little take his best walk ever, but completely wear out his muscles doing it.  I just kissed them both and thanked God for the time I have them.

I hate Duchenne.

On your 30th birthday

were you in a commercial that aired during the Super Bowl?  My brother was on his!!!!!!!!!!!!!!  And it was unexpected - so there he was just enjoying a birthday/Super Bowl party when all of a sudden his mug popped up on the screen.  I guess they "forgot" to tell the actors that the Hulu commercial they were shooting was being aired during the most sought after commercial slot of the year.  Here it is, he's the head on the right that responds to the head on the left who just spouted off a Southpark quote.



Sweet.

So the Little's Logo tees should be here any day!  Thank you to the 68 of you who ordered one (or 6 in some cases)!  Of the 68, there are still 23 of you who have not paid, so send that my way when you get a chance.  You can mail me a check or cash, use the donate button to you right and Paypal me the money, or give it to my mom.

OT G4 was here yesterday and she had to do a little assessment of where he is now vs where he was when we started therapy almost a year ago - leaps ahead! - but she thought it would be fun to glance at the speech section of the book, too.  Now this is super unofficial and just a broad overview of his speech capabilities (bc obvi an actual speech assessment would be way more in depth) but we were able to answer "yes" to all of the speech questions stretching through the very last day a 3 yr old would be 3!  (Umm, so that means a 3 yr old who would turn 4 tomorrow).  So Little has the speech abilities of AT LEAST a one-day-shy-of-4 year old.  That's where the book stops, lol.  I'm curious to know what a real speech evaluation would tell us.  According to Parenting Magazine, he's a genius.  And if it's printed in a magazine, it must be true. HAHAHA!  Really, it's just nice to be ahead of the game somewhere with Little.  He's just so far behind physically (and will be his whole life) that sometimes it's nice to know that he's excelling somewhere else.  He's one smart little cookie, that's for sure.