Homemade Tater Tot

February 11, 2007

2012-02-11T12:05:00.000-08:00

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

2012-02-08T16:15:00.000-08:00

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

2012-02-07T12:11:00.000-08:00

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.

I am......

2012-01-31T15:58:00.000-08:00

not a carrier. Little's geneticist's office called today and said my DMD test came in and is negative. So I do not have the defective dystrophin gene. Andrew has what they call a random mutation in his genes that caused him to have Duchenne. It's rare, but it does happen. Something like 33% of DMD boys are born to non-carrier moms. I'm stunned, honestly. I fully expected the nurse to tell me that they found the deletion on one of my exons. It would explain a few things in my family history. So ......huh? If I was a carrier, then I'd have a 50% chance of passing it along to any sons I had. Since I'm not, the odds drop significantly. Nurse told me that since my body has produced at least 1 egg that we know of (Little) that produced Duchenne in my son, that I have about a 15% chance of it happening again to any other son I may conceive. She suggested prenatal testing, I suggested not having anymore babies, lol. I'm almost 32. No thank you. I am not past the idea of adopting a toddler one day out of foster care if I decide I can't live with just 1 child, but no more babies.

I'm editing this to correct some misinformation the nurse gave me. Turns out, it doesn't give me about a 15% shot of creating another boy with DMD, it gives me AT LEAST that much chance. When you are not a genetic carrier of Duchenne, you are still a "germiline carrier" as in you produce eggs with it. A friend on facebook explained it like this:

Katherine - they have no way of knowing what the risk of having another child with duchenne is. If you're a germline carrier, which all of us who aren't DNA carriers are (meaning it's in our eggs) the question is just how many eggs. If the mutation happened early on in your egg development when you were a fetus, then a larger percentage will be affected. If it happened later during egg development, fewer are affected. I am a germline carrier ironically with 15% of my eggs affected - the only way to tell is via IVF with PGD. I think it's irresponsible of nurses/doctors/geneticists to quote risk percentages that they have no way of being accurate with. If you ever want to know about the PGD process, I'm happy to talk with you about it.

So I think it's ridiculous not to consider us carriers - because we still carry it! But the distinction is whether we carry it in our DNA or in some of our eggs. Aaaaaaaand back to the original post now.

So.........there's just more light shone on the thinking that God has a plan for this. God needs Little to have this disease for whatever reason. He needs me to have this child. It's humbling and complimentary all at once. I don't know what you have in store for us, or what You need us to carry out, Lord, but I pray that I do what You need. I pray that we allow ourselves to be guided in the way You see fit. I pray that we can bring other to You through our actions and our faith.

Coming to a 10 Fitness near you

2012-01-27T13:45:00.000-08:00

is a big ole flier (flyer?) of Andrew! I tried to upload it here, but when my computer crashed last month, I lost my Microsoft Office pack. I had to download some Abi program and I made the flier there and it won't translate to blogger. One day I'll buy some printer ink, print it out, then scan it over here. Process, I know. But if you are in central Arkansas, go to a 10 Fitness and check it out! And join the gym - 10 Fitness is kickA, it really is. Mister's uncle, Jacob, owns a bunch of them and he's pretty kickA, too. Plus his wife's name is Babsi. BABSI! How cool is that? Little has an Aunt Babsi! I bet you don't have an Aunt Babsi.

Now onto the Little's League shirts. Thanks again for that team name suggestion, Crystal - it couldn't be more perfect. MDA Lady loves it, PT H (now referred to as PT Heady since that's how Little pronounces her name - and while we're on the subject, OT J will now be referred to as OT G4. Yup, G4. That's how Andrew says her name. "Ok pway with G4!" G2 when she's upsetting him, G4 when she brings her big bag of toe-eeze {toys}) about cried when I told her, and my mom squealed. Mister gave it a "NICE." which is about as excited as he ever gets. So, well done, sis!

The t-shirts were ordered yesterday!!!! I'm waiting on the art department to send me a proof to finalize, then I will receive them about 10 days later. Great turn around time. I had a stroke in my left eye when I saw the total cost of production. I panicked for a few hours before I clicked the "complete purchase" button. I finally went and counted all the payments I've already received for the shirts and realized that I could take them to the bank before I checked out and then it wouldn't be as scary. So thank you to everyone who has already paid - you made it possible for me to pay the entire balance of the shirts without losing complete function of my bladder.

See, our goal (our, meaning mine and my mom's) was to sell 50 shirts then do a second batch if there was enough interest. Well.........our first order was for 139 shirts.
.

*legally obligated to plug the website I made the blinking 139 at, so here goes*
Image by Cool Text: Logo and Button Generator - Create Your Own Logo

That's almost three times as many as our goal!!!! I am so thrilled! Thank you all so so so much!!! More exclamation points!!!!!!!!!! Ya'll are helping to make Andrew's life a little easier than it would be otherwise. Thanks to you and the MDA office in Little Rock, we already have enough to be able to go meet with Dr. Mendell at Nationwide Children's Hospital in Columbus, OH. We were supposed to go yesterday, but had to reschedule bc we just didn't have the money. Now we do. It's sitting in Andrew's brand spankin' earmarked for Duchenne expenses medical account. What a relief! Dr Mendell is a specialist who runs clinical trials for Duchenne treatments. He's got one going right now based on exon skipping - really fascinating stuff and so promising - and one in the future that may help Andrew. We are supposed to meet with him and let him poke and prod my tiny boy and have him screened into the lab's database. That's just one example of how your donations will be used to help Andrew now and in the future. I really can't thank you all enough.

And I've already been asked to take a second order by some folks who were a bit late to the party and so that the people involved in that really cool thing that's happening later in March (that I mentioned in Nov that was supposed to happen in Jan but has now been moved to March ) could order one if they want. So if you missed the boat, don't worry, I'll take orders again soon.

My little brownie lover. :)

Little Rock MDA Muscle Walk 2012

2012-01-20T13:01:00.000-08:00

Time for the MDA

On Saturday, March 10, the Little Rock MDA office will be holding their annual Muscle Walk. This year I've decided to form a team on Andrew's behalf and try to raise some research money. It begins at 10:00 a.m. in Murray Park off Rebsamen Rd. I've got his team all registered, now I just need some members - (you). :)

It is free to join the team - there are no entry fees or registration fees or even a minimum donation.
What you do is click on this link -

http://walk.mda.org/find-a-walk

Then click on Little Rock, Arkansas and it will take you to our event. I can't link to it directly bc it won't let me log out and then you all would be on the site logged in as me. So once you are at the LR MDA Muscle Walk page, click on the link that says "Join existing team" on the right hand side of the page. I believe it is the 2nd one in the list. The next page it will open up will be the registration page. When it asks you which team you want to join, pick Little's League (thank you for the kickA team name, Crystal!). Follow the registration instructions as they pertain to you, obvi, then you will be asked to categorize yourself as a 5k Runner, Muscle Walker, or a Spirit Walker.

5K Runner - don't pick this one, the 5k has been cut from our event so that no one is excluded. There are so many people who are no longer able to compete in atheltic events that the event coordinators have opted not to have any at all.

Muscle Walker - pick this one if you are going to attend the event with us. This is the category that I registered in. This is the category that gets you Andrew's t-shirt for $10 instead of $12 (plug plug plug) since we'll be wearing them to the Muscle Walk.

Spirit Walker - pick this one if you want to help us raise funds and awareness or just donate some yourself but will not be physically attending the event. You can still help us out by sharing our page link, e-mailing friends and family, and trying to gather donations.

Then just finish out the last few clicks and pat yourself on the back - you just joined Little's League! You can direct people to our fundraising page by sharing this link Little's League Fundraising Page or you can direct people here to this blog.

The event is like a festival. There will be food, games, vendors, a DJ, and entertainment. At the very end, we all do a victory lap around the park that symbolizes all of the funds we've raised by working together.

I would love to raise as much money as possible for MDA, but even if we don't raise a dime, at least we will have raised awareness. Most people have never even heard the word Duchenne. I sure hadn't until June of last year when it was first mentioned as a possible diagnosis for Andrew. If people don't know this disease exists, then how will it ever be cured? So even if you can't help the Duchenne community out financially, help us out by spreading the word! Direct people here - to my facebook - or to MDA and PPMD websites. Just get the word Duchenne into people's ears so that one day enough people will be aware of it to really get research funded.

I hope you'll join Little's League and help us end Duchenne! AHEM, friends and family that I never get to see - you know I'll be in town and where I'll be, so it would be a great excuse for you to hop on over to Murray Park. You can catch up with me and Little and support us at the same time!!!!

Here's another link and way to contribute!
Katherine's MDA Muscle Walk page

2

2012-01-18T09:39:00.000-08:00

Little -

Today you are 2.

Today you are no longer a baby, but have become my little boy.

These past two years have been such a roller coaster. We've had days that I didn't want to end and some where I couldn't keep my eyes off the clock, waiting for bedtime.

Moments of fear, of sadness,

and moments of unbelievable joy.

You have taught me what it means to be brave, to be strong, and to be thankful.

You have brought me closer to God, and one day I hope to do the same for you. I am forever changed for the better because I have you.

Happy Birthday, my little man.

Mama loves you with all her heart.

And Happy Birthday to you, too, Peyton. I know your mama and daddy and brother and sister would give anything to watch you blow those 4 candles out on your cake today, but God was tired of waiting for His turn. We know you are in an eternal celebration, and we're so humbled to have been allowed to borrow you for as long as we did. So we'll light your birthday candle anyway, and praise God as we blow it out, that He ever gave you to us at all.

Happy Birthday, Peyton and Andrew.

Little's Logo

2012-01-11T20:04:00.000-08:00

Thank you so much to all 78 of you who voted for which design should be Little's official logo. And the winner is.......

So once that was down, I had to figure out what to put on the back. All along I had figured I'd write a scripture verse that I felt related to Little and the road he is facing. I sat there the other day, typing words like "scripture for strength" and "Bible verses for healing" and finding some great words, but nothing that really said "PICK ME! PICK ME!". And then it hit me out of nowhere - well, somewhere, but I don't know where. These 2 lyrics just popped into my head and made perfect sense. First, keep in mind my nickname for Andrew. Second, think of Duchenne and what it will do to his body and how much we will need God to get us through. Figure it out? No? Well here ya go:

Right?!?!?! I love it. Love it, love it, love it. I got so excited that I called my mom, who promptly burst into tears, which then made my tear ducts explode (which is a fairly normal occurrence for me - I cry like 12 times a day. Happy, sad, grateful, humble, empathetic, sympathetic, and sometimes just plain old pathetic tears) as I realized how relieved I was that someone besides myself liked it because it truly struck a nerve in me. In a good way, I mean. I crack every time I tell someone what I chose to put on the back. I am such a sap.

Here's the front of the shirt.

Now I made this particular one on my Cafepress store - www.cafepress.com/geronimogifts and it is there for purchase BUT if you buy directly from me, it will cost HALF as much as the one on my store site. This is because I am ordering in bulk from an online screen printer but Cafepress is a single order store with more t-shirt color options (so not just grey) and mulitple products (and not just t-shirts). I have more products there than just the Andrew shirt. For example;

Feel free to go check it out, I'll be adding more items with different designs soon and all the profits from my DMD merch go into Andrew's medical funds account.

The back of the shirt that I am bulk ordering will look just a bit different than what I have posted here. The font is slightly different and the t-shirt is a standard Gilden Heavy Weight Tee in that same ash grey color. So just a difference in font. They come in Adult S, M, L, XL, XXL, XXXL and Youth S, M, L. If you have a wee one like Andrew, you'll have to order a tot shirt off the cafepress store, just like I will have to for my son.

If you want one of these babies, just let me know! I am selling them for just $12.00 a piece and putting the profits into Andrew's medical account (like all other donations). If you are going to walk with us in the MDA Muscle Walk in Little Rock, AR on March 10, then you get your tee for $10.00! I'm going to set up Team Andrew on Monday and I'll let ya'll know how to join then. But if you want to get your order in before that, just let me know you'll be walking.

So $12 (or $10 if you're walking) to me or my mom (plus $5.00 if you don't live near one of us and we have to mail it to you) plus what size(s) you need. You can e-mail your order to me at LITTLEfeedback@hotmail.com (sorry I can't get it to work as a hyperlink) or leave me a comment on here or on facebook or call/text me at 501.I'mjustkiddingthere'snowwayI'mblastingmynumberontheinternet. heehee. But if you have my number, feel free to order that way. Be sure and leave me an e-mail address or number I can message back to with the address of where to mail your money if needed.

Also, some of you may have noticed the DONATE button on the right hand side of this blog. If you wish, you can just use PayPal and click on that button. Then message me to let me know you paid and what size you need and where I need to mail it if you don't live near me or my mom....and who you are, lol.

Please understand that these t-shirts are fundraisers. Duchenne makes for an expensive child, especially when his doctors are all located in other states. Seriously. Not one of them is in Kentucky. In fact one specialist who we are supposed to see at the end of this month is all the way in Columbus, OH. That's 15 hours worth of gas and 2 nights in a hotel. So if you feel inclined to pay more than $12.00....like, say, rounding it up to $15.....I wouldn't try to stop you. *insert big sheepish grin here* Or if you don't even want a t-shirt but would like to help Little, that would be greatly appreciated, too. Honestly, it's kind of embarrassing to be typing those words here, knowing you all are going to read them and realize that we do not have the riches of King Midas, but this is my little boy's life here and he's worth so much more than my pride. Please just know that I love you all so much for the support you've been showing us - emotionally, spiritually, financially, or just by taking the time out of your day to catch up with us by reading this blog. Poop, there go those tear ducts again.

Now who wants a t-shirt?

Tiny Dancer

2012-01-07T08:09:00.000-08:00

Peyton Pillows

2012-01-05T13:44:00.000-08:00

I love moments of realization. The big "Oooooooooooooohh, That's why that happened" ones. Well I had one while I was driving down the road a few weeks ago. Just came out of nowhere and brought me into a cold sweat. I literally stopped driving in the middle of the road. Good thing it was just before a red light - made me just look like the silly old lady that thinks she has to leave 8 car lengths between her vehicle and the one in front of her. Anyway, some of you may remember that Little was in no hurry to come out and meet me. If you feel like rereading the whole shebang, click here. Otherwise, here are the main points that get to my realization in the car:

I had to be induced at about 38.5 weeks because my blood pressure was rising. Induction started on a Saturday morning but by Sunday evening, after a Cervadil and 2 rounds of pitocin, Little Foot wasn't any closer to being born. Finally after some more drugs, interventions, and scary sounding machinery, Andrew came into the world a few minutes after midnight on January 18, 2010. Upon entry into the maternity ward that weekend, I thought my son's birthday would be January 16. I've often wondered why in the world I was in labor for 40 hours. I know inductions can take longer, but 40 hours??? Well, almost 2 years later, I finally know why. Andrew couldn't respond to medical interventions or he wouldn't have been born on Peyton's birthday. Just 10 minutes earlier - if just 1 of those procedures had worked - Little and Peanut wouldn't share a birthday. I still don't know exactly why the Lord chose to connect our 2 families in this way, but I know that He did it on purpose. I know that James, Tanya, and the Bulltots are supposed to be woven into my, Mister's and Andrew's lives. We have our sons' birthdays in common and one day we will both know the pain of losing them. I actually told Tanya that losing our boys is not something I ever wanted to have in common with her. I'm thankful - I'm very thankful - to have such a dear family so close to us and I can't help but wonder what else He has planned for this friendship.

I want to thank you all for thoughts and prayers over the last 5 weeks concerning Peyton. I want you to know that you have helped so much. I know the Lord has been listening and He has been comforting Peyton's family and carrying them through these last few weeks. James and Tanya are continuing to put one foot in front of the other and are adjusting to their day to day life without Peyton - they have said they are trying to find a new normal/routine. They've moved to a new home, the twins are back in school, and James is heading back to work soon. Tanya has been busy trying to keep things moving for the twins and getting them all settled into their new place. I'm asking ya'll to continue keeping them in your prayers. They are unpacking boxes, which forces them to sift through Peyton's belongings. I know that there will be items that Tanya or James will pick up out of those boxes and be knocked to the floor by a rush of grief and sadness. Pray that God will pick them back up again and that the storms pass quickly.

I went through my own stash of Peyton's things the day after the birthday revelation. I thought to myself that I was lucky to have these things that our sweet P once called his, yet I also felt like I didn't deserve them. I love Peyt, but he wasn't mine. I almost felt like I should give them back. I know that's silly, and I know Tanya wants Andrew to have them. In fact, just yesterday she asked me if I want the rest of Peyton's clothes (yes). Well in the drawer of clothes that are still too big, I found 3 sets of fleece pajamas. Here's Peyton in 2 of them -

They were still so soft, I wanted to hug them. So I did. Then I wished I could hug the twins. And then I thought, I bet they'd give anything to hug Peyton right now. I'd been wanting to do something for them for a while now, but I didn't have any idea what. Then as I looked at the pj's in my arms, I realized I had a hug for them right there. I decided to make those fleece tops into pillows. I call them Peyton Pillows.

I mailed 2 of them to Tanya to give to the twins, and I kept one for Little. I gave it to him on Christmas.

He loves it. He knows that is his pillow and when he wants it, he points to it and says "pleewoah?" I'm going to be a bit sad when he starts speaking like a normal adult one day.

I hope the Bulltots like them, too. I hope one day when they are older, that they appreciate having something of their baby brother's to physically hold on to. I know that I am glad to have Russell's ratty old Steelers shirt. I can't help but think of him when I wear it (not out in public, of course - hahaha) and it's a kind of comfort to me. I hope they feel the same way.

Oh, I should explain why I don't use their names or post their pictures - they're 6. They're babies, and they are not my babies - so it's not my right to plaster them up on the internet. So Bulltots or Bulltwins it is. I call them that offline as well - you can ask their mom. :)

****update: Tanya called tonight and said the twins sleep with the pillows every night. :) :) :) :) :)

2011 Becomes Past Tense

2011-12-31T11:46:00.000-08:00

January

February

March

April

May

June

July

August

September

October

November

December

Adios, 2011 - Come on in, 2012!!!! We are SO ready for you!

Hello Christmas....I mean Thursday, the 22nd

2011-12-23T08:14:00.000-08:00

So Mister and I decided at 9:00 last night to open up all of our presents. Not Little's, of course, he was in bed - but we're out of packages with our names on them. Heehee. Little can open his on Christmas Eve since we have church Christmas morning. I've never been one who could wait patiently for Christmas morning. It's not in my nature to wait til Christmas AND I BLAME MY PARENTS. Yep, Mom and Dad - my absolute inability to leave the gifts wrapped under the tree all the way to December 25th is all your fault. See, in my house growing up, the traditional Christmas morning didn't exist.

Ours was a house of torture every Dec. 25th. We were not allowed to wake up our parents. We were not allowed to touch anything under the tree. We were not allowed to dump our stockings. We were not allowed to spend all morning in our pj's basking in the after glow of shredded wrapping paper and new toy euphoria. Nope, we had to practically sit on our hands until Mom and Dad decided they were ready to head to the tree - always after showers, always after breakfast, always after noon (ok, that part might be a stretch - it was usually more like 10:00 a.m). There were literally HOURS of anticipation after we woke up. And if Christmas fell on a Sunday? Psssssssh - we practically had to wait til Monday to start.

Then finally - FINALLY - when Mom and Dad decided it was tree time we ran into it's needles and the blury and fury of present opening began! Wait, no - that's not how it happened, of course. Somebody, usually my brother, put on the santa hat and began handing out presents...one.......by.......one. 1 present to 1 person and everybody had to sit and watch and wait for that 1 person to get finished unwrapping their gift before the next person got a turn. And there were 5 of us, at a minimum, so present opening took fOrEvEr. And when it was my dad's turn? FORGET ABOUT IT. You better hope one of the presents you already opened was a book so you'd have a way to pass the 24 minutes it took him to pocket knife open every single piece of tape on his gift and slowly, neatly unfold the paper. Thanks a lot for teaching him that particularly agonizing trait, Grandpa. I have become an expert at wrapping his presents with just 3 small pieces of tape. So it was usually about 9 p.m. when we finished unwrapping gifts (ok, that might be a stretch, too).

So is it any wonder that I don't make it to Christmas now? Heck, we did better than last year. Last year we opened presents up as soon as they arrived in the mail! I just can't STAND IT to not open presents. I don't even care what's in them, I just need to set them free from their binding of tape and paper. It could be a box of cereal wrapped in newspaper and I would be ecstatic to open it up (yup, that's actually happened before - my dad again). Now don't get me wrong, my parents are not scrooges. They just discovered a way to gleefully and giddily torture and exasperate their children 1 day a year while at the same time creating hilarious (sarcasm font) holiday traditions and memories. My husband has picked up on this and finds it quite amusing to set my birthday presents out on the kitchen table for an hour or two a day before my birthday just to drive me crazy. He always puts them back away, though, because he knows if he forgets and leaves the house, then that wrapping paper will mysteriously vanish. He won't do it on Christmas, though, because he's almost as impatient about it as I am.

So here I am on Friday morning, December 23rd with no presents left to open. AND I LOVE IT. I will never ever ever ever ever been a show like veggie tales....oh sorry - got my sentence mixed up with the theme song playing in the living room. What I meant to say was that I will never ever do that to Little. The Jones Family Christmas tradition of gift agony is dead to me. The Palmer family tradition is to open your presents as soon as you can't take it anymore while understanding and accepting that you may end up with nothing left to open on the actual morning of Christmas. Booyah.

I must say that there were some rather hilarious gifts this year, which I always appreciate. There was a t-shirt professing the wearer's love for crossword puzzles

and a gift card that proclaims HAPPY BIRTHDAY.

But the one that takes the cake (err tree?): CAT BLANKET.

Cat Blanket Christmas Tree!

Oh Cat Blanket tree, oh Cat Blanket treeeeeeeeee, how lovely are your whiiiiiiskerrrrs!

I couldn't wait to show Little this morning.

All hail Cat Blanket!

"nnungoh Keetee! Amooow!" Translation - Snuggle kitty! meow!

So have a merry Christmas, everyone! Any way (and any day) you choose to celebrate!

Opinions, please!

2011-12-20T12:07:00.000-08:00

I need your help! Little and I have a few events coming up in the next year, so I've been working on his logo. This will be the one constant design on all of his t-shirts, signs, buttons, etc that we use for Duchenne related appearances. We'll be outfitting a whole team of folks in March for the PPMD's Run for our Sons event during the Little Rock marathon and we've been asked to appear on local broadcasting spot during the MDA Labor Day telethon in Little Rock for 2012, just to name a few (don't we sound famous? Ha!).

I want a design that can go on many colors of tee shirts, that's why they are mainly just in black. The motto for MDA is "make a muscle, make a difference" and that is why I've gone with a flexed bicep. The DMD support ribbon is a lovely shade of lime green, as all the good colors have been taken by the more well known diseases (darn you, Lance Armstrong). So there's the explanation for why I used the elements that I did.

What I would like from you, is to know which one you like best. I'll add the photos here and I'd like you all to use the embedded poll to vote for your favorite. Yes, they are a bit rough - I am not an artist, I did my best. The final product will be given to a graphic artist who will make a presentable (and screen printable) version of it that I will have up for sale on products on my cafe press site.

So scroll on down and vote! Feel free to leave me a comment explaining why you chose whichever design you did.

I've been working on designs for about 3 months and I've come up with quite a few that I thought were fantastic and Mister thought were garbage. Pbbbbbbbbt. So here are 5 that Mister didn't turn his nose up at. Why yes, I did end that sentence with a preposition. You can click on each picture to see a larger version.

Thank you all for your input! I'll post the winning design once it's received some touch-ups from a professional. :)

We need a new goal

2011-12-14T09:27:00.000-08:00

because we've met our "walking by his 2nd birthday" goal!!!!!!!!!!!!!!!!

December 12, 2011, my baby boy took his first real steps. ANDREW IS WALKING!

Mister was sitting there on the floor, trying to get Little to balance in a standing position and he just headed over to the couch! All by himself - no prompting from us. Little Boy just gathered up his courage and walked by himself! He did it several times, then we let him walk back and forth between us for a while. His longest walk was 12 steps.

After a few passes between his parents, he went for what was really important:

He's been walking short distances (mostly from me to the couch) for 2 days now and his balance is getting better and better. He had PT this morning and when she walked in the door, I set Tot behind his walker. PtHeather gasped before he even did anything, When he pushed his walker across the floor to her, she screamed and clapped her hands. It was so great to see how excited she is for Little. I told her to get ready because we weren't done with the show, and I sat on the floor where Mister is in the videos. PtHeather started tearing up before I even let go of him. Tot walked to the couch and I think I actually heard fireworks going off in PtHeather's heart! Andrew is usually pretty cranky during PT, but not today. He was so happy to show her he could walk and passed back and forth between us dozens of times. He even tried to stand up from the floor by himself (that'll be the new goal). BEST PT DAY EVER!

Now I can't wait to have him greet OtJennifer on Monday morning by walking across the floor to her!

Here's one from his second day was walking with an aide.

Now he tries to walk with everything that isn't nailed down.

So goal met with 5 weeks to spare!

All Aboard!

2011-12-08T19:20:00.000-08:00

The train is leaving the station.

Ignore the laundromat that is my living room floor. I was in the middle of folding the laundry when we noticed he was eyeballing his train and getting gutsy so I jumped up and grabbed the camera, leaving behind a mountain of yoga pants and socks.

He's an old pro already.

I can't believe it! I seriously cannot believe that my little, muscle diseased, motor delayed, beautiful baby boy is this close to walking. I've been in tears for 15 minutes now because I've always had a seed of doubt in the back of my mind that maybe he wouldn't ever walk unaided. But now - watching him take his first steps with his train and seeing how quickly he became comfortable enough to push it one handed (and steer!)and how balanced and coordinated he was....it's real. It's real now. I believe and I can say with all certainty that HE IS GOING TO WALK. And it's going to happen soon. Our original goal with his PT was to have him walking by his 2nd birthday. That's only 6 weeks away...........we just might make it.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Peyton

2011-11-29T05:56:00.000-08:00

This is Peyton. Peyton is the son of my very good friends Tanya and James. We became friends when the Army moved Mister and I to Ft Campbell in 2009. Peyton was just shy of 18 months old. He was africkindorable. Big blue eyes, blonde hair, and cheeks you could barely keep from smooching. Tanya and I quickly became friends - it was easy. It still is. We are both the kind of friend you don't have to check in with on a daily basis. We can go 2 weeks without talking then pick right back up where we left off. Our friendship has always felt effortless. Tanya was there for me whenever I needed when Andrew was an infant and Mister was in Afghanistan. James, too. He would come by the house every 3 or 4 weeks to check in on us and keep Mister's truck battery running. Tanya never made me feel like I was burdening her if I needed her to watch Andrew, even at the last minute. In fact, I'm pretty sure she liked it bc she was able to get her "baby fix" in. Every now and then I would get to watch Peyton for her. Such a doll. He was an absolute delight to me because when I watched him, I felt I was watching Little's future. Every move Peyt made, I would excitedly think about how one day it would be Andrew. See, Little was born on Peyton's 2nd birthday. It gave me an immediate connection to that beautiful little boy. It also makes Peyton, Andrew's very first friend.

Peanut and Little on January 18, 2011 - Peyton's 3rd and Andrew's 1st birthdays.

More birthday festivities.

Taking Little for a ride on the train. Little's not too certain about it.

With his Kool-Aid smile welcoming Mister back home from Afghanistan.

So I've known Peyton his whole life. I've known how much his parents, brother, and sister love and adore him. I know that the sun rises and sets for Tanya by Peyton.

So I know that right now Tanya and James are in more pain that I could ever fathom, because yesterday Peyton went Home with the Lord.

On Sunday, Nov. 27, Peyton fell into a swimming pool in Crestview, Fl. Without going into all the details, I will tell you that he ended up in the NICU in a hospital in Pensacola. The doctors did everything they could for him and Peyton fought valiantly. He made it through the first night with stable blood pressure, heart beats, and was even breathing mostly on his own. Unfortunately, the damage from the water was just too much for his little body to take and he passed away at 7:33 last night.

My heart is shattered over this. It's not the same as when we lost Russell. With Russell, I was consumed in a selfish grief. How do I deal with losing him? I can't believe he'll never barge through my front door again! But this is different. I love Peyton and I am devastated that he's no longer with us, but the brunt of my pain lies with his parents. I don't believe I was capable of feeling it from this angle with Russell because I was not yet a parent myself. But now, having Andrew, I can't mourn for my loss with Peyton, because the mother in me turns my emotions immediately over to Tanya.

I got the slightest shadow of what they're going through when the doctor told me I was going to lose Andrew, but right now I've still got him. I know that the day will come (barring a new treatment discovery) when I will be holding my son's funeral. But it's not today. Lord willing, it won't even be 20 years from today. So my moment of panic/terror/soul crushing pain was temporary. It will never go away completely, but now it is like a dull ache in the bottom of my chest - the level of intensity has dropped. I cannot imagine how horrendous it would be if that first hour of pain in knowing my son will die was magnified a million fold and immediately a continuous raw gash in my heart. See, I have time to prepare myself as best I can for when Andrew's time is over - Tanya did not. Tanya's and James's world has been gutted open and scattered around in front of them. I am crushed for them. We are not supposed to outlive our children. No parent should ever have to go through what Tanya and James are going through right now. I have cried and begged God not to do this for days. I prayed and prayed for God to spare them this pain. I have dropped to my knees in desperation and sobbed so hard I thought my insides had caught fire. Tanya and James do not deserve this. Peyton's 6 yr old twin siblings do not deserve this. I would give anything to erase their pain and give them their Peanut back.

But I know that's not possible. I know that Peyton has gone to Heaven to wait for the rest of his family. Peyton will never again know pain, sadness, or fear. He is surrounded by God's glory and peace. My wish now, is for some of that peace to fall on the Bullocks. My prayer is for God to take Tanya and James by the hand and lead them toward a place of healing. That He help them comfort the twins as they try to wrap their sweet heads around a life without their baby brother. This will be the hardest road any of them ever have to walk down and I ask that you all pray, too, that God wrap His Almighty arms around them as they start on this new path.

Mister doesn't like anyone to know the has a heart, but he's been captured by this family, too. James is one of his closest friends these days. In fact, he's dropped everything and is on his way to him right now. Tanya, I wish I could be there for you physically, too. It's too much for Little so I can't. If you thought for 1 second that I wasn't there bc I don't care enough, that would crush me. You have such a special place in my heart - all 5 of you do. And I've given Mister strict instructions to pass my love on to you and my smooches onto the twins if he gets to see them.

Friends, please keep this family in your prayers. Pray that God will lift them up and light their way. I am saddened to my very core, but I'll be ok. Please don't worry about me, but center your prayers to Him around Tanya, James, the twins, and the rest of the Stewart/Bullock families.

Peyton Stewart Bullock

January 18, 2008 - November 28, 2011

Rest in peace my sweet P. You will be missed so very much. In 2 months, on January 18, on Little's birthday cake, there will be an extra candle, a special candle - lit just for you - and will be that way every year on your shared day. I love you, baby boy.

Ah Lawdy, Lawdy

2011-11-22T07:19:00.000-08:00

Happy Thanksgiving, Tot fans! We had ours a few days early with my parents and my Pappaw. I hadn't seen him since Turkey Day '09 when Tot was still in my belly. It was nice to finally introduce them to each other.

If you know my Pappaw and know how he feels about his Cee-gars, you understand how hysterical this picture is and why my mom is cracking up (Isn't that right, Leesburg Church of Christ? - Yeah, I know you're reading this. :) Don't be shy, you can leave comments on here and on his Facebook page. That goes for all of you silent Tot Fans! Let me know you're reading, thinking about, or praying for us - I luuuuuuuuuuuurve comments and it's heartwarming every time someone comes up to me and says they read this blog. It's nice to know I'm not just writing this for myself. So hit the "follow" button over on the right or "like" his facebook page!) Wow, longest parenthetical aside ever.

But speaking of silent Tot Fans - one came up to me on Sunday and told me of something amazing, unexpected, and and so, so gracious that she is orchestrating in January concerning Little! More on that when it gets closer to the date but it's AWESOME! I never expect anything out of others (other than immediate family) for Little, myself, or Mister so when someone interrupts their regularly scheduled program to bless one of us, it blows my mind. I cried halfway through the service! Then my dad decided he'd sing alto with me on one of the songs and the tears were switched into laughter. Laughter in church! Gasp!

Ok so........Thanksgiving, the January thing....what else, what else.... oh! I have pictures that prove Little One is starting to look like me!

And thus was born my fear of clowns.

This next one has nothing to do with Tot, I just love it. It's me and my brother, Brian.

The other thing is that I finally got a moment to myself. For the first time in 22 months, I had a weekend away! No Little, no Mister - just me and my bff since 6th grade, Brooke. We went to the Razorback game in Fayetteville, AR against Tennessee. It was a blast. And soooooooooo overdue.

I'm hiding a heart monitor under that big ole sweatshirt. I had to do a home monitor for a week and that was the last day. I've also had an EKG, a stress test, and an Echo in the past few weeks to get some baseline stats just in case I am a DMD carrier. Echo technician said I had a "textbook heart". So all's well!

Before the game we searched Senior Walk for my name. I graduated in 2005 but my name was nowhere to be found on that sidewalk. I don't know what year I'm listed on, but we found it on the ground in front of the music building, right before the street intersects with Dickson St, facing Brough. Best sidewalk on campus as far as location - every single person that attends U of A will walk across my name at some point. So many feet (and prolly spilled coffee, spit, gum, maybe worse...) will land on my name.

So that's probably enough for now, right?
NO! NO IT'S NOT! I just realized I never posted his Halloween pictures! How could I neglect to share the world's cutest sock monkey with my readers?????????? For shame!

All I said was to put the candy back in the bowl for the Trick-or-Treaters!

So a belated Happy Halloween and a punctual Happy Thanksgiving!!!!!!

I know I just posted like 48 hrs ago BUT.........

2011-10-26T16:01:00.000-07:00

And yes, his shirt does say "My mommy is exhausted"!

They've got a thing they call Radar Love!

2011-10-24T15:09:00.000-07:00

BEST. WEDDING WEEKEND. EVER.

Mister and I just completed the trek to Choudrant, LA and back this morning with 15 minutes to spare before Little's occupational therapy appointment. Exhaustion - totally worth it. One of my favorite couples on the planet got married this weekend - Jacob and Rachel Parks!!!!! (formerly Jacob Parks and Rachel Yates)

Oopsie, wrong photo!

Much better.

The weekend started on Thursday...errr technically Friday morning for Mister and I since it was almost 1 a.m. when we got to the lodge. The lodge was bananas (b-a-na-na-s). It had 7 bedrooms, each with their own bathrooms on 2 floors with a full kitchen, 2 story wrap around deck, and a driving range with a putting green. Not too shabby for a groomsman's gift, eh?

Friday consisted of golfing for the guys and brunch for the gals. I believe the food was delicious, it certainly looked it, but I'm not positive since the migraine I was fighting off killed my taste buds. I do know there was a chocolate pie involved that I devoured, dulled taste buds be damned.

Afterwards, T-Parks and I kept it classy on the driving range.

Rehearsal was next, followed by dinner at one of Rachel's parents' houses.

They have a patio to die for. Absolutely beautiful. After stuffing ourselves with bisque and jambalaya, the toasts began. And then they ended. Or so I thought. Because all of a sudden Mister was standing. After a mini stroke, I grabbed his arm and hissed "There are grandparents here!" then continued choking on my rice. He managed to embarrass both the groom and his parents without actually going into the inappropriate details of which he was referencing, so I say well done. NAILED IT!

And I thought this guy's was the toast I had to be nervous about.

Me, Lindsey, and Tiffany - we all left our baby boys at home for you, Jacob. Love us.

Wedding day started off with some WPS as the hogs beat Ole Miss and some really sweet close up shots of Lindsey and I.

So on to the main event. Somehow Sam managed to finagle his way into walking the parents of the groom down the aisle.

It was such a beautiful wedding. Even the staff of the country club hung out on the balcony and watched it.

This is our attempt at a nice picture.

What you don't see in the background of this one is Jacob running over to steer Sam back into the library where he's supposed to be with the rest of the wedding party.

This is Sam refusing to dance into the reception.

Other groomsmen did a better job.

Mr and Mrs Jacob Parks!

And now for the story of the kiss. Not the "you may kiss the bride" kiss, but the "Oooooooooooooooooh....you're not my wife" kiss.

Mister was enjoying the festivities and came up behind my friend Katy, swooped in from the side and laid one on her. Katy thought it was just her husband, Mitch, so you can imagine the shock on both of their faces when Sam started to pull away and they realized they were not each other's spouses!!!!!!

Definitely the funniest thing that happened all night. Thank goodness they had a photo booth to commemorate that moment forever, via reenactment.

I should have rethought the dress. It looked great in the mirror but it photographs somethin' awful. It was a little too big so I look like a fatty Mghee - like I dyed a camping tent and zipped it around me. Oh well.

And this was me by the end of the night. Taking those boots off was the smartest decision I made all night. Don't hate, you know you want my socks. In fact I had a song and dance to go along with them.

My socks are bangin'

I can sliiiiide in my socks, I can sliiiiiiide in my socks

My socks are bangin' mhmmm

My socks are bangin!

And I must clarify - although the pictures make it seem as though I helped Rachel blow out the bar tab, I did not. I had 1 - that's ONE- drink the whole night. Yay responsibility. That's what having a kid does to you, especially one with special needs. Turns you into a buzzkill.

So Jacob and Rachel, Mister and I are so very happy for you two and wish you all the best life and marriage have to offer. Thank you so much for including us in your weekend! SALUT!

Sturdy as a Wet Noodle

2011-10-19T19:27:00.000-07:00

So Little Foot has been in physical therapy for about 7 months now. In that time he has learned to push up on all fours, to a seated position, crawl, pull to stand, and cruise along any surface he can balance on. It's been an exciting ride, that's for sure. I've watched him go from a floppy lump to the beginnings of toddlerdom. I thought I'd share with you guys some videos so you can see how a typical session goes and just what we're dealing with at this stage. Don't worry, he's much happier than in his crawling video!

First one - he's supposed to be trying to stand alone but he saw the camera........and that was that.

Next was today's PT session. PT H is saying "don't dive", not "don't die" like it sounds.

He is SUCH a noodle! It's like he has Jello legs. Pardon my roughness, beeteedubs - I will wear makeup next time, scout's honor.

And this one has nothing to do wtih anything other than I think it's hilarious. And inappropriate. Hilariously inappropriate :D

He was watching his uncle on an episode from Castle, if that makes it any better.

He's sooooooooo going to make it to our goal of walking by his 2nd birthday!!!!! And I think he's finally having a growth spurt. His toes are starting to hang over the edge of his D.A.F.O.s so I need to ask his orthopedist to put in an order for a new pair. He's getting his flu shot tomorrow so hopefully they'll weigh him and I can see if he's finally hit the 25 pound mark.

Oh an also, you know that irritating jingle Arby's got going right now - It's good mood food? Yeah, Tot loves it. Every time it comes on tv, he sings mmmmmooofoooooofooooooooooo for 10 minutes.

Remember that book I'm contributing to? I'm done! :) :) :) And I hope you all really like it! I believe it launches around Valentine's Day, so just check here for the purchase link next year! (Don't worry, I'll remind you. Like 80 times)

ERGOmaniac!

2011-10-10T13:24:00.000-07:00

My son is 21 months old and cannot walk unaided. We have high hopes that he will be taking those first steps before his 2nd birthday in January but there is a possibility (a teeny tiny wee one) that he will never have complete free use of his legs. Right now he only uses his leg braces for PT. My son will never be able to walk long distances. He will always need a backup mode of transportation until he is permanently reliant on a power wheelchair. For now, his backup has been my or my husband's arms or a stroller. One day it will be a walker or a cane, then a scooter before the wheelchair. You can guess how difficult that can be for us when we go places that involve lots of walking around. Usually, we just don't go or keep putting it off.

One such trip we've been delaying is the zoo. Yes, we could just take a stroller, but there are exhibits you cannot take the stroller inside of and I'm not comfortable leaving it unattended outside (thank you, husband's job, for making me paranoid). Then of course, as those of you who know us IRL have seen, Little prefers to be held. He'll make it about 30 minutes in a stroller then completely melt down if someone doesn't hold him. So that would mean carrying my son through the zoo while pushing his stroller that is cradling a diaper bag instead of a child. No thank you. I get enough of that while we're grocery shopping. I end up having to carry him on one hip while pushing the cart with my stomach and pulling items off the shelf with my right hand. Yes, go on and picture it now. Have your little laugh, I don't mind.

Well all that has changed recently. We took our first trip to the zoo this past weekend and it was wonderful! No aching arms or backs from having to hold him, and no anxiety over leaving our stroller unattended outside of the amphibian house. How did we do it, you ask? Did they leave Little at home and selfishly save the zoo trip for themselves? Did they bring a third adult with them and make them carry the child? Nope, read on.

A few months ago, I received a Facebook message from H*, an internet public relations manager with Ergo (a company based out of Hawaii that makes baby carriers).

In her e-mail, she said she was "moved by [our] story" and wanted to know if it was alright to send us one of their gently-used carriers. I was floored! I had been to the website previously and already had it in my head that I wanted to save up for one of the organic carriers but I knew it would take a looooooong time to scrape up enough for one. I messaged back and forth with H* a few times and about 3 weeks later, a beautiful chocolate Organic Ergo showed up on my doorstep!

I quickly tore it open and started reading the manual. I learned how to connect it together for the side position (Little's favorite) and the back position and proceeded to carry Little around the house in it. Good thing my husband was home at the time or it would have been a hot mess of trying to balance my son on my back while bending forward over the bed and scrambling to connect straps and buckles before Tot tumbled off onto the floor. The manual does actually say to practice over a bed, HAHA! Now I can manage the side position on my own, but the back one will have to wait til I grow Go-Go-Gadget arms. Anyway, Little loved it - he didn't even seem to notice that I wasn't actually holding him, instead he was strapped to me. That afternoon, while Tot was wrapped securely on my back, we picked a day to head to the Nashville Zoo.

The zoo was great! Little was more excited to point out which lights were on and off and flirt with the other visitors than pay much attention to any of the animals (as you can see here

when this poor little meerkat tried to make friends and he just ignored it), but he had a blast.

Hey wait! Come back Brave Little Shakespear! (Any Meerkat Manor fans out there? No? Oh well, never mind then.)

Most of his time there was spent buckled in the Ergo on my side and I never got tired! No aching hips, no strained back, no sore arms from lugging around 23 lbs on my side for 3 hours! I had expected to get all hot and sweaty where the carrier wrapped around me, but that didn't happen either - the materials are so breathable!
Needless to say, I am hooked. It was so comfortable, I had both of my arms free, and Little got what he always wants - to be carried.

I know Gator was sizing him up - he looked like a tasty morsel, didn't he?

I am so grateful to the Ergo Company. They are so generous and so caring. I don't know these people, and they don't know me or Little - but they jumped on an opportunity to ease one of our struggles just because they noticed that they were in a position to help! It is not often that I am the recipient of someone else's generosity. I am usually the one reaching out to help Jane. I am lucky that I have a mother and father who always put others first, and that has rubbed off on me. I am not usually the one saying "thank you", but "you're welcome". I read H*'s message then called my mommy and blubbered like a baby. It just knocks me off my rocker when anyone turns the table on me and takes care of one of my needs.

Ergo, thank you so so much. I hope you got a sense of just how much your gift to us means from reading this blog (and yes, people, the Ergo folks will be reading this.....bc I'm going to Facebook them about it as soon as I'm done writing, heehee). ERGO, ERGO, ERGO! EVERYBODY BUY YOUR BABY CARRIERS FROM ERGO!!!! You can link to it above or from the link on the right hand side of this blog.

He was getting a little tired - so much work to be carried around like a prince all day!

What? We're not supposed to touch the bamboo? But it's so much fun!

**note to all you opportunists out there.....I did NOT share this with you so you can go scrambling your greedy little fingers over to the Ergo website to try to mooch a free carrier. Please do not try to take advantage of their generosity. I did not ask for this, it was an unexpected gift. So back up off their customer service page and quit trying to cyber stalk H*. If you want one, buy one - or wait til Little is too big for his because I will be handing it over to someone else in need then.**

Arkansas

2011-10-02T11:11:00.000-07:00

We finally got to go "home" for a while! I've been itching to go back since Little was diagnosed 9 weeks ago (9 wks? Is that really all?). You know, it doesn't matter how old you are, when you get life altering, slap you in the face, howdoyouikethat news like learning your son has a fatal genetic flaw, sometimes you just want to run home to mama and I finally got a chance on the 14th. So again, I apologize to my friends who I did not track down and drive hours to see, but this was a family visit. I needed to surround Little and myself with kinfolk.

We had a great time, too! Best trip home in a loooooooong time. The only thing missing was Mister, but he's not usually with me when I head back to Arkansas anyway.

This table and chair was made for him by his grandparents (Pops & Didi). You are totally jealous aren't you? Nyah nyah nyah nyah boo boo!!!!!!!! It's amazeballs.

This is his Pappaw Frank's tractor (or Chrocktock, as Little says).

This is the beautiful Miss Elly (the only other person in my world that I have ever used my Pappaw's nickname for me on). Little tried to smooch her on 2 different days but she just wouldn't give in.

My dad was home from work while we were there, so I got to do things I don't normally have time for during the day - like shower long enough to actually let the conditioner set in my hair AND shave my legs all in the same shower! I usually have to divide my showering tasks up throughout the week since Little is such a handful. And his nap lengths are unpredictable so I can't just wait til then to shower bc I have other things I need to do during that time that I can't do while he's awake and demanding my full attention (like typing on this blog or mopping the floors or paying the bills - oh my gosh what a fun life I lead! Jealous?).

We also got to ride my parents' recumbent bicycles - err, tricycles - and Little fell in love! Unfortunately I will never be able to afford one (anyone from Catrike reading this? **hints being thrown your way) which is unfortunate bc they are the safest kind of bike out there to have a child on. I want one and I want some kind of contraption for Little rigged on it so he can always ride with me. He's almost too long to ride on my stomach; his legs get in the way of my pedaling.

Note the sweet scarf I used as a seat belt - won't need to do that again thanks to a certain generous company that I will blog all about after our trip to the zoo!

Anyway, the trip really just drove home to me the fact that I need to move back once Mister is out of the Army. Little will need more and more care as the years go by and the only people I can fully trust to help me out are family members....who are all in Arkansas.

Getting ready to go introduce ourselves to the staff at the LR MDA office.

He is so gorgeous that sometimes I cannot even believe he's mine - I produced this????

Grandma

We miss all of you already!

visuals

2011-09-13T09:34:00.000-07:00

Little and Mister

Teaching Little how to call the hogs ~ WPS!

What does a tiger say?

What prompted the tiger video:

So the Tiger costume is out this Halloween.

Trying to get away with opening the trash can

On a bench at the train station in Nashville

Cruising and learning the word "wall"

singing and dancing

playing ball

fixing his own breakfast

and how he felt about that big ole mess

Thank you to everyone who gave me input on the book decision! (totally doin' it) :) :) :) :) :)

If I were published in a book...

2011-09-09T08:10:00.000-07:00

would ya'll buy it? I want some honest opinions here. I have the opportunity to snag a co-author spot (along with about 40 others) in Misty VanderWeele's newest book, Saving Our Sons & Daughters 2. It's a collaboration of short stories and poems by people who have been affected by Duchenne. Misty was quite successful with her first edition, Saving Our Sons - one story at a time and so I have no doubt about how well she will put together this one.

What I would need to do is reserve my spot by paying my share (about $200) and submit my story of 1500 words or less all by October 31. Short timeline, I know....it kinda worries me. I wish the deadline was a few months out so I could have more time to pick and choose the theme of my entry. Also, is it too early for me to weigh in? Little's only been diagnosed for 6 weeks - am I going to offend "veterans" by having the audacity to speak on something I've barely been introduced to?

The $200 fee is to help cover publishing costs, formatting, editing, etc. She is allowing 1 picture per submission, which drives up publishing cost, too. Mister's first objection was over the cost, but I understand why Misty needs to charge. We can't expect her to front all the cost herself! I, unfortunately, have to put the fee in the "con" side of the page. $197 is a LOT of money for this household. As all of you military fams know, money is not free flowing in this lifestyle. The fee also gives the writers the option to participate in the affiliate writer selling program - meaning I would get 50% of the profit for every book I sold. So *IF* I chose to do it and *IF* ya'll actually bought a copy, I could gain back my share fee and put all the rest of the profits toward Duchenne research or set it aside to start saving for Andrew's future medical needs. For all I know the profit margin is around a nickle a book - I mean hopefully we're closer to dollarS a book, but I honestly have no idea. I just came across this last night, so it's all new to me.

So.......what do ya'll think? It's no secret that I'd like to be published one day and that eventually this blog will be turned into some kind of book in Andrew's memory, but should I start now? Is it too early? Is this the right project to start with? Would ya'll actually buy the finished book? Spill, please. I don't have a whole lot of time to make my decision!

Hope and Help

2011-09-05T06:51:00.000-07:00

Hope and help - it's what the MDA means to so many families and those are the same 2 feelings it raised in me last night. Watching the MDA Telethon yesterday was both uplifting and humbling. I didn't expect it to be so emotional for me, yet with every child's story and with every donation handed over, the tears flowed. I am just so blown away by how many people and corporations give to the MDA. The Nashville chapter alone hit $250,000 in the first hour and Little Rock was given over $147,000! Do you have ANY idea how many families that will help?! It takes $800 for 1 child to be able to attend MDA's summer camp, $500 to repair 1 wheelchair for a year, and it takes about $74 to fund each minute of research. If all the money made in the first hour of the telethon was put toward finding a cure, then Little Rock and Nashville combined made enough to fund about 89 hours of research! CRAZY. Good things are going to happen in the world of muscular dystrophy! I have no idea what the totals were at the end of the night bc I went to bed at 10:00. I dvr'd, I swear! I'll finish it out today at some point. See? I told ya'll I wasn't trying to make you watch all 6 hours, I didn't even make it myself!

I want to personally thank a few people I know who made a muscle last night on behalf of Andrew;

Windsong Church of Christ - I have known most of you since I was 8 years old. Some of you watched me grow up, some of you grew up with me, and some of you only know me through my parents (who still attend). When my mom called me last night with the total amount of donations she received from you all, I was blown away. I feel so blessed and honored to be a part of the Windsong family and knowing how much you care about Andrew truly humbles me. I cannot express the magnitude of my gratitude for you. Mister and I are placing membership at here at Barkers Mill Church of Christ later this month and if we get half as much support here as we have with you, we'll still be overloaded with blessings and love.

Christie, Rosie, Renee, Niki, Amanda, Yavonda, Rheta, and Tanya - <3 <3 <3. You've got your own lives and families to handle but you still set aside time to promote, donate, and educate yourselves and others about DMD and the MDA. So touched. So thankful. I hope you all know just how much that means to me.

MOM!!!! - You volunteered at the Little Rock MDA office during ALL 6 hours of the telethon as a hostess, mailed out flyers, brought in donations, and raised SO MUCH awareness all in about 10 days time. You are the best mom in the world, the best grandma in the world!!!!! There are so many people in my life whose mothers could never be half the woman you are and it reminds me just how lucky Sam, Andrew, and I are to get to have you. (Poop. Now I'm crying again.) The way you dove into this without a second thought is inspiring.

To everyone I didn't name who watched, donated, prayed - I thank all of you. To have something like this hit your family is like running face first into a brick wall. You fall hard and you are left with a pile of rubble around you, dazed and lost. It is in a moment like this when you start to see those around you clearly. The people in your life who are true friends, true brothers and sisters, reach out a hand to help you up. For those of you have done that over the last month, I thank God for you.

I am excited to see how much we can bring in over this next year and present to MDA next Labor Day. Bike ride? Walk? Sell shamrocks? So many ideas! I've got to make bumper stickers and t-shirts and keychains on my site (www.cafepress.com/geronimogifts) so I can donate all the profits. I've got to figure out a way to add a permalink on here for MDA donations, too.

Oh, and I want to say Hey! and Welcome! to my readers who have found me via Washington University, BabyCenter, Little Rock Mamas, and PPMD!

Hope and Help!