I am......

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

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

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

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

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

Peyton Pillows

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 30 minutes earlier - if just 1 of those procedures had worked - if I hadn't nad to be induced early - 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.  :) :) :) :) :)