That SMA thing I run for.

I have failed miserably this month.  To be honest, I'm losing steam as far as inspiration goes right now but that is not a viable excuse.  This month called August also happens to have an "AKA" and it's SMA Awareness month.
I have been training for my very first marathon.  I have been training to raise money to help kick SMA in the YKW (you know what).  The money that goes to Getty Owl Foundation is used to aid Dr. Brian Kaspar at Nationwide Children's hospital to potentially cure SMA. I have not done a very good job of telling you guys about what it is, how it works, and the fact there is currently no cure.  So, here goes...

SMA (spinal muscular atrophy) has 5 "types".  0-4.
*0 being the most severe, where the onset is before birth and the sweet baby isn't estimated to live more than 6 months.
*1- is a close runner up as far as the most severe form of SMA goes.  These sweet babes cannot sit up without support.  Breathing, moving, and swallowing are difficult.  A simple cold can exacerbate the difficulties and can potentially cause death if not handled appropriately.  The average lifespan of children with SMA type 1 is barely 2 years.  However, with your help we can increase this number.  And as a sweet reality to this fact, sweet Getty will be FOUR in March....just saying.
*2- people with type 2 are able to sit but not stand.  Those diagnosed with type 2 have an estimated lifespan that can go into adulthood.
*3-those diagnosed with type 3 can walk but this ability is lost over time because you caught that "atrophy part" right?
*4- those diagnosed with type 4 are extremely weak but can walk and should not lose that ability over time.

Let's talk genes.  Something I don't know a whole lot about and maybe you don't either.  That's why this handy-dandy diagram is dummy proof....

Thing about this carrier thing is it's not in the regular work up as far as prenatal blood work goes.  It's foolish seeing as SMA:
is the #1 genetic killer of young children
occurs in nearly one out of every 6,000 births (and this number seems to be on the incline)
is NOT based on race, ethnicity, or gender

All that being said.  We NEED to find a cure.  Soon. Quickly. Rapidly. Allegro. Yesterday.
My race is November 16.  I am collecting money either in person or online via Crowdrise.
ALL the proceeds go towards Getty Owl Foundation which is a 501c-3 organization.  This means it's TAX DEDUCTIBLE people.
My goal is $1200 because seriously, it's SMA and I'm running a MARATHON.
That would be 26.2 miles guys. 26.2.....

In all seriousness though, please think about donating to this cause whether it's through my Crowdrise site or directly to the Getty Owl Foundation.  We've gotta get on this y'all.  We just gotta.

 

It's Friday.

I've already written this post once. Blogger you can kiss my big toe.

Anyway, life is still topsy turvy in the Reid house.

Teagan is officially allergic to amoxicillian and all the other "cillians".  Not cool.  We've basically had to pump her veins full of Benedryl for the last four days (and counting) until it works its way out of her system.  Basically, toddler zombie.

Kyra Mae had her 6 mth check up and rocked it.  I will post more on that later.  She is growing like a little weed and super healthy.  Praise the Lord.

Kyra has also thrown up her night time bottle the last two nights.  I'm not talking spit up people.  I'm talking full on the Exorcist throw up. If it happens again we're calling our on call nurse.  Not normal.  Can't be.

Our family is still climbing up Mt. Kilimanjaro but with each mile the Lord gives us a new tool to make it easier.  The peak is in sight and we're going to slide down together.  Possibly on our bellies. 

I am so thankful for the "school" Teagan and Kyra Mae go to. (Note-Teagan goes to "school" and Kyra goes to " Ms. Alice's room". Or at least that is what Teagan says.) The teachers they have and have had are amazing and we are so thankful for them. The patience they have when dealing with both of my children is incredible. We love them all dearly and are so grateful that upcoming circumstances are not going to tear them away from their current environment. The Lord truly is working it all out.

I have used my crock pot three times this week.  All meat came out so tender we looked at it and it fell apart. SO. GOOD.

My car temperature thingy read 100 this week. 1-0-0. This is NOT okay. It's freshly May in NC. This is NOT how it's supposed to be.  Can I get an 84? Please!?

I think I have figured out what theme I am doing Kyra's 1st b'day in.  Mum's the word.  Yes, it's 6 months away but what part of topsy turvy did you not get? I have to run with ideas when I get them. 

I've opened an Etsy shop.  It is just a few odds and ends of stuff I've made.  Basically, gas money and diaper money.  Please visit if you've got a chance.  There are only a few things listed but I do custom orders as well. 

There were two awful things that happened this week around the blogshpere.  Diana, from Hormonal Imbalances, lost her two sweet twin boys this week.  They were 19 weeks and 4 days.  Please go read about her story. 
Avery, from Avery Can, also went to Heaven this week.  She was diagnosed with SMA on April 6, 2012.  Avery died from SMA complications on April 30, 2012.  I cried so much for both of these families that my shoulder's shook and my eyes were so puffy I put a cold can of soda on them so I could have visits with my clients.  Teagan's buddy, Getty, has SMA also.  We love her and we love her family.  Please visit their website and find out more about SMA and how you can raise awareness and money for research.  Another baby should NOT have to die from this.


I hope you all have had a great week.  I hope you have an even better weekend.  Eat some ice cream.  Or frozen yogurt.  Or a freezey pop! Just eat something cold and yummy cause it is stinkin' hot out there. 

Stroller running. Not. Happening. Just sayin.

You know those women who come whizzing pass you on your run pushing the jogging stroller with three kids in it?  I will never be one of those women. NEVER.
I tried.  Trust me, I tried.  When we first had Teagan I declared I was going to be that mom.  The one in the cute running pants and bright pink tank top pushing my baby while running.  Come to find out I am most definitely not that mom.
Two reasons come to mind when figuring out why I'm not the stroller pushing running mom.  First, I really need my arms to run.  I cannot run to save my life, well maybe if it was life or death I could, without moving my arms.  I take that back, I can run without moving my arms but it's really uncomfortable and then I end up running looking like a half turtle half penguin. Get the visual. It's not pretty.  Second reason.  Running is my time.  I love my husband and my girls but running is just for me.  Time to think my thoughts and pound out my frustrations on the pavement.  Now, when I am running I do think of my family and how one day the girls and I might run together.  I think about sweet Getty who I run to raise money for in the races I participate in.  I think about her mom, Kate, who I hope to go for a run one day with while Josh and Mark watch the girls.  The three girls that will most definitely be in tutus while they play. 
No matter the reason I run or how hard I might have tried I will never be a stroller pushing running mom and I am a-ok with that.

*Speaking of running. If you're going to be in the California area and like to run or walk you should check this out! It's on my birthday and it hurts my heart I won't be able to run it this year...next year DEFINITELY!

The Getty Owl Foundation. Auction Day 2!!

Yesterday's piece found here, sold for $102!! How awesome is that!?! If you missed the opportunity to bid there is another opportunity headed your way! How about bidding on this sweet painting done by Natalie.  You can bid on it here.  Don't foget all bids start out at $10!

100% of all proceeds will be going through the Getty Owl Foundation to the Gene Therapy Program at Nationwide Children's Hospital in Columbus, Ohio.
Help us fight SMA, the #1 genetic killer of young children. 

Summing up SMA.

August is SMA (Spinal Muscular Atrophy) Awareness month.  There are a lot of technical medical terms associated with SMA that can quickly get confusing. 
Here are a few things you should know about SMA and then there is an awesome visual aid that has been passed around the internet that really puts things into perspective. 

*SMA is an inherited disease that causes progressive muscle degeneration/weakness. 
*SMA Type 1 is the most severe kind of SMA. Teagan's sweet friend Getty has Type 1.
*SMA is the #1 genetic killer of young children.  It occurs in nearly 1 out of every 6,000 births.
*1 in EVERY 40 people unknowingly carries the gene. No matter their ethnicity.  Their gender.  Their race.
Now, if that alone didn't shock you then let this picture sink into your brain:

Need art for your home?

How about this piece?

The Getty Owl Foundation is having an online art auction. The auction starts on Tuesday, August 23rd until they run out of art which will probably be around August 30th.

All the art sold is either made by a child with SMA or a loving parent of an SMA child.

100% of the money raised is going to the Getty Owl Foundation for the gene therapy program at Nationwide Children's Hospital in Columbus, Ohio.

The starting bid of all of the art is $10

2 pieces of art will be up for auction each day.

This piece of art was made by a little girl name Nora.  Nora has SMA Type 1.  She is a little fighting firecracker though who apparently has a nack for painting! Isn't her "Abstract Minnie" piece fantastic?

Sweet presents from faraway friends.

Teagan and I have both been very lucky when it comes to meeting people through the blogoshpere.  She and I both have made several sweet friends whom we can't wait to meet face to face someday soon!  Teagan has received some sweet mail the last week and we wanted to show you all some of this fun stuff!

First, Teagan got a package from her sweet penpal, Eva.  Nessa over at Moments & Impressions and I have been talking for a while and I can't wait to hug her sweet neck in person! Eva recently sent Teagan sidewalk chalk and finger paints! Teagan used the finger paints to make Father's Day presents and she loves playing with the sidewalk chalk! I managed to grab a picture of her latest artwork before it rained the other day!

Then there is sweet Getty! Her mom, Kate, and I seem to be kindred spirits.  Each existing from a different coast of the US.  One of these days I will get to hug her neck too! I can't wait! She has such a strong life force about her! She is definitely a lady you want on your side! Her sweet Getty is bravely fighting SMA.  If you don't know what SMA is then visit their website or search for it on my blog.  I've written about it a few times.  Trust me, once you read about Getty, your heart will have a permanent lasso around it and you won't be able to get out!  But realize, this is not a bad thing!  Kate has recently decided to start an Etsy shop where all the proceeds will go to the Getty Owl Foundation.  She asked if Teagan could be a "test owl" for some of the items she is going to sell.  I instantly agreed! She sent Teagan a matching pillow and blanket! Teagan loved it so much that she pulled it out of the box and laid down in the middle of the kitchen floor with it! She is such a ham!

Vote for SMA to Win 250k

Please take a few moments to watch this video and vote at the end. This would be a huge win for the SMA (Spinal Muscular Atrophy) team! Let's help them win the vote, win the money and find a cure!
For those of you who don't know what Spinal Muscular Atrophy is, I've written about it several times over the last few months. You can search for it on the blog or you can go to my 2 favorite sources of information for it: Getty's blog and Sophia's blog.

Lullabies for Getty

Teagan and I have had the honor of calling Getty and her mom friends for a little while now.  We have never met in person but hopefully one day we will.  We have grown closer via the internet/e-mail then some people grow face to face.  I am already forever thankful for their friendship and can´t wait for the day Teagan & Getty dress up in their tutus and party.  When we got the good news about an album coming out that would help raise money for the official Getty Owl Foundation we jumped on the chance we were given to tell people about it.

The album is Sweet Water Child--Lullabies for Getty by the Damnwells.  Tuesday, April 5th (tomorrow) is the official drop date of the album.  The idea is to skyrocket this album so it shows up on the big Itunes kids charts because the more people that buy the album the more money goes to the Getty Owl Foundation.  The Getty Owl Foundation is raising money for SMA (Spinal Muscular Atrophy) research.  The cure is so close and is within arms reach as long as the researchers have enough money to keep researching.

So, if you can help us out and buy the album tomorrow all of the SMA warriors would appreciate it (I have recently been bestowed the honor of being called a SMA warrior and I wear the badge proudly).

For those of you who don´t know about SMA here are some facts about it (taken from Gettyś blog).  And don´t worry I had never heard of SMA until I happened upon Getty Owlś blog. 

Spinal Muscular Atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness. Infants, like Getty, with SMA Type 1 (SMA1), the most severe type of SMA, are born with very little muscle tone and weak muscles. They develop feeding and breathing problems as the weakness gets worse over time. The weakness eventually becomes severe.

There is no cure or treatment for SMA. The lifespan with SMA1 is seldom longer than 2 – 3 years.

• SMA is the #1 genetic killer of young children.
• SMA is estimated to occur in nearly 1 out of every 6,000 births.
• 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
• SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
• There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
• Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.
• The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.
• SMA does not affect the mind.
  Spinal Muscular Atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness. Infants, like Getty, with SMA Type 1 (SMA1), the most severe type of SMA, are born with very little muscle tone and weak muscles. They develop feeding and breathing problems as the weakness gets worse over time. The weakness eventually becomes severe.
  There is no cure or treatment for SMA. The lifespan with SMA1 is seldom longer than 2 – 3 years.
• SMA is the #1 genetic killer of young children.
• SMA is estimated to occur in nearly 1 out of every 6,000 births.
• 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
• SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
• There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
• Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.
• The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.
• SMA does not affect the mind.