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Do you shop at or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps!

Monday, October 31, 2011

Ready for some Christmas shopping? Join us for a fundraiser!!!

Like personalized bags, lunch boxes, organizers, and more? 

My friend, Amanda, sells Thirty-One and is having a fundraiser sale for our adoption.  We get 10%-15% of sales towards our adoption fees!  We will also earn free items that we can raffle off for an additional fundraiser :).  There are also monthly specials that you can get as well!

The "party" opens now and closes on November 12th.  All orders must be in by the 12th.

To browse and purchase go to ,  then click on "my events" and then "Jamie's fundraiser for Ramya".


Tuesday, October 25, 2011

If I won the lottery

My mom and I like to talk about what we would do if we won the lottery.  It's a silly thing to talk about considering we don't play, but we have fun with it anyhow. 

This weekend the kids, Kyla (the teenager living with us for a bit), and I tagged along with David to a work conference he had in Vegas.  The only cost for the kids, Kyla, and I to go was what we ate in food, so hey, why not?!?!?  Anyhow, while we were there I got a really good look at how some people, who are blessed beyond comprehension with money, choose to spend it.  I have to say, I was very disappointed. 

Timothy Sykes, the guy putting on the conference, had a big blowout party one night for the guys attending his conference.  He hired a bunch of women to the party and mingle with the guys that were attending the conference.  He rented a huge studio, got tons of booze, and paid each of those women an insane amount of money to be there that night.  He spent $25,000 total.  That is more than half of the adoption fees we are trying to raise blown in one night!  

One day, David and I shared an elevator with a man that David called the $60 million dollar man.  I thought he was joking.  Nope, apparently the man had just sold his business for $60 million dollars!!  One of the nights he was in Vegas he went to a club and threw hundred dollar bills in the air so it would rain money on the people at the club.  He literally threw his money away!  I was teasing David and told him I should have asked the million dollar man for some adoption money. David says that our adoption will mean more because we will have to work for it. I'm pretty sure he's right ;). 
After seeing all this I started thinking about my mom and my conversations about what we would do if we won the lottery (though first we'd have to start playing ;)).  My story goes like this...

First I'd buy a big house (stop shaking your head, it's for a good reason, I swear ;)).  Next I'd adopt lots of kiddos to fill the house with.  I'd hire people to cook for me, people to clean for me, people to help me home school, and I'd spend my days playing on the floor with the kiddos, taking them places they have never been before, and loving on them.  David, of course, would be working his dream job, trading the stock market with his own money.  He'd be loving on the kids a lot too, though.  He's great at that.  Of course, we'd take some awesome vacations (with all the kids in tow) and I'd probably get a pedicure every now and then, but I like to think that we would use our money wisely and not just (literally) throw it away.

I know we will never win the lottery and we will never be millionaires, but I also know our life is amazing just the way it is and that we are blessed beyond measure.  We can't wait to bring home Ramya and include her in the next chapter of our story; one that will never include millions of dollars, but one that will always more amazing than any life money could buy!

Thursday, October 20, 2011

Save the Date and Your Unwanted Stuff!

Live in Phoenix?

Have lots of unwanted stuff you want to get rid of?

Looking for an easy way to help us raise money for our adoption?

Well, I have the perfect event for you!

Mark your calendar for:

Saturday, December 2nd and 3rd

We will be having another fundraiser garage sale at our house.  I know it's late in the year, but better late than never!  We will probably have another in March as well.

How can you help?  Great question!

1)   We want your unwanted stuff! Clothes, electronics, exercise equipment, old movies, toys, household items, etc... We want it all!  Anything we can sell at our sale, on craigslist, or on e-bay that you don't want, send our way!  All the money will go towards our adoption.

2)  Volunteer a couple days here and there some time before the sale to help us price and organize, or to play with two cute children while I price and organize. 

3)  Help me run the sale the day of, so either December 2nd or 3rd, or both!

4)  Bring me coffee when I'm a walking zombie and come prepared with a smile and a joke to keep me motivated!

Thanks so much for all of your support!!!!

Monday, October 17, 2011

Join Team Madi!

Next Satuday is our local Walk-N-Roll for spina bifida!  Our goal is to have 10 people walking with us and to raise $500.  We are at 5 people walking and $285.00, so we are over half way there!  Please join us!

Sunday, October 16, 2011

Spina Bifida Stories: Michelle

I was born in 1971 - the early days of spina bifida. I was born with Myelomeningocele (L4/L5) and hydrocephalus. Not long before I was born, most babies with SB died due to either infection caused by their spinal cord not being surgically closed after birth or hydrocephalus. I was truly born at the right time! Another thing that worked in my favor was being born in Chicago and Children's Memorial Hospital in Chicago was pretty much the birthplace for the treatment of babies born with SB. In fact, the Spina Bifida Association of America started off in Chicago with just a few parents. Amazing what a grassroots effort can turn into.

I had about 30 surgeries by the time I was 10 years old. Thankfully, the majority of those were done before age 6 so I don't remember much. Even though I had many surgeries and physical issues growing up, I feel I had a pretty typical childhood. I went to a regular school and attended regular (mainstreamed) classes, had lots of friends, went to summer camp, played with my sisters, fought with my sisters, loved playing with my dolls, and loved to swim. I also went on many trips with my family - California, Mexico, Florida, Ireland. My parents did their best to not let my having spina bifida keep me down - even with my leg braces and crutches.

As I grew up, I always knew I would be independent and live on my own. My parents told me so as I grew up, so I had no other frame of thought. I got my first job at 16 being an annoying telemarketer, learned how to drive at 18 and moved out when I was 25. I decided to move to Florida with a friend from high school and so I quit the job I had the time (working in a law firm) and packed up my car and drove down here in January 1997. I have been here ever since! There really is no comparison to the weather from Florida to Chicago. Florida wins hands down!! Moving down here was the hardest thing I have ever had to do. It wasn't (and isn't) always easy, but so worth it. I wouldn't change my decision to move out for anything. I still go back home for Christmas and usually in the summer and my family comes visit me. It's a nice arrangement!

My most recent job I had was at a small family-owned company that made and installed counter tops. I was their production coordinator. Unfortunately, I developed a severe pressure wound 4 years ago that required many lengthy hospital stays, so I had to resign and go on Disability. My 20 year work history worked in my favor though, as I make much more than people who are on Disability and have never worked. My wound is finally healed and I'm hoping to be back working in 2012. I miss working and making my own money!

Life with spina bifida can be difficult at times, but every life is presented with challenges and hardships. Mine just happen to be physical. As strange as it may sound, I am grateful for that. There are many more wonderful things about my life than negative things. I try to remind myself of that fact everyday.


Thursday, October 13, 2011

A Piece of Equipment We Love

I blogged a while ago about getting Madi a Rifton Dynamic Stander (mobile stander).  I haven't updated about it for a while and thought it was about time!  I really love Madi's stander.  I love that she can easily wear her HKFOs to use it and that it keeps her upright and weight-bearing.  Another thing I love about it is that it puts her at eye-level with the other kiddos her age.  She can maneuver it very easily and get where she wants to go.  Most importantly, Madi loves her stander as well!

I've talked in the past about trying to vary Madi's activities while she stands up.  Usually that is a mix of spending time using the walker, spending time in the learning tower, spending time holding my hands to walk, getting carried in her HKFOs, and spending some time in her Rifton mobile stander.  Madi is two, so she likes to keep busy.  Changing activities often keeps her happy and also keeps her upright, which is so very, very important for her.  It's important for her bone growth, muscles, bowels and bladder, circulation, and so much more!

The only thing that I wish I could change about the stander is I wish it had a removable handle. I'd prefer to take this out, instead of Madi's wheelchair, but it's hard to use in busy parking lots and places like that. Because of the design, I have to bend over to push Madi, and it is hard to safely maneuver Madi around without killing my back and while watching Conner. Madi is amazing at getting around in it without help, but I always push her in the parking lot to keep her safe (ask her how much she loves that ;). She always yells, "NO! I DO IT BY MYSELF!" and gets upset at me).  I have plans to try and get someone to rig a little handle for me, so I'm hoping I can work something out there.  Other than the lack of the handle, the stander is amazing!!!

We bought a little table that works great with Madi's mobile stander.  We got it at Costco and it was only $20 but it is adjustable to four heights.  It fits when she is standing in her HKFOs, when she is in her stander, and when she is in her wheelchair; it's great!  I love easy and simple solutions that are affordable! Here's a picture of Madi using it in her stander:

We eat at the table, do stamps, color, paint, make food, and so much more.  It gets a lot of love!  In fact, it has some paint and ink stains to prove it!

If you want to check out Rifton's stander, you can go to  They also have a blog you can read at

We found our stander on craigslist and were able to buy it because of the money we get through Madi's amazon associates account.  Anytime you purchase through Amazon and use Madi's link, we get money back that we use towards therapy equipment and other equipment that insurance won't cover.  THANK YOU to everyone who purchases through her link for us!!  You are such a blessing! 

Wednesday, October 12, 2011

I am stealing a post ;)

With permission, of course, I'm stealing a wonderful post I read yesterday.  But, before I share, I'll explain why I'm sharing.  In our adoption adventure, we've met three groups of people (probably more, but I'll simplify it to three for you). 

1) The you are crazy, but we wish you the best group
2) The you are crazy, period, just crazy, and you are making a mistake group
3) The you are crazy, and this may not be easy, but wow will this be amazing and we are here to help group. 

I like the third group the best :).  It's hard, though, not to second guess yourself when the number two group speaks up.  Thankfully, that group is small, but they are there, and they make themselves known.  I can say, though, that God has spoken much, much louder than that group.  (I should also say that I do appreciate that  second group, because when they speak up, it drives me in to a frenzy of book reading, chatting with other adoptive families, and prayer.  At the end of the day, I come out even more confident of our adoption plans because of this group.)  David and I know that we are walking the road God has called us to walk.  When I read the post below, it reaffirmed how I am feeling. 

As sure as David knew he'd defeat Goliath, I am sure that God is leading this journey.

(On a side note, Sarah, the author of this post, and her family are on a journey to adopt a beautiful little girl, Elisha, who is waiting for them.  Check out their blog and read their story, it is an amazing one!)


We all know the story. Even those that aren't faithful can tell the basics of the story of David and Goliath. David was a small shepherd boy, Goliath was the big bad Philistine giant, Goliath came to attack, no Israelite would fight him, and then little David stood up to him with just a few stones and a slingshot, konked him square in the noggin', and took out the Giant once and for all.

But before David even made it onto the battlefield, he had other goliaths to contend with.
First there was his family. Filled with good intentions, or perhaps not, I don't know, they basically shot him down when he suggested himself as the person to take care of the issue at hand.

In fact, his brother said to him:

“Why have you come down here? And with whom did you leave those few sheep in the wilderness? I know how conceited you are and how wicked your heart is; you came down only to watch the battle.”

Who do you think you are?

You have no right to do this.

You aren't a warrior in my eyes; just a shepherd.

You have no idea what you are doing.

A goliath.

But still, David was willing to fight.
Then David was sent to King Saul, and told him, (more or less), "Hey, King, don't worry, even though no one else is willing to go and fight, I'll do it."

And the king's response?

“You are not able to go out against this Philistine and fight him; you are only a young man, and he has been a warrior from his youth.”
You can't do it.

You've go the odds stacked against you.

He's big. You are little.

This isn't your problem to deal with.

A goliath.

But still, David was willing to fight.
David was willing...
because he knew God was on his side. He knew, with the greatest of confidence, that this battle was not just between a small Israelite boy and a giant Philistine warrior. We always picture a little shepherd boy up against giant, but what we often fail to recognize is that God was there all along, standing next to David, guiding the slingshot for a direct hit. David was confident, and, although he may not have known what exactly the end result would look like, he knew that whatever God had in store was worth standing up to fight.
We may not face Goliath, but we face our own goliath problems all the time.

We get questioned, beaten down, told we are wrong, how dare we, who do we think we are, this isn't our battle, let it go, let someone else do it instead.
So many times, even those with good intentions end up as the goliaths in our lives.

When I heard this message, I realized just how closely it parallels with our adoption journey. Not just ours, in fact, but many families. Can I get an amen? :)

The decision to adopt isn't to be taken lightly.

But then again, if you have confidence that God is on your side, do you really have to worry about heading into battle?
Shortly before we filled out our commitment paperwork stating our intent to adopt "Taylah", we were faced with a situation that made me question whether or not this was the path we were truly supposed to take.

I asked God for guidance; I specifically asked that He speak boldly, clearly than ever before,
to let me know if this was a battle we were truly supposed to fight.
I opened my Bible, and the answer was blazing before me.

Arise and thresh, O daughter of Zion: for I will make your horn iron, and I will make your hoofs bronze: and you shall beat in pieces many people: and I will consecrate their gain unto the LORD, and their wealth unto the Lord of the whole earth.  -Micah 4:13
When asked, "Are you sure this is God's intended path for you?" I can without a doubt say,

As sure as David knew he'd defeat Goliath, I am sure that God is leading this journey.

Thank you, Sarah, for letting me share your words!!

Getting Crafty

My kiddos love to be creative and get all crafty.  With Madi, it takes a bit of extra creativity to make sure that she is able to do anything she puts her little mind to.  One thing that we use all the time and LOVE is our learning tower.  I should be a spokesperson for them because we love ours so much!  We seriously use it every day.  We got it when Madi was just itty bitty, and I knew it would get a lot of love.  We use it with Madi in her HKFOs, but had planned to use some sort of chair or stool in it if she wasn't able to stand in it.  We try to encourage Madi to be up and standing as much as possible and it helps when we can vary her activities for her.  The learning tower allows us to cook, do dishes, play in the sink, do crafts standing up, etc...  Today we used our learning tower to make peanutbutter play-dough (recipe below) and to paint.  It was a ton of fun!  Here's some pictures from today:

P.S. Both of the kids fit in it as well, which is awesome.  It is very roomy!!

Peanut Butter Play-Dough Recipe
(We made ours peanut-free!  We also used the dairy-free version :)  I will put my modifications below)

1 C. Peanut Butter (we used sunflower butter, however, hazelnut chocolate butter would have been very yummy too!

1/2 C. Honey (we used wild, raw, local honey)

2 C. Powdered Sugar

1/2 teaspoon gluten-free vanilla extract

(You could also add m&m's, chocolate chips, rice crispies, or something similar to change it up a bit)

In a bowl mix peanut butter, honey, and powdered sugar with your hands. Dough should feel soft and pliable, shape into the forms of your choice. You can be creative and use cookies cutters, and all kinds of things. Enjoy!

(the above picture is a link to the learning tower on amazon, using our associate link ;))

Do You Use Ebates?

This is just a little spam :)

Ebates is an online site you use to go through when you do your online shopping.  All you do is go to your ebates account, click on the store you want to buy from, then go to that store and shop like normal.  You get a percentage back of all your purchases!  Amazon isn't one of their shops, but e-bay is :).

If 50 of you sign up and use ebates, then Madi can get a FREE iPad!  How cool would that be?!?!??!?  Here's our link...

Here's the fine print from the site....
A qualified referral is a new user to Ebates referred by you who makes a purchase of $25 or more earning cash back. No self-referral allowed and returned purchases do not qualify. Posting messages or links on any Ebates partner stores' Facebook pages or forum pages using your referral links is not allowed and will result in disqualification from the referral bonus program. Keyword bidding for search marketing campaigns is not allowed. To qualify for the bonus, the new member you refer via your custom referral link, the invitation forms on this page or other methods supplied by Ebates that allow for proper tracking of referrals, must make a qualifying purchase of $25+ between 10/1/11 and 12/31/11. Only one bonus level per person awarded, you will receive the highest bonus level for which you qualify. Each qualified referral to Ebates earns $5.00 which is added directly to you Ebates account. The bonus levels indicated above include the original $5.00 credited to your account, and the additional monies will be added to your account at the conclusion of this promotion. Ebates decisions are final. In the event that the iPad2 as described above is not available, a similar bonus of equal value will be awarded. You are responsible for any taxes, as applicable by law. Referral Bonus Promotion is open only to individuals who are legal residents of the fifty (50) United States, the District of Columbia or Puerto Rico and are eighteen (18) years of age. You will be contacted within ten days of the final qualifying purchase date regarding delivery of your bonus.

Monday, October 10, 2011

To good not to share!

SPINA BIFIDA AWARENESS:   You should be aware that having a child with SB may cause increased motivation to help others, a new found perspective in times of trial, a desire to enjoy the little things and commitment to change the way the world defines "disability". Studies show that raising a child with SB will induce strong feelings of gratitude for even the simplest of milestones and produce a willingness to do anything, talk to anyone, try any method necessary to make life better for your child. Side effects include feelings of worry, fear, uncertainty, and anger but are tempered with love, faith, determination and hope. Having a child with SB is not easy...but loving one is. ♥

Written by Joanna Penny

Take that Spina Bifida!

I feel like Madi is saying, "Take that, spina bifida!"  in this picture.  This photo really captures her amazing little personality... she lives with so much joy, and brings so much joy to those around her!  She has such a great sense of humor as well.

P.S.  Madi's middle name is "Joy" after my mom (Lynda Joy).  I think she's living up to her name quite well :)

P. S.S.  There are actually Take That Spina Bifida!  shirts for sale for a great cause.  If you would like to check it out, head to

Sunday, October 9, 2011

A Great Poem

I had to share this poem written by Tricia Proefrock.  I love it!

Dear mommy,

I have felt your tears, falling on my face.

... Someone else might think they are tears of sadness, because of what I can't do.


I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.

Someone else might think you are ashamed of having a child like me.


I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.


I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.

I know your body hurts, because I'm getting so big.

I know that more than anything, you want to hear me say your name.

And I know you worry that you aren't good enough, and that you will fail me.


I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. ♥

Saturday, October 8, 2011

Who Cares?

Sometimes I think back to all the things the doctors said about Madi and what our lives would be like.  They made it sound like such an awful thing that she might never walk.  They made cathing seem like the end of the world.  They said she might have a learning disability.  And you know what I say?  WHO CARES!  I get to love on this vibrant, life-loving, adorable little girl every day.  Nothing else matters.

Friday, October 7, 2011

Guest Bloggers

We are guest bloggers on two other sites.  Check us out!

Spina Bifida Stories: Julia

I was born in Indianapolis in 1960 and of course in those days no one knew ahead of time that their baby had SB until the baby was delivered. I was my parents’ first child and there was no history of SB in the family. I have a brother 3 1/2 years younger than me without SB.

I was born with lipomyelomeningocele at L5/S1. A couple of very good doctors were called in and they closed my small lesion and removed a piece of skin that was hanging by the opening. Unfortunately, I got meningitis and was very sick for a number of weeks, spending about a month in the hospital. One doctor told my mother when they weren’t sure whether I would make it would be just as well if I died because with the SB and the spinal meningitis, my brain would not function properly--and I’d basically be a vegetable. Yes, those were the words they used back in those days, and I cannot imagine a mother hearing that about her firstborn child—or any child!

Needless to say, SB kids are fighters, and I survived. As an infant I wore shoes with a bar to turn my feet straight, but I eventually started crawling and pulling myself up and walking (without the bar, of course) at about 13 months. My mom thought this was “late” but my own daughter, who does not have SB and is also a first born, started walking about that same age, so apparently 13 months isn’t that unusual for kids to begin toddling.

I had a bladder/ileal colon surgery when I was barely age 5. I won’t go into all the details, but I remember being VERY happy about it, running around and telling all the neighbors about it when I got home from the hospital, lol! This type have surgery has been improved upon over the years, but it worked for me, and has served me well for 46 years. So take heart about that, moms of SB kids!

I had an unusual gait, of course, and over the years I had numerous surgeries, leg braces, and even a cast at age five to try to turn my foot straight (no surgery—just a cast!). I wore a leg brace on one leg from 6th to 9th grade. I attended two public grade schools and both times my mother marched me to the principals’s office before school started to show the principal I was just fine on my own. In those days, disabled kids weren’t really attending public school, so I know my mom had to try to convince the school I would do fine. I was indeed the only “handicapped” kid at both of my schools, so I got a lot of comments and sometimes rude remarks about the way I walked or about my brace. However, I also had a lot of nice friends at school, so that called less attention to my being “different.”
A lot of people asked if I’d had polio, even though polio had basically been eradicated in America by the time I was born. But people knew about polio; most had not heard of Spina Bifida or knew almost nothing about it.

Through grade school and high school, I had surgeries every few years: tendon transfers, bone rotations, foot corrections, spending time on crutches, full leg casts, walking casts, and wheelchairs. Since I have little sensation in my legs, the surgeries didn’t hurt all that much, and I actually felt in some ways “special.” I did have achy legs for a number of years on very rainy or snowy days. At 25 I had my four hammer toe bones fused straight (left foot). Funny story: I fell down the stairs in my lovely wooden hospital shoe and toe pins after the surgery, bending my pins! So, I DO have fused bones, but they are anything but straight, lol!
My teen and adult life has been pretty normal: I went to public high school, won awards for art and writing, got a part-time job at age 15, drove at 16, went to college out of state for my BS in Graphic Design, did internships in various states, backpacked Europe (alone) for three months, graduated, moved far from home for my first job, got married, had three kids (very easy to deliver babies when you have SB, btw--#3 was accidentally born at home!!), worked for various companies at each of the five places we moved to, taught adjunct in a college, and started my own freelance editing business.

The only really major SB event in this time was at age 40, when I realized my walking was getting worse (well, I actually started when I realized I was having trouble getting up from a squat), I had an MRI and learned I had a tethered spinal cord. Like a rubber band, it had been stretched for all these years and was just giving out. They didn’t usually check for TC routinely back in the day, so I had never known! So, I had TC surgery done in Chicago at age 41. My balance was pretty bad by this time, and I was starting to use a cane (which I still do). The surgery had some complications that required a revision and then four months lying flat in bed trying to get a pinhole leak to heal (it was leaking spinal fluid). It healed, I went back to work, caught West Nile Virus—a spinal fluid condition of all things!—and the pinhole reopened. Three more months in bed and just about the time they were going to put me in the hospital to try drain my spinal fluid away from the pinhole for awhile, it healed! Woohoo!!!

Having a good sense of humor, and parents who encouraged independence and trying a variety of things to see what I was good at (and encouraging those things--like my art and writing) were some things that really helped me get along with all kinds of people despite my SB. That is not to say I never felt (or feel) different, or that people never felt uncomfortable around me (at least subconsciously). It just means that growing up I was able to laugh (at least later!) at most awkward situations caused by my SB and that I rarely thought much about my physical limitations, instead focusing on things I enjoyed doing and felt I had a special talent for. Guess I’ve done OK for a “vegetable.” : )

Thursday, October 6, 2011

Picture overload from our vacation

Fist off, sorry the pictures are so out of order.  I could fix it, but I'm tired, so I will leave it like this for now :)

Papa and Madi
Madi is wearing her adorable dress that my mom (grammy) made her.  She LOVED it!

Conner and Kyla
Disney was all decorated for Halloween.  It was awesome!

The whole gang

Madi and Grammy
Madi showing off her new (adorable) hat

On the beach.  It was beautiful!

Madi at the zoo being her typical self :)

At the zoo

There were so many starfish at the beach, it was awesome! 

Madi loves Tinkerbell.  This gal didn't look so 'tink-ish', though, so Madi kept asking where Tinkerbell was.

Lunch with my birth mom, Deana, and half sister, Lindsay.  We try to meet up with them every year and always enjoy our time together.

I love this picture of the kids, and can't wait until we have a third kid snuggling up close for pictures :)