The House That Jade Built

St. Louis Update

2012-02-15T10:40:00.000-06:00

Well our prayers were heard & we had an awesome day!

Ollie is growing & developing very well! They were pleased with how verbal she is & loved her flirty personality!!

As far as her cardio appointment, I cried happy tears! In August we knew she still had a small hole (VSD) in her ventricle by her patch. It wasn't much of a concern but it was there. Yesterday it was gone! The hole has grown shut - praise the good lord! Her valves have mild leakage & he said it is unlikely she will need a future surgery, however he can never say never - but I sure as heck love the word unlikely! We don't revist him until another year ticks by!

Her ENT appointment went as we expected. She does have fluid in her ears & ear tubes will be placed March 8th. We are happy about that and hope it cuts down on the colds & ER trips she has in the future.

The rough moments in the day were the blood draw & the ear check. I hate stuff like that for her. During the ear check they swaddled her and held her down & cleaned the wax out of her ears then examined them - they are just so small there is no other way. She has now created a new defense mechanism similar to an octopus. In a fit of rage I heard her belly rumbling & she crapped 'em clear out of her diaper & all over their table. That's right - she showed them who was boss!

Heart-full Prayers

2012-02-13T09:00:00.000-06:00

We are going back to St. Louis on Valentine’s day for a full day of appointments.

June 2011

July 2011

Endocrinology, Cardiology, Down Syndrome Clinic, Hearing Test, ENT appointment – can you say Snickers in my bag for when Jade becomes a diva – umm yeah – one will be packed!

January 2012 – that scar is so faint now!

Please lift up Ollie Faith’s name especially regarding her cardiology appointment. Her last checkup was in August & at that point she had a small VSD leak by her patch. We are hoping that is resolved & that her corrected valves look fabulous too! We are also hoping to talk her ENT into tubes. She’s been sick a lot this winter – multiple ER trips for croup. We think tubes would help because when Aubrie was sick a lot they certainly helped her.

Thanks friends as always! Oh and a special thanks to Grandma Janie & Grandma Ruru for hitting up Everett & Aubrie's Valentine's Day parties in my absence!

Ollie Faith Wants To Have A Good Time!

2012-02-11T16:08:00.004-06:00

Last night we had the big shin dig!

We had a small family party at our house & Ollie Faith brought the fun!

We had party hats & smiles, well most of the time!

We all can’t believe a year has gone by!

The bigs were wound up in a big way! Presents and cake…

oh my!

Because we have a deep love of Minnie that was the theme & the cake was amazing, and Ollie Faith sized!

She had no problem digging right in

She ate & ate & ate cake

with pink fingers and a sugar high she got a little crazy

and decided she also needed the forearm to shovel it in!

and yes today – I had a big fat stinky pink diaper to boot!

So one last happy birthday my sweet! We adore you!

Help me please..

2012-02-11T07:54:00.000-06:00

OK so last night I got an email after Ollie's party that Ollie's pictures have been taken from my blog and are being used on a website called Orkut.

From what I can tell and the little I learned on google it's a social networking site mainly in India & Brazil and a lot like Facebook. They have used Ollie's pictures as their profile pictures.

I'm not sure that it's to be mean, but maybe a weird fascination with Down Syndrome or that let's face it's she is a very cute kid. None the less - I need as many people to report it as possible to get it down. Please help me. And yes you must create an account before you can see these websites.

Link 1: http://www.orkut.com.br/Main#Community?cmm=115446769

Link 2: http://www.orkut.com.br/Main#Community?cmm=117164761

Yes, if I could find them I would beat the tar out of them, but alas I can't.

And I thought a lot about this last night. Jade wanted me to shut down my blog because this is where they found my photos. I just don't feel I can and here is why.

I truly believe the devil doesn't like the joy that kids like Ollie Faith bring to this world.

My blog advocates & educates people about Down Syndrome. I'm trying to rid the world of ignorance when it comes to raising a child with a disability. I'm trying to save lives, perhaps some Mom considering abortion will see my blog & choose life for her child - whether she keeps the baby or chooses adoption - it's still life. I'm making a big impact on a lot of people & that gets the devil fighting mad. He hates the fact that she has given people faith and hope. He hates that perhaps someone found God because of her life. He probably hates her.

But you know what, the devil can suck it. Because I'm not stopping for him.

A year of awesome...

2012-02-10T08:30:00.000-06:00

A year ago today we were anxious, scared, excited, worried...basically full of every single emotion you have when you go to deliver a baby, but dialed up about 100 times. We didn't know for sure if Ollie Faith had Down Syndrome & we didn't know for sure how bad her heart truly was & what kind of hospital stay was ahead of us. And trust me we tried to pray all of the above away - we asked for a big miracle. We received an even bigger one.

She was born February 10th at 8:23 PM weighing in at 7 pounds 10.8 ounces and 20 inches long. She was much larger than her anticipated size of 5 1/2 pounds. Further proof that multiple ultrasounds are never 100% accurate.

We took her home on Valentine's day. She had a longer hospital stay because of jaundice, but we finally brought her home waiting for heart failure to kick in. She did have the bonus chromosome & her heart defect was certainly present - the ultrasounds did have those parts right.

She was perfect & even more perfect was our family together again & Aubrie and Everett loving on their baby sister.

In March she was in full blown heart failure, but oh her personality certainly out shined any medical issues she had.

In April we celebrated Easter & the love that Jesus has for us. Church was always our safe haven when the nerves took over facing open heart surgery. Oh how we love our church and thank God daily for putting it in our lives.

In May we snuggled a lot & prepared for open heart surgery. I cried a lot too.

We passed out 3,000 prayer cards - they were all over the nation, in various countries too, & spread like wildfire through our community. Everyone loved on Ollie Faith & us. The prayers were overwhelming & gave us strength during some very tough days filled with worry.

I took lots of pictures of that sweet scarless chest before.

June 9th she had open heart surgery. Words can't describe the feelings we had that day or leading up to it. It was hard, but it was worth it. She was worth it.

Holding her for the first time on day 3 was just as good as the day she was born, probably even better.

After we went home on day 5, life has been wonderful.

We celebrate every milestone in a big way.

We slow down and savor the kisses, hugs, and smiles.

We soak up our little girl also known as Tiny. She is a ray of sunshine in our home.

We used to fear the unknown. We used to fear Down Syndrome.

Now we know Ollie is a baby, and she just happens to rock an extra chromosome. We also have gained a new community of friends with families and kiddos just like ours - it's fantastic!

She decided her personality was just too big for 46 chromosomes, so God went all out and gave her a little extra.

and that extra has made all the difference in our lives!

So today we celebrate what has most definitely been one of the craziest roller coasters of our lives. We had our hands up on the way down screaming all the way, and when we pulled into the station, we had big smiles on our face & proclaimed that was one awesome ride.

We have now walked the walk.. And we can most definitely say our life has been blessed in the biggest ways. Thank you God for this little girl! She is going to change everyone she meets for the better & she started with our family of 5 first.

And thank you friends - thank you for the cards, love, support, and most of all prayers. We couldn't have went through this journey without you & you truly mean the world to our family!! Thank you time and time again!!

Stay tuned - birthday party post will be up in a few days - tonight we are living high on life like hogs on cabbage! There is birthday cake being served tonight!!

Bravo Mama, Bravo

2012-02-08T15:46:00.000-06:00

Last year I stumbled upon a blog.

On that blog I found two of the most amazing kiddos I have ever seen. They both had open heart surgery & as I read through all their stories I realized, oh my goodness - the little boy had open heart surgery in St. Louis!!

I e-mailed their mama thinking I probably wouldn't get a response, boy was I wrong. She was amazing. She answered questions, calmed my fears, and gave me very useful information I hadn't even considered.

Her name is Courtney & I'm telling you her blog is full of wit, sass, and laughs. It also has a lot of wonderful information & activities. I love it. It's one of my favorites. And those squibs of hers are by far two of the cutest little things I have ever had the pleasure to squeeze on - yes I got to meet them in St. Louis & LOVED it!

Anyway, Jade & I have talked about inclusion in the past for Ollie. He didn't understand it. We always grew up with kiddos like Ollie put in a special needs classroom. They were not integrated into our classes other than PE. It's a different mindset to push inclusion. I am kind of for it because after school, Ollie will be living & socializing around her peers. It's important to have good social skills.

When I read Courtney's blog yesterday the whole time I wanted to cheer because she is so right. I don't merely want inclusion. I want integration. No matter where Ollie ends up, as long as she is an integral part of her classroom & truly important to her peers. I will be happy.

So today, I will be looking for ways to make Aubrie & Everett more integrated in our home because this doesn't just apply to Ollie, it applies to all kiddos. Click here to read her amazingness especially if you ever deal with kids!

Are you sitting down??

2012-02-02T15:13:00.004-06:00

because girlfriend is bringing the cute!

and maybe a little weird too!

Teeny tiny goes back to St. Louis on Valentine's day for a full day of appointments. Please add her to your prayers as we meet her cardiologist & pray that the small leak has healed up post surgery! We haven't had an echo since August so God had lots of time to move! Thanks friends - we heart you much!

Wakeup call

2012-01-29T14:20:00.000-06:00

I have a little "old" man that lives in my house.

He wakes up with the sun daily at 5:30 - 6:00 without fail.

No matter how late he stays up, he's always up with the roosters.

What's he doing you ask?

Oh that's right, taking a big ole deuce and screaming throughout the sleeping house "I'm done! I.AM.DONE!"

Somedays being a Mom is a stinky job - literally! Ha!

How I wish...

2012-01-28T14:14:00.001-06:00

that I could bottle up this smile

and sprinkle it around the world

so others could feel the joy that she brings to our family!

Love.this.girl!!

Do It For Yourself

2012-01-25T11:30:00.001-06:00

OK if you are a Mom like me, I highly doubt you take much time doing anything for yourself, and when you do you have that creeping Mom guilt.

You know - you go out to dinner with a friend and feel guilty the entire time that you aren't doing something with your kids. We all do it.

Well what are you doing for yourself lately? I mean seriously are you investing into you? Because it makes us better moms, wives, friends, women if we take time for ourselves.

People ask me all the time how I have the energy and time to exercise. It's honestly the one thing I do for myself every day. Being a stay at home Mom sounds like I have all the time in the world - wrongo! Have you ever watched 3 kids during the day that are 6 and under and add to that two kiddos in the basement that are running around some days too? The house is a perpetual tornado. I do laundry & cleaning constantly. I'm changing diapers, wiping butts, making food, cleaning up food, rocking babies, stopping fights, helping them with their crafts or games. Don't get me wrong - I LOVE it! It's the perfect job for me, but free time - yeah right. I can't even pee without someone watching me!

So I exercise every day, just for ME. Not for Jade, not for the kids, for ME. I put on a movie for the bigs, Ollie plays in her exersaucer & I sweat it out. Yes, I get interrupted, but at least I get it done. I feel unbelievably better, I have more energy, I'm proud of myself, I'm comfortable in my own skin, I burn off frustration, I'm happier. The list goes on and on the benefits I am having. Plus, I'm healthy for once. I'm no longer overweight. My knees don't ache, my back doesn't ache, I'm not exhausted after I just wake up.

So yeah maybe time is short for you, but how are you spending your time? Do you blow 30 minutes on Facebook, on blogs, an hour watching Grey's anatomy or your favorite shows? I'm betting yes because I did. So I urge you to take time for yourself today. If you need a push - contact me! I would LOVE to help!! I'm a FREE Beachbody fitness coach because it changed my life & I LOVE to help others take control of their health too! It may take a small investment, but aren't you worth it really??

This WAS me! Size 14 - now I'm a size 6 - BOOM! Gotta love me some Beachbody baby!! And if I can do it, so can you - ANYONE can do this! Beachbody offers so many programs from beginners to advanced & I can help you find the right one for you. So reach out to me and join one of my small fitness groups to gain support! Where else do you have a team of friends pushing you toward your goals and cheering you on? Nowhere else but Team Beachbody!

Nutrition + Support + Fitness = SUCCESS!!

housethatjadebuilt@gmail.com

What I wish I knew...

2012-01-21T15:12:00.000-06:00

When I was pregnant with Ollie I was scared. I didn't know what this "new" Mom life would be.

Here is what I wish I knew before she arrived...

How beautiful she would be, she's truly gorgeous!

That her giggle would still be as sweet to my ears as Aubrie and Everett's.

Love doesn't count chromosomes.

She would bless me in ways I never would have comprehended before.

She would build my relationship with Jesus.

That she's a baby, not a diagnosis - I forget she has Down Syndrome.

That from the moment I first saw her, that I would be overwhelmingly happy & in love with her and that extra chromosome.

That I'd look back at open heart surgery & view it as a blessing not a curse.

That I would love her tiny little hands so very much.

That being her Mom is easy.

That people sometimes stare, but it is because they need me and her to educate them. We make a good team.

She would enrich the lives of her older brother & sister, not burden them in anyway. They adore her!

I would learn patience, and would slow down to celebrate every.single.milestone. Her newest is clapping - I cried...I couldn't even tell you when Aubrie & Everett clapped - isn't that sad!

That she would nurse so well and exclusively that weaning her would freak me out...but I have to do it soon!

I knew as a mother I would always fight for what is right for my children, I'm learning that fighting for her will be at a whole new level, and I'm ready for it.

That the book that listed every single medical condition she would have, was mostly wrong, but in some parts right. It used to scare me, now I know her better than anyone and know more than her doctors in most cases.

That the Down Syndrome clinic in St. Louis is a must - we had thought it wasn't a need when I was pregnant - now we are SO grateful for it!

That most people think they know all about Down Syndrome and about 99% of those people know diddly squat.

She would take my strong marriage to a brand new level - she made Jade & I even better than before!

That I would be able to juggle all her medical and therapists appointments with no problem and be sure I'm around for the bigs too.

That she would be another piece of my heart broken off, walking around outside of my body. I love you so very much tiny.

I could go on and on and on. The truth is, I was scared for no reason. She's a child of God. She's a gift from HIM. She's a beauty and I am blessed time and time again to be her mama.

For anyone that stumbles upon my blog & that has a prenatal diagnosis of Down Syndrome or a heart defect. Please feel free to email me at housethatjadebuilt@gmail.com I would love to hear from you and help in anyway that I can. When I was pregnant, my greatest resource could not be found in any book, but in the lives of kiddos just like Ollie Faith. Their lives and photos shared with me on blogs built me up and strengthened my heart. Their Mamas poured their hearts into mine and for that I am forever grateful - it is now my job to pay it forward.

One More Day of Play

2012-01-20T14:18:00.000-06:00

When we bought our tickets it was buy one day get the 2nd free at SeaWorld...so rightfully so we took advantage.

We saw some things we didn't get to see the first day.

The kids are always in love with the dolphin tank!

Teeny tiny is always in love with her chicken.

It was a nice paced day.

We are all sad.

Tomorrow morning the kids get to swim then we are packing up and heading back to reality.

We have some loved ones at home that we want to kiss on, but man we wish we could stay another week!

These kids & my husband are just far too much fun for one week of vacation!!

Until we meet again - Florida we love ya!

Chef Mickey's & Downtown Disney

2012-01-20T07:43:00.002-06:00

Yesterday started off with a giant hitch. At 4:30 Miss O woke up having trouble breathing with croup. We fought the good fight at the condo - steamy bathroom, cool night air over and over until it was under control. Our pediatrician is the bomb diggity & called in a steriod prescription for her so she's on meds and now you can't even tell she's sick. During the day it's remarkable how much better she is!

We had a mid-morning brunch appointment with Chef Mickey.

It was awesome!!

All of the characters came through and hugged on the kids. It was fantastic!

The kids were ecstatic!

Ollie was less than enthused, but participated.

Then a celebration song came on and we were to swing our napkins around like helicopters. Reminding me of a song I used to dig in college...

Then we went to Downtown Disney. The lego stuff was amazing!!

Woody and this dragon were all made of legos!

The rest of the day we spent at home - the bigs and Jade hit the pool and me and Ollie hung out in the condo.

Gotta go we're off to SeaWorld again!

Animal Kingdom Antics

2012-01-18T19:45:00.001-06:00

Today we hit up Animal Kingdom.

It was a great time!

I took the kids on the ride Dinosaur right off the bat - they both declared they did not like it and would not ride it again. It was too scary! Ha!

Everett refused to be in most pictures so enjoy the Aubrie show!

He was mad that we wouldn't pay for him to play all the carnival games so we let him "play" - he thought it was fun for some reason.

Aubrie also took the crazy roller coaster ride up the mountain behind them - it was crazy fun! She also did not like it.

They couldn't resist the drums!

The bird show was a huge hit!

Jade & I brought in our own Great Horned Owl - she was cuter than their owl.

Then it started to rain and they canceled the parade - boo!

But we made the most of it and went to the Lion King show & Everett & Aubrie were asked to participate. Aubrie was too shy and said no - Everett was all in!

We wrapped up the day at the Rainforest Cafe - Everett's posing kills me!

Tiny was worn out from a long day & slept all through dinner.

Mega drink - yes I think so!

Jade & I are looking forward to an "easy" day tomorrow! Breakfast with Mickey & Minnie and some Downtown Disney!

A Magical Kingdom

2012-01-17T09:38:00.004-06:00

Yesterday was a long but awesome day!

We started out right at the Magic Kingdom.

It was like the mother ship (the castle) was calling us home.

We arrived probably around 10 AM and left around 9:30 PM.

Long day, but a great time & the kids were awesome.

This baby is the easiest, happiest girl around. She slept in the stroller or smiled and flirted with people all day.

The teacup ride was hysterical. Jade spun those kids so fast - I was thankful I was not in the teacup!

They proceeded to pull the sword from the stone - no luck!

The first parade was spectacular! We sat by the street and the characters came over and high fived the kids over and over!

Aubrie stole my camera - she thinks she's big snapping her own pictures - ha-larious!!

It was such a magical day. I seriously love Disney & agree with Aubrie. She said "Disney world is so great it even tastes good." Yes she's obviously my daughter!

My kids favorite characters are Mickey, Minnie, Donald, Goofy, and Pluto.

We saw them all!!

He stole the stroller all day long & his face lights up so big - makes me tear up every time!

She kept luring in the dancers with her sweet style. The girls kept coming over and high fiving her & she'd get all shy. What a cutie!

One of Cinderella's Mice kissed Ollie. I was mad scrambling trying to zoom out the camera - this is what I got...I suck I know!

This picture of Belle - is for Cline Daniel. Cline - she waved and said to tell you she loves you.

I told you - Aubrie was rocking mad style!

Everett was a shoulder rider if he wasn't in the stroller. If Jade turned his body anyway Everett did not like he'd jerk Jade's head the opposite direction like a horse. It was killing me!

Aubrie tried out space mountain & insisted on sitting in the front car. You ride single so I wasn't sitting by her and the entire time I was wondering if she was crying. I loved it, but it was pitch black and curved like crazy. When we got off she wasn't crying, but she said she was NOT doing that again.

We spent 3 hours at the castle in the evening. They had a character dance party. We shook our tail feathers and danced in the street with Donald.

(PS that is NOT my body next to Aubrie!)

Then we watched the most amazing electrical parade where the characters were lit up in Christmas lights & so were the floats. They had this amazing show on the castle where it was lit up in fiber optics and the entire castle changed images & projected pictures of people in the park all day - it was amazing. The fireworks followed & Tinkerbell flew right over us. The kids squealed! I'm telling you it was spectacular. Oh and yes no pictures of all this because my camera battery died - so my luck!

Such a great day!

Today we hit the pool!

What A Trip!

2012-01-15T19:36:00.000-06:00

The trip down was a long one.

Ollie was happy as long as she had her chicken and a dvd facing her new seat.

She rode like a champ! Such an easy baby!

Even the big kids were good.

We expected to be asked "when will we be there" a bajillion and twenty times.

Aubrie asked if we were half way there before we left Shelbyville - oh yes she did! That was about it though, they watched movies, played DS, and slept a wee bit. We stayed over in Atlanta - I slept awful.

I drove 2 hours - Jade drove 14 - he's the bestest that way!

Have you heard that people with DS are ALWAYS happy? Why yes - so true - this picture proves it! Ha!

We stayed at a Nickelodeon hotel when we arrived and I tried to take pictures - this was the best I got. Sorry you will have to google the resort to see what it was really like.

It was 58 degrees & the kids insisted on swimming and further insisted that the pool was as "warm as bath water". Mmm hmm sure I bet it was!

Today we hit up SeaWorld. How many butts can you fit in a stroller? Two, if the tiny butt lets her undies hang out & the bubble butt puts his hat on ghetto style.

They marveled at the dolphins

they laughed so hard at the sea lions that people turned around to see what kids were giggling

they jumped at the opportunity to look over every.single.waterfall. Yes we don't have decorative ponds in Shelbyville!

And they posed with polar bears.

All in all it's been great! Tomorrow - Magic Kingdom!!

And We're Off!!

2012-01-13T12:29:00.004-06:00

Pray for Jade and I as we caravan the minivan 16+ hours to the land of sunshine, gators, and last but not least characters. That's right we're headed to Florida and going to stop in to kiss some of our favorite friends while we are there!

While you wait for new posts filled with my crazy kiddos - here are some of my favorites from our last vacation.

Oh and Ann - prepare yourself for the tornado also known as the Reid kids - they are going to blow your mind!!

Oh and if you were thinking about ransacking our house, sleeping in my bed, and eating our food - you are gonna have to fight off Maggie Jo - I know that stinky rat is going to be tucked into my king sized bed living it up!!

Schooled

2012-01-10T08:19:00.001-06:00

Today is an education lesson.

I wrote a blog about the Blessings of Down Syndrome in June. If you don't want to read it - the just of it is that Down Syndrome has blessed us beyond measure & I am concerned about a new blood test that can now diagnosis DS at 12 weeks prenatally & much more accurately. The current abortion rate is 90%, the Down Syndrome community fears that this number will be much higher than 90% because of this blood test. That's right Ollie Faith is the 10% that survived Roe Vs. Wade because she has Down Syndrome. I believe a large number of these babies aborted were planned, but because lack of education parents are scared and they are led into the mindset that abortion is best because they aren't handed the proper education tools. I also do have sympathy for these parents because I know that single decision will be with them the rest of their lives. My main goal of this blog is educating people about Down Syndrome - because let's face it - all of society think they KNOW so much about Down Syndrome and frankly they don't. They know how to spot a person in a crowd, but to know what that means to their life, they are pretty uneducated.

OK now that I summed it up here is a blog comment I recently received and I want to address it.

I'm sorry Becky - I know you feel like you have a valid opinion because you are pediatric nurse, but the fact is you are not a Mom raising a child with DS. I am very doubtful that you have truly talked openly with these parents to know what they are feeling. I believe you have assumptions of what they are feeling, but you know the saying to assume makes an ass out of you. I'm not trying to be hateful, but I do feel like you need educated on several points.

"I enjoyed reading your blog and I am currently 5 months pregnant and will be 35 at the end of my pregnancy. I am not trying to get anyone upset but I just want to put another opinion out there. I am a Pediatric nurse and also would not end a pregancy based on just down syndrome but I think as a nurse you need to not judge those that do. I care for lots of families with Down Syndrome children and there are several levels of functioning and illness that also incorperate DS. The risk for lifelong cardiac surgeries and hospitalizations is a possibility and the risk of leukemias can also be higher. Some families do make the decision out of fear, but I think for some families it is right, I have seen so many strong marriages devistated by the trials of having children with high medical needs. When you see that little baby of course you want to do everything to save that child and give them a chance at life but doctors don't always share the other side of what can happen if your child does survive with extrodinary measure taken after birth. Some families live at our hospital for years and then have to come to terms with the death of that child later and I know "One more day" is a great song but I often wonder if their pain would have been lessened if extrodinary measure had not been taken and thier family might not have been ripped apart. One person's story of a child with DS is never the same as the next. Yes the DS children that are heathy and high funtioning are a wonderful gift and so sweet. But the decision once the news if given that your child has DS should never be taken lightly, parents should think do they have a good support system, sadly do they have good heathcare, or jobs that support them not always being available, can one parent not work, if they have other children who will care for them if they have a child with high medical needs (mom is at the hosptial and dad has to work), are you willing to focus your life on that child and not on your spouse or other children, because physically you can not do it all! We often have children who are in the hospital for months and their families just go on without them care for their siblings and visit once a week, even go on to have more children. Thank God for these children there are nurses to love them. These families are the ones that should have thought harder about the decision to birth that child. There are people that foster DS children specifically and they are in and out of the doctor and hospital all the time, it is a commitment. Last week this foster mom, said "What's vacation" when I told her about my holiday trip. You need to put it into perspective. I am glad that Ollie is heathy and doing great, what a blessing, may she continue to strenghten your family as you endure regular challenges of raising a child with DS."

Point 1: When you have a prenatal diagnosis at 20 weeks pregnant, like I did, no doctor can view and ultrasound and say "He or She will be high or low functioning." Not possible. Nor can they truly tell you the level of health your child with Down Syndrome will have and if your child has an issue they still don't have a clue how many surgeries you need. True Ollie is healthy now, but she was in heart failure for 4 months pre-Open Heart Surgery. Handing her off was the hardest thing I have ever done, but it was worth it. If we would have lost her due to surgery I'd still thank God for her because she blessed us so much in 4 months. Now, just because her heart is fixed don't assume she's as healthy as a horse. We have had 3 ER trips this fall with respiratory issues. But she is still WORTH it. And my other two kids have had ER trips & days of me staying home too - that's part of parenting.

Point 2: There is NO guarantee with any child that they will be 100% healthy. I know typical children that had closed and open heart surgery, that had strokes in utero that have impacted them forever, that were in terrible car accidents, that have cancer. The fact remains that ANY baby may have a serious medical condition that could be the same as you listed & cause medical stays, and if you worry about this - you shouldn't ever have children period.

Point 3: It's been researched and families raising a child with DS have a LOWER divorce rate than typical marriages. Boom - that's right I said it. Perhaps we know something that people with typical kids do not. Probably because we have learned to slow down and appreciate much more in life. I can't explain how Ollie has changed my marriage because shit - that's right I cussed - it's been a hard year - but I am closer to my husband than ever before because we needed each other so much more. This past year has made my marriage stronger.

Point 4: Did you know on average in the US the wait to adopt a child with DS is 3 years? Yes that's right, 3 stinking years for babies that are aborted 90% of the time. Why is that? Why do so many families wait to adopt these kids? It's because we know the SECRET. God let us in on HIS plan. Kiddos that have Down Syndrome are special, but not because they are special needs, because they enhance our life so much more! Why aren't more people doing adoption instead of abortion, well it's harder. It's a hell of a lot harder to hand that baby over to someone once you see it and there are emotions tied to that, so abortion seems easier.

Point 5: How are we any better than Hitler if we abort children because we "fear" the stuff we don't even know about them? Should we line up all the chronically ill children and gas them because they are destroying "strong" marriages and families? No, absolutely not. That thought is absolutely disgusting right? Well, how is aborting 90% of children with DS any different? It's not, it's just not. The only difference is we are killing them as babies before they take their first breath.

The fact is, and I believe this whole heartily, God is in control. It is up to HIM, not us to decide who is worth life.

I still stand by my decision to keep Ollie Faith. It was right, and I was rewarded big time with that baby girl. I have NO idea what her level of functionality will be down the road. And God forbid she develop leukemia (which yes I'm aware her odds are much much higher), but you better believe my husband & I would make it work, and we wouldn't regret her one itsy bitsy bit.

Mobile...

2012-01-09T10:00:00.000-06:00

Oh yes,

girlfriend is crawling!!

It may be the inch worm, but she's doing it.

Well, she's been doing it for sometime, but neglectful blogger failed to blog it until now!!

What's Goin' On

2012-01-08T16:34:00.001-06:00

Aubrie Grace has lost her 3rd tooth!

You know what she asked the tooth fairy for??

100 pennies to buy everything in the store with!

Everett Mason has declared that Wendy's Frosties are so good,

they taste just like Disney World!

and how right is he?

Disney World is so stinking great you can taste the happiness when you are there!!

Tiny has tried out eggs - she is working on the pincer grip.

She also has a new big girl car seat in which she still looks tiny.

We leave for Disney Friday - watch out Mickey - the Reid's are gonna be back in town!!

Resolutions

2011-12-31T10:00:00.000-06:00

2012 is our year!

We are going in strong & excited for our sweet family!

Very soon Jade turns 32

We head South to Florida for a much needed vacation & plan to hug on Mickey & Minnie too

We celebrate Ollie Faith's 1st birthday!!!

We celebrate 8 years of marriage

I turn 30 - what?!?

We celebrate Ollie's one year heart hero day!

Everett will be 5 & Aubrie Grace 7

It'll be 5 years in our beautiful home

We've had a rough go this year & are really looking forward to a year of big celebrations!

My resolutions:

Date my husband much much more because he makes me happy

Wear smaller pants, yes even smaller pants

Help more people start healthy lifestyles - I addicted to it!

Live for the moment - savor today because tomorrow my kids are a day older

Happy New Year dear friends - may God bless you abundantly in the coming year!!

~Annie

Six Years

2011-12-20T09:58:00.000-06:00

It goes by in the blink of an eye.

You bring home the most adorable bundle of joy that smells so sweet.

Before you know it she has teeth and sits in a big girl car seat.

Another year is gone, she is a big sister to one and sports her own set of glasses.

Then, she's 3 years old and she seems so grown up!

At four she's in preschool and such a big girl.

Then she turns five and she becomes a big sister again, and is such a big helper.

She has experienced a lot! Kindergarten all day, new friends, the school bus. Every year she grows and changes - here is to six - may it be the best year yet!

We love you Aubrie Grace!!

Christmas Angels

2011-12-19T15:22:00.001-06:00

I have two more Christmas Angels to blog about today.

Daniel is half way to his Christmas goal of $1,000 - help him reach that goal!!

and Abigail who is also half way to her Christmas goal of $1,000.

Please if you can donate, make a gift to their fund. They are beautiful kiddos just like my Ollie Faith patiently waiting to be loved and adored!

Here is a link to the fundraising efforts of their Christmas warriors - they are selling blankets to help bring these babies their families.

And if you can't donate - PRAY, POST, SHARE! Ignorance is bliss, but don't let your eyes be shut to this need anymore.

Par-tay!

2011-12-18T09:46:00.004-06:00

Last night we threw a shin dig.

It's Aubrie's favorite time of year!!

She has a count down paper.

She turns 6 on Tuesday!!

Can you believe it!!?? Six years old!!

We celebrated turtle style.

(PS. Jodi Large makes cakes that are the business!!)

Maggie turns 25 on Monday so she celebrated too.

Birthday cake hat was out in full force.

We sang...

We laughed...

We did a pinata in the bathroom...

Everyone had a great time!

Especially the pinata participants!!

His Tool...

2011-12-17T15:22:00.002-06:00

I had an epiphany today.

Have you ever stood in church, head bowed, praying so hard that God USE you. That he make you a tool for his will? That he will show you your true purpose.

I have many times. I always expected that answer to come in the form of "Sunday school teacher, sing in the choir, welcome team, etc, etc." Don't get me wrong - all amazing jobs, but they never have came to me.

Today I realized that sometimes God answers this prayer through a storm. He gives you the biggest storm of your life and calms you through it, and how you react is how he uses you.

I realized he is using me & has been for some time. He handed us a diagnosis of Down Syndrome & heart defect for our sweet child. He watched us mourn, he watched us fall apart, he watched us put back the pieces, he watched us bring her into the world, he watched us fall in love with her, he watched us hand her over for surgery afraid to lose her, and he held our hands as we waited for her to heal up and head home.

It was a storm. It was brutal to my heart at times. The memories make me cry, and some of the thoughts I had during that time make me ashamed of myself. BUT through that storm I praised him. I knew he knew what he was doing and I knew he knew what was best for our family, and did he ever.

She is the perfect child, the child we wanted so badly. Even when society sees her as imperfect & pities us for they know no better - I pity them because they don't have a child like her. We are blessed!

Through this journey he grew our faith so we could be his tools. If you can survive through the worst you can sure as heck appreciate his best!!

Now I get to pray for friends going on the same journey I was on. I get emails & I get to encourage these other women & Moms who have breaking hearts like mine once was. I have made friends with women I would never otherwise know. I can look into the eyes of another family and have an instant connection because they too know the blessings in our lives.

It's amazing how God has been using me, and how I have been blatantly unaware that I was his tool & have been for some time for a unique purpose. I advocate for special needs, I pray for heart hero children, I donate money to bring home orphans (orphans merely because they have Down Syndrome), I mourn hard when someone in this community has a loss, I cry happy tears when someone shares something amazing.

My heart has been changed for the better. He has used this storm to shape me into a better woman, into a better Mom, into a better Christian.

So when you get handed a storm, praise him. Just praise him. You never know where he is going to lead you, but you do know that his will, his plans will be the best.

Ollie's Christmas Wish

2011-12-16T11:00:00.000-06:00

Girlfriend has a big Christmas wish this year...

We were browsing Reece's Rainbow's Angel Tree and stumbled upon another Ollie. He's sweet as pie. He shares a name and a chromosome count with our sweet Ollie Faith. But he has no mama to kiss his cheeks at night. He has no brother or sister to make him laugh to light up a room. He has no Daddy to rock & sing to him. He lives in an orphanage, and when he turns 5 he will be sent to an adult mental institution.

The larger his fund is, the more likely his family will step forward to adopt him. So I ask you this Christmas to do something for Ollie. Help him get his home, because an orphanage then a mental institution is no place for sweet babies to grow up.

Compromised...

2011-12-14T14:01:00.000-06:00

Well it happened...

at some point our credit card was compromised by a vendor. Apparently Discover card had been watching our account closely & someone finally decided to use it and blow some fast cash.

Where did the thief decide to do their business?

Naturally, QVC and Bath & Body Works!

Seriously, who steals a credit card number and thinks you know I really need some new lotion, and maybe I'll splurge on a wall flower too!

It cracks me up - you'd think they'd be at best buy blowing some fat cash, but no - Bath & Body Works is where it's at folks! All the purchases were made online - how do you do a sniff test online for lotion?!?

And the good news - Discover card caught it the day it happened & we are responsible for zero charges - boom that's why I love you Discover card!!

Merry Merry

2011-12-13T09:00:00.000-06:00

Merry Christmas!

The best way to spread Christmas cheer,

is by singing loudly

for all to hear!

XOXO

Love,

The Reid Family

Her First Performance

2011-12-12T09:44:00.000-06:00

Do you think she loved it?

Where is Aubrie?!?

I videoed the performance and forgot the camera - oops - thankfully my friend shared her photos!

Workin' Man

2011-12-11T09:25:00.000-06:00

Oh yes, boyfriend has some coveralls.

When I was little, I had a pair just like these, but I didn't wear them nearly as well.

He loves going along with them men. The rule was you couldn't ride til you could wipe your own butt...

ummm yeah he's still not doing that, but apparently when you look this cute in coveralls it doesn't matter!

So you wanna know what he's doing? Typical man work around here: chopping firewood, feeding & bedding cattle, building a house - you know the usual!

And yes - he is supervised so no freaking out.

Happy Happy Joy Joy

2011-12-10T09:06:00.000-06:00

This girl is happy 99% of the time.

I'm not talking about your regular happy either...

I'm talking filled with glee to the point you clasp your hands in happiness all day long!

It's been said people with Down Syndrome suffer from it.

Do you think she's suffering?

Heck no - baby girl is rocking that extra chromosome.

She's finally feeling better and I'm loving her big eyes.

She's absolutely gorgeous and looks so much like her brother & sister!

She's learning something new everyday. Now she can wave!!

I just look at her and think how lucky are we?

You know you want to kiss those chubby cheekers of hers!

6 months

2011-12-09T08:30:00.000-06:00

Wow how time flies. I say that I swear all of the time, but it really does.

6 months ago on this very day - you were all praying like mad for Miss Tiny.

6 months ago Dr. Huddleston took her back to his operating room with a broken heart & God moved through his hands and handed us back a repaired ticker.

Since then Ollie Faith has gotten strong.

She went in at 10 pounds 5 ounces one day shy of her 4 month birthday.

She struggled the last month before surgery to simply put on 4 ounces.

Today she nearly weighs 17 pounds!! The weight comes so easily when your heart and body are not running a constant marathon to survive.

She rolls all over the house, she pushes up, she inch worm crawls, she sits almost independently.

Tomorrow she's 10 months old.

She's vibrant. She's happy. She's addictive. She's hilarious. She is a tiny diva. She rules the house. She lures strangers in with a two teeth grin. I can't say enough because words can't describe her.

Quite honesty she's unbelievably fantastic.

Some days I wish I knew back then how I would embrace Down Syndrome & how I would grow in so many ways from open heart surgery. But I'm ever so glad I never knew because this journey has changed my perspective, my life.

We are truly blessed - God knew what we needed most - the perfect baby for us.

Miss Ollie Faith!

Thank you all for your continued prayers - we appreciate them so much and we will never be able to repay you, but when you need prayers - we are here!

Bad, bad blogger

2011-12-05T19:06:00.001-06:00

Obviously I'm too busy for my own good. Blogging is on the back burner to many other things...

Where have I been you ask?

Well, I'm a hermit in my house...I'm in my pjs, wearing house slippers, no makeup, and maybe a heart rate monitor - yeah I'm weird like that.

I'm kissing on smooch-i-licious

and rocking tiny, she's sick again and on steroids - the roid rage has reappeared

and yes - Aubrie still lives here and gets her hugs too, but she's in school during photo hour and now spending the night at Grandma Janie's after spending the night with Ruru last night - is this what it's like when they are in 7th grade and do sleep overs every weekend and you never see them? Gosh - she's still 5!

Awesome Sweet Giveaways!!

2011-11-29T15:34:00.001-06:00

Say what?

Awesome sweet giveaways - no way?!?

It's totally 100% true!

And the best part - you donate just a tiny bit of money - money you'd blow at McDonalds or Walmart in a nanosecond - and this money does something BIG!

That's right this money brings orphans home - to their waiting families!!

Go HERE & donate now and check out the awesome prizes you can win!

I even donated this necklace - you know you want a piece of Ollie Faith Designs around your neck!

Be The Change

2011-11-28T10:28:00.001-06:00

Hey guys! It's been awhile since I've posted about my fitness journey.

I wanted to share with you my new pictures because I am excited about my progress! As of today I'm down 24.5 pounds and 23.5" since I started in July.

With Ollie's heart battle, I didn't care about my own personal health, and I do think that's completely normal as a Mama. However, I quickly saw after she was fixed how bad I had let myself go and it honestly made me sad. So I did something about it.

I threw the excuses out of the window after a week of hearing my negative complaints coming out of my mouth. I'm busy. I have 3 kids. I can't find the time. I love junk food...but those were all excuses because I did find the time to watch all my favorite television show, and I was aware of everything going into my mouth & later my butt.

So I committed to get success. I now workout about 6 days a week. I did TurboFire for 10 weeks and I'm into week 9 of P90X. I also drink Shakeology once a day - it's amazing stuff!

The thing is that if I can do it, anyone can do it. And we all owe it to ourselves to be healthy. I never realized before Ollie the importance of our health, but it's truly one thing money can never buy and when your health is gone - you can't replace it. So now I workout for myself, for the energy it gives me, and for how stinking good I feel. I also workout for my family. So I know I'm here for as long as God wants me here, and so I can teach them the importance of a healthy lifestyle as well.

If you are interested in making a change, please email me at housethatjadebuilt@gmail.com I'm starting a private small group fitness challenge January 2nd on Facebook. Beachbody has offered amazing packages at great prices & anyone can do this no matter where you live. I'd love to help you change your lifestyle as well!

Giving Thanks

2011-11-24T09:06:00.000-06:00

Today I thank God

I thank him for his Grace

I thank him for his Love

I thank him for his Son & the gift of eternal life

I thank him for carrying me through my storms when I couldn't carry myself

I thank him for my home

I thank him for my family

I thank him for my friends

I thank him for the surgeon that fixed O's heart

I thank him for an extra chromosome that changed my heart

I thank him for my church

I thank him for my life

I can't imagine my life without Christ in it. I'm sure the fears I have faced wouldn't have been as easy to bear without faith in my life.

Sometimes we need to remember prayers aren't all about needs or special requests but that there is so much to thank HIM for. Even though I have many prayer requests, today I'm making sure I thank him for all he has given me because I am *blessed*

Date Night

2011-11-23T08:58:00.001-06:00

Tonight I have a hot date with her and her tiny...

That's right folks! BFF's Annie & Melissa reunite! We will be out on the town with Tiny Ollie & Sweet Callie. We are tearing it up Mexican style & then heading to the local theater to get our Edward and Jacob on.

We will be laughing until we cry and ogling men that are probably too young for us. We think we are cougars and it's possible, so we will continue watching Jacob & Edward...and Jasper...and Emmit and imagining that maybe we were once Bellas - minus the Edward part + the Jade Reid part.

We will probably get home late to kids and husbands in bed, but a hot date with your best friend is priceless. These nights come too far apart considering we live in the same time.

Get ready Aaron Clark - I'm stealing yo' wife!

Proud

2011-11-17T10:20:00.001-06:00

Do you ever have moments in life where you are just so stinking proud of your kids it brings you to tears?

I had that moment last week and with Ollie's ER trip & sickness I didn't have time to blog about it. I did acknowledge Aubrie for her greatness, but not publicly.

Wednesday night before the ER, we had parent teacher conferences. I knew Aubrie's would go well. She's that over-achiever, loves school and learning, teacher's pet kind of girl.

As we are sitting with her teacher, she tells us about this Dimes for Down Syndrome fundraiser they were doing at school for an older student. I knew about it and sent money with Aubrie, but that is all I heard.

What I didn't hear is that Aubrie was given the chance to talk to her classmates about Down Syndrome. She stood in front of the classroom, in front of her peers, and proudly told them all about Down Syndrome and how special her little sister was, and how lucky we were to have a baby with Down Syndrome.

And right then in that tiny little chair I had big crocodile tears in my eyes. I'm just so proud of the big girl I have raised. She has a heart of gold and I just love her to death for it.

On a different note - school has just exploded what she's doing! I am amazed! She's writing sentences - real sentences! She can tell time by the hour, count pennies, write all her letters upper & lower case & numbers & count much higher than she could before! It's just awesome! The highlight of her day every day is still lunch - bizarre I know - she is a hot lunch girl - I totally expected art or music - but nope something about those lunch trays just makes her day!

Brave & Courageous

2011-11-10T16:00:00.000-06:00

Prayer warriors, please pray for two of my friends & their families as their beautiful boys are preparing for open heart surgery. Add them to your prayer lists.

Baby Logan

November 16th

Baby Maddoc

December 2nd

An Eventful Night

2011-11-10T10:07:00.000-06:00

Yesterday Miss O started to get a cold, nothing more than a barely runny nose. No fever, no cough, nothing.

At midnight she could barely breath & was coughing like a seal. I knew she had croup. It was scary.

I tried a breathing treatment, I took her outside in the cold air - nothing helped. So Jade & I took off to Effingham to the ER. It's nights like that when I am so so thankful that Maggie lives in the basement because we didn't have to wait on someone to show up to watch the bigs - they were already in good hands.

We got to the ER and they were awesome. They immediately took us back, did a quick eval & started a different type of medication for her breathing treatment. She immediately started to sound a whole lot better. They gave her a steroid shot & did some xrays for precaution & two hours later she was good to go!

After all this heart business, I would think I'd be a more calm Mommy, but when your baby can't get a good breath - you panic & I did & I prayed like I always do.

Today she goes to her pediatrician. Fortunately we already had an appointment scheduled for today for her 9 month well baby checkup - can you believe she's 9 months old!?! So he will check her out and make sure we are good to go!

I have a feeling it's going to be a long winter for our family!

Thankful Hearts

2011-11-09T13:21:00.004-06:00

Here are some big and little things I am thankful for this month:

My husband - he was made just for me - thank you God!

My kids - 3 bundles of me and Jade to hug & kiss

My big ole family - they make life a lot more fun & are always there when I need them

My house - I feel very blessed to have the things we have & the home that Jade has built for us

Our wood boiler - it keeps the house nice and warm without the electricity bill to match

Furry boots - yes I love them all!

Surgeons - Ollie's doctor's hands amaze me to this day!

Early Intervention - these ladies come see us in our home weekly & teach me and Ollie amazing skills so she can be the best that she can be

Burt's Bee chapstick - yes I love it

Christmas stockings by my Mom - they are always amazing & perfect!

Trudie - her snores and snorts are comforting in some weird way

3 of the 21st chromosome

Beachbody - I have lost 23 pounds & I went from a size 14 to a size 6 - yes I love this just for me!

Jesus - he gave me eternal life & God carried me through Ollie's surgery by giving me faith

anything old & rusty that I can cram into my house

Diamonique jewelry - I can look like a million bucks for much, much less

furry blankets

popcorn in the popper like Dad makes it

memories of my family in our big farmhouse as we grew up

memories of Christmas with my Grandparents

my best friend in the whole world - you know who you are & we NEED date!

Twilight - yes I'm one of those girls & excited about a new movie!

date nights with the husband

hibachi grills with a cook throwing up some killer friend rice

when Maggie makes amazing cookies

that my sister & brother in law agreed to move in with us, and that they like it!

the opportunity to be a stay at home Mom - a dream I've held onto since I was a child

snuggles with kids when they don't feel well

doctors that make them feel better

a church that makes me want to dance and sing like mad & then cry when the pastor is just amazing & he always is!

a driveway alarm - it has made my life remarkably easier - bizarre I know!

new sheet day - something about new sheets just makes me happy so I change them often

winter smells - cinnamon, coffee, banana bread - any of those candles are usually sold in a heartbeat to girls like me

Ethel Edith days where we sling paint & laugh hard

dancing with my sisters like idiots in paint splattered clothes in a dirty old shed as we sling paint

Snoop Dog and Dr. Dre - wish I could listen to them in my Mom van but with 3 kids that never happens

Jason Mraz - he is my happy music

memories of my car from high school - buttercup - a 1976 Ford Gran Torino - I drove her in 1998!

memories of selling said car on eBay to the highest bid in the UK & shipping the car to the UK where it's being completely gutted & rebuilt - and not even kidding you - Buttercup rides again!

pug puppies

kittens

gator rides around the cows

watching the cows chase the gator as the kids yell to them

fires in the back yard

kids belly laughing

skinny jeans

sweaters - I can finally wear them at home b/c I used to roast in them in my old office when I worked!

freshly painted toenails

making a perfect piece of jewelry that makes someone else cry with joy

hugs when I need them most

apparently the list could go on and on but I will spare you! I'm mostly thankful of where I am in life - I feel extremely blessed with everything God has poured onto my family - last year I wasn't in this same frame of mind so it's nice to be here now!

This is what happens

2011-11-04T16:59:00.003-05:00

when Everett steals your camera...

Go Tiny Go!!

2011-11-02T14:25:00.001-05:00

Tiny has a new trick!

That's right baby girl has been working her booty off & she can sit independently for a few seconds!!

When she breaks out a prop sit she can hang out in the sitting position even longer.

However, the moment she breaks her concentration to whip out a smile, she collapses :)

I am so proud of her! She got such a late start on her gross motor skills since her surgery & post-surgical healing took 5 months!

We got started in August working on pushing up & I can't believe she's already sitting! My goal was to be sitting by the end of October & she did it!

She's such a rock star! Now we need to master the sitting & transition to crawling position!

Master Bedroom - Junktastic!

2011-11-01T11:10:00.002-05:00

OK so my old master bedroom was hand me down furniture I had painted to match & I liked it, but it wasn't me.

Thankfully Pinterest inspired me in a big way with a project I could easily duplicate with absolutely $0.

So off I sent Jade to the concrete plant to pick up old beat up pallets & then to the car wash to clean them.

This is why he is the man....

I purchased my night stand, an old tool box, at an auction for around $30. It has a ton of storage and it's totally my style. Anything rusty, metal, and manly and I'm digging on it.

I scored this fabulous dresser at an auction for $85. It was painted black on 2 sides and turquoise on the other - it was bizarre. The inside was FILLED with mud dobbers. After major cleaning - I painted this baby silver, and oh my I am glad I did because it's amazing!

Seriously aren't you in love with this? It's a very heavy, old piece - what a steal!

And see that - it has a secret drawer in the middle!

Trudie got a new dog bed area & yes that sweet painting was made by yours truly.

My desk area got a small makeover. I want to find an old metal chair instead of the turquoise floral one. It's on my to find list.

The little metal cubbies Mom gifted and they are amazing & store a lot of jewelry making stuff!

I now feel like our master bedroom is finally a reflection of our personality and the rest of the house - hooray!

Miss Owlie

2011-10-31T09:00:00.000-05:00

Oh yes, she is the cutest of them all...

Spooktastic

2011-10-30T10:09:00.001-05:00

Last night the kids rocked it out mutant style.

We had the famous Leonardo & Raphel.

Everett had some muscle milk to pump up the biceps.

We had enough weapons to take down Maggie's clan.

Ollie was the famous rat, Splinter (the wise martial arts teacher for the turtles)

She proves her mad martial art skills here with a swift kick to Penelope the cat's chest.

Their favorite spot was seeing Toots & Howard at their new digs - all the tenants were gathered in the lobby handing out candy & my kids hit the lottery big time there!

With buckets full at 8:00, Everett asked if we could please go home because he wanted to go to bed.

Success!

PS - if anyone sees Aubrie's missing weapon please call our tip line 1-800-CRY-HARD - she desperately wants it back.

Pity No More

2011-10-29T11:29:00.000-05:00

When Jade & I first learned Ollie had a major heart defect and most likely had DS we wrote this blog to share the facts with everyone. That way it came from our mouths and all the facts were true and laid out.

We needed the prayers of strength and support of our family and friends to help us grieve what we thought we lost and to forge forward for the daughter we had.

We received countless prayers & that was amazing & strengthening. God heard our cries. I felt at peace most of the time.

We also received pity.

Pity is probably one of the worst things. I hated it. I knew it was out of the goodness of peoples hearts, and that they didn't know what to say other than "I'm so sorry" or "God picked you because you are special and it takes a special mother to raise a child like her". But the words hurt.

Now this is fully how I felt, my opinion and other moms may disagree, but I hated it more than anything. I hated that people didn't know how to act around me so they avoided me. I hated the eyes coming sideways wondering what to say, how to approach me. I hated that people acted like my world had ended and that my baby was dead.

So what did I do?

This may sound crazy to some, but I raised my level of expectations.

I quickly adjusted to the idea of a daughter with DS and poured myself into blogs that had families with someone that had DS. It was my medicine. It was my gold. I built amazing friendships with women I have never met, but trust me one day I will meet them all!

From that point forward I knew I could do it. I dreaded open heart surgery, but I knew I could handle DS. I was still scared, but I knew I loved this baby girl unconditionally. I started telling people how I expected them to feel about my daughter. I said don't feel sorry for me, we celebrate this child. We are still in love with this baby.

I blogged about how wonderful she was going to be. I laid it out there for everyone. I never blatantly said don't pity me, but I placed the idea in their head that we viewed her as a blessing, as a gift (and honestly she is a huge gift) and eventually people learned that she was the same. They have learned that she is much more than a diagnosis on paper.

I no longer receive the I'm sorry statements. Instead I get the she's so beautiful, she's so strong, she's so tough, she is such a blessing, you are so lucky to have her. That's right, people rose to my expectations & have learned that the diagnosis of Down Syndrome isn't the end of the world. How's that for positive thinking?!? So I urge you, raise the bar - if you have a loved one with news like I recieved - give them a hug, tell them you love them, pray for them, shoot give them my email address...but don't pity them, don't tell them you are sorry because soon they will be where I am today and they will be thankful for their bundle of chub.

Ollie has educated many with her cheesy grin and chubby rolls. Now that I'm in this "club", I wish others were in it too. You see,very rarely does someone else get blessed with a baby that has Down Syndrome. God selects the lucky few! Jade & I can not create another baby with Down Syndrome - it'd be extremely impossible. 1 in over 1000. That's why she's so stinking special. She's one of a kind.

God didn't give us her because we were the perfect accepting family. That we were the perfect parents, because trust me this is the farthest from the truth - special needs used to terrify me! He in fact gave us her because WE NEEDED her. We needed to learn some life lessons.

God broke us down to build our faith up. He has showed us compassion, patience, trust, acceptance, forgiveness (yes we were a bit angry with God), and the undeniable amount of love you hold for your child no matter a chromosome count. My word - God has changed US, by giving us the most beautiful gift, a gorgeous child that society thinks is imperfect, but that is truly perfectly made by him.

Thank you God for pouring out your blessings onto my sweet family & anyone else lucky enough to kiss the cheeks of "imperfection". I now know that nothing in this world is a mistake, it's all a part of God's big plan.

I love my life with my handsome husband & 3 beautifully created kids!

Reece's Rainbow

2011-10-28T11:00:00.000-05:00

In other countries Down Syndrome isn't completely understood. For this reason, hundreds of children are sitting in orphanages waiting for families to adopt them. There is an organization called Reece's Rainbow that is helping people adopt and bring these kiddos home.

Here is their purpose:

The mission of Reece's Rainbow is to rescue orphans with Down syndrome through the gift of adoption, to raise awareness for all of the children who are waiting in 25 countries around the world, and to raise funds as adoption grants that help adoptive families afford the high cost of adopting these beautiful children.

When these children do not get adopted, around age 5 they are sent into adult mental institutions where a majority of them die. It breaks my heart.

I ask you for the upcoming holiday season to donate to this amazing fund & be an angel for one of these children. Here is a link to the 2011 Angel Tree that begins 11-1-11.

$35 to you may not mean much, but to one of these angels it means their life!

Get Fit!

2011-10-28T10:00:00.000-05:00

I'm doing a November fitness challenge. If you want to make a lifestyle change please email me at housethatjadebuilt@gmail.com.

I'm taking the first 5 people to commit. If I have learned anything through Ollie it is that you can't buy health. You get one shot at it! I am getting my body back & changing my lifestyle so that I am able to play with my kids and be around a long time. My goal is to teach them the importance of healthy eating and exercise too.

When I committed to doing this same challenge in late June - I was 157 pounds and 5'4". Today I'm 135 pounds. I have lost 22 pounds and I'm not kidding you the changes in how I physically feel are amazing. No more knee pain, I'm not tired when I wake up, I can enjoy my kids without bending over to catch a breath. I also am wearing jeans I like which is an added self confidence boost! It's not about the size and weight for me, but how I feel & I am so thankful I committed and followed through!

So what does this entail? It's simple really. You pick a program from above (we have high or low intensity programs). In a bundle you get the program, 30 days of Shakeology (my biggest tool to cut cravings & boost energy), and a 30 day club membership (meal plans & recipes for your entire family & kids will eat this - it's normal food & teaches you how to cook healthy!!)

When you commit - I add you to an accountability group of other peope just like you. It's a private group & we communicate daily - we motivate, support, share struggles, and share success. You don't do it alone - you have a team of friends doing it with you & I promise you this accountability motivates you to actually do it - not buy workout dvds that sit with dust on them, but you push play daily & I promise you get real results!

So please stop wishing you could lose weight & join me & we will do it together!

housethatjadebuilt@gmail.com

Rolls

2011-10-28T08:25:00.003-05:00

The rolls are here - I kiss them daily...

Sharing The Knowledge

2011-10-27T14:41:00.003-05:00

I decided to compose a list of things I wish people knew about Down Syndrome...

1. That anyone can have a child with Down Syndrome, it's not something Jade or I did wrong, we just got very lucky! I was 28 and Jade was 30. We both were exercising and eating healthy.

2. As a Mom I worried that I would be disappointed with Ollie at birth if she had Down Syndrome. Immediately after I had her I held her and she gave me this sheepish smile - I melted. Nearly 9 months later I am not disappointed in her at all - she is amazing!

3. That the word retarded is outdated. It's now called cognitively delayed. Society has twisted the word retarded into a negative hate word. Please try to stop using it.

4. People with Down Syndrome have 47 chromosomes instead of 46. Chromosomes are in pairs, but Ollie has 3 of the 21st chromosome.

5. That people with Down Syndrome look more like their family than others. Yes, Ollie has characteristics that she shares with other people with Down Syndrome, but she looks so much like her sister Aubrie & so much like her brother Everett.

6. That people with Down Syndrome are more alike than different. They are still people! They live, they laugh, they love, they have hearts, and souls. They deserve respect.

7. That Ollie will benefit from having siblings, and her siblings will benefit from her. I hope that my older children develop to be more caring, understanding, patient, compassionate people because of their sister. And I hope my older children push Ollie to be the best that she can be. I hope because of them she will work harder to achieve her goals.

8. People with Down Syndrome commonly have more health issues to worry about: heart defects, intestinal blockages, thyroid issues, leukemia, alzheimers, the list goes on and on - but with modern medicine & amazing Down Syndrome clinics it makes life medically speaking a lot easier. The Down Syndrome clinics make sure everything is being evaluted & taken care of.

9. Life with Down Syndrome is different, but it's just like anyone elses life. We never know what God is going to hand us. Our health, our children's health, nothing is certain & what may be today may change tomorrow. Life with Down Syndrome has made me acutely aware of this, and it has made me enjoy every single day to the fullest!

10. People with Down Syndrome do not suffer. I've read way too many times that they suffer. They don't. My goal in life is to make Ollie feel loved and adored, and I know she is. I also know that she loves us in return. It's in her eyes - it's undeniable!

Badge of Courage

2011-10-26T13:37:00.001-05:00

I have a soft spot for heart heroes.

Especially babies walking this journey.

So today I ask you to pray for baby Maddoc and his family. They are anxiously awaiting a surgical date. I know they would appreciate your prayers and support during this time!

As always thank you prayer warriors!!

Daddy & Me

2011-10-25T08:33:00.001-05:00

Ollie enjoys her Daddy time every night.

Tiny lays by him and basks in his beauty.

She laughs & plays.

She loves to yell and get rowdy.

Then she shows him her mad leg kick skills. When he's too involved in Cardinals baseball - she just does a swift kick in the chest to bring his focus back to her!

PS - this is weird, but I know there is some confusion on how to pronounce Ollie Faith's name. It's just like Molly or Holly but no consonant at the front :)

Fighting Mad

2011-10-24T16:12:00.000-05:00

Penelope is quickly gaining on Ollie Faith in size.

Ollie Faith weighs in at 15 pounds 4 ounces at 8 months of age.

Penelope is 8 weeks old and a whopping 12 pounds 13 ounces.

Lucky for Ollie, Penelope is still immobile - it renders her helpless when Ollie puts the smack down on her! I think Ollie's days are numbered!

In this world...

2011-10-23T09:00:00.000-05:00

God never makes mistakes.

Kicking the day off right

2011-10-22T10:28:00.001-05:00

With smiles like you greeting you first thing in the morning - how can you not have a great day?

(clearly they have pop tart mustaches!)

Cut-a-thon - Thank you!!

2011-10-21T09:30:00.000-05:00

Last Saturday Maggie hosted a cut-a-thon for the Down Syndrome Research & Treatment Foundation. To say it was an awesome day is an understatement. Our community supported us, and loved on us by donating $2085.42 at last count with a few donations still rolling in!

Thank you everyone that came out to say hi, to donate, that gave raffle baskets, etc. It truly means the world to me and my family!

Also a huge thank you to Maggie, Casey, & Brittany for donating your time and 100% of the money earned this day - I love you girls!!

Guest Post: Life With A Magical Chromosome

2011-10-20T02:30:00.000-05:00

Today I want you to welcome a guest blogger, Jennifer Storm. Jennifer has an adorable baby girl named Alivia, she's a Kindergarten teacher, a wife, a friend, and she also has an older brother that has Down Syndrome. His name is Brandon. We live in a very small community so Jade & I grew up familiar with Brandon & he is the reason that Jade & I had a great outlook about Down Syndrome, and why we know Ollie will be capable of anything she sets her mind to.

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Brandon, my older brother, has that "designer" gene that Annie often talks about. I don't have any other siblings so growing up with him is all that I know. I don't know what it is like to have a sibling that you confide in and go to for all your problems, but he is something much more than that to me! He is now 30 years old and I am 27.

I don't really remember exactly when I realized that he was "different" and had Down Syndrome, but I do remember being EXTREMELY protective of him at an early age. I remember thinking a lot that people were picking on him or making fun of him. Something else that I look back on is that I treated him more like he was my younger sibling. When he would talk, I knew what he was saying and I didn't like to see him or the person he was talking to get frustrated so I would immediately interpret. I would give dirty looks to anyone that seemed to be giving him a funny look! I remember being in school with him and really watching other students and making sure they were being kind.

Celebrating his 30th birthday

Not to go off on a whole different story, but he was attending a school in Mattoon called Armstrong. My mom fought (and won) to get him into the public school district. This was the BEST thing she could have ever done for him. He was going over to Mattoon and learning life skills that she was already teaching him at home. She wanted him exposed to people in our community and school. She wanted him to have social skills. She wasn't concerned about academics as much. Getting into the public schools provided all of this for Brandon. He attended Homecomings and Proms. He made all kinds of life long friends. His High School teacher helped to get him on the high school football team. He went to every practice and game. Many times if the team was really winning or really losing, he would get put in at the end of the game. He was in Heaven! The other teams would be informed of his disability and would take extra caution with him. To this day...10 years after his graduation, he can be seen at all of the Shelbyville Rams home games out on the field helping the football team. This year he was even the Grand Marshal of the Homecoming Parade....talk about EXCITED! . His high school teacher also got him a job at McDonalds as the Lobby Host. Again...10 years later, he can still be seen there greeting customers with a smile!

I can't say that everything was perfect for him. He so badly wanted to get a black car to drive when he turned 16. He so badly wanted a girlfriend like all the other High School boys had. To this day he still wants a girlfriend and to get married. He now lives in a group home apartment. He cooks his meals and cleans his apartment (under the supervision of staff). He likes going to church, out to eat with family, spending Saturdays with his Grandpa and one of his newest loves, his niece, Alivia!

I have to say that Brandon has lived a pretty fantastic life! We have been blessed with his good health. He has not had any major medical issues. I often times find myself worrying about the life expectancy of those with Down Syndrome.

What I have learned from Brandon:

Brandon has the innocence of a child and things that stress us out, don't bother him. Sometimes I look at him and think, I wish we could all be a little more like him. The littlest things in life can excite this boy and that makes our life more exciting. Christmas has never been boring at our house...because YES...at the age of 30 he still believes in Santa. I wouldn't want it any other way!

Brandon's Relationship with Alivia:

When my husband and I found out we were expecting, I couldn't wait to tell my brother. I knew that he would be absolutely thrilled. He would love being an uncle and what a good one he would be. Sadly, our pregnancy ended in a miscarriage. Once again, I immediately thought of my brother. What were we going to tell him and how would he understand. I was a mess and I couldn't bring myself to tell him. My mom told him and then they came over to my house. He put his hand on my shoulder and said, Jenni, I am sorry. He had a tear in his eye...I lost it. A few months later, we got pregnant again. Once again, he was thrilled. He would call me all the time and ask me how I was, if I was putting my feet up, etc! He asked me if he could babysit on September 24 (my due date!) When our precious little girl arrived, he didn't come the first day to see her (he is too dedicated to the football team and had to be there for their game) so he came up the following day. He did fall in love with her and him holding her was one of the sweetest things I have ever seen!

What would I tell others that are worried about having a child with Down Syndrome or having one child with Down Syndrome and worrying about having a 2nd?

I feel that our family has been blessed with Brandon. I could not imagine our life without him. That is why when I was offered the test for Down Syndrome, I refused. I didn't want to know because there was absolutely nothing I would have done different if I did know that my baby was going to have Down Syndrome. I have been asked before if my chances are higher for having a baby with Down Syndrome because of Brandon and if I am concerned about it. Absolutely not! My heart melts anytime I see a baby or even a grown person with Down Syndrome. They always have a smile on their face and are absolutely the most precious people. I can't ever think of a time where, as a sibling, I have ever felt that my life was impacted by having a brother with Down Syndrome. I feel the only way it was impacted was in a positive way. I feel like I am a stronger, more independent person because of him. I feel like I do take the time to enjoy the small things in life with him. I feel like I have a stronger sense of caring for anyone with a disability.

Brandon is one of my biggest blessings in life. I know that many people can't imagine having a sibling or child with Down Syndrome....I can't imagine what they are missing out on. It's something that is indescribable and no matter how much I type I can't even begin to explain!

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Thank you so much Jenni for filling in for me today - I know your words have deeply touched my heart, and I know there are many other families that will read your words and have tears in their eyes because they know the beauty and joy in that extra special chromosome as well!

What I love Times 21

2011-10-19T09:00:00.000-05:00

In honor of Ollie's three 21st chromosomes I thought I'd make a list of the 21 things that make her perfectly special to us:

1. Her smile

2. The way her eyes light up around her siblings

3. The way she makes even strangers come take a second look at her magical smile

4. The way she grabs my face & tries so hard to kiss me

5. How she sings when I stop singing to her

6. How she bosses her daddy every night when they cuddle

7. How her hands and feet are still so tiny

8. Her eyelashes - they are pretty fantastic framing her spectacular eyes

9. She nurses - exclusively - she gave the finger to the bottle - they said she wouldn't/couldn't nurse & guess what she can and does

10. How she finally has chub rolls & rubber band wrists

11. Her heartbeat - music to my ears

12. How hard she works during therapy & all week long learning new skills

13. Her chubby cheeks - perfect for kissing

14. She's tiny - when everyone meets her they are shocked at how small she is - she's 8 months old and still rocking the 0-3s & newborn socks - I get to hang onto my "baby" size longer than I expected

15. She pats me when she nurses

16. How she's always, always happy to see her mommy

17. The way she tinkers with her toys, we call her the tiny mechanic because she's always banging things around when she plays

18. How she tries to hug me

19. The way she gets visibly and audibly excited about anything - it's fantastic

20. If you blow in her face - she's instantly thrilled

21. How she sleeps in my arms

When I was pregnant, I always worried that I might be disappointed with this new life, that I may always grieve the dream I once had for a typical baby girl. It's so silly now because I am far from disappointed & if God gave me the option to switch out her 47 chromosomes for 46 - I'd run kicking and screaming in the opposite direction. Her extra chromosome makes her special in more ways than I can count. Ollie adds a new spice to our life that makes me, my husband, and especially our kids in to better, more loving, patient, understanding, and kind hearted people.

Chub-a-licious

2011-10-18T09:00:00.000-05:00

Yes...

she really is this great!

Perfect hair. Perfect smile. Perfect chub.

Heart hero.

Big Brother

2011-10-17T09:00:00.000-05:00

This little man has had a big adjustment this year.

He went from being the baby, to the middle child.

He's now a big brother. He's 4 years old.

He adores his baby sister & loves to play with her. She adores him back & flirts like crazy with him. They have a great time together.

One thing is for sure, even though he's growing up faster than I can believe, he will always, always, be my baby boy!

What we do for fun...

2011-10-16T09:00:00.000-05:00

OK raise your hand if you are this flexible?

Yeah - I didn't think so!

Baby girl is starting a fight in our house...Aubrie loves turquoise, Everett loves turquoise, and now Ollie Faith loves turquoise - Grandma Janie we need more turquoise everything before a slap fight breaks out.

This polar bear is her arch enemy - he plagues her dreams with his taunting ways - she will catch him - she will...the best method...strong arm him down! Atta girl!

Mom - have you vacuumed recently? You may want to...

Carpet licking - I think it's going to take off as a new trend - kind of like planking...you want to try it with me - gives your tongue a new texture - it's called fuzz.

Mom, why won't he get in my mouth? Seriously I'm sick of licking his backside.

See my two new teeth - they have three sharp bumps per tooth - perfect for biting Everett one day.

Oh Mom you are hilarious, I mean it I seriously can't stop laughing...oh my gosh Mom stop - stop being so funny!

A Week With Ollie

2011-10-15T09:00:00.000-05:00

Someone asked me what is a typical week like for us?

Well here we go...

Every week day starts out at 6:15 when the bigs get up & get ready for school. They load up on the bus at 7:05 then it's just me and Miss O...plus the basement condo dwellers until Maggie goes to work.

Ollie nurses then after a bit she eats breakfast.

On Wednesdays she had Developmental Therapy. Some weeks it's from 8:15 to 9:15. Other weeks it 11:45-12:45. Samantha is her therapist and we love her. She works closely with Ollie's physical therapist since we are mainly focusing on her gross motor skills right now.

The big things we work on are pushing up fully extended on her belly then reaching for toys, working her core muscles so she will be able to sit independently, and then getting up on all fours to prepare for crawling. And this is totally in my words what we are doing...they tell me the real terms and I can't remember them!

On Thursdays from 8:30 to 9:30 we have Physical Therapy with Joy. We also love her. She's working on the same things.

The last two weeks in developmental therapy Ollie has sat in a ball pit learning to bang toys together - she's awesome!

These are both in home weekly therapies that we have & after a full hour, Ollie is pooped. She is a trooper though and will work most of the full hour without complaint. Sometimes she tells them what for in baby language and I'm pretty sure it's not nice words she's yelling at them, but she pushes through it with smiles every time.

Therapy two times a week really isn't difficult for me time wise. I see huge progress every week and it's totally worth the investment of time for Miss Ollie. Granted she's tackling very small goals each week, but at the same time they are skills she couldn't do at all or could barely do the week before. So seeing the progress before your eyes is very, very exciting. I try to explain it to other people, but until you see the progress with your own eyes you just can't understand how awesome it really is!

Then, every 2 weeks Ollie has a nutritionist, Jo Sue. We adore her as well. She's full of helpful tips on how to get Ollie eating solids better or using a sippy cup. She's a wealth of knowledge for me even after nursing 2 babies, I still learn more from her. She also was on this journey pre-heart surgery so we leaned on her desperately. She'd wheel in her large suitcase sized scale and I'd hold my breath waiting for Ollie's weight to pop up, praying it was always more than it was.

So that sums up Ollie's therapy. On top of therapy we go to her endocrinologist in St. Louis every 2-3 months for her hypothyroidism. She also has regular blood draws & now that it's closing in on winter, we will see her peds Dr. monthly for her RSV vaccination since she still has a minor hole in her heart between her ventricles. So my van gets a lot of mileage when it comes to doctors - luckily we have awesome doctors that I work closely with and trust.

What is the hardest part? Not the scheduling, not the time, not the driving - I'd say it's the days when the bigs are home. Because these sweet ladies come in with a bag full of toys that look like sparkling diamonds to my big kids - and it's hard to get them to behave & play independently in that type of environment. I very much dislike it when my big kids do not listen & behave to me so anytime they are home at the same time & not minding me - ugh that is what's frustrating to me. Oh and Trudie insists on sitting on the therapists laps - all of them - she is obsessed with them. She is weird.

Girl look at that body...

2011-10-14T09:00:00.000-05:00

I work out!

Every day Miss O works out.

So does her Mama.

She does back flies - this is her push through the pain face ^

My push through the pain face with P90X - not so cute!

^ her after burn yoga pose - rounded back

In all seriousness - she does workout daily with me - I do therapy work with her here and there throughout the day. It's our weekly "homework" and the results pay off big just like me working out. Every week she is stronger & conquering more. That's right - she's a rockstar! Her therapist said so and she knows what she's talking about!

Go Ollie Go!

What I've Learned

2011-10-13T09:00:00.000-05:00

Ollie has taught me...

That God sees perfection in every creation

That God never makes a mistake

That often the best gifts in life are those never asked for

That I have more faith than I ever dreamed I did

That I am stronger and tougher than most men I know

That to reach your dreams, you have to work hard for them

That exercising daily, pays off big when it comes to gross motor skills

That one smile can light up a room

That she can do anything she sets her mind to

That people will love and adore her & they already do

That Down Syndrome is a diagnosis - that's all it is

That she is so much more than that diagnosis

That she has value

That she has worth

That she is special

That she adds sparkles and rainbows to an otherwise black & white world

That we are all different but that we are all the same

That life without her just wouldn't be the same

That God loves me so much he let me be her mama

That my children will be better because of their baby sister

I asked my friends on Facebook what they have learned from Ollie, this is what they said:

-I have taken the r word out of my vocabulary. It was one I used with out trying to be malicious, but after following your story decided to change that habit.

- me too! i no longer say that word.

-She has shown me how much progress there has been made in 30 years as far as public knowledge and hope in the future.

-I thought that DS was a bad thing but now I know that it can be a blessing. It made your whole family a stronger unit & has made you a stay at home mom which is where your heart was all along. God is always teaching us lessons. Glad I got to be a witness to it!

-To beleve in myself more. I know I sell myself short or make excuses and I love you letting me know all the awesome things she has done and gone through while keeping such a positive attitude.

Now I ask you, what have you learned from my sweet pea or through Down Syndrome awareness month?

Heart Heroes

2011-10-12T09:00:00.000-05:00

I was recently asked, do children with Down Syndrome typically have heart defects?

Well, it is pretty common in children with Down Syndrome. In fact about 50% of these kiddos are heart heroes. In their typical peers, heart defects are present in about 1% of the population.

The most common heart defect seen in infants with Down syndrome is an atrioventrucular septal defect, or AV canal (What Miss O conquered). Other heart defects seen in infants with Down syndrome include ventricular septal defects (VSD), atrial septal defects (ASD), and patent ductus arteriosus (PDA).

Some kiddos may have a heart defect, but it may not require surgery. It's not entirely uncommon for an ASD for a VSD to grow closed & often it's closely monitored by their cardiologist. Sometimes it may take a year, sometimes they don't have surgery until they are older. Some kids may have to have multiple surgeries - fingers crossed that Ollie is done.

Ollie Faith had an AV Canal which means she had a hole between her atriums, a hole between her ventricles, and a common valve - basically a hole in the center of her heart. This type of defect usually always requires open heart surgery. They told us she had a very small chance of these holes growing shut on their own. Of course each kiddos heart and makeup is different. Ollie had a moderate ASD and significant VSD so they were pretty substantial holes.

Ollie went in at 10 pounds 5 ounces at 4 months for her correction. Some kiddos are larger & longer making their anatomy easier to operate on, and some are shorter and smaller making it more difficult, but at the same time their unique anatomy can vary the difficulty of the surgery as well. For Ollie's type of correction, they told us they typically operate between 3-6 months of age. Any longer could potentially damage the babies lungs long term because their heart defect pumps extra blood to their lungs prior to surgery.

What was key for us was finding a cardiologist and hospital we were comfortable with. We went to St. Louis which is closest to our home, and we were very happy with our cardiologist and our surgeon. Since St. Louis has a Down Syndrome clinic the surgery Ollie had wasn't uncommon for them. Our surgeon performs about 15 of them a year - that number wasn't as high as we had hoped - we were hoping it was a weekly operation for him, but he was very confidant in his abilities. Ollie's chances for survival were 99%.

On top of heart defects children with Down Syndrome can face many other health issues...however I'm not going to dump them all out here because honestly that list is depressing & scary - especially to any new parent that may read my blog.

I can tell them that modern day medicine is amazing & to find a hospital and staff that you feel absolutely secure with because it will make the process a little easier to bear.

The beautiful things in life

2011-10-11T09:00:00.000-05:00

hearing your babies heart beat strong & healthy for the first time post open heart surgery

babies in the morning - they are always happy

.
hugs & kisses when the big kids get home from school

how Aubrie sings to Ollie Faith when she gets upset - You are my sunshine, my only sunshine

how Everett plays in her face, which typically would annoy a person, but how Ollie Faith laughs hysterical at him because she loves him

Jade & Ollie snuggling on the couch at night

Aubrie & Everett getting a long and saying they are best friends

Aubrie and Caroline coloring kitties at the kitchen table for hours, they are two peas in a pod

Ollie and Penelope playing together on the floor mat, working their hardest to get the toy chicken into one of their mouths - the definition of teamwork

the fall colors in the trees - our woods are gorgeous right now

all the new friends I have made through the Down Syndrome community - beautiful kiddos - beautiful famlies

realizing that God's plans are bigger and better than any plan you can ever dream up for yourself

Prayer Request

2011-10-10T15:47:00.000-05:00

I recently asked you to pray for my sweet friend Soha, and her beautiful baby girl Aseman.

Aseman had her open heart surgery and then proceeded to gain her angel wings.

I ask you again to pray for this family as they grieve their loss. We know Aseman is dancing in the streets of heaven, but hearts every where are broken for the loss of this beautiful blessing.

God bless!

A Mother's Heart

2011-10-10T08:00:00.000-05:00

My have I changed in the last year.

My whole life I never thought I could raise a child with a special need. Two years ago I actually saw a family with an adult daughter with Down Syndrome, and I'm pretty sure I stupidly said, I could NEVER do that. I think I said it aloud even.

God chuckled pretty good that day at my stupidity.

You see I have never been comfortable around someone with a special need. It was a problem with myself. I never have been one to make fun of someone or to put someone else down & I was always afraid that some how some way I'd say something uneducated or offensive on accident. So it was just easier to just not go there.

I know, shame on me, I never knew what I was missing. My best friend always had a passion for children with special needs. She worked at a local camp, she adored the kids, and now she has the degree to back it up. I never understood her passion until now.

I have always said when it came to my children it didn't matter to me, but that was before it did happen to me. I never dreamed it would happen to me. I never truly realized the miracle that is a healthy, typical child. All the steps that can go wrong during pregnancy never seemed like a possibility to me, until it was happening to me. I just assumed I would always have healthy "perfect" babies. I always did the AFP tests, just because if there was something, I wanted to know and educate myself. I truly never thought I had to worry about any of it.

I never planned open heart surgery or Down Syndrome in my life, and I sure the heck would have never asked for it.

My how God has changed my heart in a year. The thing I said I could never do, I am doing, and can't imagine it any other way. I am in love with this baby, in love with Down Syndrome. I see other kiddos and adults with Down Syndrome and I just stare at them with awe, in the beauty that lives inside their souls. There is just something magical, I swear they have laughed with God, and they wear the sparkle of heaven in their eyes.

I have bravely walked the life of heart failure & open heart surgery. I have not so bravely handed my baby off to a surgeon with tears running down my cheeks saying more prayers that I knew how to put together. I have relied on my faith to carry me when I couldn't walk. I have picked that baby back up post surgery with a singing heart, kissing her chubby cheeks rejoicing on how good our God is. Now, I enjoy that baby daily, everything about her little soul is perfect.

I have made friends in a wonderful special needs community that I never would have been a part of, that I never would have understood until now.

A year later I have a thankful heart. I feel blessed by Down Syndrome, blessed by open heart surgery, blessed by the life I live that God chose for me. Because honestly it's not the life I would have ever chose for myself, but now that I know how perfect Ollie is, I would never choose anything else.

Cut-a-thon

2011-10-09T17:24:00.000-05:00

This coming Saturday (October 15th) Maggie is hosting a cut-a-thon at her salon, HAIR, m.d., to benefit Down Syndrome.

I am pumped! It is from 9-2 and Maggie along with her two stylists, Casey & Brittany will be donating 100% of the money raised to the Down Syndrome Research & Treatment Foundation.

Please call and book your appointment at 217-774-3264 - and if you can not come, but still want to donate send checks made out to DSRTF to the address below:

HAIR, m.d.

244 E. Main St.

Shelbyville, IL 62565

or donate online here in Ollie Faith Reid's name

Fast Facts:

400,000 individuals in the US have Down Syndrome. Federal funding for Down syndrome research is only $55 per person—that’s as much as 95% less than funding for similar disabilities.

The mission of DSRTF is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome in order that they:

• participate more successfully in school;
• lead more active and independent lives
• and avoid the early onset of Alzheimer's Disease

How are Down syndrome and Alzheimer's Disease connected?

It is an interesting and surprising finding that every person with Down syndrome develops by age 40 the brain pathological changes of people with Alzheimer's Disease. Moreover, most people with Down syndrome in old age - i.e., beyond age 60 - show further cognitive decline. This is a devastating aspect of Down syndrome and one that is quite disconcerting for those that care for elderly individuals with Down syndrome.

The question is how to explain the link between Down syndrome and Alzheimer's Disease. There is no certain view at this time. However, some recent findings are very exciting. They point to a specific gene that is present in three copies in Down syndrome, which is known to be linked to Alzheimer's Disease. In ongoing studies, researchers are testing how this gene might contribute to the development of Alzheimer's Disease in people with Down syndrome.

Be The Change

2011-10-09T09:00:00.000-05:00

I just recently read a post that spoke to my heart and felt I needed to share.

Most of you are probably aware that 9 out of 10 pregnancies carrying a child with Down Syndrome lead to abortion. How is a prenatal diagnosis made? Currently there is a blood test that is done called an AFP, it gives them a percentage of chance that your baby has DS. After that they do a Level II ultrasound & look for soft markers (thicker nuchal (neck) fold, missing pinky bone, missing nasal bone, heart defects, etc). Based on that ultrasound you have a better idea if your child has Down Syndrome or not (or other chromosomal abnormalitites) then they push you toward an amnio. I was 20 weeks pregnant at our level II ultrasound & they urged an amnio because the window for abortion is short. An amnio is more invasive because they basically insert a needle into your placenta & draw out amniotic fluid to test. The results of the amnio give you a yes/no answer to Down Syndrome or any other chromosomal abnormality. This amnio gave us a risk 1 in 500 for a miscarriage - so we opted out of the amnio. 1 in 500 sounds not bad, but considering my chances at age 28 of having a child with DS was 1 in over 1000 - 1 in 500 didn't sound like great odds.

Anyway, that's what happens now. They are currently developing an earlier blood test - that gives an absolute yes/no answer to Down Syndrome & it is completely non-invasive. However, it's given very early in the pregnancy - around 12 weeks. So I do believe the rate of termination will go up because at 12 weeks - some women haven't even shared the news they are expecting. Some medical people are rejoicing on this test & some countries are rejoicing. Less babies with Down Syndrome means less medical expenses to be handled by insurance or the government - some nations are pushing for no Down Syndrome by 2030 - which honestly that's more genocide because the babies will occur regardless they just will be terminated...

Anyway, the post I read had to be shared - I urge you to read it here and then come back to me.

We live in a society that judges quickly and harshly.

I personally chose to keep Ollie - I haven't ever questioned that. However, it hasn't came with out sacrifices. Granted we have made large sacrifices willingly, I no longer work so our income was cut in half & we also don't have my amazing health insurance. However, I'm a stay at home Mom and that is worth any sacrifice we make. But not all families can afford the sacrifices that we have made. I do believe the medical community has some of the blame because they don't properly educate scared and pregnant Moms on what Down Syndrome truly is, but I also believe these Moms may know what DS is and they are just scared to death period. I know I knew what DS was and I was scared to death.

I think Courtney's points were very valid. If you personally knew a mother having a child with DS - how would you support her? How would you be the change?

We can advocate & raise awareness all we want, but we also need to take action to be more. I have contacted my OBs office & the lactation/birthing nurse at our hospital so they can direct anyone my way at any time (we don't have a local DS chapter) - what will you do?

Rapping

2011-10-08T09:00:00.000-05:00

Oh yes for you TurboFire fans of Fire 45 - Ollie is a fan as well. She loves all rap music - especially when rapped by supa fly mom-me.

Enjoy

Down Syndrome Clinic

2011-10-07T10:03:00.000-05:00

Some people wonder why I drive Ollie Faith all the way to St. Louis for the Down Syndrome clinic.

The answer is simple if you have ever been there. They are amazing.

First, they specialist in Down Syndrome on top of their area of medicine. For example, her cardiologist, Dr. Johnson, specializes in Down Syndrome & cardiology. Does it get better than that?

Second, it's like an all inclusive resort! Well not that great, but pretty close when it comes to Dr. appointments!

They have a list of what they want to check on Ollie yearly (they see you at 1 month, 6 months, then annually). So nothing gets missed. They schedule all the appointments for you in one day and send you an appointment packet in the mail. All the paperwork you need is in there so you can fill it out early at home. It's fantastic.

So in just this year, Ollie has had hearing exams, an eye exam, she has seen the DS doctor to make sure everything is developing as it should, endocrinologyy for her thyroid, geneticists for her blood tests & caryotype, advocates with the Down Syndrome Association of Greater St. Louis, a social worker to make sure all was good in our world, cardiology of course, and she's had routine blood work to make sure her white blood cell counts look good (because children with DS are at a higher risk for developing Leukemia too).

We go back in February and we'll see the Down Syndrome clinic doctor, cardiology & get an echo cardiogram, and see an ENT doctor for a new hearing exam. For the most part we never leave our room unless we need a specific test. The doctors come to us.

It saves me hours of time - I don't have to find my own doctors & drive all over central Illinois to see them...which if you live in central IL you know what I mean. I could be in Springfield one week and Champaign the next - so one day in St. Louis is very much worth the 2 hour drive.

When we delivered Ollie Faith in St. Louis, by the time we left - she had some of her vaccinations, she had an ear exam in which she failed, she had physical therapy and developmental therapy assessments, and they had all her future appointments setup for me in a packet ready to go. They had scheduled appointments for me with her regular at home pediatrician & the best part - they had already contacted Early Intervention to get the ball rolling for Ollie to start in home physical and developmental therapy - which for those of you needing those services - this is a huge help!

So thank you St. Louis for doing SO much for families. I can't imagine how many appointments we'd really have if we didn't have a Down Syndrome clinic to utilize. If you have a child with Down Syndrome & live anywhere near a hospital with a clinic - I highly suggest you utilize their services - well worth your time :) And if you live near St. Louis - you can fill out online information & I promise you they will call you back within 2 days - they are on top of their websites!

Another 4 Letter Word...

2011-10-06T09:00:00.000-05:00

Retarded.

(OK I know it's not 4 letters, but might as well be)

What does that mean?

Well in the past it was used to describe a medical condition where a person had delayed learning - mental retardation - and honestly we all know what it means.

However, society has twisted the word, we have used it so much to basically call someone: ridiculous, stupid, moronic, idiotic. We've said, why did I do that I'm such a retard, can you believe so and so did that - what a retard, my phone isn't working it's being retarded...and the list goes on and on

I did it in the past. Totally guilty.

However, I am now educated that retarded is a hate word. Once you are in the special needs community when you hear the word retarded, it just stabs you in the chest & makes your eyes water.

When people I love use the word I cringe a little bit, and I know they do too once they realize they said it around me.

Why?

Am I being sensitive? No not really. Because you see, my sweet Ollie isn't ridiculous. She isn't stupid. She isn't a moron.

The medical community has now replaced the word mental retardation with cognitively delayed. Yes, it means the same thing medically, but it doesn't have the negative spin on it that we have created.

So I ask you to please go here & sign the pledge. For Ollie Faith and so many others, be aware of what you say because words really do hurt. And when you are an adult you are responsible for your actions & what you teach your children. Remove this word from your vocabulary. Make an impact on your children that the R word is not acceptable at any time.

Spread the word to end the word!