Wednesday, December 7, 2011

Gracie Update: Born With A Deletion

To kick off this post, I want to go ahead and set the tone for the remainder of this post. 

Gratitude, Humbleness, Thanksgiving, Gratefulness, Blessed, Steadfastness, Adoration, Praise, and Unwavering Faith.

The above "attitudes" are what I want you to take away from this share. Because this what Jonathan and I have taken away from it. What I want you to understand, is that this is not a time for anger or fear, but a time to appreciate the abundance of blessings that have been given.

About two months ago Grace was diagnosed with Williams Syndrome. The diagnosis came out of left field and hit us hard. During my grieving period I had two choices: #1 I could blame God for this turn of events in our lives. OR #2 I could rely on Him, to bring Joy into the hole that I had felt been punched into our household.

We chose the latter, and I am SO thankful we did. The past two months have been an emotional rollercoaster to say the least, but not once did I feel alone on it. When I need to break down and have a good cry, I know He's there; when Grace has a BIG Breakthrough and I can't stop rejoicing, I know He's there; and when I know my daughter has been pushed to her limit with Dr.'s, I know He's there. Choosing God, instead of blaming God has given us a world of opportunity to grow into a deeper and more personal relationship with Him than we've ever known. When we say we are trusting God wholly with the life of our child, we mean every word of it. 

It is because of this relationship that I am able to finally sit down and write this post (I have sat down many times and started, but never could finish). We wanted the chance to first tell our families and some of our closer friends, and we needed time to process the change in our lives that was taking place. But now, now, I think it's time; and we are ready to invite all of you to join us in prayer for our little angel.

Grace December 2011

A little about Williams Syndrome... by ABC News

The two videos are a Part 1 & 2 from a 20/20 Special.

A little about Williams Syndrome by The Williams Syndrome Association

"Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.
WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.
Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.
But there are major struggles as well.  Many babies have life-threatening cardiovascular problems.  Children with WS need costly and ongoing medical care, and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. And as adults, most people with WS need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees, for example working at senior homes and libraries or as store greeters or veterinary aides.  
Just as important are opportunities for social interaction. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression.  They are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships."

Yes, there is A LOT that Grace has to overcome. But her support system is fantastic and we are blessed beyond measure for that. :) And though we are sad with the answer, we are thankful to finally have an answer. Now we can refocus our attention on how we can better serve Gracie.  :) And I can't express my relief to find out after two years; that it was nothing that I was doing or wasn't doing that caused her to be the most challenging baby for the first 15 months. It was simply Williams' going undiagnosed and un-addressed. I cannot express how thankful we are to the medical professionals here in DFW, without you, we would still be living undiagnosed. Ya'll are one of the best things that has ever happened for our little sweetie! :)

If you would like to learn more about Williams Syndrome feel free to check out the WSA website:

To show your support for Williams Syndrome families you can "like" the sites listed below:

Stayed tuned for Grace Updates, WS Walks, and Benefits come to the DFW Metroplex!

Wednesday, September 7, 2011

Cake & Surgery for August Please....

Well SOOO much has happened since our original visit with our G.I. Tract Dr. SOOO let me fill you in!  :)

First of all, some precious little Angel turned TWO on August 12!!!! To celebrate, we took the whole family out to dinner at The Cheesecake Factory! Grace LOVED getting sung to by the waiters! :) Even some of the people seated around us came over to wish her a Happy Birthday! It was a fun and delicious way to celebrate! 

Blowing out the Candle!

The Cheesecake Factory! :) Yum!

Mommy & Daddy helped with this! :)

Most of the group! My Mom is taking the picture! :)

This year we toned down the birthday a tad due to her surgery, probe, therapy, and ER visits... Not to mention we are still in the process of moving LOL! But we still got some super adorable pictures to celebrate! Hope ya'll LOVE them as much as we DO!

LOVE her BIG Cheese Smile! 

She was ALL about those Pearls!!!

Driving the PINK Car!!

And.... She Loved it!!!

Flaunting that Baby Chunk!!! :)

Yes!!! Rockin' the High Heels!

Awe!!! My TWO year old!

In Color! :)

Loved B&W and Color... Couldn't choose!

Pretty sure she needs a car now haha!


She was like... What is going on?! :)

BIG Cheese!!! :)

Toward the end of August Grace had her esophagus, tummy, and small intestine scoped. While they were in her tummy they found that her pylorus was very tight. From the pictures they showed me I couldn't even make out an opening. They said that it needed ballooning so her food could pass through without the long delay, so we signed for it and were able to see our princess in recovery within the next half-hour. I uploaded a before and after picture, sorry for the low quality (pic. of pic. lol).

Her Pylorus, Pre-Balloon

Her Pylorus: Post Procedure

While under the anesthesia they had inserted her probe, and had her all taped up & braced up. It took foreverrrrrrr to get her to take some sips of juice before they would release her. I seriously thought we would be there until closing lol. We brought our groggy little girl home to a house full of NEW toys! Jonathan & I went and cleaned out Toys 'R Us the day before. We felt SUPER guilty about everything we were going to have to put her through, so we thought LOTS of toys would somehow make recovery more enjoyable haha! Jonathan's company was great about letting him off to be there for Grace during this time. The following morning we were able to take out the probe, and I couldn't express to you HOW happy Grace was to get rid of the probe and arm braces!

Grace getting Love from her Daddy!

Still groggy/fussy from the procedures...

The results from her biopsies and probe came back recently. The GREAT news is that everything came back normal on her probe, but the biopsy they took indicated that she had irritated stomach lining. So we will be putting her back on prevacid to help with that. We feel SO Blessed that they didn't find anything really dangerous!

As for her all her therapy needs we have her in ECI until we get moved over to Cook Children's Therapy. And we have an appointment with Our Children's House at Baylor for a feeding assessment in November; I am SO excited about this program! They truly work miracles when it comes to feeding disorders.

At the very end of August we took Grace for her first visit with her neurologist at Cooks. He is FANTASTIC!! Excellent bed side manner and an overall really genuine Dr.! After a million questions and observing Grace he suggested we hold off on the MRIs and CAT scans. He said her developmental delay could largely be attributed to her G.I. Tract issues. He wants us to give her body time to adjust and then game-plan from there.

Grace playing before we left for the Neurologist :)

This is her, "Really Mom, put the camera away" face lol!

Needless to say, between Grace's appointments, keeping finances, cooking dinner, and general housework... I am one SUPER Busy momma! :) But I am excited that Grace is FINALLY getting the help she needs! :)

We are SO looking forward to our new place! I have a countdown going LOL! NINE Days!!! :) Can't wait to have all our family and friends over for dinners!  

Tuesday, August 2, 2011

G.I. Tract Dr. Visit #1

We have just arrived back home from our first visit with our G.I. Dr.! Grace is playing with her toys and watching a couple of her shows I have recorded on the DVR (yes, after a day like today she deserves a little spoiling!). The Dr. diagnosed Grace with a milk ALLERGY, she is NOT lactose intolerant! Seriously not a fan of our small town Dr.s today, they missed SO much! I have a feeling as we continue with all the various visits, that sentiment will continue growing lol! The Dr. told me that many kids with a milk allergy have various other allergies, so we had her blood drawn (which she was AMAZING during, and I couldn't believe how well she did!) they are going to test it to identify any other allergies. I am praying that milk is her only one, it would be so un-fun for her to be denied so many delicious treats during her childhood.

Cooks Children's
We are also scheduling a procedure for Grace to get a scope ran through her esophagus, stomach, and intestine to check out their condition and any abnormalities. Mommy is very anxious about this (ALL Prayers are SO Appreciated!)! I know it is a simple procedure, but when it's your own daughter... It seems like such a BIG procedure... They also will be inserting a small noodle-like "scope"into her nasal-throat cavity for her to wear overnight, to collect more information. Thankfully, we will get to bring her home to sleep for the night. I know all this testing is absolutely necessary, but it doesn't mean that it doesn't break my heart. Grace has been such a Trooper through out all the pain and discomfort she has had to experience from the day she was born. To put her through more intentionally is never easy for a parent, even when it is necessary.

If everyone could be praying for her upcoming procedures and continue covering her Dr.s, nurses, and the technicians in prayer that would be soooo phenominal. And if it isn't too much, could we be in prayer for answers... Our sweet baby is almost Two and still is a mystery to the Dr.s... Our Pediatrician informed me that we will try EVERYTHING until we find an answer, but some children remain a mystery even then. It would just mean so much to us to have some answers to the questions we have been carrying around for the past couple of years. And could we also pray for contentment for my family, in the case that they still can't find any....

I want to thank the prayer warriors who have been SO Consistent in lifting up our sweet girl to our Heavenly Father day in and out, your prayers are the greatest gift any parent can ask for. And what is even more amazing, some of ya'll barely even know my sweet baby! That to me speaks volumes on the condition of your heart and your love for the Lord! We are truly grateful for you and blessed to have you in our lives!

Thanks again and lots of Love!

Saturday, July 30, 2011

Goodness! It's been awhile...

So MUCH has been happening in the Wheat Household, hence lack of posting! And we would LOVE to catch you up!

Our favorite Jonathan got a Promotion at Work! Wh08p! We are so proud of him!!! With that promotion came a move to Fort Worth! And we are SO excited to be in Cow Town! :) However, we were also sad to leave some of the sweetest neighbors ever! Shout out to the Thompsons & Bowers! We will miss you guys!

Fourth of July was a whirlwind for us! Instead of the typical cookout and fireworks, we were hauling all of our stuff into storage! But we did enjoy some family time over the weekend! :) But, like any mommy I made time for a few snapshots of Gracie in her 4th of July outfit! Thank you GranGran for taking them! 

So if you haven't figured it out yet, this Momma LOVES Ruffles! :)

Close up on the Swheat Pea! ;)

And I have to give a shout out to the medical professionals here in DFW!!! Truly Phenominal!!! We love our Pediatrician!!! It took 2 years for our past pediatricians to get Grace the specialists she needs, and Dr. Davis got it in ONE Visit!! Major LOVE to Cook Childrens!!! And Yes! I will be baking his office cupcakes! 8)

So Grace has a few MAJOR appointments coming up! And if ya'll could be in prayer for the Dr.'s we'll be seeing that would be AMAZING!!! Please pray for wisdom, discernment, and guidance... I know our God is healer, and that with him anything is possible! In the next few months we'll be meeting with a neurologist and a G.I. tract specialist. If ya'll could also pray for the therapist(s) we are about to start meeting with that would be SUCH a Blessing also! We are trying to get started in a few intensive therapy programs in the private sector. Which essentially take up our lives for the next year, but will truly help Grace recover from her infant illness. A BIG thank you to all of our family and friends who have been keeping our sweet little girl in your prayers. It means more to us than you know!

On a lighter note, we FINALLY invested in a jogging stroller! Since I couldn't decide on a gym haha! And it is the best buy I have made in AGES!!! Grace and I truly enjoy our morning run! She cries EVERY time our run is over and it's time to head home, I am pretty sure this little girl would live outside if she had a say in it! 8) Also, what an arm workout!!! Who knew?!?!

Grace Post-Run! Her eyes are SO Blue outside!

Grace LOVES the Jogging Stroller!
Don't worry folks I am only an arm away and the Brakes are on! LOL!

I can't wait to post some new photos  of our new place!!! I will definitely keep ya'll updated!!! We are VERY excited about this new chapter in our lives! 

Hugs & Blessings!!!

Friday, May 13, 2011

Easter Weekend! :)

Easter for us was a whirlwind of events!!! We had a Birthday Party for AnaBella, an Egg Hunt, Girlie Cousin Pictures, & Grace's Easter Pictures!!! :) We truly enjoyed all the quality family time we had!

AnaBella's Third Birthday!

The Birthday Girl AnaBella!

The Birthday Banner

Her Minnie Mouse Cake her Mommy Made

The Birthday Cake her Gigi Bought

Three Generations of Awesome Gals!

Love Them!!



That Balloon was TOO Cute!

Time to Sing Happy Birthday!

Blowing Out the Candles! :)

Presents!!! :)

Opening her present from Jonathan, Grace, and I! :)

She LOVED her Twinkle Toes!

Playing with the Present my Parents got her 8)

Precious Family Photo!


Girlie Cousin Pictures!

Cousins & Friends!

Clapping & Laughing!

Sweet Smile!!!
Easter Outfit Pictures!

Grace's Easter Outfit!

Standing up pretty!

Love that Baby Girl!

Ahhh!!! She is our little everything! :)
Egg Hunt! 140 Eggs!

Josiah and Elijah hunting Eggs!

Look at him go!

Handsome Boys!

Mommy and Daddy helping him on his first hunt!

That Cast didn't slow him down! lol

Cute! Cute!

Gigi and Bella were a great team, they had loads of eggs! :)

SO Presh!

Elena and Gracie! Love this pic!


He is growing up TOO fast!

The Peaden Kids!

The Flores Kids! LOL

Sammy & Elena!

Grace & I hunting some Eggs!

Aunt Kristen & Mommy helping her fill her basket!

LOVE this photo!

Her FIRST Egg! :)

Love her!

Sweet girl!

Ahhh! What a FUN filled Weekend! I love you Familia and look forward to many more Holidays together! We are all VERY Blessed! :)