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Operation NICU Surprise - Tripler Army Medical Center (Hawaii)

5/20/2014

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Earlier in the month we asked everyone on our Facebook page to nominate a NICU and/or Hematology/Oncology unit or clinic that was there favorite to receive a special surprise from Gracie's Gowns!

We are choosing two NICUs and two Hematology/Oncology units from those nominated to receive a special box from us. The first NICU was chosen - and it is going to Tripler Army Medical Center's NICU in Honolulu, Hawaii! Jennifer nominated the hospital after her son Colton (who is also a Gracie's Gowns recipient) was born and cared for by the NICU staff. She was awesome enough to include a story of his stay and just how wonderful the staff was - and some sweet photos to share as well!

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Here is her precious Colton when he was born and cared for back in August of 2011. She includes the following about the hospital and staff at Tripler Army Medical Center's NICU.


"Our son was in the NICU for 12 days in August 2011. Our pregnancy with my son was very rough. Not many doctors believed he would make it or he wouldn't live long after brith. The NICU was just very amazing with him. They did everything they could to help him and it was so nice to finally have someone believe in him. They felt like family to us when we were there. And they just went above and beyond for my son. The NICU staff was just amazing! My son had an MRI when he was 1 1/2 months old and they let my son back into the NICU to be observed overnight bc they knew I was very uncomfortable with him going to the PICU with a bunch of sick kids. They were very understanding and cared very much for my son! And being a Military Hospital a lot of kids are in there with just one parent and no other family members to help them out during a stressful time in life and they could use a little a cute hospital gown!"

The photo above on the left is Colton in his gown from us back in September of last year (2013) and the photo on the right is him today at 2.5 years old! Look how much he has grown and how precious that smile is!! Way to go Colton - you've come so far and we have no doubt it was because of the fabulous start and care you have received since coming into this world! 
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So what's the surprise we're sending to Tripler Army Medical Center's NICU?

Well, we are sending them thirty NICU smocks to be distributed to the babies they care for! We know it doesn't remotely even make a dent into the 1,100 babies they serve annually, but at least there will be thirty styling babies this year!

These will be sent out this week to Hawaii and we hope they are received with much love and bring many smiles to the families that receive on of the gowns!

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Thank you Jennifer for nominating Triple Army Medical Center's NICU and sharing Colton's NICU story with us and allowing us to share it with all that may read our posting!

Thank you as well to Kim for sewing pretty much every single one of these thirty gowns going to the NICU (after we drew the name - we learned Kim's granddaughter was born at this hospital as well, but fortunately did not need to be admitted to the NICU). 

Stay tuned for our second NICU to be drawn once we have the items completed - but also for our Hematology and Oncology units/clinics to be chosen!

Lots of Gracie's Gowns cuteness to come!
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Precious Angel Bears - Eddie and Sofia

4/18/2014

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Remember back to last month when we made Lucy's bunny?

We decided this was a great idea and that we would continue to do such gowns for the children that gowns were requested for, but unfortunately passed away before their gown was able to be made and sent to them.

The first of the three I have been working on is going to the Livingston Family in memory and honor of their son Eddie who passed away from Neuroblastoma in 2013. 


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His nickname was "Superman" and his gown was actually requested by a mutual friend of the family and myself. Isn't he such a handsome little man? I bet he is an even more precious angel - flying around with his cape and all...having all kinds of fun like little boys should!

We purchased the superman fabric, but two days after having his fabric Eddie passed away, so the special bear below will be headed to his family in Florida.

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The second of the three is going to the Scott family in honor and memory of precious Sofia who passed away in March (on my little man's birthday actually) from complications with Spinal Muscular Atrophy Type I. 

Her gown was requested by a friend of the family, who also asked that we still send her gown to them as a keepsake. Once again, we decided to make an angel gown with a bear to be sent to them.

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And here is the beautiful princess Sofia.

Her angel bear and gown will be making it's way home this weekend as well. Her gown was completed (in her size), but wasn't able to be sent before we learned she had passed away.

So, we sized it down to fit the teddy bear, below is her angel bear. It didn't quite want to sit up on it's own - hence the kinda of squished look in the photo.

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Will be working on getting the third one done and posted - it is such an honor to make this tributes to the families we've received requests for and while we weren't able to provide their child with a gown to wear throughout their journey, at least we now have a way to honor their fight.

To the Livingston and Scott families - we are still praying for each of your every day...and while the loss of a child is beyond all words and the hurt will always still be there in many ways, we pray each day you find a little more peace, a little more comfort and a little more love from those surrounding you in prayer.

Much love and many blessings,
Gracie's Gowns
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A Time to Remember - Two Years

3/25/2014

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This past weekend we celebrated our two year anniversary in making hospital gowns for children across the United States and around the globe. What a great accomplishment, what an amazing experience, what a blessing for my own life the past two years have been (even with the crazy times)...but we also took the time this year to celebrate the lives of the children we have made gowns for and remember those that have passed away over the past two years.
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Each child we made a gown for that traded in their super hero capes for angel wings had a lantern with their name, date of birth, date the became an angel, diagnosis and anything else the family, us, or the person who purchased the lantern in their memory wanted to say on it.

This year we released 45 lanterns - there were a few duplicates from where Gracie's Gowns had a lantern for the child and someone else wanted to purchase a lantern in memory as well, but overall there was one lantern per child. We had a few lanterns as well for children that we did not make a gown for, but were warriors as well - and we gladly added remembering their courage, strength and smiles to our ceremony.
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Due to some weather related issues, we started later, but lanterns went in the water around 8:00 p.m. and the final one went out about 10:00 p.m. It was a very cold night, but watching the lanterns float in the water, seeing their reflections and just how they illuminated the water was breath-taking. Even more so, it was very, very emotional for me. Too have a visual of the children that lose their lives battling illness was heart-breaking...to know that this is only the children our organization has personally worked with in two years was devastating. There are so many more children who pass away each day, week, month and year that if we lit a lantern for each of them - we'd have to worry about them catching themselves on fire...there wouldn't be enough water for them all to float.

Watching the candles go out was probably the most emotional part of the whole night.
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The lanterns - if the wind didn't blow them out - started to sink as they were wet. They are biodegradable, which is the point for them to get wet and sink/fall apart/etc. But as they did...you would see this light, barely above the water...like it was holding on unto the last second. Fighting until the very end to stay shining. They flickered, almost went out, flickered some more, got brighter and held on...and then once the water came closer, the flame disappeared without any warning. Just like our little warriors.

They fight until the very end, giving it 100% and then some - they have so many close calls and yet still manage to pull through and almost make a complete turn around and then...in a blink of an eye, they are gone.
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Here is all of the lanterns we released out in the water - a beautiful tribute and celebration of their life.

Over the next few months, I will be creating an angels/in memory of page here on our website. It is my hope to get each child that we know has become an angel and learn about the ones we do not already know, on that page with their parents permission and help.

This will become an annual event for Gracie's Gowns - and for those that may not be able to attend at night, it is in my plans to do a balloon release during the day and make that a family event as well.

To view all the photos and lanterns from the event - you can visit this link below:

Gracie's Gowns Two Year Anniversary Lantern Release
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Donation to the Little and Dependent

1/25/2014

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Eastern Tennessee Children's Hospital is one of the most amazing children's hospital in the country. Not only do they care for a variety of pediatric illnesses and needs, but they have a super special NICU. 

The reason their NICU is so special is because they are one of the hospitals that treat the highest number of drug-dependent newborns in the United States. And we aren't talking street or illegal drugs...these are prescription pain medications and most obtained under normal circumstance.

These babies are weaned off prescription medication, by being given doses of morphine until they are able to tolerate being completely off any kind of opiate. This process can take days and week to accomplish. The unit can hold 49 infants and over half of them are born with neonate abstinence syndrome (drug-dependent), these babies have to be watched around the clock for seizures and even worse, in case they stop breathing.

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When I was in college, this was a topic I was starting to write a research paper on...it is a personal subject as my youngest was born drug-dependent and not because I misused my pain medication, but because I was given excessive amounts of pain medication between all of our admission during pregnancy for pre-term labor and for the amount of pain I was in throughout the entire pregnancy because of the amount of scar tissue I had and two pregnancies very close together and severe anemia issues as well. 

Only problem was, when she was born, we didn't know what was the cause of all the problems we had in the first two months of her life, until I happened to read a forum on drug-dependent babies and all the pieces fell into place. It was scary.

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So when Ellen from Socks 4 Surgery posted the articles published in 2013 about Eastern Tennessee Children's Hospital and what their NICU was doing - we decided that some extra comfort needed to be sent to these precious little ones as well.

Ellen sent out socks and hair bows and in her awesomeness asked if we had any gowns that we could send their way as well. I had to wait until I got back to the house and went through what we already had sewn NICU Smock wise and put together a box that we will be sending out the the hospital this Monday.

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So in total we have twenty-eight gowns headed to the hospital's volunteer services and some of our brochures to be used throughout the hospital for other children that may want a gown of their own as well.

We will keep praying for the hospital's staff and volunteers that are working with and caring for these precious babies and their families. We pray for the babies and their families as well through this rocky start to their journey and lives. 

We hope these gowns find each little doing the best they can and provide them with a little extra comfort.

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Clicking on the picture above will take you to a brochure (PDF Format) the hospital has created on Drug Use during Pregnancy and about Neonatal Abstinence Syndrome.
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Sharing with Angel Love Boxes

1/13/2014

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This past summer these little ones of mine got a really awesome surprise in the mail - it was this big box filled with goodies for each of them and something a little extra special, for our special little man.

The organization is called Angel Love Boxes - they provide care packages to children with special needs and their siblings! Each month they have a certain amount of little ones they put boxes together for and they also help with certain medical equipment/items/devices that may be beneficial to them as well.

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Here is some of the goodies that were sent in our box. The items they have each month vary based on donations of items themselves, sponsor donated items and the specific needs of the child, but also they are based with the interest of each child the box is for (and their siblings too).


My little red head was upset I wouldn't let her play with her items until I got a picture of everything...mean mommy I suppose. But I knew one day I would want pictures to share and promote Angel Love Boxes through Gracie's Gowns as well.

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So here is where we are sharing with Angel Love Boxes - and giving back to the organization that gave my little guys such a wonderful summer surprise!

This Thomas the Train item is a weighted blanket. For those that don't know or haven't read back through, he was diagnosed on the Autism Spectrum and also has several sensory related issues and it was recommended to us that a weighted blanket might be beneficial to him. He loves his blanket (and so does mommy at times even) and it has helped with some of the sensory issues he has at night. If it wasn't for his occupational therapist suggesting it, I would never have thought about it. We received our blanket when Angel Love Boxes first started making them - and the quality is amazing. It washed great as well!

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You can see the detail here in the stitching where each section is sewn and filled evenly to divide the weight evenly throughout the whole blanket. 

I had tried making one several months prior to even hearing about Angel Love boxes and it was an epic fail...which remind me I need to take it apart and either fix it or just make it into a regular blanket...add that to the to-do list for when there is extra hours in a day.

So for Angel Love Boxes we have several pieces of fabric measuring around a yard and more to send as our family's way to say thank you for our box, but also as Gracie's Gowns and saying thank you for your love and support of us throughout the past year! This box is fairly heavy and packed to the gills with fabric, so once we have some extra shipping money we will be sending it out. Here are some of the fabrics that will be making their way south to Alabama!
Have a wonderful everyone!

Jessica
Gracie's Gowns
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CureFest 2013 

11/2/2013

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On September 1st, 2013 - Gracie's Gowns participated in CureFest for Childhood Cancer on the National Mall in Washington D.C. with 52 other organizations. We banded together for the day and there on out to advocate for pediatric cancer awareness, research, treatments and cures.
The event was co-hosted by Journey 4 A Cure and theTruth365 - both have done amazing things for children battling and surviving cancer. They not only bring awareness and research funding, but they get to you on a personal level - they tell each child's story, I'm sorry I need to rephrase that - they have each child tell THEIR story, each family share their experience in ALL aspects of the cancer world, the successes and even more heartbreaking, the losses. They show the real statistics of the pediatric cancer world and if you read each of them...it will change your life forever.
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At CureFest they had several speakers - parents, siblings, organization representatives...but the ones that shook you the most were the children.

Gabriella was one of those children - her speech had you laughing at one minutes, inspired throughout and in tears over the reality of what cancer does to children. Her speech was beyond motivational - there was no way you could hear her give "the cold hard facts" without making it your mission to do something to make a difference. 

I am posting her here, because this past weekend, Gabriella lost her battle very suddenly to a brain tumor. She was diagnosed in November of 2012 and passed away October 26, 2013. She made the last year of her life a mission, a legacy even...to show Virginia and the world they HAVE to do something to improve the lives of children battling cancer, to "give them their childhood" to not only treat, but cure the cancers and in a way that doesn't rob them of the life they deserve. She raised funding for the Make-A-Wish foundation after she was granted the wish to go to Paris, France with her family - she knew that other children deserved the chance to have that one lasting memory with their families. She helped raise over $250,000 for Make-A-Wish in just one campaign. 

Gabriella - know that you are deeply missed, but never forgotten! You have impacted and changed so many lives that can only be counted by God. Your parents will continue your work, those that are touched by you have been inspired to do the same as well. We may never do it as great as you did, but we will always try our hardest.

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Throughout the day we gave away 50 goodie bags to those that stopped by our table - here is a collage of the items that were included. Knowing we were headed to this event, simply because it was local enough to us to do so, I invited other organizations and businesses to contribute to our bags and help spread the word about who they are and what they do.

Healing Helpers participated with their Heart Key Chains that they also embroidered a Yellow Ribbon on.

Socks4Surgery participated with their information and magnets.

Pink Door Fabrics sent some quilting bundles of fabric - Chelsea and Charlie have been amazing with donating and letting me purchase fabric at a lesser cost for gowns.

Bee Brave sent their mini stress relievers - which if you remember from our blog on them, they were made from scraps of fabric from our gowns.

We of course included our bracelets and information.

Hollie is a Thirty-One Consultant and contributed her information and nail files from Thirty-One Gifts, she also contributed our raffle item for the day too!

The Hensons contributed their information about Zeal for Life (will update this with their website, once I have it again, it is not with me right now).

Tricia contributed her Pediatric Cancer Awareness bows! One of which was given to Gabriella when we met her. She wanted it so bad and decided it looked great on her dress for the day!

THANK YOU to everyone who contributed to our bags! I know each item was well received!

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One of the best moments was meeting The Beltran family! We had been working on these freckles for his siblings and when I found out that they were going to be at CureFest, I just knew I had to get them done. 

Dominic was a local little guy that passed away from cancer - he loved superman so the fabric was made with superman and each one had a different color for the eyes, arms, legs and stomach and then we embroidered his name in gold.

This is the page they created for Dominic on Facebook and they are continuing their efforts for pediatric cancer research, awareness and advocacy!

https://www.facebook.com/Staystrong4dom

Here are the rest of our photos from CureFest for those who want to see some of them. I hope you enjoy them and check out all the amazing pages and organizations we've posted on the blog.
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Busy Buddy by Bee Brave

8/18/2013

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This amazing tray with a removable pillow that also becomes an amazing storage keeper is called a Busy Buddy - the amazing mother, daughter team behind it is called Bee Brave!

Our son David, was a recipient of a Busy Buddy - he is autistic (you can read back through the blogs and find his full story) and we spend two hours in the car every trip to therapy, every appointment, every specialist and every testing...which this summer was three days a week...for him, it is boring and frankly he hates it!

I cannot tell you how much he LOVES this - he can use it at home on his lap to color (we don't have much table space, and he can take it away from the girls), he uses it in the car, he can hide his most treasured possessions inside the pouch for the pillow (it has a zipper)...and well it worked great for mommy when I was laid up in bed and I was able to write out the new requests for gowns even.


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David is pretty picky about what he likes - what child isn't right?! I had just made him a special little bean bag seat/ottoman thing...lol. And this was the fabric he picked out for it. The amazing part of his Busy Buddy, was I was able to send in this fabric and her mother made the pillow with it! David was so excited to see his "moo cows," "piggie" and tractor on the fabric.


Melissa went one step farther and matched the painting on the tray to the fabric as well! Once again - he was in HEAVEN! It was so great to see his face light up when it arrived in the mail and it was perfect timing as we had therapy the next day! But he wanted to take it outside to play with his trucks in the sandbox instead...lol.

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So we compromised - he is David with his Busy Buddy!

He was allowed to take it outside with him, but it had to stay with mommy, I wasn't about to have sand start coming out the zipper pocket...lol.



He doesn't always smile, but he wanted to say "mooooo" as his picture was being taken. The boy loves cows, what can I say? He wants to be a cowboy when he grows up.


When I sent in David's fabric for his Busy Buddy we also went a couple steps farther and created a wonderful bond and work relationship on the Gracie's Gowns end with Bee Brave.

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We sent all this amazing fabric over to Bee Brave to help make the pillows for other children, teens and adults that end up being on their sponsorship list!


Of course, it is mostly all scraps from gowns that have been made for children by Gracie's Gowns. Some of our gowns we have lots left over, and this is the case with these fabrics, but we also sent lots of smaller pieces to use as well for their mini stress relievers!


We filled up a diaper box of fabric and mailed it out to Melissa and her mom and something even more amazing is stemming from this too!

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We are participating in CureFest 2013 in Washington D.C. - it is an event sponsored by The Truth 365 to bring awareness and support for Pediatric Cancer.


The event is on September 1st, 2013 and all of the participating organizations, work with children who have cancer, fund pediatric cancer research, promote awareness, etc.


Bee Brave - is sending us 50 mini stress relievers for our goodie bags to distribute throughout the time of the event! We wanted to help promote other organizations that are small like us, but work with children who have cancer, and just chronically ill children as well and let them not only put informational materials in our bags, but include a little item too!


Melissa sent me this picture of some of the ones heading our way here soon! All I can think of when I see this is the precious kiddos that received gowns from the same fabrics and it makes me tear up, knowing they have inspired something so amazing in my own heart and really and truly are the heartbeat that keeps Gracie's Gowns running!

If your organization isn't attending CureFest and would like to include an item and informational materials in our goodie bags, we are putting together 50 bags. The items need to be at my house no later than the 29th of August so I can get them put in the bags.


Direct sales companies are allowed to include an item, but I am only taking one representative per company - and you must include a sample item with your information. Please contact me BEFORE sending anything, just to make sure I don't have another representative already - and that I need to keep my eye out for a package - same with any organization.
To learn more about Bee Brave you can visit their 
Facebook Page at (stop by and send them some love, Gracie's Gowns style of course):
https://www.facebook.com/beebrave2013



And their website is:
http://www.beebrave.org

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The Chartres Cathedral 

8/2/2013

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When I was in high school, I had to opportunity to go to France with my French teacher, friends in my level and students from other French levels as well.

It was an amazing trip - everything I loved all in one place. Music, the history of France, the shopping everyone talked about, the monuments and artwork...it was spectacular.

The cathedrals and castles were probably the most intriguing sites we saw. Of course the Eiffel Tower and the Arc de Triomphe, the Louvre and Versailles were unique and ravishing, but the cathedrals really drew my attention above all else.

Something about the architecture, the amount of work that had to be done my so many people, over years and years of time...and even sometimes having to be redone because of fires, natural disasters and war. And the final project still standing for all future generations to see, it was breath-taking. Most of the cathedrals are still in use for religious services in France (sorry random side note there and memory from touring). Chartres Cathedral was the one that intrigued and amazed me the most. And here is why....

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The Rose Window - look at it, isn't it just beautiful! That is all stain glass. This alone took years to complete...the detail is so intrinsic and most of it is still the original glass that was used when the window was first constructed in 1215. The scene the window depicts is the Last Judgement, and was a gift that at the time cost 80,000 pounds! Now let me share a little story with you as to why I am even blogging about Chartres Catherdral, the Rose Window and why it's detail, the beauty and the work involved mean so much and can really put things into perspective for each parent who reads this.

Once again - this is from a posting on Facebook - though I do not know who originally wrote this, to give them the credit, but I pray one day they see the blog and realize how much of an impact it really has on those who read it.
Invisible Mother

 It all began to make sense, the blank stares, the lack of response, the way
 one of the kids will walk into the room while I'm on the phone and ask to be
 taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'
 
 Obviously not; no one can see if I'm on the phone, or cooking, or sweeping
 the floor, or even standing on my head in the corner, because no one can see
 me at all. I'm invisible. The invisible Mom. Some days I am only a pair of
 hands, nothing more! Can you fix this? Can you tie this? Can you open this??

 Some days I'm not a pair of hands; I'm not even a human being. I'm a clock
 to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is
 the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

 Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?,
 What's for dinner?'

 I was certain that these were the hands that once held books and the eyes
 that studied history, music and literature -but now, they had disappeared
 into the peanut butter, never to be seen again. She's going, she's
 going, she's gone!

 One night, a group of us were having dinner, celebrating the return of a
 friend from England . She had just gotten back from a fabulous trip, and she
 was going on and on about the hotel she stayed in. I was sitting there,
 looking around at the others all put together so well. It was hard not to
 compare and feel sorry for myself. I was feeling pretty pathetic, when she
 turned to me with a beautifully wrapped package, and said, 'I brought you
 this.' It was a book on the great cathedrals of Europe . I wasn't exactly
 sure why she'd given it to me until I read her inscription: 'With admiration
 for the greatness of what you are building when no one sees.'

 In the days ahead I would read - no, devour - the book. And I would discover
 what would become for me, four life-changing truths, after which I could
 pattern my work:

 1) No one can say who built the great cathedrals - we have no record
 of their names.

 2) These builders gave their whole lives for a work they would never
 see finished.

 3) They made great sacrifices and expected no credit.

 4) The passion of their building was fuelled by their faith that the
 eyes of God saw everything.

 A story of legend in the book told of a rich man who came to visit the
 cathedral while it was being built, and he saw a workman carving a tiny bird
 on the inside of a beam. He was puzzled and asked the man,
 'Why are you spending so much time carving that bird into a beam that
 will be covered by
 the roof. No one will ever see it'

 And the workman replied, 'Because God sees.'

 I closed the book, feeling the missing piece fall into place. It was almost
 as if I heard God whispering to me, 'I see you. I see the sacrifices you
 make every day, even when no one around you does.

 No act of kindness you've done, no sequin you've sewn on, no cupcake you've
 baked, no Cub Scout meeting, no last minute errand is too small for me to
 notice and smile over. You are building a great cathedral, but you can't see
 right now what it will become.

 I keep the right perspective when I see myself as a great builder. As one of
 the people who show up at a job that they will never see finished, to work
 on something that their name will never be on. The writer of the book went
 so far as to say that no cathedrals could ever be built in our lifetime
 because there are so few people willing to sacrifice to that degree.

 When I really think about it, I don't want my son to tell the friend he's
 bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the
 morning and bakes homemade pies, and then she hand bastes a turkey for 3
 hours and presses all the linens for the table.' That would mean I'd built a
 monument to myself. I just want him to want to come home. And then, if there
 is anything more to say to his friend, he'd say, 'You're gonna love it
 there...'

 As mothers, we are building great cathedrals. We cannot be seen if we're
 doing it right. And one day, it is very possible that the world will marvel,
 not only at what we have built, but at the beauty that has been added to the
 world by the sacrifices of invisible mothers.
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Heroes with Grace: William

6/29/2013

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William, or Liam as he is more popularly called is a handsome two year old boy that has been diagnosed with Mucopolysaccharidosis or abbreviated as MPS.

It is a rare disease and one that makes every day a battle, every day unknown and every day full of adventures.

Liam also suffers from conditions related to the MPS. These include: food allergies, an arachnoid cyst in his Right Cerebellopontine Angle Cistern with enlarged space around it, Ataxia, Arthritis, Bilateral Dislocated Hips (with Defective ossification, dysplastic acetabella, & damage to his iliac wings bilaterally), Chronic Regression, finger clinidactyly bilaterally,  Developmental Delay, irregular Gait, Hypersensitivity, Hypotonia, Hearing Loss, Osteoponia, Plagiocephaly, Seizures and he is also nonverbal.

So much for such little ones to go through. Fortunately he has a great family and friend support to help get through each event and make every moment count. It has not been an easy road and there has been lots of obstacles to climb in his two years here on Earth. Liam has been poked and prodded his whole life trying to find answers and find out what's wrong; but he is blessed to only have had 1 surgery so far. He had emergency surgery to repair his inlingual and umbilical cord hernias at 4 months old. He was transported from one children's hospital to another that would be able to handle doing this emergency surgery while he was in ICU battling RSV. His surgery was only supposed to take 30-45 minutes but ended up taking almost 3 hours, as they had to fight to safe his left testicle due to all the fluid buildup cutting off the blood flow to it. Luckily it was saved and he was released after being in the hospital for a month.

In the future Liam will have to have hip surgery on both hips in a few weeks time and a total hip replacement if those surgeries don't fix his problems. There will be many more surgeries in the future, but Liam and his family are just taking them one at a time.

Liam's mom described their most frightening and most exciting moment in their journey with MPS so far like this:

The most frightening moment was June 7th, 2013. Liam didn't sleep really at all the night before and he went to bed fine around 9pm but then at 130 he woke up screaming and rubbing his legs. He stopped when I cradled him, but the moment I put him down he would scream. this went on until 830 when he finally let me put him down. Liam then went on to sleep until 3pm ate lunch and went back to bed. He didn't walk/crawl or even attempt to do anything but sit in the chair I put him in and have me hold him. The doctor says that some days are just bad ones. He didn't even want to see him!

Most exciting moment was the first time he said momma. I was blessed to hear him say it countless times for 3 whole months; before he became non-verbal for no known medical reason.
There was more that Liam's mom went on to say about MPS - which I didn't know, but also a beautiful view of how all our special children, are still children...no matter what they are going through or up against, they still all just want to be the child they were meant to be.
Did you know that MPS is detected by a simple blood or urine test. But it is currently not a test regularly done in pediatric doctor offices. Please at your next doctors appointment ask them to test. Especially if your child has autistic tendencies, developmental delay or is regressing.

There is no cure but through awareness there is hope! 


Liam may have a lot going on but at the end of the day he is just a toddler, who wants to play with his cars, balls & watch star trek. He is the happiest little boy you will ever meet and is such a fighter! He fights everyday just to walk and play. 
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To learn more about and help support Liam and his family you can visit their Facebook Page.
www.facebook.com/fightingforanswers

To help provide financial support to the family you can donate through their gofundme page below. The family is currently trying to move from Texas to Florida because their insurance doesn't cover out of state appointments, but also because the doctors that specialize in MPS are located in Florida.
http://www.gofundme.com/fightingforanswers

To Learn More About Mucopolysaccharidosis view this link:
http://www.mpssociety.org/

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Gracie's Gowns Meets: Callista

1/1/2013

1 Comment

 
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Going to start out the new year, yes it really is 2013 already, by introducing you all to a few more of the kiddos that we have made gowns for. This morning I am going to tell you a little about Miss. Callista!


Callista an 11 month old little girl with Spina Bifida and Chiari Malformation. I remember when I first even knew about Spina Bifida it was from a picture on the refrigerator of the parents of a friend of the guy I was dating at the time (follow that...anyway) it was from the newspaper article of the very FIRST fetal surgery being done on a baby with Spina Bifida and the baby reached out and grabbed the doctor's finger. Anyone else remember that? Well now that is almost STANDARD practice for these precious little ones!


Here is what little Callista has undergone since the fetal surgery from her mommy:
Callista and I underwent fetal surgery to repair her spina bifida when she was 22 weeks gestation at Vanderbilt Children's Hospital.

At 2 days old, she a shunt placed for hydrocephalus.

At two months old she had a decompression surgery.

At four months old she had a g-tube placed.

At eight months old she had a double hernia repair and a vesicostomy.

She currently has physical and occupational therapy 1-2 times a week.

These precious sweet pea still has a long way to go with more surgeries potentially in her future, the need for leg braces so she can being to bear weight and learn to walk (my son had to wear leg braces because he was bow-legged...this was not a fun experience for him or us, but one that luckily we didn't have to continue for a considerably amount of time) and she may also need a wheelchair in the future. 


I've had the joy in celebrating some successes with Callista through her Facebook group and watching her grow and develop. Even though she is delayed compared to most children, she is meeting milestones in her own time and fashion and it is such a joy to see her and her family get so excited about what she is able to accomplish now!


Here is another bit from Callista's mommy about her journey so far:
The most frightening thing was the initial fetal surgery as we had to deal with the fact that we could lose her by trying to help her. She could have been born extremely early because of the surgery as well.

We also had a pretty frightening beginning. 12 days after we were allowed to bring her home, she started acting very funny. We took her to the ER and thank goodness we did. As soon as we got there, she stopped breathing and turned blue. They rescued her quickly but we ended up with another 2 month stay in the hospital where they did her decompression.

The most exciting part of our lives is just simply seeing her grow. Although she is far behind on her developmental milestones, every time she reaches one is a celebration. She is beginning to support her own head and has said her first word (Da-Da!).

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And here is the precious little princess!!



To follow and support Callista visit the following pages:
https://www.facebook.com/groups/callistasjourney

http://www.callistasjourney.blogspot.com

To learn more about Spina Bifida you can visit the following website (there are TONS of resources and information out there, but this is one that I liked):
http://www.spinabifida.net/

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