Saturday, June 29, 2013

Walking Miracle; Stand Strong!

Monday afternoon Zoey had a check up at Childrens. They removed all the stitches, said her incisions have healed very well, and gave her the green light to begin walking as she is ready to!!

Scars on her calf

Well Thursday night she amazed us all yet again. Zoey very frankly said "I'm gonna walk", stood right up, and WALKED!! Then, at our church's VBS finale, Zoey went up on stage with 300 other children and danced to praise songs!!! We all kind of stood in awe, tears falling, as we watched her dancing and praising Jesus to the lyrics: "We will trust, trust in God alone. We will stand, stand upon His word. And whatever comes our way, WE ARE STRONG, and WE ARE BRAVE.... His truth will be our guide through the day, and the darkest night. Our God will give us strength. We will stand together, stand forever. We will STAND STRONG!"

This girl seriously continues to amaze us every day. She has overcome so much, beat all the odds, and is quite literally a walking miracle!! Just weeks ago, we were afraid she would die. Weeks ago we weren't sure if she would have two legs. We weren't sure if she would be able to walk again, let alone dance. This moment will not too soon leave our hearts!

However, she gets pretty excited to be walking again and goes all crazy, but quickly gets exhausted and is in pain after too much bouncing around, so she reverts to crawling, but she is making huge progress!

She also had another checkup with her primary care physician. There's a little concern because, although the last three days she has been eating well, Zoey has lost quite a bit of weight through this whole ordeal.

Thursday she also had the appointment at Children's Cardiology about her Atrial Septal Defect. She had another echocardiogram and they have said that the hole is significantly large and will for sure need to be closed. They are going to wait until spring of next year before doing surgery, so her body has a good chance to continue to heal from all the surgeries on her leg. They will first try to close the hole by catheter, but it's likely that she will need open heart surgery. This is frightening news and very hard to think about, so for now we focus on regaining her strength, healing from this part of the journey, and reveling in the miracle that she is.

Monday, June 17, 2013

Quick Update and Photos

It's been 10 days since Zoey came home from the hospital. Her leg is healing pretty well, with only a couple of the wider places struggling to stay closed up. Zoey is doing pretty well getting around now- she started crawling a couple days ago! Being able to move around has made her so happy! Although if she over does it, the pain is inevitable :(

She is still not eating very well, but she does drink her PediaSure to supplement. Her favorite snack is Mickey Mouse shaped cheese and hard boiled eggs :)

Monday the 24th is her next doctor's check up and to have her stitches removed. Later next week she also has an appointment in cardiology to have another echo cardiogram, and to talk about what she needs to fix the hole in her heart.

There are still no results back yet on the autoimmune condition. Labs have been sent out of state for further testing. Prayers for provision are needed in this area, as insurance is not going to pay for these very costly testings through an out-of-state laboratory.

Here are some photos from the last 10 days:

Zoey's favorite mode of transportation, a wagon donated by an amazing local family! It's perfect, because one side can be up in the chair position, and the other side down flat with a comfy pillow to support her leg. Of course she brings the whole Disney gang along on her rides! We call her new wagon "Zoey's Minnie Mobile"

Out enjoying the gorgeous sunshine with Mommy.

Sweet girl loving her stickers, a cup of PediaSure, and a Minnie Mouse movie :)

And Auntie's personal favorite: her new hat. We were in Target and she saw this hat and immediately exclaimed with glee: "DAISY O'DARE"! (her favorite Disney movie this week). She puts the hat on and Zoey becomes miss Daisy O'Dare! Too cute!

Friday, June 7, 2013

Welcome Home Zoey!

This evening Zoey was welcomed home with much love and excitement.

Her sisters and two of her cousins worked hard on making Zoey a giant welcome home banner!

We all enjoyed some quiet times visiting with Bryan and Valorie, and playing with Zoey. And of course Zoey got lots and lots of kisses!! 

Kisses from Ama (Great Grandma)

Playing with sissy Hayley

Lovin's from Auntie 

Playing Minnie Mouse, of course, with her Mammie.
(HAPPY BIRTHDAY MAMMIE! What a gift, to see her grandbaby 
come home from the hospital on her birthday!!)

Our hearts were beyond happy tonight, seeing Zoey at home, full of spunk and laughter. This is the Zoey we all know and love so much. It's crazy to think that just two weeks ago, we were in such a dark place when Zoey was fighting for her life. Today she looks amazing, considering all that she has been through! And what courage this little girl has.... I can only imagine how I'd feel after 8 surgeries, but Zoey doesn't fail to have the most beautiful smile upon her face. She is feisty, she is a fighter, she is full of LIFE! 

Zoey, in Greek means "Life". Rene, in Late Latin means "Born Again". How awesome is that?! Zoey Rene is life, and she will have life abundantly! Though she may have quite the journey ahead of her, there is no doubt in our minds that she will overcome again and again. Her life is destined for greatness! 

Thursday, June 6, 2013

Out for a stroll

Zoey had a great day today! Since she was doing so well, the doctor let her leave the hospital for a couple hours! Bryan and Valorie took her for a quick stroll through the mall. Zoey even did her best to eat some orange chicken! Way to go baby girl!! She is still on track to be discharged sometime tomorrow!

A very kind lady at the Disney store got to talking with them about her experience at Children's, and very generously gave Zoey a bag with a pair of Minnie Mouse ears and a little Minnie Mouse stuffed animal. What a kind thoughtful thing she did, that meant so much to Zoey Bryan and Valorie!

Also, a local daycare owner reached out today to offer to buy Zoey a new wagon to make outings like today much easier on her sore little body! She will not be able to put any pressure on her leg for at least 3 weeks before beginning physical therapy. I am still in awe of the total love and compassion from people we have never met. Every gift and every dollar from donations we have received means more than you know. All our family can do is stand back and cry tears of joy and warmth, thanking the Lord for seeing our Zoey and her family through this difficult time. There are some amazing people in our surrounding community, and you all are cherished for your acts of kindness.

Wednesday, June 5, 2013

Zoey's Hope on Facebook

You can now follow Zoey's journey on Facebook as well.

See you there!

Day 12

Still no update on the underlying autoimmune condition today, but tests did produce an unexpected result. Zoey has a heart defect, Atrial Septal Defect. What this means is Zoey was likely born with a hole in her heart and it never closed on it's own. Not at all something any of us were prepared to hear, but we're also thankful to be aware of it. Without all the testing for a possible autoimmune condition, this diagnosis probably would have continued to go unnoticed. In future months, she will likely have it treated by a cardiac catheterization procedure, but it's not a high priority at the moment. Her doctors agree that her body first needs time to recover from all her surgeries in the last week!

Doctors are hopeful that Zoey should be able to come home by the weekend, so long as nothing changes between now and then. They were hoping she would be able to regain some strength, which being able to eat solid food would help. But as of yet she has had little to no appetite. They are talking about sending her home with the feeding tube still in place, to make sure she continues to get the much needed nutrients to continue her healing and recovery.

Today is Bryan's birthday, so we brought the girls down to surprise daddy for a visit. When we arrived, Zoey was out for a quick stroll to the play room in her newest mode of transportation. What a breath of fresh air it was for Valorie, Bryan, and little miss Zoey to get out of her room for a short while! Looks like a cozy ride to me! :) I think I'm going to try and find her one for when she comes home to make moving about a lot easier and pain free!

Here is Zoey playing with a tiara and happily exclaiming, "I'm the princess!" Yes you are a little princess, sweet girl! Oh how my heart melted to see that beautiful smile coming back!

 Zoey got lots of lovins today. Sweet kisses from her Mammie:

And kisses and snuggles from sissy Hayley. Zoey said "Hayley come lay down with me" So precious!

Here's the birthday guy posing for a quick photo with Mama (Cindy). Happy birthday Bryan! We all love you!

Tuesday, June 4, 2013

More photos from day 11

Zoey waking up from surgery. Hello precious <3

 Her leg all bandaged up after surgery.

Sweet baby girl in her natural sleep pose, anesthesia still wearing off  :) 

Sleep well our precious little one. You are loved. Oh so loved. <3 

Road to Recovery Begins!

Huge praise report today! Zoey has done a huge turnaround!! She just came out of surgery #8, and for now the doctors were able to get the incisions closed up enough without having to do a skin graft!! Should she need any more surgeries, they won't be in the immediate future. Her precious little body is going to have a chance to recover now! Doctors are hopeful that Zoey should be able to come home this weekend! Zoey just needs to regain her strength enough to be able to eat on her own. For now they are confident that all the infection is gone and under control. Further testing, treatments, physical therapy and the rest of her recovery should be able to be done on an outpatient basis! Bryan and Valorie will need to keep a close eye on her for awhile, since we all know just how fast spreading of a bacteria this was. But, this is a total answer to prayer and we are all in awe of this amazing news!! There is still not an answer yet as to what the possible autoimmune condition could be, or if it was all a result of the trauma her body has gone through.

To every person who has faithfully been in prayer for our sweet girl, the family thanks you! To every person and family who has generously donated to Zoey's Medical Fund, THANK YOU! This will help lift a little bit of the burden off Bryan and Valorie's shoulders over the next weeks during Zoey's recovery. We are eternally grateful!

In the Media

Though exhausted after a roller coaster 10 days, Bryan and Valorie were brave to do interviews with the media to bring public awareness about Zoey's condition. Necrotizing Fasciitis, also known as flesh eating bacteria, is extremely rare but without early intervention can be deadly. To see their interviews, follow the links below.

For more information about flesh-eating bacteria, you can go to the CDC's website:

Monday, June 3, 2013

Eventful Day

Today was quite the eventful day. This was by far the best day Zoey has had since this all began.

The girls got to come down to visit with Zoey in her room! The quarantine has been lifted as of today!! The whole family got to spend some sweet moments at Zoey's bedside. Here is sister Peyton singing Zoey a song:

Hayley enjoyed a trip to get pizza with Daddy:

Q13 Fox news came to interview Bryan and Valorie about Zoey's condition. Tune in tonight at 10 o'clock to see the interview. 

Zoey had a lot of imaging done today, including an MRI and echocardiogram. The rash on her body has not subsided. Doctors are at this point still baffled as to what the cause is, and unsure what autoimmune disease she may or may not have. They continue to do more testing and cultures of her blood. Today Zoey also pulled out her feeding tube again, and this evening they had to put in another one. This time they put some mitts on her hands to keep her from pulling on the tube. We're praying that she gets lots of rest tonight in preparation for tomorrow's surgery, which will begin the reconstruction phase. Please cover our sweet girl  and her parents in prayer tomorrow during surgery. 

Sunday, June 2, 2013

Uncertainty and heavy hearts

Coming from a heavy heart and uncertainty...please don't stop the chain of prayer for our precious little Zoey, and for Bryan, Valorie, and the team of doctors. Zoey is undergoing some more testing today. The doctors found inflammation in the biopsy of her blood vessels, which leads them to believe she has a rare autoimmune disease of the blood. Specifics are unknown at this point, and we have no clue what this is going to mean for her treatment and for her future. She woke up today with swelling in her leg and a rash up her of now doctors feel the rash/swelling is not from the bacterial infection like before, but rather from the unknown possible autoimmune disease. Our hearts are breaking for what Zoey continues to go through. Please keep Bryan Valorie and all of the family in your prayers as well, there's so much uncertainty and fear in the unknown. 

This evening the doctors decided that Zoey truly needed the NG tube put back in. They sedated her to put in the tube in less traumatically for Zoey. We are praying that she can keep this one in, for her body is weak and needs the nutrients. 

Saturday, June 1, 2013

Princesses visit with Mommy

Last night Bryan came home to get some much needed rest, get some more clothes and items needed from home, and to spend some one on one time with Peyton and Hayley. Then in the morning we brought the big girls to the hospital for a surprise visit with Mommy!

Not wanting to go far from Zoey at the hospital, we went to a nearby shopping mall and played at the park. It was a refreshing time for Valorie to get out of the hospital, and spend some much needed time with the big girls. Mommy bought the girls a special animal at a toy shop, Peyton picked a cute little hootie owl and Hayley a kitten. The girls were dressed in their favorite princess dresses.... it was a princess parade through the mall!

Today was a mostly refreshing day. There was some concern from doctors about biopsy results, but we don't know anything yet. More information should come tomorrow.