Riley Turner

So.......

2012-01-04T10:27:00.002-05:00

I have been sitting here the past almost 3 hours now and re-reading Riley's blog.....Honestly, it has been ridiculously hard....I have been sitting here pretty much just crying in my office, however I have realized something...GOD IS FAITHFUL AND WE ARE BLESSED

As I go back and read all of the different entries and prayers, I realize that God has answered sooooo many of the prayers. Riley will be 4 next month when she was not suppose to live past 1, that she speaks with sign language and hasn't been in the hospital in a really long time. She is amazing and Gods faithfulness is breathtaking.

Also, I am so thankful for everyone that has been and continues to be a part of this journey with us. It is amazing to see how Gods people rally together in times of need to support and lift each other in prayer and also practical needs.

Thank all of you so much we love you,
The Turners

I

Running for Riley

2011-10-01T17:04:00.001-04:00

Only one week till Running for Riley 5k! Please click on the link to the right for all the details

Guest Blog for Celebraton Sisterhood

2011-09-30T06:10:00.002-04:00

I had the honor of writing a guest blog for the Sisterhood (women's ministry) Blog at our church a last week and I wrote something inspired by Riley so I thought I would share it here as well. Below is my post or you can view it at www.sisterhood.celebration.org.

My sweet daughter Riley is three years old and one of the most precious things in the world. She has long brown hair with ringlets at the end, dark green eyes, an adorable little nose and porcelain skin – she is BEAUTIFUL! Every day I ask her “Who is the prettiest girl here?” Or, “Who is the most beautiful girl in the world?” And without hesitation she always points to herself and smiles. The other day she was sitting in my lap while I was getting ready and I caught her staring at herself in my compact mirror, so of course I ask, “Are you the most beautiful girl in the world?!” But this time, instead of proudly agreeing with me she shook her head no and pointed to where a tiny vein is slightly visible through the porcelain skin on her forehead. This broke my heart!

And not only was I heartbroken by this, but I was mad. I felt like, “Where on earth did you ever get an idea like this? Show me who told you this lie and I will take care of them!” I immediately wrapped my arms around her, looked her in the eyes and told her that she was and always would be the most beautiful girl who ever lived. And that I loved her just the way she was because every imperfection, every part of her makes up the perfection that is Riley! As I sat there loving on my sweet little girl, I felt the Holy Spirit whisper to me, “I feel EXACTLY the same way about you.”

I don’t know about you, but most women I know (myself included), our first thought when we look in the mirror is not “I am fearfully and wonderfully made” and can I tell you, this breaks God’s heart. He loves us with a fierce passion that we cannot even begin to grasp and if we could only see ourselves as He sees us, we would be unstoppable. The enemy knows this. He knows that the little lies and bits of doubt and insecurity can completely cripple God’s daughters. But it is time that we as women look beyond the lies we have been told and truly see the value, beauty, and perfection of God’s handiwork in ourselves. God is calling the women of His church to a role too important for us to let our insecurities get in the way. When God looks at you, He does not see your imperfections, blemishes, or flaws, but He sees His Son. He sees the blood of Christ that covers your imperfections and makes you holy, blameless, and set apart. How different would your life be if you lived every day with the full realization of who you are in Christ and who God sees when He looks at you–His beautiful daughter?

And just so you know, Riley is back to knowing and loving her Most Beautiful Girl in the World title. :)

Running for Riley

2011-09-28T06:36:00.001-04:00

Only a week and 1/2 till the 5k Walk/Run for Riley! Please click the link to the right for all the details. We hope to see you there!

Blenderized Feeds!

2011-09-27T07:31:00.001-04:00

It took 3 years, a complex surgery, and getting a very special (& expensive) industrial blender but I just got to buy the 1st jar of baby food for Riley! :) Because Riley is doing so well after her stomach surgery this summer we are able to feed her directly into her stomach via a gastric tube. Before we had to deliver her nutrition through a long tube into her small intestine. We could only use a very basic and thin formula for fear of clogging the tube. But the gastric tube she has now is very short directly to her stomach and gives us the ability to give her blenderized feeds. These feeds allow us to give her super healthy, customized vitamins and foods that are focused nutrition for her specific needs. This is going to be so much better for her than the basic formula we have been forced to use. Plus I am just super excited about being able to cook for my sweet baby :)

4th Annual Riley Run

2011-09-09T10:47:00.002-04:00

The 4th Annual Riley Walk/Run 5k is coming up October 8th at 8:00am at the St. Johns Town Center. Please click on the link to the right to get all the details about the race and how to register or donate. Riley’s amazing extended family is sponsoring this Walk/Run fund raiser for Riley as part of “The Human Race”, a 5K Walk/Run and 1 Mile Fun Run promoted by HandsOn Jacksonville and the RITA Foundation, the umbrella organizations for the event. All pledge money raised for Riley flows through The RITA Foundation and is returned 100% to The Riley E. Turner Special Needs Trust Fund to help cover the cost of Riley's on going medical expenses. It is a really fun event and a huge blessing to our family. Hope to see you all there! :)

Thanks!

August 2011

2011-08-29T13:37:00.003-04:00

Riley has been doing really great this summer. Since her surgery at the end of June she has recovered nicely and is doing really well with her feeds going directly into her stomach. She has even gained a pound :). She has been working hard in all her therapies and is steadily making improvements in alot of areas. And after we finally had all of the colds and surgery behind us, we have been enjoying the last few weeks of summer and spending alot of time at the pool. Riley can't get water higher than her belly button because of her g-tube and trach but we have a little boat floaty that lets her legs kick around in the water and she loves the pool. We plan to start back with Vital Stem Therapy again this fall and we are also going to be working on a few other things with her doctors as well but for right now we are just letting her enjoy the last little bit of summer with lots of tea parties and play time.

Another big update ... our church just broke ground on the new Celebration Church Arena at Baymeadows & 9A yesterday! This new building will be able to reach so many more people for Christ and will be the hub of all that Celebration Church is doing in Jacksonville and around the world. We are so very excited about this building project for a whole number of reasons, one of those being that there is going to a children's space devoted specifically to kids with special needs! Our AMAZING senior pastors, Pastor Stovall and Kerri Weems have a huge heart for children with special needs. Their vision for this new building is that it would be a place where EVERYONE feels welcome and can experience Christ on their level. We are so excited about the new special needs space and all that it will mean for Riley and so many other precious kids in our area. Riley went to the ground breaking ceremony with us yesterday to help celebrate the new building and all that God is doing in and through Celebration Church.

Riley is coming home today

2011-07-04T17:10:00.001-04:00

Riley is doing great with all of her post op recovery. She is back to her usual playful self and is healing nicely after all of the procedures. She has been tolerating feeding directly into her stomach with no issues and we have been working up to a rate with her feeding pump that is almost twice what she was previously able to tolerate when feeds were going into her small intestine (Success! This was one of the main goals of her stomach operation). It is never easy to have to gonthrough stuff like this and spending some many days in the hospital is not top on my list of things to do but we could not be more thankful for the amazing staff at Wolfson's Children's Hospital PICU. They all treat Riley like a princess and take such good care of us while we are here. We are planning on going home sometime today and Riley could not be more excited. She has been telling me all morning about all of the stuff she is going to play with her big brother once we get home. We are so happy and relieved that her procedures and recovery all went so well. And we are so very thankful for all of the prayer, support, and Starbucks from everyone over the past several days. And one last thing that I want to share - which is by far the highlight of my week. After her feed this morning Riley told me that she was full! I gotta be honest, I cried. With all of her reflux and aspiration problems she has been eating into her small intestine for over to years and this is the first time she has ever been able tontell me that she actually feels full! I am so very thankful that everything has gone well and we have a full, happy tummy to prove it!

:) Becca

Riley's post op recovery is going great

2011-07-03T07:18:00.001-04:00

Riley is doing great! They took out the g/j tube yesterday and put in just a g-tube & she has tolerated feeds into her stomach all night!!!! :) they might let us go home as early as this afternoon

...sent from mobile device...

PICU day 3

2011-07-01T17:57:00.003-04:00

Riley is recovering really well. We are still in the PICU but she has been much more playful today talking with the nurses & staff here, acting much less home sick. She is still requiring a good amount of pain medication but has been letting us move her around a bit more today which should help with all the air build up on her tummy that is pretty painful. We hope to try food into her stomach over the weekend to see if the surgery was completely successful. We hope to get out of here around the 4th. Thanks for all your prayers & support.

Xoxo

Becca

...Sent from mobile device...

Update

2011-06-30T09:40:00.001-04:00

The surgery went well and Riley will be spending the next few days recovering in the Pediatric Intensive Care Unit at Wolfson's. We are having to give her alot of pain medication right now but she is a trooper and has been smiling and in a pretty good mood most of the time. Please keep her in your prayers for a quick & pain free recovery. Thanks!

Surgery Tomorrow

2011-06-28T20:18:00.002-04:00

Riley is having surgery tomorrow and will be in the Pediatric ICU for a few days after for recovery. She is having new ear tubes put it and they are doing a repeat muscle biopsy to hopefully help point us toward a diagnosis. But the main reason for this trip to the O.R. is for a Nissen Fundoplication - the doctors will take the upper curve of her stomach (the fundus) and wrap it around her esophagus and sew it into place so that the lower portion of her esophagus will pass through a small tunnel of stomach muscle. This surgery will strengthen her lower esophageal sphincter (the valve between the esophagus and stomach) which will keep food and stomach acid from backing up into the esophagus as easily. This will help us be able to feed her directly into her stomach instead of her small intestine which will have alot of benefits - it will prevent reflux that leads to aspiration and pneumonia, she will have the sensation of hunger/full, we can feed her at a faster rate that will allow for more play time and less time on her feeding pump, and hopefully this will take us one step closer to being able to eat by mouth some day. It is a Laparoscopic surgery (which means they will only make 3 or 4 very small incisions and then perform the entire surgery using a small camera and thin tools rather than it being a full open surgery . . . nuts right?!) We know that this surgery will be for the best for her but it is still so hard to see your baby have to go through this. Please be praying for a peaceful, pain-free, perfect surgery for Riley and strength & peace for me and Josh. We will keep you guys posted on how everything goes.

Much Love,
Becca and Josh

Marriage with a special needs child

2011-06-27T17:57:00.002-04:00

I had the amazing privilege of guest blogging for a friend and mentor of mine today about navigating married life with a special needs child. I have copied the blog post below but to check it out plus tons of amazing words of wisdom by an incredible woman of God, Pastor Kerri Weems, please visit www.KerriWeems.com.

Marriage: With a special needs child

June 27, 2011 ·

This is a Guest Blog by Becca Turner. She is married to our Student Ministries Pastor, Josh Turner, and has helped out in many ways at the church. One of her most recent contributions was leading the Decor Team for Shine 2011–and didn’t she do an incredible job? She has truly shown herself strong and faithful, and I know you’ll be blessed by this post! Please let me know what you think. Love you all, Kerri xx

—

First off, I just want to say that I am beyond honored to be able to guest blog for the fabulous Pastor Kerri Weems. Pastor Kerri is a huge source of inspiration in my life and I could not love her or the rest of the Weems family any more than I do.

Secondly, please let me say that I feel like I am by no means any sort of authority on marriage with a special needs child. Most days I have absolutely no idea what I am doing, but luckily I am married to an incredible man who is full of life and just as hopeless as I am–and together we serve a God who loves and knows us intimately and, as such, showers us with huge amounts of grace daily. Doing life with a special needs child is in no way easy, but when our daughter Riley was born, Josh and I decided that no matter what, our family would do whatever we could to give as much glory as possible to our Heavenly Father. And we try our best to live out that decision every day.

Finances, kids, stress, in-laws, personality differences, dirty socks left on the bathroom floor . . . There is a lot to deal with in any marriage and I don’t think having a special needs child creates any new issues to overcome–but it does amplify them. I have learned a lot about myself and our marriage over the past three years, but by far the most important thing I have discovered is that my life is impossible unless I am putting God first. I learned pretty early on that I am not enough. The stress on me, my marriage, and my kids is too much to bear without God’s grace, joy, and peace to strengthen and carry us.

The second thing I have learned is that you have to be real. You have to be honest with yourself. Be realistic about your own limitations and realize that you are going to fail. Get a good support system and get good at learning to lean on others. Be real with your husband. If one of us is struggling, we have to be open about it and rely heavily on each other for encouragement and support. And also be real with God. God does not want or deserve anything less than our humility and honesty when we approach Him in prayer. We cannot hide our anger, doubt, fears, and worries from Him, be honest, give those over to Him and let Him walk you through it.

And lastly, I have learned to be intentional. When you have a special needs child you are on duty 24 hours a day and there is always some pressing matter to deal with. I have to be very intentional with guarding my time for my other child, myself, and my husband. A lot of the time that means getting creative. Taking a coffee break and giving myself a quick manicure, camping out in the den with my son, or creating a romantic night at home for me and the husband. Another part of being intentional is being intentionally proactive. Statistically the odds are against you in marriage and even more so with special needs children. The divorce rate among special needs families is about 35% higher than the national average. So knowing that the odds are not in our favor, Josh and I meet with a marriage counselor. Not because we are struggling, but because we have a great relationship and we want to keep it that way. We do have our issues like every marriage does, but the key for us is being real, being intentional, and doing our best to live a God-first life.

3rd Annual Riley Turner Charity Golf Classic Friday June 3rd

2011-05-20T09:27:00.002-04:00

Please check out the link to the right about the upcoming Golf Tournament for Riley Friday June 3rd at 1:00pm. This is a great event and always alot of fun. It is also a HUGE blessing to our family in helping to raise money for Riley's medical and nursing care. We want to say a special thank you to Chick-fil-a at 13672 Beach Blvd. and Jeff & Christine Wier for supporting Riley and sponsoring a Chick-fil-a lunch for the event. Hope to see you all there!

Riley's Big Debut

2011-05-09T14:15:00.002-04:00

I am not sure if all of you saw this, but this is the promo video for the Celebration Special Needs Easter Egg Hunt. I think you will notice my boy and girl....Get the tissues ready

In the Midst

2011-05-09T13:44:00.004-04:00

Man, it has been a long times since I have posted on Riley's Blog, but I figured that Becca can not be the only one having the fun ;) This post will probably be more about my thoughts and struggles as I continue to walk this out, than about anything else.

As I write this Riley is sleeping right in front of me and I have to say that she is seriously the most beautiful child I have ever seen, don't tell Ayden. She has grown up to be a little girl full of personality and even though she can't talk still she has no problem letting you know just exactly what it is she thinks. She is a part of our family that I could never imagine being with out or to be honest with you imagine her being any other way.

I have learned more about myself and God through this season of my life than through anything else I have ever experienced. I never thought that a 3 year old special needs child would teach me so much about the love of our heavenly father and my own heart. However, God continues to use her to take me to places of continued wrestling, but it is beautiful....Let me explain:

A few weeks ago at church we were having a prayer night and there was a pastor that was leading a prayer for healing. In his prayers for healing he kept saying a phrase over and over which was, "God can heal and He will, He can and He will." Well I absolutely believe that God can heal and I know that it is His will for all to be healed, but other than that I don't understand healing. So, I found my self getting very frustrated in this moment and by frustrated I mean angry, but here is the amazing thing about God. In the midst of my frustration and anger a friend walked up to me where I was standing in this service and said, "God wants me to tell you something." Now I have been in ministry long enough to be very weary of what usually follows next, but this friend looked at me and said, "God wants you to know that He is going to heal your daughter, but it is going to be in His time and not yours." My friend then just grabbed me hugged me and cried with me. As he walked off Pastor James Price walked up to me and said, "God wants me to tell you something." Once again I was very weary ( I mean have you met James jk) Anyways James looked at me and said, "Do you remember the story of the paralytic on the mat?" Yes, I replied Then James looked at me and said, "When did God heal him?" and I said "in His time." Then James said, "God wants you to know that He is going to heal Riley, but it is going to be in His time and not yours." I lost it.........

I did not lose it at the thought of Riley being healed, but at the fact that in the midst of my anger/frustration God met me there. It just reminded me once again how much he loves me and that even in my anger He is there comforting me and holding me.

Through Riley I have learned more about Jesus than through anything else and for that I am thankful and blessed

Blessed and Highly Favored

2011-05-06T09:05:00.002-04:00

I was reading today in Luke about when Gabriel came to tell Mary that she would give birth to Jesus. Now, I am sure that when an angel of the Lord appears to you and tells you that you will give birth to the Son of God and Savior for all the only response you can really give is yes but I wonder if she looked back on her life and laughed at how little she knew of what she was getting herself into. While I am sure Jesus was the dream child for any mother - no time outs or temper tantrums - being His mother was with out a doubt an impossible burden for Mary. She had to raise, care for, and love a little boy that became the greatest man to walk this earth but all the while she had to watch as He was rejected, mocked, different, tortured, dismissed, beaten, spit on, laughed at, and ultimately killed. Now please let me be clear that I am in NO WAY comparing myself to Mary AT ALL, but as I read these verses I started thinking that she had the right attitude for sure in the beginning and I imagine she had to remind herself that alot as her role in life played out. Always repeating to herself "I am blessed and highly favored among women" and what a good mantra to have. While I can't fathom being Mary I do understand loving and caring for a sweet child that has a impossible burden to carry and I want to always maintain Mary's attitude about it. I do feel blessed and highly favored that God found our family worthy of such a burden with Riley & all she has to deal with and my prayer daily is that I would conduct myself as a woman who knows she is blessed and uses what God has given her to bring as much glory as possible back to Him.

Please keep Riley in your prayers - she is finally almost over her pneumonia and we are trying to make sure she stays as healthy as possible because she has a surgery coming up on May 18th. She is having her ear tubes replaced, another muscle biospy done for additional testing, and a stomach operation to help her be able to take food directly into her stomach via a g-tube rather than into her small intestine like she does now. It is a fairly complicated stomach surgery and she will have to stay in the intesive care unit for a few days afterward while she recovers. While surgery of any kind always makes us nervous & we hate that she has to deal with this, all of these procedures will really benefit Riley in the long run and we are trusting God with this just like everything else. Thanks for following our story and for loving and praying for our little Rileybugs.

Much Love,
Becca

Riley Update

2011-04-26T13:33:00.002-04:00

It has been WAY to long since the last time I posted an update and I am so very sorry about that. So here is the abbreviated version of what had been going on with little Riley since the last time I blogged . . .
Over the winter Riley did a very aggressive type of speech therapy called VitalStim. It is an treatment for Oropharyngeal Dysphagia that uses electrical stimulation with exercises in order to strengthen the muscles used to swallow. The therapy was hard but little Riley handled it like a champ. At first most of the sessions ended with both me and her in tears they were so tough but after a while with some creative encouraging and distraction techniques Riley got to where she would just breeze through the sessions. And we saw AMAZING results! Riley is actually swallowing much more frequently now! She is protecting her own airway more than before and we have also been able to work with her on swallowing a few liquids like chicken broth or flavored water. I am not gonna lie, I balled my eyes out the first time she swallowed something in her therapy session luckly her therapist is amazing and just praised God right along with me. We are currently taking a small break from the treatments just to give Riley a break from all the hard work and because they are simply too expensive for us to keep up year round but we hope to start back in the fall.

Another big update . . RILEY TURNED THREE THIS FEBRUARY! We were thrilled to celebrate this big milestone with her and rejoyce in the fact that doctors are not always right! Each birthday we celebrate with her serves a such sweet reminder that everyday with her is a miracle and one we never knew that we would have. This year for her birthday (through the generosity of some amazing people) we were able to take Riley in her new wheelchair to Disney World! Riley has become increasingly obsessed with Disney princesses and she had an absolutely ball! The look on her face when she met Belle (from Beauty and the Beast) still makes me tear up when I think about it. Ayden (the worlds best big brother) glady opted for the "little girlie" rides and was always the first to suggest we go visit Tinkerbell instead of Space Mountain. I have posted some of the pictures to her flicker.

One more major update is that we are currently working very hard with her Neurologist in Gainseville to get a definative diagnosis. We have made several visits down there resently and still have a few more procedures and test that we will be headed back down there for over the next few weeks. The testing is stressful and hard on Riley but we hope it will all pay off in the end with giving us the answers we have been after for years now and also helping us to better formulate a treatment plan. We are also hoping that if we are able to get a diagnosis that will help us be able to qualify for disability assistance. But it is a little bit of a catch 22 cause if we had a diagnosis then we could get assistance more easily to help with her medical expenses but in the process of trying to find a diagnosis, we are increasing her medical expenses exponentially.

Well I gotta run, Riley is waking up from her nap. Sorry this post is sporatic and all over the place but I just wanted to try to catch up on how our little Rye has been doing. I will post a better update soon.

Please keep Riley in your prayers she has pnuemonia right now and we have been managing it at home ok (no hospitals thank goodness) but we are ready for her to be healthy & to be back to playing and having fun.

Thanks!
Love,
Becca

THANK YOU!

2010-10-12T06:13:00.002-04:00

Thank you so very much to everyone who took part in the Riley 5k this past weekend! There was a great turn out and we raised a lot of money to go toward Riley's medical and nursing care expenses. It was so incredibly humbling for us to see so many people wake up early on a Saturday to come out in support of our family. We know we are super blessed to have many amazing people in our lives but to see the turn out of people, everyone wearing those pink "Running for Riley" stickers. . . well it was overwhelming to say the least. We were truly touched and we are so very thankful. We simply would not be able to give Riley the medical care she needs without the support of loving and giving people in our lives. The fact that she is still here, getting stronger and baffling her doctors, is because of God's faithfulness and the generosity of so many people who love her. It is such an odd and wonderful situation as her parents to know that we are kidding ourselves to think that Riley is just "our"daughter, she is being raised by a whole community of people. I only wish I could better express our gratitude that this little girl that we love more than anything in this world is so loved by all of you as well. Thank you!

Much Love,
The Turner Family

Running for Riley 5k Walk/Run OCT 9th

2010-10-03T06:43:00.002-04:00

Less than a week till the 5k! We are so excited and hope everyone can make it there. Please don't forget to try to get sponsors if you are running. The race registration fee does not go toward Riley, only any donations or sponsors for the runners. For more info and details on the race please click the link to the right.

Thanks!

Much Love,
The Turners

Being totally unrealistic and loving it!

2010-09-27T12:58:00.002-04:00

In Riley's weekly life of doctor appointments and therapy sessions we work with a lot of "goals". We focus our sessions and daily exercises around working toward these lists of achievements & hopes we have set for her physical strength and health. This is one area where I drive Riley's specialists nuts because I am always pushing for beyond what they call "realistic". When Riley was 5 months old I had a meeting with 4 therapists/specialists to lay out some goals and a plan of action for the next few years of Riley's physical therapy. When discussing realistic long term goals I said "to sit up unassited for 5 minutes" and I was sweetly told that sitting up on her own by the age of 3 could be somewhat of an unrealistic goal. Well, today during her physical therapy session Riley sat up on her own and played catch with me today for a full 10 minutes! This is just one more example to add to the ever growing list of things in Riley's life that prove nothing is "unrealistic" for our God.

3rd Annual Riley Run!

2010-09-17T04:50:00.003-04:00

It is that time again! :) We are blessed once again this year to be able to be a part of Hands on Jacksonville's Human Race 5k & 1 mile fun run. SATURDAY OCTOBER 9TH AT THE ST. JOHNS TOWN CENTER AT 8AM! It is a really fun race that wraps through the Town Center. Please click the link to the right for more information about the race and to download entry form, flyers, and info sheets.

Riley's expenses (after insurance benefits have been exhausted) are about $70,000.00 per year for her nighttime nursing care, medications, and medical equipment. This 5k is a HUGE way for us to help raise funds in order to ensure that we are able to give Riley the care that she needs. If you cannot participate in the race you donate directly to Riley's special needs trust fund by clicking the Online Giving Donate button to the right. It is hard to put into words how truely thankful we are for your support and donations. Just the fact that Riley is still here is in a big way due to the support we have recieved, without which we simply could not afford the eguipment and care she needs. So Thank you! Thank you for praying for and helping to support our precious Riley. It means to world to our family!

Hope to see you all at the Riley Run! :)

The Turner Family

Update on Riley

2010-09-13T13:58:00.003-04:00

Riley had a myringotomy (ear tubes surgery) this morning and she did really well. Her doctor also did a quick bronchoscopy (using a tiny camera to inspect of the interior of the tracheo-bronchial tree) while she was under anesthesia in the O.R. He said that everything looks good and after a few hours of post-op recovery Riley is at home and resting well now. :)

Riley has been doing FANTASTIC lately! We are so pleased with her progress and growth. She has been doing really well with all her therapies and she has been healthy & out of the hospital since when she had pnuemonia in January. That is a new record for us! :)

Thanks for the continued prayers and support. More updates and new pictures coming soon! ;)

Love,
Becca

Riley's 1st time IN the pool!

2010-06-02T06:48:00.004-04:00

Because Riley can't get water near her trach or her feeding tube sites getting around water has always been difficult, but she loves it. She normally has to sit in her chair on the side of the pool just dipping her toes in while we watch her big brother swim but we found a float that lets her join in on the action now. Her trunk strength has improved enough to allow her to sit in her float with her bottom and legs in the water as she actually gets in the pool with us! :) Playing in her float requires a ton of work on her part for her balance, core control and lower body movements so not only is it tons of fun but it is a huge therapeutic workout for her.

We had a blast playing in the pool for hours on Memorial Day (and she slept like a rock that night).

Riley Hair Clips and Accessories

2010-05-24T07:14:00.002-04:00

I have been making my own hair clips and hair accessories for Riley for a while but now I have set up an online Etsy.com store to sell some of them. All of the money from each sale will go toward Riley's medical and nursing care costs. Please click the link to the right that says RILEY HAIR CLIPS AND ACCESSORIES to check them out and may buy a few for a little bug in your life :).

Bath time! :)

2010-05-23T18:48:00.004-04:00

Thanks to Riley's new bath chair the kiddos were able to take a bath together for the first time tonight! They were so funny splashing around and giggling.

Riley Update

2010-05-22T13:58:00.002-04:00

Yesterday was a really exciting day for us. During Riley's weekly speech therapy session yesterday morning we meet with a specialist about the possibility of getting a speech assistance device for Riley. Basically it is a programmable touch screen computer that will speak for Riley. We can completely customize it to everyday words and phrases she would want to say and then by touching a button Riley can use the device to speak for her to better communicate her wants and needs. Riley communicates fairly well now just through signs and gestures but this device will completely change and simplify communication for her. We are able to download digital photos of our home, her room, etc. and then she can interact with the different elements of those scenes (if she touches her bed in the picture of her room the device will say "bed"). The technology is absolutely amazing! We are starting the process of getting one of these devices for her now and we are just hoping for favor with the insurance company because these are not cheap and we will not be able to afford it on our own. We are optimistic and excited about what this device could mean for Riley's day to day life but we are still confidently praying that we will one day hear HER voice as God continues to strengthen and heal her vocal cords.

Other big news from yesterday . . . Riley's stander and bath chair were finally approved and delivered. This has been a 7 month process with insurance, lots of paperwork, and tons of help but we finally got coverage for this equipment from Early Steps (a state program for therapeutic needs for medically needy kids under the age of 3). The bath chair will help make bath time so much easier and safer by allowing us to position her in the bathtub in a way that will let her take a real bath without the concern of water getting in or around her trach or g/j tube stomas. And the stander is a piece of equipment that allows her to stand upright by supporting her weight and maintaining her posture. We have alot of work to do as far as her therapy goals involving the stander but still this is a very big step in helping her to develop muscles and healthy bone growth in her legs so that she can hopefully one day stand and even walk on her own.

And then to cap off our amazing day yesterday we attended the Youth Quake Live: The Musical benefit for Riley and another just incredible kid Joshua Frase. The benefit was so well done and we were completely honored and humbled by the loving and selfless generosity of Sean Yost, Alexandra Smith, all the cast, and everyone else involved in YQL. Josh and I both were so moved by the effort, support, and dedication that were poured into this event for the Frase's and our family. We can not say thank you enough to the amazing, amazing people at Youth Quake Live. Our whole family was able to attend and Riley & Ayden both loved the musical and danced along to all the songs.

Talking about crowns in my sleep

2010-05-15T06:31:00.005-04:00

Ok, so this might sound kinda crazy but I had the most amazing dream last night where I was sitting and talking with God about Riley & her future. I only remember bits and pieces of it now that I am awake but what I do remember is that it was a casual, relaxed conversation like talking with a friend and I was asking Him a bunch of questions (and I know this sounds silly) but the only question I can remember asking now was "Well, what about her being prom queen?" and He said "Those crowns are plastic, have you seen mine?" I so wish I could remember more of the dream! When I woke up this seemed like such an insignificant detail of such a powerful dream I was sad it was the only part I held on to but then I opened my Bible this morning to Isaiah 35 and this is what it says . . .

Isaiah 35

Joy of the Redeemed

¹ The desert and the parched land will be glad;
the wilderness will rejoice and blossom.
Like the crocus, ² it will burst into bloom;
it will rejoice greatly and shout for joy.
The glory of Lebanon will be given to it,
the splendor of Carmel and Sharon;
they will see the glory of the LORD,
the splendor of our God.

³ Strengthen the feeble hands,
steady the knees that give way;

⁴ say to those with fearful hearts,
"Be strong, do not fear;
your God will come,
he will come with vengeance;
with divine retribution
he will come to save you."

⁵ Then will the eyes of the blind be opened
and the ears of the deaf unstopped.

⁶ Then will the lame leap like a deer,
and the mute tongue shout for joy.
Water will gush forth in the wilderness
and streams in the desert.

⁷ The burning sand will become a pool,
the thirsty ground bubbling springs.
In the haunts where jackals once lay,
grass and reeds and papyrus will grow.

⁸ And a highway will be there;
it will be called the Way of Holiness.
The unclean will not journey on it;
it will be for those who walk in that Way;
wicked fools will not go about on it.

⁹ No lion will be there,
nor will any ferocious beast get up on it;
they will not be found there.
But only the redeemed will walk there,

¹⁰ and the ransomed of the LORD will return.
They will enter Zion with singing;
everlasting joy will crown their heads.
Gladness and joy will overtake them,
and sorrow and sighing will flee away.

. . . WOW!

Day at the Pool!

2010-04-28T21:33:00.003-04:00

Took Riley to the pool for the first time today with her big brother, Ayden. I was scared that she would not like it but she had a blast splashing her feet in the shallow end.

Finding faith in strappy tank tops . . .

2010-04-27T06:40:00.003-04:00

When Riley was first born and in the NICU for weeks & weeks at a time, there were more than a few really hard days. Some times our faith and resolve was up to the challenge of whatever those bad days had in store and then there were other days where it was difficult to even put one foot in front of the other. But on those days when faith and hope were not a reflex, we would make the active decision to chose them anyways. One of my ways of choosing to act in hope (that I did not feel) was to get a little something for Riley that was for when she was older than her prognosis. When Riley was 4 weeks old and her doctors said she might live another year at the most, I bought her an adorable 3T tank top. :) Well Riley wore that top yesterday! As I was getting her dressed I couldn't help getting emotional because at the time I bought that for her I honestly wasn't sure if she would live to wear it. But that is the thing about faith - we are not always going to feel the kind of faith that moves mountains but God knows this and does not expect this of us. The faith that honors Him the most is the faith we know, not the faith we feel. It is simply being sure of what we HOPE for and certain of a God we can't always feel or see. We serve a BIG God and He has proved more than faithful to us as Riley has far exceeded what was expected of her life in so many areas. Yesterday just served as a wonderful reminder of what He has carried us through so far and as a great encouragement for the future. We know that there are still plenty of difficult days in store for us with Riley but I am certain that God will give us what we need to handle them as they come.

A Show for Riley

2010-03-04T19:29:00.002-05:00

Our family has been blessed with unbelievable friends and nothing has revealed that more than the life of our daughter. We have had people run 5ks, play in golf tournaments, sing songs, write checks and now for the first time perform musicals.....Thats right I said it perform musicals....Youth Quake Live is an amazing organization that gathers student ministries from all around Jacksonville once a month to reach out to the lost and bring ministries together. Last year they wrote and performed their very own musical and it went amazing and now have the opportunity to perform it at the UNF Theatre. The incredible thing about this is that my friend who runs YQL Sean Yost asked if it would be okay to use this as a benefit show for Riley and another amazing child Josh Frase. Please, come out and help support our daughter and Josh Frase and also all of the students that will be performing.

http://www.youthquakelive.tv/musical/about

Happy 2nd Birthday Riley!!!!!!!!!!!!!!

2010-02-22T06:53:00.006-05:00

Yesterday was Riley's 2nd Birthday and we had a blast celebrating with our family. To be honest, it was a pretty emotional day because 2 years old is something we were told she would never live to see. Riley has grown stronger & older and blown away so many of the "never"s we originally heard from her doctors. Each time she reaches these milestones it is a wonderful reminder of God's faithfulness and power at work in her life. In the constant hectic pace of doctor appointments, therapy sessions, and just our lives in general so many times we take for granted of all the little improvements and the fact that everyday with Riley is a new miracle in itself. But the day to day progress and growth is amazing and looking back on the past two years as a whole - from where she started until now - it is absolutely clear that we serve a loving, compassionate, and powerful God who has done countless miraculous things in her life and in the lives of so many people she has touched. Life with Riley is definitely an adventure and we cannot wait to see what the next two years brings.

Thank you to all of our amazing friends and family that have supported, prayed, cried, worried, rejoiced, celebrated, and walked through the past two years with us from this

to this

Riley is doing much better! :)

2010-02-02T06:29:00.005-05:00

Thanks so much for all the prayers, texts, and phone calls last week. Riley is doing much better! She is still on antibiotics (that mess with her tummy at little bit) but other than that she hasn't had a fever or anything since last Friday. She is back to her happy, playful self. :)

Here is a picture Josh snapped of her yesterday during some father/daughter time . . . Her doctors said that she would never be able to sit up . . .

"so that your faith might not rest on men's wisdom, but on God's power." - 1 Corinthians 2:5

Poor little Rye is sick . . . again! :(

2010-01-28T16:19:00.006-05:00

Riley got home from the hospital about two weeks ago and since then has been doing great! . . . until 2 nights ago. The poor little bug is sick again! She has a fever and a elevated heart rate, also her white blood cell count is up so we know her body is fighting something off but we are not sure what. She is on antibiotics and at home (& we hope to keep it that way). Respiratory wise she is doing fine but you can tell that she doesn't feel well, her energy is way down and she is napping alot. We are just hoping this is a short lived virus and she will be healthy again soon. Please keep little Rye in your prayers, so far this flu season has been pretty tough on us. Thanks and God Bless.

xo

The Turners

Riley is home from the hospital :)

2010-01-16T21:34:00.002-05:00

We took Riley to the emergency room on Jan. 3rd at about 5:00am with a high fever and a heart rate that rivaled that of a humming bird. She was admitted to the Pediatric Intensive Care Unit that morning and stay until yesterday afternoon (almost a full 2 weeks). Riley had a nasty case of pneumonia and a staph infection. Just one of those alone is enough to knock out a full grown adult for a while but the two of those together for little Rye was just plain scary. This was by far the sickest that she has been and we are so very happy that she has recovered and is back home. We are so thankful for all of the prayers, phone calls, and texts. We have amazing friends. Also we could not love that staff at Wolfson PICU any more. You guys are amazing!!!!! We are all still recovering from all those long days and short night sleeps but promise to do more updates soon.

Much Love,
The Turner Family

Great News!

2009-11-23T19:13:00.005-05:00

Riley had 4 different doctor appointments today and they all gave us great news! We saw her general surgeon first to talk about the swelling in her left arm and she said that it is not nearly as serious an issue as we thought and that we can treat it simply with massage and special pressure garments (instead of an aspirin regiment or a procedure) and that as Riley grows the scaring from all the IV's and such will become less and less an issue. Then we saw her gastroendonologist who we had been going back and forth with about if Riley needs a surgical procedure to help with her reflux issues but he said that he is so pleased with her growth and health right now that he is happy to put off the surgery and we might not need it at all if she continues to do so well. Next we met with Riley's nutritionist and found out that Riley has improved greatly with her weight gain and is now nicely within a healthy range and we are able to put her on a more complex (lower cost!) formula. But the best news of the day was from her pulmonologist. He was very pleased with her growth and respiratory health and said that Riley is now strong enough for us to try out a valve for her trach that will allow her to speak! Since Riley was immediately intubated at birth and then her trach was put in when she was only 1 month old, we have actually never heard her make a sound before so we are ecstatic at the thought that we might soon be able to hear her cry, babble, and eventually talk! We are amazed at God's faithfulness and the fact that Riley continues to reach milestones we once thought of as unreachable.

Riley update

2009-11-12T14:45:00.003-05:00

Riley has been having trouble with her left arm lately. It has been swollen off and on for about three weeks now and her doctors still aren't sure why. We have run a few test but can't find the cause. Right now the best guess is that due to all of the central lines and IVs that have been put in that arm in the past that she might have some scaring that is causing circulation issues and therefore that arm is not draining well. We are taking her in to see her general surgeon soon to run some more test and hopefully get some answers. Please join us in praying that this be resolved soon and easily.
But other than the issues with her arm, Riley has been doing really well. Her lungs are nice and healthy and she continues to show improvement in many areas during her therapy sessions (all but those involving her left arm - the swelling has been causing her difficultly lately). One thing her doctors did say is that most of the time these type of things just go away on their own so we hope that will be the case and we will have good news to post soon.

Thanks for your prayers and love!

Much love,
The Turners

FAILED Christmas card photo shoot

2009-11-06T20:29:00.004-05:00

Thank you Aunt Whitney & Uncle Nic

2009-10-26T08:42:00.006-04:00

We are so unbelievably blessed to be surrounded by amazing friends and family. We want to say a BIG thank you to Riley's wonderful aunt Whitney & her new uncle, Nic, for their recent donation. In lieu of favors at their wedding, Whitney and Nic made a donation to Riley's special needs trust fund. Whitney and Nic we love you and we are so thankful for both of you. Your thoughtfulness and generosity on your big day blew us away. Riley is so lucky to have an aunt and uncle like you guys. THANK YOU!

Much Love,
Becca and Josh

Here is a picture of the new Mr. and Mrs. Moerings :)

Thank you!

2009-10-22T06:36:00.003-04:00

The Riley run went great! We had a good turn out and we were able to raise enough money to cover several months of Riley's expenses! Thank you so much to everyone who was a part of the race - you have no idea what a blessing this is to our family! We want to say a HUGE thank you to The Rita Foundation, y'all are absolutely amazing. And also my beautiful sister, Whitney Moerings, and the rest of our family thank you so much for all the work you put in again this year. With a child like Riley that requires around the clock constant care we always have our hands full - I can't tell you what a relief it is to be able to provide her with the medical care she needs and focus more of our attention on that rather than the financial stress of how and if we can afford her care. It truly is because of all of the amazing people who love, pray for, and support Riley that she continues to surpass doctors expectations in every way.

THANK YOU!

Much Love,
The Turner Family

Riley Run

2009-10-06T06:21:00.002-04:00

Just a reminder - the 5k Walk/Run for Riley is this Saturday (October 10th) at 8:00am at the St. Johns Town Center. If you haven't signed up to participate yet you can still do so by clicking the link to the right. The 5k is alot of fun and is a HUGE help to our family. Money raised through runners' sponsorships and donations will help us cover the costs of night time nursing care for Riley (the out of pocket expense for nursing care alone is almost $5,000.00 per month). So the saying "it takes a village..." couldn't be more true for us. We are incredibly humbled and beyond thankful for the community of friends and family we have surrounding us and helping out through events like the Riley Run. We hope that you can make it to the event but if walk/runs are your thing you can still donate to help little Riley by click on the "Online Giving Donate" button on the right (every little bit makes a big difference!). Thanks so much for your support and we hope to see you at the 5k this weekend.

Much love,
The Turner's

Riley is home from the hospital :)

2009-10-02T09:29:00.004-04:00

I am so sorry for the LATE update, I am the worst blogger ever! Riley came home from the hospital Monday evening and she is doing much better. This week has just been so busy and Josh & I are also sick so I haven't had a chance to blog about it yet. Riley is still needing a good bit of oxygen but she hasn't had a temperature for a few days and her heart rate is back to normal. Also her lungs sound much better and we are not needing to do as many breathing treatments for her as we did over this past weekend. We are still not positive what is making her sick (best guess is a viral something or other) but she is on the mend - which we are soooo happy about. Thanks to everyone for all of the text, prayers, phone calls, and meals (Carrie Wyatt your cheesy chicken is amazingly yummy!) We are so blessed to have such amazing friends and family to take care of us! Also we would not have gotten out of the hospital as quickly as we did without the incredible care of the PICU staff at Wolfson's, especially our favorite respiratory therapist Ms. Lydia - you are amazing!

Much Love

The Turners

Riley update

2009-09-27T16:26:00.003-04:00

We took Riley into the emergency room on Friday because she had a high fever, respiratory issues, and her heart was working too hard because of the high temp. She is doing much better but still in the Pediatric Intensive Care Unit. All of the test so far are coming back negative so the doctors aren't sure what is making her so sick, but at least we know it is not the flu. Most likely Riley has a viral infection but with out knowing for sure the best they can do is to just try to alleviate the symptoms and let the infection run its course. We hope to be able to bring her home tomorrow but she is still needing alot of oxygen and breathing support from her ventilator so we aren't sure if she will be ready to come home just yet. She was playful today for the first time in a few days so I think she is starting to feel a little better and hopefully the worst is behind us. We hope to have good news soon that she is coming home but until then please keep little Riles in your prayers. Thanks!

Much Love,
The Turner Fam

5K Walk/Run for Riley

2009-09-15T00:52:00.004-04:00

The 2nd Annual 5k walk/run for Riley is coming up on October 10th. Last year we had a great turnout and it was alot of fun. The funds raised at last year's run have been how we sleep at night . . . literally! Riley requires 24/7 monitoring and care so we pay for nurses to sit with her from 10pm till 6am each night so that we can sleep. Since our insurance benefits are limited and do not cover various aspects of Riley's medical needs, our out of pocket nursing expenses as well as the costs of medications, medical equipment, specialist fees, hospital bills, etc averages to over $70,000.00 per year. And even though Riley continues to make big improvements her need for nursing care and all of these other expenses has not changed. We have applied for several different programs and grants but have had very little success. So it is with great humility that we ask you all to consider taking part in the upcoming 5k. Even the smallest donations make a huge difference in our ability to make sure that Riley has the care she needs. To find out details about the race and how to sign up or donate please click on the link to the right. Thank you so much for your prayers and support!

THANK YOU!

2009-08-30T06:43:00.004-04:00

We want to say a HUGE thank you to everyone who participated in the 2nd Annual Riley Turner Golf Tournament. We had a great turn out, nice weather, and alot of fun - overall the event was a big success! Thanks to everyone who came out to support our family and all of the amazing volunteers who helped make this possible, we love you guys.

Little Michael

2009-08-27T20:26:00.007-04:00

We have been working with Riley on raising and extending her arms, especially her left arm that is weaker than her right. Well, her physical therapist brought over a little basket ball goal toy for her therapy session today and Riley not only did really well but she absolutely loved it.

I love this picture because she looks like Micheal Jordan - sticking her tongue out as she dunks it. :)

2nd Annual Riley Turner Golf Tournament

2009-08-23T06:04:00.004-04:00

This Saturday (August 29th), our incredible friends and family have put together the 2nd Annual Riley Turner Golf Tournament. For details about the tournament or to sign up to play please click on the link to the right. Last year everyone at the tournament had alot of fun and it helped to raise the funds needed to medically sustain Riley. Due to the astronomical cost of Riley's medications, medical supplies and machines, nightly nursing care, hospital and specialist fees, etc. there is no way we could make it with out the support - spiritual, emotional, or financial - of all our friends and family. Our insurance only covers so much and it has been the fund raisers and donations that have made caring for Riley possible as we work our way through the mountains of paper work and appeals in order to get any state medical assistance. God has been so amazing and has done much in our lives since Riley was born but I think one of the biggest lessons He has taught me is humility in receiving. It is not at all that I am too proud to receive help but in truth I would much rather be the one giving it than receiving it. God has taught me repeatedly the importance of accepting, asking for, and leaning on the assistance of others. So while we are asking for your continued support through events like the golf tournament, please know that we do not ask lightly. We are beyond grateful and truly humbled by the time, energy, support, and donations given by so many. So thank you, thank you, thank you to everyone who has so loving helped our family and we hope to see everyone next Saturday at the golf tournament.

Much Love,

The Turner Family

PS - We would just like to say a special thank you to the AMAZING John Hess, Shellie McCarry, Tiffany & Jason Vail, my ridiculously talented brother Matt New, and my loving father Ed New for all of the hard work you guys have put into this tournament. We love you!

Riley Update

2009-08-12T07:37:00.004-04:00

Riley has been doing great lately. She had surgery last Monday to have her tonsils and adenoids removed - the surgery went great and she is recovering really well. Her tonsils were abnormally large and we are hoping that with them out of the way she will be able to swallow a little better. She is getting so big and looking more and more like her big brother every day. Her newest trick is blowing kisses and it is sooo cute. We have been working on sign language with her and she is getting much better at communicating and interacting with other people. She has been making alot of progress in her physical and occupational therapy and is able to sit up with minimal assistance now. Here is a pict of her reading a book the other day with her big brother :)

Beach Day

2009-07-12T06:57:00.005-04:00

We took the kids to the beach yesterday and Riley loved it! Our car was loaded down with medical supplies and we couldn't stay long but we had a great time. It wasn't too hot and there was a nice breeze so Riley was able to sit out there with us for about an hour and a half. She would wiggle any time the wind blew and waved at everyone who walked by. I took this pict of her playing with a magazine while wearing her sunglasses . . . she is a natural at the beach :)

RILEY ROLLED OVER TODAY!

2009-06-16T16:44:00.000-04:00

Getting excited about being "normal"

2009-06-13T02:57:00.005-04:00

Lately I have been thinking alot about keeping up endurance when the adrenaline has run out - maintaining supernatural faith in day to day natural, "normal" life. Because for me faith comes more easily when I am holding my daughter's hand as she is covered in tubes and wires in the hospital, when a doctor takes a long pause and lets out a deep sigh before giving me some news about her condition - for some reason that is when my faith comes as natural as breathing. Equally as easy times for my faith are when Riley's physical therapist gets chills because of something absolutely amazing that Riley has accomplished or when we celebrate her birthday or other milestone we were told we would never get to. I don't know why my faith comes easy when it is the only thing to hold me up when my world is falling apart or when I am in some sort of emotional state that is beyond joy and thankfulness because of some major break through for Riley. Those are the times my faith feels as big as a school bus but it is the normal every day times when I feel like I struggle to keep my faith even mustard seed sized. It is not that my faith is not there, it is just that is doesn't come as easily. I guess I could compare it to when I used to run long distance races for track in high school. Of the 3 miles in each race it is the 2nd mile that is the hardest. The first mile you have your adrenaline to push you and in the third mile you have the promise of the finish line in sight but the second mile that is when you are at just some random place in the course and you have to work to keep a good pace to not wear yourself out but at the same time to not fall behind. That is where I feel like I am now. Oddly enough it is not the mountains or the valleys that are hard but the flat even ground in between. Working to remember that even on a day when I get excited just to match up all the socks as I fold the laundry - even on a day that mundane - God is still there wanting to knock my socks off. So I guess this all of this is to say that I am taking time to revel and rejoice in the mundane - enjoying the fact that Riley is not in the hospital and looking forward to the next miracle - just excited to be on flat ground. I am thankful that I can find a day filled with respiratory treatments, ventilators, feeding pumps, and countless other medical necessities "normal". I am thankful that tracheotomy tube changes have blended in right behind washing the dishes on my list of things to do for the day. I am making the effort to not put my faith that can move mountains on the back burner just because I am scrubbing last nights chili off one of the front burners. And amazingly enough I am finding that God can use the mundane to do some pretty profound things in my faith. For instance, just the fact that I can find a day like today somewhat normal as I sit up with my daughter at 3:00 in the morning (we don't have a nurse tonight) and for some odd reason I am writing part of my personal prayer journal in a blog on the internet for other people to see - it is almost comical that because of the highs and lows of the past year this abnormal behavior is now normal to me. . . I wonder what we will find normal next year? So even though I have no idea how normal (or crazy) tomorrow is going to be I know that God is going to do amazing things and we are so thankful to living this incredibly abnormal/normal life with all of you. Thanks for all the prayers, hugs, text messages, support, etc. We love you!

2009-05-23T20:11:00.003-04:00

Update

2009-05-23T08:18:00.003-04:00

Riley is doing really well and we are so pleased with the progress that she has been making lately. At the beginning of May she went into the hospital for a few days to have ear tubes put in and for us to get in home ventilator training (she is on a ventilator now at nighttime). The surgery went really well and we can tell a huge difference in her hearing now because of the tubes. Also her lungs are much healthier now because of the extra support she is getting at night from the ventilator. While she was in the O.R. for her surgery, her ENT also did a scope to see how her trachea was looking and discovered that her tonsils are about the size of Texas so we will more than likely have them removed in the next few months. He also found that there is alot of irritation and damage from aspiration and/or reflux along her trachia. We are discussing our options for how to best treat the problems that his scope found and we would really appreciate your prayers for healing for Riley's trachea and improved strength in her swallow reflex to help prevent any further damage. While we weren't happy about what the bronchoscopy found at least we know now so we can make every effort to help her get better. But all in all if was a really I guess you could say 'successful' hospital stay. And just a side note . . . The staff at Wolfson's PICU is absolutely amazing! We love you guys so much and we are so thankful for all that you do!!!!!!! Especially all of the Respiratory Therapists, y'all are awesome. :)

Riley is also making alot of progress with her physical therapy. She touched her toes for the first time about two weeks ago! I know that this seems like a fairly small, normal kind of thing but for Riley it means that she has the arm strength to lift up, reach out, and extended her arm, the leg strength to move, lift up, and bend her leg, and the core strength to bring her arm and leg together so she can play with her toes. . . . . THAT IS HUGE FOR HER!!!!!!!!!!! We never cease to be amazed at the little miracles that keep stacking up in her life. Nothing makes me happier than to see her physical therapist freak out from week to week as Riley continues to improve. Riley is moving alot more just in general - waving and giving high-fives, reaching for toys, and she laughed the other day it was silent of course but still an adorable and a very infectious laugh. :)

Thanks for all your continued love and support. We are so blessed to have amazing people like you along side us during all of this.

Much Love,
The Turners

First Post

2009-04-12T22:43:00.002-04:00

My Little Girl

Well it's Thursday morning and Riley continues to get better everyday. Last night they did an MRI hoping that they would find something, but once again it can back healthy. We are believing that the doctors will not be able to find anything wrong with her and that God will be the one that heals her bringing all the glory and honor to him and not to man.

The above paragraph was the first couple of sentences ever written on this blog about our beautiful daughter. The amazing thing is they still have not found anything wrong with her and she is over a year old and I still believe that God is going to be the one that heals her and receives the glory. I wish I could say that my faith doesn't struggle at times and that it is always easy, but the fact is it isn't there are good days and bad days. However, it brought tears to my eyes as I read this first post and realized that God is still working in all of this.

Josh

A much needed update

2009-03-30T05:24:00.006-04:00

Hey Guys. Sorry we haven't posted anything in a while, life gets kinda crazy at times but here is a much need update on Riley. She has been doing really well. With the cold and flu season it was difficult keeping her healthy so we are glad that the warm weather is back. She has a little cold right now but is doing pretty well and will hopefully be over it soon. We have had some issues with ear infections lately so her ENT is going to put tubes in her ears sometime this month. We don't have the date for the surgery just yet but she will also have her g/j-tube replaced when she goes into the O.R. for the ear tubes. Also, Riley's pulmonologist wants to start her on night time ventilation. At first we thought this might be somewhat of a step backwards, but her doctors think this will be really good for her to help keep her lungs open and healthier while allowing Riley have more energy during the day by helping her breath a little easier at night. When she is in the hospital for her surgery we are also going to have training and get set up for her to be on the nighttime ventilation. So even though we are not excited about having to spend a few days in the hospital, it will be good for Riley to get a little "tune up" so to speak.

She is getting so big and is a lot of fun. She is unable to talk or make any noise because of her trach but she has learned how to make little squeaking noises with her tongue and she is so funny. She will tilt her head and chirp at you for hours like she is having a whole conversation with you. She is continuing to make progress with her physical therapy little by little and we have started speech therapy this month to help with her oral motor skills. She has come so far since a year ago and we look forward to the improvements we will see from these new changes over the next few months.

Happy Birthday Baby Girl

2009-02-21T09:55:00.002-05:00

An early birthday present!

2009-02-19T17:11:00.006-05:00

We took Riley to the University of Florida Pediatric Neurology Clinic yesterday to seek a second opinion & some more answers. . . We could not have had a better visit! We were at some what of a dead end with our previous neurologist and we have been praying for quite some time now to find someone who stays well informed on the latest research and who is up for the challenge of diagnosing for our apparently impossible to diagnose daughter. We meet with Dr. Carney yesterday and we were very impressed with his knowledge of the latest research and treatment options for kids like Riley. We discussed literally every test, plan, question, etc. I had hoped to discuss - and he had answers! As we discussed Riley's previous diagnosis and prognosis, Dr. Carney was very clear that it is almost impossible for them to put a time line on how long they think a child like Riley will be able to survive (there are just way to many factors that come into play with her condition) but he told us "optimistically yet very realistically" she could in fact live a full life, attend college, etc. more than likely from the confines of a wheel chair but still alive! I was fighting back the tears at that point - for a doctor to be talking about Riley going to college when previously all we had heard is that we would be lucky to enjoy a year or two with her, I was just over whelmed! He asked us to come back soon for some more testing but as we were going to check out his assistant stopped us and said there was an immediate opening to have one of the test done right then. Now I don't know how much experience you have with medical specialty clinics but they have some of the most overbooked schedules imaginable so that fact that they we able to fit us in right then was beyond serendipitous. They performed an nerve conduction study and an EMG (tests to determine if the issue is with her nerves vs. her muscles, or both). So we started to drive home glad for the great visit and looking forward to getting the test results but we only made it to about a block away and then got a phone call to come back that Dr. Carney wanted to see us again immediately and go over the test results in person (again, completely unheard of in medical specialist land!) The tests found that her issues are mostly muscular - which is HUGE! Muscular diseases are much more manageable and treatable than anything that effects the spinal cord or nervous system. It is SO great to be able to hear her doctor confidently say that her condition is not something along the lines of a Spinal Muscular Atrophy but instead it is more than likely in the family of Congenital Myopothies (a category of muscular diseases that are present from birth). We could not have been more pleased to have started such a great medical relationship with her new doctor, gotten such good news, and to have gotten some much needed answers. It was one of those days where you just kinda giggle on the inside at the perfection of the moment and the realization that was an obvious answer to prayer. We are so happy to be celebrating her first birthday tomorrow with a new found hope for what the next year (and all the years after that!) will have in store. Thanks so much for all your prayers, love, and support. We will (GLADLY!) keep you updated as we learn more about our precious daughter's condition and how to help her.

Much Love,
The Turner Family
(Josh, Becca, Ayden, & RILEY!)

Riley Update 2.15.09

2009-02-15T07:04:00.003-05:00

Riley is doing much better now, her cold is almost completely gone and her chest x-rays show much improvement from two weeks ago. She did have a fairly bad respiratory infection but we managed it at home and she is almost 100% again.

Since we have been unable to get any answers or diagnosis from our current Neurologist we are taking Riley to Shands Children's Clinic at UF in Gainesville this week to get a second opinion. We are hopeful that we will be able to get more of an understanding about Riley's condition and also revisit a few questions and test we had very early on. This week's appointment is really to just kinda get our foot in the door with their clinic but hopefully over the next few months we will be able to make some progress in understanding our daughter's very complex medical condition.

Oh and one last update . . . RILEY IS TURNING ONE THIS SATURDAY!!!!!!!!!!! I cannot believe she is already one year old. For being one of the longest years of our lives - it sure has flown by! Your first birthday is a big milestone in anyone's life but for Riley it is especial huge because the doctors told us initially we probably wouldn't even make it to this point but she is doing great, getting stronger, and has consistently & completely proved the doctors wrong! So even though it has been a crazy year of unanswered questions, misdiagnoses, and wrong prognoses we are thankful for each moment we have had with Riley and we know that our "faith does not rest in the wisdom of men, but in the power of God." - 1 Cor. 2:5. Riley is an amazing kid and a huge blessing to our lives, we are thrilled to be celebrating her first of MANY birthdays to come! Thank you to everyone who has been so loving and supportive over the past year.

Much Love,

The Turner Family

Riley Update

2009-01-18T09:19:00.002-05:00

Riley is doing really well and continuing to show improvements with her movements and control. She is gaining weight and getting so tall! :) She is making great progress however she does have a cold right now and is on oxygen and antibiotics. She is handling the cold well and we are hopeful that she should be able to fight this infection off without having to be admitted to the hospital. Please pray for her to have a quick recovery from this and for her continued improvement and growth.

Much Love,
The Turners

Fasting

2009-01-09T06:31:00.002-05:00

I had a miscarriage in September of 2006 and as soon as I could get pregnant again I did but I miscarried a second time in late December 2006. Two miscarriages back to back was really hard on Josh & I and we started to even play with the idea of adoption since it seemed like I might not be able to get pregnant again. That January our church had 21 days of prayer and fasting where the church comes together to corporately fast, pray, and seek God. Josh and I participated in the 21 day fast in January and I was pregnant again by May, this time with Riley! While having a baby like Riley is not with out its challenges, she has blessed and added to our lives in a way we could have never imagined and she was well worth the wait. In Matthew and again in Mark Jesus tells his disciples that some things only come through prayer AND FASTING. I have seen the impossible become possible in many people's lives when they got serious about seeking God through prayer and fasting. In Hebrews chapter 11, the Bible says that "He is a rewarder of those who diligently seek Him". Fasting is a powerful tool for aligning yourself with God and drawing near to Him, not for forcing His hand but for putting yourself in His hands. Josh and I are fasting again this year with our church and we obviously have things in our lives that we are pretty constant in prayer about but more than anything for us it is just about really focusing on God and starting the year out right. So, yes, we are fasting, praying, and believing for a break through for Riley but I know that regardless of if our circumstances change that this fast is going to be life changing as it is every year. If you are interested in fasting or would just like more information on it please visit www.awake21.org. It is an incredible resource that our church has put together and this year almost 300 different churches around the country will be doing the fast with our church. The fast begins this Sunday the 11th and I hope you will join us in praying, fasting, and believing for an incredible year this year.

Much Love,
Becca

This is Crazy

2009-01-02T00:29:00.003-05:00

So, it is currently 1:30 am and I am sitting up with Riley. Most of you don't know this, but every 4 hours Riley receives a CPT which is Chest Percussive Therapy. It is done to help break up the secretions in her lungs that sometimes form, it does not hurt in fact now when we do it it sometimes causes her to fall asleep. She receives 8 minutes of CPT on the front and 8 minutes of CPT on the back which got me thinking.....just how much CPT has she received, so I crunched some numbers and well this is insane.......( I THINK MY MATH IS RIGHT LET ME KNOW)

1,202,400 seconds of CPT
20,040 minutes of CPT
334 hours of CPT
14 days of CPT

And you know what I am thankful for everyone of those 1,202,400 seconds.....now don't get me wrong I would trade every one of those seconds for a healthy baby girl, but I have learned more about God this past year than I ever have in my life.

I do not know how to explain it, but there is freedom in life when you have no other choice, but to trust God. Also, there is an insane freedom found when you find that God has put a strength in you that can only come from his peace and his love.

If I am completely honest with everyone out there, I think it is has been because I have always had doubts. Lets be honest with ourselves sometimes the things that God says in the Bible are kind of hard to understand....( You mean for me to be first I have to be last?.....You mean that your power is made perfect when I am weakest?.....etc)...How do you understand that?.....I mean I know that there are the text book Bible answers, but have you ever really asked yourself ....WHAT?????.....Well if you haven't I have and I would imagine I am not the only one. However, this year all of these doubt or questions that I have had have been smoked by God and His Holy Spirit......

I understand what it means when God tells me that his strength is made perfect in my weakness....I understand that means when I am weak He is the one that gives me strength, that He is the one that carries me through these long nights, that He is the one that allows me to have peace in such a storm....and in that there is peace.......

I understand that miracles do not always have to look the way they do in my head....I understand what it means to have complete dependence upon God in a certain area of my life.....I understand that the moment I think I have a grasp on God I don't........

But most of all I have learned that I can really really really trust God and that whatever he decided for my life is best.....It may not always be easy, but because he is my Father and He loves me He knows whats best.........

I wish I could explain this better

Happy Holidays!

2008-12-27T17:24:00.002-05:00

We hope you all had a wonderful Christmas and we wish everyone a very Happy New Year!

Merry Christmas

2008-12-22T07:10:00.006-05:00

"And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger." -Luke 2:8-12

When you think about it, dirty animal feeding troughs and sleepy shepards are not at all the way you would expect the Lord of Lords and King of Kings to enter the world. When they imagined the coming of their Savior, most of the Israelites pictured a royal palace, a mighty king, and alot of fan fair - not a helpless baby in a pile of hay. But He came to adore not to be adored and true to form, all of the preconceived notions that humanity came up with for how God would show up were wrong. Sometimes I day dream about fantastic scenarios in which a big miracle happens and Riley is completely healed - like she just sits up and starts talking, or her trach magically falls out one day and she doesn't need it anymore. Of course God is capable of doing anything I am capable of imagining but if I have learned anything from history - chances are God is going to show up in ways I never imagined and completely blow me away. And that is what He has done. Over the past 10 months I have seen God show us His love, presence, peace, grace, and healing power in ways I could have never imagined. So rather than shrinking my expectations to fit my limited imagination I have learned to just pray and wait with no preconceived ideas about how God will show up, just faith that He will. In Luke chapter 2, the Bible mentions a devout follower of God named Simeon who "was eagerly waiting for the Messiah to come and rescue Israel." The actual Greek term used is "prosdechomai" which literally translates to "waiting forwardly." I think this gives the perfect image of being on your toes and being patient at the same time - exactly how we should all be in anticipation of how the Messiah is going to show up in our lives each day. Because of his patient yet eager expectation of the coming King, Simeon did live to see the Messiah. When he finally meet Christ, Simeon was an old man and Jesus was only eight days old - I am sure those are not the circumstances Simeon imaged but because he lived his life in faithful anticipation of seeing God show up, Simeon didn't miss it when He did. Simeon was able to look into the face of Jesus and he knew that the hope of his life had been fulfilled. So as we celebrate the miracle of God putting on skin and living among us, our prayer is that we (and you) continue to "wait forwardly" for how God is going to show up in our lives. We hope you have a very Merry Christmas and a blessed new year!

Love,
The Turner Family

Hope

2008-12-19T21:06:00.003-05:00

I often wonder what it will be like when I hear Riley's first sound. I often imagine it in a sort of movie like scene, where I am walking away and my back is to her and then I hear it. I immediately start crying and the sheer joy and even as I write this now I can feel the tears welling up in my eyes. However, there is another scene that I also have in my mind which is exciting, but at the same time very hard to think about. I am in heaven and I am walking and I just hear the word "Daddy" and in that moment for the first time I hear her call out to me.....it is more than I can bare.....I run to her and embrace holding her and weeping because she has finally been made whole.

What will it be like?

The beauty and the pain of these situations is that I may never experience the one here on earth, but I will most definitly experience the one in heaven. However today God gave me a hope that is beyond words. I don't know how to explain it except to say that just like I know my children's voices I also know when my heavenly father speaks to me and today he did in the most amazing way.

I was walking out of a store at the Town Center and I ran into one of Riley's old nurses. She was talking to two other ladies and was pushing a young boy in a wheel-chair. At first I did not notice much about the boy except that he had a tracheotomy, but I walked up to the nurse and told her I just wanted to say hi and that I was Riley's father. She then hugged me and asked me all about Riley and how she was doing, but then she said this is the little fella I take care of Jonathon.......Then I heard it this beautiful little boy with a tracheotomy said, "Hey man my name is Jonathon" and then he gave me a high 5. I don't know what it was, but something in my spirit jumped, I was seeing something that I have been praying for and imaging for so long.
I then knelt down beside Jonathon and told him that I had a daughter that had a tracheotomy to...he then just looked at me cocked his head and asked me her name and how old she was. I proceeded to talk to him for awhile, but eventually had to walk away because up under my dark sunglasses there were huge tears in my eyes that were getting ready to roll down my cheeks....As I walked away he looked at me and said,"I am really glad I got to meet you today."

I was a mess.........

It is amazing how God works, here is this small boy who could be no more than 8 years old who was physically and mentally disabled giving me a hope that I have not experienced since all of this happened with Riley. It was as if God was using Jonathon to tell me that it is possible and that I will not have to wait until heaven to hear Riley. I can't explain it........

Lamentations 3:24-31

I'm sticking with God (I say it over and over).
He's all I've got left.

God proves to be good to the man who passionately waits,
to the woman who diligently seeks.
It's a good thing to quietly hope,
quietly hope for help from God.
It's a good thing when you're young
to stick it out through the hard times.

When life is heavy and hard to take,
go off by yourself. Enter the silence.
Bow in prayer. Don't ask questions:
Wait for hope to appear.
Don't run from trouble. Take it full-face.
The "worst" is never the worst.

Why? Because the Master won't ever
walk out and fail to return.

Miracles

2008-12-15T16:12:00.001-05:00

Miracles from Josh Turner on Vimeo.

What miracles has God done in your life?

Relax

2008-12-14T23:02:00.002-05:00

Well it is a 11:00pm and I will be sitting up for the next few hours with Riley because one of our awesome nurses is in Germany.....It has been awhile since I have had to do this and I can say that I do not miss it at all.

If I am honest, it has been a trying time recently with Riley, don't get me wrong she is improving and doing great, but at times it is hard. It is hard to understand why God has not intervened more than he has and why we still don't have answers or financial help from the government. It has been really weird for me lately.

You go through a lot of weird emotions and you start putting tons of pressure on yourself to pray more and anoint with oil more and then pray again more. I fell into this really huge rut of beating myself up when I did not spend a lot of time praying for Riley and if we were running late getting out the door in the morning and we didn't pray I would beat myself up.....The funny thing is with out even knowing it and having the best of intentions I fell into a works based faith. I believed the more that I prayed and did all these things the better Riley chances of being healed were......Like God needs my prayers to remind him of all the things he already knows she needs and that her healing was some how dependent upon my prayers......

The devil is tricky, here I am just thinking I am praying for my daughter because thats what she needs, but some how it gets twisted in my mind and I started thinking that my prayers have something to do with her healing....Now, don't get me wrong prayer is really important and God does listen and answer prayers, but his answers aren't dependent upon our prayers...There is nothing I could say or not say to get God to heal Riley, he will heal her in his time......

So, I type all of that to say this......God knows what you need, be careful not to fall into a works based faith....We need to remember that it is not because of what we do or say that God moves and heals, but because of what Jesus did on the cross and the minute that we make it about our works we make it about us and not about Jesus......So relax God knows what you need and is watching out for you.....I SAY THAT JUST AS MUCH FOR YOU AS I DO FOR ME

Josh

Update

2008-11-17T19:51:00.003-05:00

Riley is doing really well and continuing to show improvement little by little. She has a cold right now but we are treating it with antibiotics at home (not in the intensive care unit at the hospital!) She has her two bottom teeth now and one of the top ones looks like it will be here soon & since she is teething she is chewing on everything and drooling every where!
We got some good news from her doctor the other day - they want Riley to take a Barium swallow test to see if she is swallowing and learning to protect her airway. She has never done this before for fear that she would aspirate any fluid put in her mouth but her doctor feels like she has made enough progress that he wants to go ahead with the test. We are a little nervous since we are not sure how well she is protecting her air way there is a chance the fluid could go into her lungs but if she passes the test it will be a big step forward toward eventually getting her trach out - but as of now her doctors all say that is still a LONG way off. So pray for amazing result for her swallow test and also for wisdom for us on what to do next with her. We are trying to decide what our best options are as far as seeking further testing and treatment. We have pretty much exhausted most of our research options in town and we are looking to take her to maybe Gainesville or Philadelphia - please just pray for guidance for us on where to go from here.

Much Love,
The Turner Family

Riley's 1st Halloween

2008-11-01T20:13:00.004-04:00

Riley looked adorable for Halloween. She was a monkey but then had to have a last minute costume change because the monkey made her too hot and sweaty. So she trick - or - treated with her big brother as a ballerina and he was a ninja. We didn't keep her out long because she has a little bit of a cold right now so she came in with me to hand out candy while Josh and Ayden went to more houses. I uploaded some picts to her photo page in the links section below. :)

Riley got her 1st tooth yesterday!

2008-10-20T06:45:00.002-04:00

Riley finally got her first tooth yesterday. Poor thing, this one has been a long time coming because she has been chewing on everything for about 2 months now. She is doing great and continuing to make some overall improvements in her movement and muscle tone. She is also gaining weight, she is up to 15 lbs. 8 oz. Also, Riley is loving the cool weather - we have been taking her outside more often and she just closes her eyes and smiles when the wind blows, she is developing such a personality - she cracks us up. Please keep praying for Riley because with the weather change comes flu season and we are really hoping to keep her healthy and out of the hospital this fall.

Much Love,
Becca

A HUGE Thank You to my amazing in-laws

2008-10-18T20:47:00.007-04:00

Traveling with Riley is very difficult. Riley needs an adult near her at all times and she has alot of equipment that has to be near her as well. So we have actually never been able to ride as a family in one car before because I have to sit in the back with Riley while Josh drives and that leaves no room for Ayden (he is only 5 and too young to safely sit in the front seat). So every time we have gone out as a family we have had to coordinate it with other people who can help drive Ayden or me & Riley. It is a nightmare and really hard on Ayden (& us) for us to never "go out" as a family. But now thanks to our incredible parents we can all drive together as a family! Josh's mom and dad got us a great deal on a used SUV with 3 rows of seats so we all fit! We are soooooo excited! This is a big step for us toward being more of a 'normal' family and we hope to take Riley out of the house a little more now - to do slightly more normal childhood stuff for her (and Ayden) like trips to the park or to get ice cream as a family! ;)

Ronnie and Gail, we can not thank you enough for this amazing gift! I could not ask for better in-laws than you two! You are so generous with your love, time, and gifts. We love you!

The 5K was amazing!

2008-10-15T15:37:00.003-04:00

Thank you so much to everyone that came out for the 5k! There were over a thousand runners and we had such a great time. We pushed Riley in the race & she did really well and her older brother Ayden (5yrs. old) ran the whole first mile! It was so great to see so many people that mean so much to our family all in one place. THANK YOU to all of the incredible staff from the PICU and NICU at Wolfson Children's Hospital, the staff from Carithers Pediatrics, the Roar Alumni, our Celebration Church family and everyone else who came out to support us. We were completely overwhelmed as we walked up to the race to see all of the people there - old friends from high school and college, people that work with our parents, old teammates, nurses and hospital staff - it was crazy! Josh and I would like to say a HUGE thank you to the RITA foundation and my incredible sister, Whitney, who worked to make all of this possible. We are so lucky to have so many amazing people in our lives. We love you!!!!!

Much Love,
The Turner Family

ps- there are some picts from the race if you click the link below for Riley's photos

5K Walk / Run this weekend!

2008-10-07T09:53:00.002-04:00

Just a reminder that the 5k walk/run for Riley is this weekend. We have partnered with a local non-profit (the RITA Foundation) to put together a 5K Race for Riley. The 5K is this Sat. Oct. 11th at 8:00am the St. Johns Town Center. For more information or to register to participate in the race please click on the 5k Run/Walk for Riley link to the right or you can go to http://www.1stplacesports.com/. The RITA Foundation has graciously agreed to give 100% of the money raised by Riley's group of run/walkers to Riley!!! If you are not participating in the race but would still like to make a donation donations can be made here on Riley's site by clicking below where it says "Donate Online" or you can make a donation through the RITA Foundation (http://www.the-rita-foundation.org/). The RITA Foundation is a 501 (c) (3) non- profit and they will provide receipts for all donations made to them. Make sure that you put 'Riley Turner' on the donation. Josh and I hope to raise enough money so that we can provide for all of Riley's medical needs but we will also give a portion of the money raised to a fund for families in our kind of situation through PedsCare Community Hospice. Situations like ours break families apart all the time - I can't tell you the number of families with medically needy kids I have come across or learned about that have gotten divorced just so they could qualify for medical assistance as single parents. Medically needed kids need a loving and nurturing home to grow up in, not one that has fallen apart in order to "work the system". Marriages are under attack enough as it is, getting help with medical bills should not be another reason for the divorce rate to go up! (but stepping down from my soap box now . . . ) I hope to see you all at the Race! :) Please pass the race information along to anyone who can help!!!! Much Love, Becca Turner

New Photos

2008-10-03T07:50:00.002-04:00

We posted some new photos of Riley and picts. from the Golf Tournament and Benefit Concert.

On an island

2008-09-27T10:01:00.005-04:00

The past few weeks with Riley have been so hectic with her being in and out of the hospital that I have barely had time for sleep, let alone anything else. I have been feeling really disconnected and completely out of the loop (For instance I just found out the economy is not doing so hot. . . I guess I could at least turn on the Today show every now and then or something!) Everything with Riley is so consuming at times that it is hard to not feel like I am on an island. I have been praying about this lately and I keep running into the same story from Acts. I am not a big believer in just opening your bible to a random page and then expecting it to be relevant to what you are dealing with but this week as I prayed about the feeling of "being on an island" then opened my bible to see the title "Paul on the island of Malta" I had to laugh also the book I am reading "Wild Goose Chase" just talked about this same story as well. In Act chapter 26 and 27 Paul is a prisoner on a ship sailing from Adramyttium to Rome where he is to stand trial before Cesar. But as they are sailing somewhere in the Mediterranean Sea they get caught in hurricane force winds for 2 weeks and then finally shipwreck on the island of Malta. As if this wasn't bad enough, as Paul is gathering firewood and putting it on the fire to get warm and dry off "a viper, driven out by the heat, fastened itself on his hand." (Acts 28:3) Now I wonder at what point in all of this is Paul thinking "you have got to be kidding me God!". Do you think it was during the 14 days of the hurricane out at sea as he was throwing up over the side of the boat or maybe as he held onto a piece of driftwood while swimming to shore after the shipwreck. Surely as the poisonous snake dangled from his hand he had to be thinking that his circumstances have become somewhat ridiculous. But I love what comes next . . . as the people of the island sat around "waiting for him to swell up or drop dead, but after waiting a long time and seeing nothing unusual happen to him, they changed their minds and said he was a god." (Act 28:6) The people of Malta then took Paul (the shipwreck, poison filled prisoner) to met Publius, the chief official of the island and Paul prayed for Pubius' sick father and he was healed. "When this had happened, the rest of the sick on the island came and were cured." (Acts 28:9) I am sure Paul felt like his life was drastically off course at this point but God had him right where He needed Paul to be. The bible goes on to tell about the rest of Paul's journey to Rome but I wonder about what happened to the Island of Malta after Paul left - I am sure that the people there were never the same after hearing about Paul's God and seeing all of those miracles. It just made me think about how a few months ago I spent my time with middle school kids working at the church and now I spend most of my time with middle aged doctors - definitely not a path I would have chosen for myself but I know that this "shipwreck" is part of God's plan and I won't be on this island forever. So in the mean time, my prayer is that everyone who meets little Riley on this island with us will be impacted by the miracles they see in her life. As always, thank you for caring about and supporting our family.

Much Love,
Becca

Riley Update

2008-09-24T19:48:00.002-04:00

I am horrible at blogging and haven't kept up with it at all lately! Sorry! So here is a very late Riley Update . . . Riley just got home from another 6 day stay in the PICU - she stayed for 5 days from the 11th to the 16th and then went back in on the 19th and we just came home today - it has been an exhausting two weeks! The doctors' best guess is that Riley has some sort of viral infection that is causing inflammation in her lungs and wheezing plus poor gas exchange so she has been on oxygen for several days now. She is on antibiotics for a possible bacterial infection but there is nothing that they can really do for the viral infection except try to alleviate the symptoms as best we can and just wait for her to get better. It will take some time for her to get over it but she is doing much better. She is still on oxygen and still has a little bit of a wheeze from time to time but we are so glad to have her home again and I know she will get much better sleep in her own bed (and so will we now that she is home!).

Also, THANK YOU SO MUCH to everyone who participated in the Golf Tournament and the Benefit Concert! I am amazed at how loving and supportive everyone has been! We could not ask for better friends and family! We love you!!!!!!!!

Much Love,
Becca

Benefit Show

2008-09-23T09:23:00.002-04:00

This past Saturday we had a benefit concert for Riley at the Murray Hill Theatre in Jacksonville. It was one of the most amazing nights of my life. I was completely blown away by how many people came out in support. That night at Murray Hill there was about 700 people in attendance and 4 amazing bands that gave their time and love freely that night. It was so cool to see so many people that I have never met before come out to support my family, there were people buying PRAY FOR RILEY t-shirts left and right and offering words on encouragement to me all through out the night.

One of the bands that played is a band from Orlando called Between the Trees they are on the Vans Warped tour, MTV, and Universals record label. Needless to say they are pretty big time, yet their hearts are like no other band that I have met. They say that they created their band to help those that need help and to make a difference and not just money. They are amazing guys with huge hearts who did this for me as a personal favor.....THEY ARE AMAZING GUYS WITH HUGE HEARTS SUPPORT THEM......Between the Trees

The picture above was my favorite part of the night, it was when I got to go up on stage and minister a little bit. In the picture is myself and Ryan the lead singer of Between the Trees (he is playing keys) and a huge picture of Riley....It was an awesome night the I am still trying to recover from.

1st Annual Riley Turner Golf Tournament

2008-09-19T21:48:00.002-04:00

First off let me start by saying Tiffany, Jason, John, and Shellie thank you so much for everything that you did for this Golf Tournament, it exceeded all of my expectations. To everyone who participated thank you for being such a blessing to my family I am truly thankful you are in my life.

Today I was amazed as 70 golfers showed up for a tournament to help raise finances for my family and our ongoing medical expenses. It was so humbling for me to see so many people that have been rallying around us in prayer that I had no idea about, it is a very cool thing when you meet someone for the first time and the first thing that they say to you is I HAVE BEEN PRAYING FOR YOU AND YOUR FAMILY.

There was something that I wanted to share today, but honestly I did not want to cry in front of so many men so I decided to post it here:

The Sheep and the Goats

31"When the Son of Man comes in his glory, and all the angels with him, he will sit on his throne in heavenly glory. 32All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. 33He will put the sheep on his right and the goats on his left.

34"Then the King will say to those on his right, 'Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'

37"Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38When did we see you a stranger and invite you in, or needing clothes and clothe you? 39When did we see you sick or in prison and go to visit you?'

40"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'

You see for so many of you today was just about helping a family raise money for their daughters ongoing medical expenses, which is an amazing thing in and of itself. However, there is a bonus for your generosity that many of you probably did not even think of and that is that you were doing this to Jesus.

You see the Bible makes it very clear in the verses above that whenever we do anything for those less fortunate than us that we are really doing it for and unto the Lord. Many of you today in just helping my family fulfilled a biblical principal of caring for those who may be less fortunate and for that our loving Lord in heaven will pour out is love and blessings upon you.

THANK YOU FOR BEING THE HANDS AND FEET OF JESUS.

GOLF TOURNAMENT FRIDAY

2008-09-18T13:18:00.004-04:00

Hey everyone playing in the Golf Tournament tomorrow thank you so much. Below I have listed the times of certain things that will be happening, so come ready to play.

7:30-8 Continental Breakfast w/ Range Balls

9:30-Shotgun

2-3-Lunch w/Hamburgers and Hotdogs

There will also be some putting contests for 1,000 dollars as well as a 10,000 dollar putting and no I am not kidding. I look forward to seeing all of you there.

Josh

Riley is home

2008-09-18T11:19:00.002-04:00

Riley came home from the hospital on Tuesday. She is still on anitbiotics for a double ear infection and a small respiratory infection we can't seem to shake. She is doing much better and you can tell she is so glad to be home. Thank you all for the calls, prayers, and support!

Back in the Hospital

2008-09-12T08:46:00.002-04:00

Yesterday Riley went back into the hospital for heavy congestion in her lungs. They are admitting her because of the congestion, but also so that they can give her some strong meds that are only available through IV treatments. Please just continue to pray for my daughter and my family we know that God is in this, but at times it is hard.

Yesterday I left work early to go pick up Ayden from school because Becca was with Riley at the doctors office. When I go to pick up Ayden it is just inevitable that I am going to have to wait in a ridiculously long parent pick up line for him, so I thought why don't I just spend some time with God right now. As I pulled out my prayer journal and started writing, my prayers turned into the questions of....WHERE ARE YOU GOD......seriously......WHERE ARE YOU. I was not content at that moment just praying that he heard me and that he was near I needed him to show me. I needed some sort of physical proof. So, I asked him to show me, my actually journal says.......PLEASE GOD GIVE ME A SIGN OF ENCOURAGEMENT. At about that time the line started moving for me to get Ayden and I put my journal up.....About 15 minutes after that I received a twitter ( a mass text message) from Jason Laird (Tweeze) the High School Youth Pastor at Healing Place Church in Baton Rouge.

This is what it said word for word:

2 Cor 12:9 "my power works best in your weakness."**when we're at our worst God's at His best!! Weakness positions us for greatness

I was floored I knew that was a message from God to me saying I have got you right where I want you. So, here is the crazy part, I called Tweeze to say thanks for sending the twitter out that I received at 3:14pm because God had just really used him in my life to encourage me in a time of weakness. He said thanks, but then went on to tell me that he sent that message out at 8:15am...Now you can call that a coincidence or whatever, but that is God telling me, "Look I know what I am doing, I have got you."

I trust in God with all my heart because he is my only hope, but it is still awesome when he just blatantly lets you know he has you.

Psalm 62:8
I trust in God at all times. I pour out my heart before Him; God is a refuge for me

Riley Update

2008-09-02T20:30:00.006-04:00

Riley is doing really well and making alot of progress. It is hard to explain the changes because she has not made any specific major advancements but she is moving alot more than before and her over all muscle tone seems to have improved slightly -which is incredible! She is moving her arms and legs much better now and is even able to hold her head up for a few seconds at a time when her shoulders are well supported. She is doing much better with her feeds and hasn't had an issue with spitting up for some time now. She is gaining weight and continuing to get stronger. She is also getting really playful and her face lights up when her big brother Ayden is around. We have also discovered that she loves British accents (our family is pretty goofy ;) and it gets kinda crazy around here at times). We (as a family) are also doing really great. Ayden has just started kindergarten, the crazy back to school season has started for Josh and his youth ministry is going really well, and I am loving life as a stay at home mom. It seems like all of the crazy twists and turns have died down a little bit and we are getting pretty good at life with Riley at home (it has been 2 months now with no hospital stays!) As always we want to say thank you for all of your love, support, and prayers. We are in a constant state of awe and gratitude for how loving and generous so many people have been toward our family.

Much love,
Becca

Healer

2008-08-26T22:53:00.002-04:00

So sometime back on our blog I posted a link and a song called Healer written by a guy out of Australia.....it is an amazing song. The story was that he wrote this song in one sitting after he had been diagnosed with terminal cancer over two years ago. On a recent dvd I watched with this guy was performing this song with oxygen tubes in his nose and was singing about how God was his healer....I am not going to lie I wept, I mean I cry at everything anyway, but this especially because I have an emotional connection with the song due to Riley and her mystery diagnosis or lack there of. Well, anyway it has come out recently that some how this guy has faked his entire two years of cancer , even to his family. Apparently he has some really bad inner demons lets just say and that led him to live this lie even to those closest to him.

I have heard so many different responses to this newly released news....People saying they can't listen to the song anymore, other worship leaders not wanting to play it, and just out right anger. After I found all of this out I have to admit I was disappointed, but mainly because it is just another very public failure in the Christian community.

However, I still love the song. I believe with everything in me that God gives worship leaders their songs and that that song is one from God. It is just another example of a perfect God working through imperfect people, however it does not negate the fact that God gave this guy the lyrics to the song. It would be very easy for me to sit back and cast stones at the guy and say what a let down he is to the body of Christ, but what if he did write all of these words saying that God is his healer and he just couldn't share all of his inner demons so he faked cancer. I understand it is still wrong and in no way acceptable, but I am not going to be the one to throw rocks at christians who struggle and fail.

If we remember Romans 3:23 it says,

23for all have sinned and fall short of the glory of God,

So instead of condemning this guy and the words he has written we should pray for him, and regardless of his lies we should sing this song because it is an amazing song and God is our HEALER.

HEALER

You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my Healer
I believe You are all I need
I believe You're my Portion
I believe You're more than enough for me
Jesus You're all I need

Nothing is impossible for You
Nothing is impossible for You
Nothing is impossible for You
You hold my world in Your hands

Concert

2008-08-23T10:44:00.007-04:00

All of you who know me know that I have a small addiction to music...."Hello my name is Josh and I am a musicaholic"......Anyway on September 20th at 8:00pm there is going to be an amazing show to benefit our beautiful daughter and her on going medical expenses. This show will be at the Murray Hill Theatre and will have 4 bands playing at it Sent by Ravens, The Sophmore Attempt, Between the Trees, and Our Finest Hour. This show is going to sell out due to it being a reunion show for Our Finest Hour (thanks guys) so if you want tickets I highly highly suggest you buy them early at The Murray Hill Theatre.

Also, I want to say thanks to my friends from Between the Trees. I met these guys one time at a show they did for Celebration and in that meeting formed a friendship with them that would cause them to come up from Orlando to do a show for Riley. They are truly awesome guys and have a heart for what it is they do....Thanks Guys

Check out their video....The Way She Feels

I look forward to seeing all of you at the show and enjoying some face melting guitar riffs,
Josh

Riley Update

2008-08-18T21:04:00.003-04:00

Riley is doing really well, she has been home with no hospital visits for over a month now. Her pneumonia is finally going away but now her doctor thinks she might have an infection in her colon from being on antibiotics for too long. Despite all the colds and infections - she is doing well and she is continuing to make progress. She has been gaining weight, not as much as we would like, but still gaining which is great. Her overall strength and tone is slowly improving as well. Her control and strength in her hips and legs has gotten much better and we are excited to see her moving her legs in ways she has been unable to until now. She has a great disposition and is always smiling (and her new thing is to stick her tongue out when she gets really excited). Inch by inch she is steadily getting better and we are so encouraged by & just amazed at God's daily miracles in her life. Even little things like a cough or sucking her thumb are simply amazing for her and it seems like every week she is doing a little more than she did the week before. The areas were we really need to see improvement for her are her neck, upper arms, and mouth. She is extremely weak in her neck, shoulders, & upper arms and has shown little improvement in these areas. We are praying for strength and muscle development so that she can support her head and have more controlled movement in her arms. Also, we are still praying and believing for her to begin protecting her own airway by swallowing, gaging, and sucking. Thank you so much for your love and prayers for sweet little Riley.

We love you and are so thankful for all of you!

Dreams

2008-08-15T15:09:00.002-04:00

The past few nights I have found myself having more and more dreams about Riley. They are dreams of her when she is older with long dark hair and she is helping other people. However, the one that has stuck with me the most is the one I had last night and she is a toddler and is walking into my arms. It is a beautiful dream to me that brings tears to my eyes even at this moment. Just the image in my mind of her walking in to my arms is more than I can handle, it is amazing. Although it is an amazing image it is just a dream right?....there is nothing to say that it will really happen right?.....well for me I always have to ask what does God say about dreams and what does the Bible have to say....

In Genesis Joseph has some crazy dreams about his family and brothers kneeling down to him.....Later on we find out that all of these things actually happen in Josephs life......Further down the road in Josephs life he has to interpret dreams for a baker, a cup bearer, and the Pharaoh.....All of these dreams that Joesph interpreted come to pass.....they were signs of things that would come in the future.

Then in Numbers 12:5-7 the Bible says this.......

5 Then the LORD came down in a pillar of cloud; he stood at the entrance to the Tent and summoned Aaron and Miriam. When both of them stepped forward, 6 he said, "Listen to my words:
"When a prophet of the LORD is among you,
I reveal myself to him in visions,
I speak to him in dreams.

7 But this is not true of my servant Moses;
he is faithful in all my house.

Now I am no profit by any means and I am certainly not Moses, but what this passage does show is that God does communicate through dreams. God, is the one who gives us our dreams he is the one that places them in your heart and head. Far to many people don't hold on to their dreams that were given to them by God and it is sad when you see someone whose dream has died.

I believe with everything in me that God gives me my dreams about Riley. I believe God places them in my heart for encouragement, hope, and strength. I will hold on to these dreams during bad days and remember them on good days until God gives me more dreams about my daughter and her future.

Josh

Expanding my capacity

2008-08-10T20:24:00.003-04:00

Riley has a cough assist machine that we have to use on her twice a day (and some times as many as 6 times a day when she is sick). The machine does what its name implies, it assists her in clearing her lungs by blowing in positive pressure and then sucking it back out. This pressure allows her lungs to expand to a capacity that she is unable to expand them to on her own, but she absolutely hates it. She squirms and cries and sometimes even throws up because she gets so upset when I do her treatment with it, but it has huge overall benefits for her respiratory health. So even though it kills me to see her upset, I do her cough assist treatments at least twice a day, everyday. Tonight right after I finished a treatment she looked up at me and smiled with her face all red from crying and a big alligator tear still rolling down her cheek - and I though "this is how I am supposed to act". Why is it that I can do such a horrible respiratory treatment to her all the time and she still smiles at me afterwards, but when our heavenly Father tries to do something that helps us to expand our capacity we get angry, blame Him, cry our eyes out, and we don't smile at Him even when it is all over. This is what Christ meant when He said to have faith like a child - to believe that your parents are doing what is best for you and to just simply trust and follow. Sometimes I want to slap James for saying "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2-4), but the truth is he couldn't be more right. We need to smile during uncomfortable and hard situations because we know that there WILL be good results once it is over and we would not be unable to attain those results, that new level without the current difficult trail. So, thank you Lord for daily expanding my capacity, I am so grateful for your unfailing love and commitment to never let me stay as I am.

Happy half-Birthday!

2008-08-07T19:51:00.002-04:00

Riley is 6 months old today!!!!! She is doing great and making alot of progress. She is still very weak and the doctors still have no idea what is wrong. But we are amazed looking at the baby she is now compared to 6 months ago when she was born - her progress is nothing short of miraculous. Thank you for all of your prayers and support over the past 6 months! We love you all!

It's in the small things

2008-08-06T00:41:00.004-04:00

I have found that when it comes to praying for Riley I usually tend to pray for smaller more specific things. Don't get me wrong I pray for God to do a huge turn around miracle in her, but I more often than not I find myself praying for small specific things. Well recently I have been praying for something very small yet very specific. For whatever reason Riley holds her mouth open when she sits up and has not learned to close it yet. So, recently my prayers have been for God to help her close her mouth when she is sitting up and I tell you what it has been happening. I don't know why I am surprised every time she shuts her mouth, it's like a little victory for me. It is a weird thing, but it is the little things that let me know she will be fine one day.

Undeserved Credit

2008-07-31T22:06:00.004-04:00

A lot of people lately have been asking me how Becca and I have been handling Riley so well. They always say man if it was me I would be a mess I would not be able to keep it together, then they usually give Becca and I credit that I don't deserve. I have to say honestly that my wife amazes me, she has strength that rivals that of Wonder Woman. I get to leave everyday and go to a job that I love and be around my best friends and do something that I know that God has called me to do. While I am doing that Becca is at home caring for Riley, doing physical therapy, playing with her, working with her, and giving her all of the attention any child could ever hope to receive from a mother. Then when Ayden and I get home she turns her attention to him and becomes a mother to our very hyper 5 year old son. I am amazed at her because honestly I can't do it, I am not strong enough to do what she does everyday. So, I guess I am saying all this to say the reason that I seem to have it all together when I am at work and when I'm out is because of the strength that my wife has at home. If it weren't for her I would be a mess and not be able to keep it together either. She amazes me.

FUND RAISER

2008-07-31T09:39:00.001-04:00

Pampered & Polished Spa Fundraiser for Riley

The amazing folks at PAMPERED & POLISHED SPA are doing a big fundraiser for Riley Saturday, August 02, 2008 from 9am - 3pm. They will be doing a car wash, bake sale, and selling prepaid certificate for Spa services. They are making available a limited number of certificates for the following services:

$35 - 30 Minute Table Massage $30 - Ladies Haircut
$15 - 15 Minute Chair Massage $15 - Men’s or Child’s Haircut

The Spa will donate $5 - $7 per prepaid certificate towards Riley’s Trust Fund. The services are available through August 30, 2008 at the Spa location. If the certificate is not redeemed by the expiration date, the total value of the certificate will be donated to the fund. Please write checks payable to the Spa and designate it “for Riley Fundraiser”.

Pampered and Polished Spa
6829 Merrill Road, 32277
http://www.pamperedpolished.com/

The Car Wash will continue throughout the entire day. Spa Services can be redeemed on day of the event. Baked goods and sodas will be available.

Thank you so much to Serena and everyone at Pampered and Polished Spa . . . Y'all are incredible!

HEALER

2008-07-29T20:41:00.003-04:00

Please watch this video...The song is written by the guy singing Mike from Hillsong Church...He wrote it right after he had been diagnosed with terminal cancer....He is healed

Lyrics

You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in you
I trust in you

I believe
You're my healer
I believe
You are all i need
I believe
You're my portion
I believe
You're more than enough for me
Jesus, you're all i need

Nothing is impossible for you
Nothing is impossible
Nothing is impossible for you
You hold my world in your hands

Faith

2008-07-26T21:01:00.002-04:00

"As Jesus was leaving town, trailed by his disciples and a parade of people, a blind beggar by the name of Bartimaeus, son of Timaeus, was sitting alongside the road. When he heard that Jesus the Nazarene was passing by, he began to cry out, "Son of David, Jesus! Mercy, have mercy on me!" Many tried to hush him up, but he yelled all the louder, "Son of David! Mercy, have mercy on me!" Jesus stopped in his tracks. "Call him over." They called him. "Get up! He's calling you to come!" Throwing off his coat, he was on his feet at once and came to Jesus. Jesus said, "What can I do for you?" The blind man said, "Rabbi, I want to see." "On your way," said Jesus. "Your faith has saved and healed you." In that very instant he recovered his sight and followed Jesus down the road. " -Matthew 10:46 - 52

I love Bartimaeus' persistence - he knows the Lord is near and he is calling out for Jesus' help and when everyone around him tries to silence him, he cries out all the louder. It is just such a great image of reaching and calling out to God when everyone else is saying otherwise. I love this story and have read it tons of times but I always just skim over where it says, "throwing off his coat" but that is the best part of the story! Apparently, in Jesus' time the blind beggars were required to wear red outer garments so that everyone coming down the road would know they were blind and not able to move out of the way very well. So, not only does Bartimaeus cry out to God despite what everyone else is saying, but he also jumps to his feet and throws off his cloak (a symbol of his blindness) as he draws near to Jesus fully expecting to be healed. It took courage for Bartimaeus to cry out in such a way to Christ but it was not his shouts that Jesus responded to; even non-Christians will cry out to God for help when life gets really tough. It was how Bartimaeus threw off his coat and stepped toward Jesus with bold faith, in anticipation of a miracle - that is what lead Christ to say "your faith has saved you and healed you." Mark 11:24 says, "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." What is the point in asking for God to do something if you doubt it will be done even before you ask? Granted, God does not always answer every prayer with a yes but we still should, in faith, prepare to receive what we ask for. So once a month I make a point of getting a little something for Riley for when she is older than her predicted lifespan, this month it was a 2T size of pink gellies (I used to love those shoes when I was little!). It is not enough for me to cry out for mercy but I have to act as thought I am going to receive it.

Thanks for all of your love & prayers and please keep the prayers going - Riley has pneumonia again, but she is handling it much better this time and is at home! (every other time we have been in the ICU for at least a week). Please pray that she will get well soon and not have to be admitted to the hospital this time at all.

Love,
Becca

Riley Update

2008-07-21T21:44:00.002-04:00

Riley has been doing great lately! :) She has a cold right now but the amazing thing is we are still at home! Normally when she is sick we end up in the hospital for at least a week so it is great that she is doing well despite a respiratory infection. Her pulmonologist said that he is really impressed with the improvements she has made in her respiratory strength. Also, she is tolerating her new g/j tube really well. We have been able to move her and do alot more therapy with her without the fear of making her spit up because her belly is too full. But we are still having issues with her refluxing and vomiting (unrelated to feeds) - so we are hoping and praying she will grow out of this so that we don't end up having to have another surgery. The amount of progress that Riley has made so far is nothing sort of miraculous but she definitely still has a long way to go. The biggest things we are praying for right now are her respiratory infection, her swallow reflex, and her reflux issues. Thank you for all of your love and prayers!

Pampered & Polished Spa Fundraiser for Riley

2008-07-18T09:43:00.004-04:00

THANK YOU!

2008-07-16T10:09:00.002-04:00

Josh and I just want to say thank you to all of our friends and family for all of your love, help, and prayers. The outpouring of support has left us speechless and extremely humbled. I wish I could put into words the impact that your prayers, donations, and support have had on our family. The saying "it takes a village" is so true in Riley's case - we could not make it with out all of you. I am overwhelmed by the incredible people God has brought into our lives that live with such an open hand and an open heart toward others. So THANK YOU to all the nurses who have volunteered their time, all of the friends who have pulled all nighters with us, everyone at Celebration Church - y'all are INCREDIBLE, everyone that has donated to help fill all of Riley's medical needs, everyone that keeps praying & interceding for little Riley, and our wonderful family that has come around us & supported us since day one. We love you all and we are so grateful for everything!

Much Love,
Becca and Josh

PS - Please keep praying for Riley's gastrointestinal system. We are still having trouble with her vomiting and hope to correct the issues without major surgery.

Aching for change

2008-07-10T11:04:00.005-04:00

One of the reasons I love being a mom is what it has done in my relationship with God. Having children has allowed me to better comprehend just a hint of what God feels for us as His children and it has deepened my relationship with Him exponentially. All that I feel for my kids of unconditional love, hopes and plans for their future, and pain when they hurt is not even a shadow of the same thoughts and feelings that God has about me. God rocked my world with revelations of His love when my son, Ayden, was born but now He has completely ruined me with everything He has shown me through Riley. Most of you that know me know that I am not much of a crier (except when I am really tired . . . I cried the other day just cause I spilt my coffee on the carpet) but lately I am a complete wreck at anytime of the day when thoughts of God's amazing love enter my mind. I always think that if I could will Riley to be well she would have been healthy from the moment I found out she was sick. (Without being too dramatic . . ) Sometimes I think that if the passion and just gut wrenching emotion that fills my thoughts and prayers about her - if that was enough, if my love was the remedy she would be healed a thousand times over. But the thing that completely breaks my heart is that I know that pain I feel for Riley is only a fraction compared to what my Heavenly Father feels for His hurting children. I have spent enough time in ministry and children's hospitals to know that we are SO far from the plans and hopes He had for us. I know that if the Lord could will us away from the fall and into a right relationship with Himself (without taking away our free will and our choice to love Him) that He would! There have been so many times that I have burst into tears just walking down the hallway of the children's hospital, not because of my daughter or the other children, but because of God - I can feel His agony at how wrong the world is. It is His desire for us to be healthy, whole, full of joy, and intimate with Him but for the most part we are just breathing in and out, not living as intended. I wish I could better put these emotions God has shown me on paper, that I could truly convey the deep agony of His love for us and His anticipation for when we hurt no longer & we can finally rest in the remedy of His Love. I guess the simplest way I can put it is I know that I am loved beyond comprehension by my Heavenly Father, no matter how hard I cry or how loudly I laugh, the Star Maker and Holy Creator of the Universe cries all the more harder at my pain and laughs all the more loudly at my joy. . . WOW!

5K Race for Riley

2008-07-09T18:47:00.004-04:00

My AMAZING sister has helped us to partner with a local non-profit (the Rita Foundation) to put together a 5K Race for Riley. The 5K is Sat. Oct. 11th at the St. Johns Town Center. Run/Walkers can register for the race at http://www.1stplacesports.com/. Rita Foundation has agreed to give 100% of the money raised by Riley's group of run/walkers to Riley!!! Donations can be made to the Rita Foundation (http://www.the-rita-foundation.org/) and we are working on setting up a way to donate here (at Rileyturner.com) also. The Rita Foundation is a 501 (c) (3) non- profit and they will provide receipts for all donations made to them. Make sure that you put Riley Turner on the donation. Josh and I hope to raise enough money so that we can provide for all of Riley's medical needs but we will also give a portion of the money raised to a fund for families in our kind of situation through PedsCare Community Hospice. Situations like ours break families apart all the time - I can't tell you the number of families with medically needy kids I have come across or learned about that have gotten divorced just so they could qualify for medical assistance as single parents. Medically needed kids need a loving and nurturing home to grow up in, not one that has fallen apart in order to "work the system". Marriages are under attack enough as it is, getting help with medical bills should not be another reason for the divorce rate to go up! (stepping down from my soap box now . . . ) I hope to see you all at the Race! :)

Please pass the race information along to anyone who can help!!!!

Much Love,
Becca Turner

Riley Update

2008-07-08T21:31:00.002-04:00

Riley has been doing great this past week since she has been home. The new j-tube is working great and she is finally putting on some weight, she just hit 12 pounds. :) She is moving alot more and her movements are getting much more controlled, she rubs her eye when she is tired and pushes my hand away when I am trying to do stuff for her that she does like! She is getting so big and we are so excited about all of the progress she is making.

Love,
Becca

Riley is home again :)

2008-07-03T03:11:00.008-04:00

Riley came home from the hospital Sunday morning and we are so glad to have her home. Her pneumonia has cleared and while in the hospital she had a feeding tube placed in her small intestine. The hope is that with food going directly into her small intestine (or Jejunum) she will not be at risk for vomiting - but the down side is she is always connected to her feeding pump because she has to eat 24 hours a day so that the food is delivered at a rate her jejunum can handle. We are working towards slowly increasing the amount of food per hour so that she is able to have her feed delivered over 16 hours a day but that will take some time. The only other option was a very invasive procedure to wrap her stomach in order to prevent reflux or vomiting so we are hoping that this tube into her jejunum (or j-tube) will remedy the problem. While this procedure was much less complicated than wrapping her stomach it ended up being a very painful procedure for her and the tube is not permanent. The doctors said that the j-tube will last about 4 months and then will need to be redone. Our prayer is that she will gain weight & grow stronger so that when the time comes for the j-tube to be replaced she will simply not need it anymore.

Also, Josh and I really just want to say thank you to all of our amazing friends, family, and church family at Celebration - we are completely overwhelmed by the outpouring of love and support from all of you. It is so humbling to have the honor of doing life along side such amazing men and women. We have maxed out our insurance and our (very expensive) nursing agency is unable to provide us with nurses any longer . . . it is 3:00 in the morning and I am on the second half of the night shift to care for Riley (Josh stayed up with her till 2). We are exhausted and have no idea how we are going to afford everything but oddly enough, we are completely OK with that. In Matthew 10:9 as Jesus sent out His disciples he said, "Do not take along any gold or silver or copper in your belts; take no bag for the journey, or extra tunic, or sandals or a staff" He said this so that they would be completely reliant on God and would only be able to boast on His provision alone for their food and shelter from day to day. We wake with excitement and anticipation each morning to see how God is going to provide for us that day - whether it be advice from someone who knows the system, finding a qualified nurse to work for us that night so we can sleep, or a good report from one of Riley's doctors. It is by no means an easy way to live each day without much sleep or much of a plan for the future but it is easy for us to put our hope in a loving God who hasn't failed us yet. 2 Corinthians 2:9 - "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."

Love,
Becca

Riley is back in the hospital

2008-06-25T13:02:00.005-04:00

Riley is back in the Pediatric Intensive Care Unit at Wolfson's Children's Hospital again. She started having trouble breathing in the middle of the night Saturday night and we ended up taking her to the emergency room at about 9:30 Sunday morning. She was admitted to the PICU Sunday afternoon with suspected pneumonia. The best guess is that with all the increased vomiting she has aspirated a little and now her lungs have an infection. She is doing much better, but still in the ICU and she is still on a little respiratory support for oxygen and a little positive pressure to help her breath better. While in the hospital they have been examining her and doing a few test to pinpoint the cause of all the vomiting. This morning she had a gastric emptying study that looks for reflux, aspiration, and how well she digests food. After the result from the test are studied the Gastroendocrinologist will determine if she needs surgery or not. We are frustrated to be back in the hospital again so soon and really hope to get her home and HEALTHY.

Although I have my serious moments I have found that for the most part I am a completely ridiculous 25 year old who always says or does stupid things. Yesterday at 4:00 in the morning while driving up I-95 on my way to the hospital I discovered several truck drivers laughing at me as I sang along to my IPOD at the top of my lungs. Do you ever wonder if your life had theme music what would be playing at different times? Well yesterday morning, I found that moment's theme music and felt the need to sing along (at the top of my lungs and very off key). So here are the words to our theme music for this week :) . . .

We love you Jesus by Shane and Shane

Opening the door to dine with Him.
Traveling to Earth to let us in.
Laying down His glory crown of old.
Setting up the wedding feast foretold.

Oh, we can't contain our love.
We turn it up loud.

We love You, Jesus!
For so many reasons.
For death and life and freedom.
Even now, we love you.

What manner of love is this that You would say
your sin is Mine, I'll take it to the grave. (then rising).
Death oh, death where is your sting today?
Death is swallowed up in victory.

We love You, Jesus!
For so many reasons.
For death and life and freedom.
Even now, we love you.
We love You, Jesus!
In and out of seasons.
In valleys and on top of mountains.
Even now, can we sing.

We love you Jesus.
Jesus.

I hope you have a great day and please keep praying for little Riley.

Much Love,
Becca