Riley Turner

Great News!

noreply@blogger.com (beccaturner) — Tue, 24 Nov 2009 00:13:00 +0000

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

noreply@blogger.com (beccaturner) — Thu, 12 Nov 2009 19:45:00 +0000

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

noreply@blogger.com (beccaturner) — Sat, 07 Nov 2009 01:29:00 +0000

Thank you Aunt Whitney & Uncle Nic

noreply@blogger.com (beccaturner) — Mon, 26 Oct 2009 12:42:00 +0000

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!

noreply@blogger.com (beccaturner) — Thu, 22 Oct 2009 10:36:00 +0000

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

noreply@blogger.com (beccaturner) — Tue, 06 Oct 2009 10:21:00 +0000

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 :)

noreply@blogger.com (beccaturner) — Fri, 02 Oct 2009 13:29:00 +0000

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

noreply@blogger.com (beccaturner) — Sun, 27 Sep 2009 20:26:00 +0000

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

noreply@blogger.com (beccaturner) — Tue, 15 Sep 2009 04:52:00 +0000

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!

noreply@blogger.com (beccaturner) — Sun, 30 Aug 2009 10:43:00 +0000

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

noreply@blogger.com (beccaturner) — Fri, 28 Aug 2009 00:26:00 +0000

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

noreply@blogger.com (beccaturner) — Sun, 23 Aug 2009 10:04:00 +0000

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

noreply@blogger.com (beccaturner) — Wed, 12 Aug 2009 11:37:00 +0000

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

noreply@blogger.com (beccaturner) — Sun, 12 Jul 2009 10:57:00 +0000

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!

noreply@blogger.com (beccaturner) — Tue, 16 Jun 2009 20:44:00 +0000

Getting excited about being "normal"

noreply@blogger.com (beccaturner) — Sat, 13 Jun 2009 06:57:00 +0000

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!

noreply@blogger.com (beccaturner) — Sun, 24 May 2009 00:11:00 +0000

Update

noreply@blogger.com (beccaturner) — Sat, 23 May 2009 12:18:00 +0000

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

noreply@blogger.com (beccaturner) — Mon, 13 Apr 2009 02:43:00 +0000

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

noreply@blogger.com (beccaturner) — Mon, 30 Mar 2009 09:24:00 +0000

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

noreply@blogger.com (beccaturner) — Sat, 21 Feb 2009 14:55:00 +0000

An early birthday present!

noreply@blogger.com (beccaturner) — Thu, 19 Feb 2009 22:11:00 +0000

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

noreply@blogger.com (beccaturner) — Sun, 15 Feb 2009 12:04:00 +0000

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

noreply@blogger.com (beccaturner) — Sun, 18 Jan 2009 14:19:00 +0000

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

noreply@blogger.com (beccaturner) — Fri, 09 Jan 2009 11:31:00 +0000

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