Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Monday, October 28, 2013

6 Months in Heaven

Just checked the blog to see if people are still following regularly. The blog is not updated very often although Rachel and Jason still do posts frequently on Facebook. I thought I would share the most recent post Rachel did for the many of you still following this blog. Thank you all for your support. 

Taken from Miracle Ryker's facebook page (wrote by Rachel) - It's been 6 months today since the last time I looked into your beautiful, big blue eyes baby boy...I never thought we, as a family, could possibly make it this long without you, but I know you have helped us all every single step of the way. We miss you so much baby boy! I pray every night that you are enjoying every second in heaven & that you are being well taken care of....I'm sure it's so much more beautiful with your sweet spirit being part of it. I cannot wait till the day I get to see your sweet face again! I love you with all my heart! 

Tuesday, July 9, 2013

Miracle Ryker Shirts & Wristbands

Our New Miracle Ryker Shirts

We have come up with a new Tshirt design to show your Miracle Ryker support.

We have changed the color to a more Sapphire/Turquoise Blue & a White Logo rather than the black. But the biggest thing that I have decided to change is the back of the shirt. Now that my sweet Little Ryker is a Perfect Angel, I wanted to add more meaning to what we are wanting to do in years to come & this is where I came up the saying that we have added to the back of the shirts.

One day soon, we will be starting a Foundation in Ryker's name. With this Foundation we will help Families that have been put into the same situation as our Family, like living in the Hospital for an extended time or having a special needs baby or child. I cannot wait to do all the things that I want to do & make my sweet boy proud of what we accomplish in his name!

Shirts Available:

Basic Tee sizes- S, M, L, XL, 2XL, 3XL

Women's (more fitted) Tee sizes- XS, S, M, L, XL, 2XL, 3XL

Women's Tank sizes- XS, S, M, L, XL, 2XL, 3XL

Kids Tee sizes- 2, 4, 6, S, M, L, XL

Onsies- 3-18 months

The colors of shirts vary a little depending on Tshirt vs. Tank & Kid vs. Adult. But they are all a similar turquoise blue.


Adult Tees & Tanks- $20

Adult Tee & Tank sizes larger than XL- $25

Kids Tshirts- $15.00

How to Order:

To place an order for either Miracle Ryker Shirts or wristbands, send an email to myself (Rachel, Ryker's Mommy:) at- warner05@live.com with what you would like to order. From there we can set up for you to pay with with either Paypal, Check or Credit Card. 

Basic Tee

The Look & Wording on the back of all Miracle Ryker Shirts

Women's Fitted Tee

Women's Tank

Shipping within the United States is as follows-

$6.00 for up to 4 Tshirts

$13.00 for over 4 & up to 8 Tshirts

$17.00 for over 8 & up to 10 Tshirts

The amounts vary depending on the size of the shirts. Please email me if you have any questions at- warner05@live.com

Shipping to Canada is as follows-

$20.00 for up to 4 Tshirts

$41.00 for over 4 & up to 8 Tshirts

$54.00 for over 8 & up to 10 Tshirts 

The amounts vary depending on the size of the shirts. Please email me if you have any questions at- warner05@live.com

Shipping to most other Countries are as follows-

$23.00 for up to 4 Tshirts

$46.00 for over 4 & up to 8 Tshirts

$60.00 for over 8 & up to 10 Tshirts 

The amounts vary depending on the size of the shirts. Please email me if you have any questions at- warner05@live.com

Miracle Ryker Wristbands

Our wonderful Miracle Ryker Wristbands are available in size small, medium and large (small being for kids, medium being the standard size for all wristbands & large is about an inch larger than the standard) 

Cost is $2 each. Shipping is $2 for up to ten wristbands.

To order a wristband please send me an email at- warner05@live.com 

Monday, July 1, 2013


On July 27th we will be having a "Ride The Brainwave" Event in Draper, Utah for our Sweet Ryker & many other Children & Families in need. This a huge event that starts out with a 5K that morning & then goes all day with booths/vendors, bounce houses, characters for kids, poker tournament, & the band Royal Bliss to end the night . Please join our Miracle Ryker Team & come walk/run with us in my Sweet Baby Boy's Name! Last year during this event I was in Massachusetts & unable to attend, so I am so exited to be there this year & hopefully meet lots of "Ryker's Fans" We will have a Miracle Ryker Booth set up, so if your there, please stop by & say Hello!

For all of you who would like to sign up for Ryker's Team please go to the following link- http://childrenandtheearth.com/ Where you can sign up for the 5K that will be held that morning to walk/run in my Sweet Baby's Name with Myself & My Family. During the sign up process you can pick a team in the drop box, go to "Team Ryker" Where all proceeds will be going to purchasing Ryker's Headstone & Bench. Thank you & can't wait to see you all there!! :) ~ Rachel

Friday, May 17, 2013

Celebration of Life Video

A Post from Rachel -
Absolutely BEAUTIFUL video done by Doug Larson of my sweet baby boy's Celebration of Life. Doug was there with us at the very end when we had asked everyone else to go....the hardest part of that extremely hard day....the moment we had to laid our sweet angel baby to rest. At first I didn't think I would be able to watch it, with it all just being still too raw, but I am so glad I did. It is so beautiful! Such a wonderful tribute to have for my sweet baby boy! Thank you so much Doug!!

A post from the videographers page-
"I just finished editing this memorial film for Ryker Warner, a 14 month old boy who's funeral was almost two weeks ago. I was amazed at how many people around the world were following him on facebook hoping he would beat the odds with the disease he had. ABC4 even streamed the funeral live on their website. I was so glad I could be a part of his funeral and to see the love his family had for him They literally gave up everything in hopes of finding a cure for him. To lose a child would be so devastating and to be with the family as they laid the casket in the ground...... Serious time for reflection on what is the most important things in our lives. Here is the film, feel free to share it." - Doug Larson


Thursday, May 9, 2013


May 5th - Yesterday was such an incredibly hard & emotional day, beyond any possible words of expression....yet it was an absolutely incredible as well as spiritual experience! The outpouring of love & compassion that was given to our Family from SO MANY was unbelievable! Our baby's absolutely beautiful viewing, his entire service, down to every single word said from every last speaker, the incredible set-up that all turned out exactly how we wanted, the exit that was SO powerful, with a full police & motorcycle escort, the beautiful graveside service that went so perfectly, every last bit of all of it.... It was ALL phenomenal!! I want to say a huge Thank you to all the MANY people that had a part to do with such an life changing day for my Family! Thank you all for making such a hard day a little more bearable & for making my little Miracle baby's legacy that much more incredible! We love you all so much!!  ~ Rachel

May 2nd  - I have had to pull together my thoughts & pray the lord will help me put into words the feelings I am feeling so many times in the past, but absolutely nothing compared to this. My Beautiful Baby Boy's Obituary......By far the hardest thing I have ever had to write!

Wednesday, May 1, 2013

A post update from Rachel....

Today is the first day I have been able to bring myself to get onto my sweet Ryker's page & read through all the many comments of true love for my beautiful boy. I sit here completely astounded by the incredible amount of real & true, outpouring of love for my baby! It leaves me sobbing! I have always known how special our little Miracle Boy is & that he has touched & changed so many lives....but I had no idea how many lives & how deeply he impacted them. I cannot even fathom the idea of continuing on our lives without our perfect little baby boy! I keep waking up hoping & praying it was a terrible dream & I will look down to him snug in my arms, then I can kiss his sweet head & he can look at me once again with those big beautiful blue eyes that just make my soul dance! We miss him more than words could ever truly express! I don't know how this can ever get easier or less painful, but it brings me so much peace to know that he will never again feel any kind of pain! My heart is left shattered & broken, but his is finally whole & beautiful like we have always dreamed it should be! My sweet Addi continues to tell me- "You don't need to cry Mommy, he is still here with us, we just can't see him! Ryker is an angel now & I can feel him in heart!" My sweet little Addi's innocence & her & Braylee's extremely close connection that they still have with their baby brother, is what is going to help me to get through this extremely hard time & I am thanking God everyday that I still have them!

Thank you all for taking time to let us know how much you love our boy, it means more to us that you could ever understand! ~ Rachel 

Just watched as the flight team boarded my sweet boy onto the plane in the tiniest little box.....:( I did not think this would be the way we would take him to Utah for his very first time. I have been asked many times throughout the last year if we would ever move back to Utah & my response was always- "I really pray we don't" Because I knew this would be the only way we would be going back...if we lost him. We knew Ryker would forever need the care of the wonderful team at Boston Children's Hospital & wanted to stay in the exact place that he needed to be. So, as much as we are very excited to get back to our amazing & selfless big boys in Utah...this is absolutely gut wrenching!! Please pray for my family to survive this all. ~ Rachel 

Monday, April 29, 2013

Ryker's Celebration of Life location details......

Please join us in celebrating Ryker's life at the South Mountain Community Church (14216 Bangerter Pkwy Draper, UT 84020) Saturday May 4th at 11 AM. There will be a viewing at the same location Friday May 3rd from 6-9 PM.

We are looking for a Videographer that would be willing to donate time for Ryker's Celebration of Life on Saturday May 4th. We would also love to find someone that can do live streaming of the event for all of those unable to attend. Please contact Jen at 801-554-1170 with any suggestions. Thank you!

Friday, April 26, 2013

Please keep Ryker's amazing family in your prayers.

At exactly 9:40am EST our sweet little Ryker earned his Angel Wings & left this earth to be in the loving arms of our Heavenly Father. We don't know how we will possibly make it through the night tonight without our little Miracle, let alone a lifetime! We love you Ryker, with all our whole hearts & we'll miss you more than words could ever possibly describe!!! ~ Post from Ryker's parents on his facebook page. 

Wednesday, April 24, 2013

Photos outside with Ryker.

I cannot even express how amazing my brother Jason Warner, my sister Rachel Watson Warner, my nieces (Braylee & Addi) and nephews (Ryker, Trett Warner & Jadd Warner) each are. Although not easy at all this family has selflessly moved mountains for their little brother over the past year and although Trett and Jadd were not able to be in these photos they have the same attitudes and love felt through these photos. Love this family and truly blessed that they are part of mine! Thank you once again Myndi Bogdanovich!!!!

Photos :)

And now it's Addi's turn. They both LOVE to help out with their baby brother!! :)
 Braylee giving Ryker his morning nebulizer. Such a sweet sister :)
 Little Buddy trying out his first popsicle :) He LOVED IT!! & I'm sure the cold felt good on his new Molars!
 Sucking on his fingers (& lower lip) after his yummy Popsicle :)
After his little bath earlier today :) He LOVES the hair wash part (if only he could skip the rest of the bathing process:) I think he is screaming for me to rub his cute tiny feetsies (or so my girls would say it) in this pic :)
 Little Dude is OUTSIDE!!!!!! This is only his 3rd time EVER being outside :) & I think he likes it!!
Ryker with his AMAZING Grandma while he's wearing his "I Go Bananas For Grandma" jammies. HE LOVES HIS GRANDMA!!!

Tuesday, April 16, 2013

Fun Facts about Ryker & photos

I have had lots of requests for some fun facts about our little Miracle Ryker, so here we go-

As of today, with Ryker being exactly 13 months, 8 days old, he weighs in at a little under 6KG which is approximately 12lbs. He is wearing 3-6 month clothing, depending on what clothing it is, some items he fits better in 0-3 months. He has lost a lot of weight in the last two months with his last two caths (He used to be almost 15lbs) He is currently right about the size of the average 4 month old baby & LOVES to be cuddled just like them too! He has never worn shoes, so I'm not sure what size he would wear if he did. He has had 2 major haircuts, the first one being about 3 1/2 inches off & this last one about 2 inches (He definitely has no problems in the hair growing department:) His favorite toy is either his mobile or his Sophie Giraffe, especially when his siblings are squeezing it wildly in his face :) He loves staring into the soul of whoever is lucky enough to be holding him & if he is in the mood he will tell you all sorts of stories too & smile the entire time! On April 11th he broke his first tooth....his first tooth being his right upper molar & now this morning he broke his 2nd tooth, his right lower molar (Poor baby boy!) The biggest thing with Ryker is he LOVES company! He loves to be held, snuggled, talked to, bounced & loved to bits & pieces & no matter what he gets all of it ALL THE TIME!! There is always someone fighting over holding him :) ~ Rachel

Thursday, April 11, 2013

A Post from Rachel to Jason

I LOVE the Men in my life SO MUCH!!! Here is my wonderful Husband snuggling our little Miracle Boy last night. I have been so blessed with the Most Amazing Husband! I know there aren't many men out there that will do all the many things he does daily & continue to be so happy to do it! With living in the hospital for a year, dealing with all the many stresses that come with it, only seeing me maybe once a week for a few minutes in passing for almost that entire year, being a Mr. Mom to our girls (a wonderful one at that) doing their hair, laundry & cooking while I was with Ryker, sitting & sleeping bedside with Ryker through all the good & scary times, & now being home together at last & trading shifts with me for sleeping so Ryker can get his Meds & treatments every two hours, along with not just being here to help me, but actually being my partner in it all no matter what goes on. The list could go on & on! Most babies will choose Mommy over Daddy, but not Ryker. He loves us both just the same & no matter how hard his day is going Daddy can hold him just as good as Mommy can, because he truly KNOWS his Daddy & loves him so much!! Thank you Baby for being the most incredible Dad our 5 babies could have ever asked for! We are all so lucky to have you!!! ~ Rachel

Sunday, April 7, 2013


Ryker is still not completely himself, but doing better today! Thank you all for your positive thoughts & prayers! I know they make such a big difference! There is so much that goes into Ryker's complexity, so I wont go into it all, but Ryker was in a lot of pain, where he needed many rescue doses of a few medications to keep him calm enough to not cause more very serious problems for himself. We are still at home & just letting him rest & recover today. I just have to say (even though I know I say it all the time) My baby boy absolutely AMAZES me constantly!! I cannot tell you how many times I have been beyond terrified & have feared that I would never see his Beautiful eyes again.....yet he is still here & is just the sweetest little thing in the whole world!! He fights so hard every single day to be here with us & he does it all with a smile on his face & the sweetest little spirit about him! I am so beyond blessed to be his Mommy!! ~ Rachel

Saturday, April 6, 2013

Please keep Ryker and his family in your prayers.

Rachel posted the following today.....The last 48 hours have been very hard on our sweet little Ryker! Please keep him close to your heart & in your prayers! ♥
Please keep their entire family in your thoughts and prayers. Thank you all for your continued love and support.

Wednesday, April 3, 2013


4/3/13 I love having my happy boy back ~ Rachel

4/2/13 After a VERY rough couple of nights, Ryker is a Happy, Smiley boy again this morning!! He was having a lot of horrible belly pain, that kept him up for almost a full 72 hours straight :( & now, thank goodness, this sweet baby boy is sleeping soundly & snug in my arms. He also is getting MOLARS!?!?? He hasn't even broke his first tooth yet & now he is going to get molars for his first teeth :( Poor Baby! But Ryker likes doing things that are labeled as "RARE" so we will just go with it & hopefully they will break thru soon! For all of you that saw him in his adorable Easter suit, there are lots more pics to come! It was so wonderful having him HOME where he belongs, for Easter!! :) ~ Rachel

3/30/13 Ryker has had a really good week! We've gotten all settled in with being home again & LOVING every single second of it! He is just starting to seem a little more like my happy, bright eyed Ryker, still not smiling constantly like he usually does, but I know he will get back there soon enough! Daddy was finally able to talk me into cutting Ryker's hair last night for the second time (first time was in October) & I am SO happy I did! He looks ADORABLE!! I will post pics soon! Other than that, we have been loving having my Brother Joe & his wife Carol in town & having LOTS of much needed Family time! :)~ Rachel

BEFORE 2nd Hair Cut

AFTER his second haircut!!! Such a handsome Big Boy! :)

3/26/13 - Shannon and Makay visit

Wednesday, March 27, 2013

Beautiful boy!

3/27/13 My bright eyed boy watching some cartoons with his big sister Addi ~ Rachel

Sunday, March 24, 2013

At Home!

3/23/13 Our first 24 hours of being home was a little rough on Ryker, mainly because he was still coming off of the many Meds he needed to keep him sedated enough to stay intubated. But now, thank goodness, he has had a much better day!! He is getting past the withdrawals & recovering more & more each day from his last Cath. We are SO grateful to have him home & loving every single second we have with him! ~ Rachel
My sweet Braylee Ann getting her baby brother to sleep. She is seriously thee most Amazing & comforting sister! We are so blessed to have her in our Family!!

Friday, March 22, 2013

Extubate and Home

Ryker once again showed everyone just how amazing he is and was able to be extubated on Tuesday. The photo below is after extubation. 

Ryker wasted no time getting home after extubation and was on his way out the doors Thursday. Please keep our amazing and inspirational miracle in your prayers. 

Saturday, March 16, 2013


Today has been a little rough for sweet Ryker. We have hoped for & worked towards extubation all day, but sadly his fluid balance isn't quite what we would like it to be & his lungs are still too wet for a safe extubation. This time around its a little more scary to extubate. In the past we would 
extubate, do LOTS of chest PT (a form of Physical therapy for his lungs to help break up fluid) & hope & pray he could do it & if by chance he couldn't we would just reintubate. But this time around reintubating is not a
simple task! Intubating him in the first place was a terrifying moment that we were afraid we would loose him & I am not willing to take that risk again. So as of now we are upping his sedation to keep him comfortable & upping his diuretics in hopes of drying out his lungs enough to get him extubated by morning. Please keep my sweet boy in your thoughts & prayers! ~ Rachel

Such a beautiful boy! 

Thursday, March 14, 2013


Ryker ended up having a echo and a cath to balloon his pulmonary veins today. He handled it all like the amazing little boy he is and we are praying for a quick recovery. The photo below was taken just minutes before he went in for the cath.

Tuesday, March 12, 2013

Admitted back to CICU

Our sweet Ryker went in for a check up today and ended up getting admitted. I do not have details but will let you know when I do. Please keep him and his family in your prayers. Thank you ~ Tisha

Rykers very first real car ride (not by Ambulance) I think he likes the view! :)

Birthday Boy - Photos

 Icing Smiles is the amazing company that made and donated Ryker's amazing cake!