Please Take Time to Read this Post

     Dear Friends and Family,

               It has been a while since I have posted anything and we have had some exciting news. We were recently ask to be the Survivor Family to be honored at Northwest Arkansas Heart Ball this year. All the money raised goes to the American Heart Association. It brings tears to my eyes to think we get the opportunity to help give back to an Awesome Community and to such an Amazing Organization. We have always been supporters of the American Heart Association and all those years never did it enter my mind that we would actually be the ones that would be on the other end benefiting from the medical equipment that this Association helps facilitate in Doctor's offices and Hospitals. We were ask as a family because it was not just Ryder's journey, this was a family journey and we were all one another's rock during the scariest time of our lives. Ryder's twin brother was greatly affected by it and is Ryder Jack's Biggest Fan. Not a day goes by that I do not look at Ryder's scar and smile and it brings tears because that scar is etched in all four of us not just Ryder.
       I understand that there are tons of organizations that raise money and are doing amazing things but for a moment I want you to think of who in your life has been affected by Heart Disease? Stroke? Just think of those individuals that you adore so much...The money raised is helping people just like them. As I put in the following story that hopefully you will take time to read below, it was because of money raised by individuals like you that the blood pressure machine was in our Doctor's office which helped save Ryder's life. http://nwaheartball.ahaevents.org/roarkboys

Prayer Warriors Needed for the Shofner Family

Dear Prayer Warriors....I found out in the last several hours that another child in our community has been diagnosed with the same condition as Ryder. His name is Jett and he is 5 years old. He was diagnosed yesterday and it was found once again by Dr. Averitt by doing a routine blood pressure check up. Thanks be to God this has been caught...however this family has a difficult road ahead of them and needs all the prayers they can get, however they have had quite a journey in their lives already. Would you take the time to read this post from the Aunt of Jett. Lets pray together for Jett and his precious family. We prayed this morning for him and Ryder said, "Mom I can go with him to Children's Hospital and hold his hand." heart melted.... I am very thankful our paths have crossed so this family knows they are not alone. Would you pray Jeremiah 30:16 with me for this precious boy.

Blessings and Love,

Casey

Friday, October 10, 2014

Day 10: Painful Post

Click here to see all the posts in this 31 day series

Day 10

I’m placing this in the top two hardest posts I've ever written. Never mind…this is the hardest one ever. I’ve only had six-ish hours to process the news we received this afternoon. Typically when I get hard news I process if for several days or weeks with God and by then I have a much better planned-out post to publish. 

I don’t have that luxury tonight. I knew this 31 day writing thing was an act of obedience and it has already been a blessing, but that means I write even when it’s hard.

I prayed before writing this tonight that it will help spread the word and save lives. 

I love this sweet family so much it hurts. Please pray continually.

My precious sister, Becky, took in her 5 year old son last week for a routine appointment at Best Start Pediatric Clinic. Dr. Averitt could not find a pulse in his legs and immediately scheduled his appointment he had today with Arkansas Children’s Hospital branch in the nearby city of Lowell.

Those of you who have followed our story for several years now know that the first time Becky was pregnant, and I was pregnant with my second child, my husband passed away in a car accident. Becky and her husband Travis were so crucial to my process of healing in the tragedy. The second time Becky was pregnant her husband had heart issues and underwent surgery. She is currently pregnant for the third time, due in December, and her son is facing surgery around that time for a narrowed aorta, “coarctation of the aorta." From my limited understanding, it is not standard procedure for young children to have their blood pressure checked, but this simple act saves lives.

Northwest Arkansas is a small world, as most close-knit communities are. Almost immediately we heard from our friend of a local family that just went through the exact same condition in her son. She shares their family’s story on her blog as well.  (Note: Remember a couple of days ago I mentioned being wise about what you read. If reading details about their situation would cause extra anxiety then maybe save reading their story for a later time. I include it in this post so more people can become aware of the necessity of blood pressure checks in children and to share this wonderful, local, success story of their sweet son.)

Those are the facts.

What I am feeling, however, has swung the pendulum from devastation to peace and everywhere in between. I know from experience you just have to take it minute to minute for a while, and then God’s peace prevails and you will be able to take it hour by hour. But only one day at a time for sure.

This is where we put what we have learned to work for us. We are surrounded by a community of prayer warriors who've battled shoulder to shoulder with us. We will rely on God for strength and peace that surpasses all understanding that comes from continual prayers.

We have learned over the years that it's okay to have all kinds of feelings, God created us to have feelings. I have identified with David in Psalms over and over again, but it's good to be reminded of the Truth and God's promises to provide so we do not let those hard feelings trap us into a pit. God can definitely handle all of our feelings no matter how ugly.  PTSD is a real condition and it helps tremendously to have coping strategies in place BEFORE a trial hits. I know that for me I tend to get mad at God and question why He created a world like this. Some days I can be at peace with the answer that “his ways are not our ways” and then other times I don’t find peace at all with that but I stumble along until someone can help remind me how He has ALWAYS provided in the past.

I know I am making imperfect progress because I can be mad about that answer-that's-not-really-an-answer and still remember His promises are true. A few years ago, I could not do that. I couldn’t remember or even tell you what those promises were. 

Since this summer I have been relying and reciting His promises so often that they come to mind much more quickly than ever before. I’ve told you in this 31 day series that I do not believe in coincidences anymore and I have tears streaming as I just realized what I had originally planned on posting today is just below this paragraph. I had opened this saved document from yesterday and started typing above the words already there, not even reading what it was I had written yesterday, just noticing it being bumped down the page as I typed…until I finished typing the last paragraph above. Y’all. Read those verses below with new, fresh eyes. I can barely stand it. Do you see how He loves us, so? Becky, of all the verses in the whole bible the one from Romans, penned thousands of years ago, was typed out by God for you yesterday on this page because God knew then what would happen today. And even though I still find it so freaking frustrating that He knew this pain was coming, He is showing His love and compassion for us, For Such a Time as This.

 “Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.” Romans 8:26-28 msg

"Your word is a lamp to my feet and a light to my path." Psalm 119:105

God is alive and real today. What does that mean for you and your life? 

We love you, too, God.

Amen.

Lots of New Updates...and Updates on Kiss Kovers

 Wow....Been a long time since I have sat down to write on the blog but I have to say I have sincerely missed it. It is such great therapy. There were so many times while being in the hospital with Ryder that I could not speak but I could type. God just put the words through my hands. First and Foremost I want to let you all know that Ryder is doing really well. Our last visit with the doctor was good. His ECHO was not great but his blood pressures were good and he looked good.  He still takes medicine everyday to control his blood pressure and so far so good. We are just thankful this was all caught when it was so know we know when to go to the doctor and signs to look for.
 He is loving Soccer and so is Rowe. They are also enjoying their Pre-K class at First School this year. The boys turn 5 years old on September 29th and for their birthday they are collecting blankets for the children and families at Arkansas Children's Hospital. Ryder has another appointment early October so we will be delivering then. Many of you have asked when we were taking another load, so letting you all know. All of the blankets that everyone helped with in March and April are all gone. It is a huge need there so if you would like to help it would be so greatly appreciated.
 You all may remember about the sweet baby girl I wrote about that touched my heart while there and I found out yesterday that she went to be with Jesus. Oh that precious face, beautiful head of hair and always smiling! The blankets help a baby like that feel loved and feel peace and warmth. It broke my heart never seeing family come to see her but the nurses at Children's were her family and I cannot think of a better place for her to have felt so much love in her short life...and now she is not sick and dancing with the Angels.
The blankets also help the families that are there month after month have their own since of something that feels personal to them especially when they have come with just the clothes on their back and nothing to wear. Thanks to all that have followed us on our journey and I promise to write more on the blog and will definitely be updating you all after Ryder's next appointment. For now if you all would pray that he gets another good check up and that he continues to feel great.  Your prayers are beautiful blessings to us. Also you can email me at caseycroark@aol.com if you would like to donate a blanket. I leave you with one of my favorite verses...
                                         Do not be anxious about anything, but in every situation, by prayer
                                    and petition, with thanksgiving, present your requests to God. And the
                                     peace of God, which transcends all understanding, will guard your hearts
                                    and your minds in Christ Jesus.   - Philippians 4:6-7

                                                                                                                   Blessings,
                                                                                                                            Casey
                                                    

Ryder's First Day Back To School Video

                 3 weeks ago yesterday Ryder Jack had Heart Surgery at ACH. This is a video his teacher sent me yesterday of him breaking it down at school! Oh how this made my year to see this and to me it is just a Testimony to God and all His Glory in our journey. God placed brilliant Surgeons, Doctors and Nurses at ACH and we Thank God for them everyday! Thanks for all your Concern and Prayers for our boy. I will post pics and more details about our visit from our Appt. later, but for now enjoy this video and Happy Thursday!

Kiss Kover Update and the Kiss Cover Story

I am just so so Thankful for all of the donations of blankets for Kiss Kovers! You all have been so generous and I just can't thank you enough. I am still taking blankets and I will be happy to pick up from you as well so just let me know if you do not have time to drop off and I will come pick up.  I have had several people ask me what is the meaning of Kiss Kovers and what are they for? Before Ryder went to ACH, My Mom and the boys made the fleece tie blankets so that they would each have one and Mom told Ryder that everyone could kiss it before he went to surgery and it would bring him comfort, so both boys have called them Kiss Kovers since that time. During our stay in the hospital I noticed a HUGE need for blankets for parents and grandparents that stay for long periods of time in the hospital. The Hospital is great about passing out so many necessities and they do give you a blanket but it is a lightweight blanket and a comfy cuddly blanket is such a comfort. It is really cold in the hospital too and especially in the patient rooms so I just thought how nice a comfy blanket for all the sweet kiddos there as well....something that makes them think of something you would cuddle up on the sofa on at home. It is kind of like how some of us like to carry a pillow from our house when we travel because we sleep better and it brings comfort when in a strange place.... This is my point. So many of the parents come with nothing because they rode in the ambulance with their child or on the Angel Flight. Not only will these blankets be comfy but they also have one of our favorite verses on them to bring families comfort.
   One blanket that I can't wait to deliver is to a gorgeous baby that roomed next door to Ryder. I will need to keep her nameless but she is 5 months old and the most beautiful baby you have ever seen. Big Gorgeous Eyes and Hair that you can't imagine for 5 months old. I would just sit at her door at night and stare at her after Ry would fall asleep. I miss her, I can't wait to peek in on her next week. During our first few days I realized I never saw anyone in the room with her... She had lots of loving nurses but no family... I thought well surely as the weekend approaches family will roll in...I finally ask one of the nurses and no one had been to see her in 5 months. She had a surgery while we were there and no one was there for that. She has a trach that the vent is connected to and it appears she had Open Heart when she was itty bitty newborn. I certainly am not to judge any family, I have no idea what her family's situation is and I know that there are single parents out there that have to work and take care of other children. I just wish someone could have been there to kiss her forehead before her surgery and rub on her as she woke up.  I wake up in the middle of the night still thinking about her. When I would wake up at the hospital thinking about her I would go peek in and most of the time she was staring at the walls and smiling. At night sometimes in the hallway other parents and I would be crowded at the door wanting to get a peek and a smile from her. We would all just oooh and awe! She already has a big purpose- she is warming hearts that she does not even know. I know she is going to do something great in this world...like maybe be a heart doctor or a fabulous nurse that has shown her the most love in the beginning stages of her life..I just know she has a purpose and a story to tell. Thanks be to God for his indescribable gift  2 Corinthians 9:15. You are one Precious Gift Baby Girl and Jesus Loves You.  One thing is for sure...I can't get her Kiss Kover to her Fast Enough!
  Thanks again for your continued support and prayers!
Blessings,
Casey

Pray For Healing

                Good Morning. First and Foremost I want to thank you for your continued prayers for Ryder. He is doing great each day. It is amazing and it is because of your prayers. Both boys are definitely getting stir crazy in the house but we just can't be in public places and have Ryder exposed to sickness until we see our Doc at ACH. We can't go to Church and that is getting to me, I just love worship and I will be anxious to get back. I have several friends that need lots of prayers and I ask you to take time out of your day today and in the coming weeks to sit down and pray for these precious people that are going through a tough time right now and need Complete Healing that only God can give them. The link at the end of this blog is a song some of my friends, Ben and Noelle from ACH wrote and sang to us while there. I have downloaded it on ITunes and I listen to it several times a day and pray specifically for these people while I listen to it. I ask you to please do the same. Here are the people I need you all to pray for:

Meet Trevor Trumbo, A son of some friends of ours from Fayetteville that recently moved to Memphis. This little punkin was diagnosed with brain cancer last July. He underwent neurosurgery and two months of radiation. He was released in October and was doing so well and this last week he was admitted to the hospital and Doctors found another large tumor in his frontal lobe and smaller ones on the brain. He underwent a long brain surgery this past week. Now he will began Chemo for the Ependymona, which does not really have a cure and most things they are trying with the Chemo are still in trial. Please take time to pray for Trevor's Complete Healing. You may also get updates on Trevor's Caring Bridge Page. Keep his sweet parents, Lisa and Matt and his brothers Trenton and Hayes.

Meet my Beautiful Friend Katie B:

Katie is one of my beautiful friends from Texarkana but she is also a Chi O sister of mine. Katie is one of those people you just want to cling to because she has the most positive spirit and such an amazing sense of humor! A week ago Katie was admitted to the hospital with severe Kidney pain. Katie has already had two kidney transplants and is now in renal failure. She is on dialysis and now on a wait list for Kidney Transplant number 3. Katie is so thankful that the hospital board approved her for a 3rd transplant... this is a Huge Praise!!! Obviously a living donor would be best and the family is in prayer for that miracle to manifest itself if it is meant to be. Pray for Katie's complete healing! Pray for all of Katie's family as well.

 

Meet Truman Gist, Age 5

This past Monday afternoon, Truman's pediatrician called with news no physician wants to give and no parent wants to hear. Truman's lab work revealed an extraordinarily high white blood count and premature red blood cells, he suspected cancer. Tuesday morning Truman's parents took him to the oncologist expecting a round of tests and a "good" diagnosis. Instead, Truman was diagnosed with Acute Myeloid Leukemia. He was immediately admitted to the hospital and underwent his first round of chemotherapy. They also found cancer cells in his spinal fluid. They were told to expect to be in the hospital at least 6 weeks at a minimum possibly up to 6 months ( without ever stepping a toe outside). All of this being said it is a horrible diagnosis but Truman and his family Love the Lord and even a few days ago Truman woke up with sparkling eyes singing, "Bless the Lord oh my Soul"! When We Cry to the Lord, he hears us... He is our Ultimate Healer and Performs Miracles Every Single Day. I beg you all to pray for Truman and light a candle each day in his honor and Pray to God to Heal him! This little boy has lots left to do in this world! Truman has a caring bridge as well you may follow.

 

Meet My Miracle Girl Brandi

In late December Brandi was admitted to the hospital with H1N1 and Pnemonia, she has been at ACH where she was on the ECHMO Machine and this girl has fought so hard! She is making more and more progress everyday and was recently moved to the rehabilitation phase and is expected to be back home soon. She still has some milestones to complete before getting home but with your prayers I know this will happen very soon for her. Her baby boy Tag will be turning One this summer and we all know the kind of party she will be wanting to have for this punkin! Brandi is not only a dear friend of mine but also my neighbor.

Thank you for taking time to read my prayer requests and I ask you to listen to this link of this beautiful song Healing!

Blessings,

 Casey

https://itunes.apple.com/us/album/healing/id465221629?i=465221633

Kiss Kovers

So there are several things I want to do for ACH but one need that I noticed during our stay there is BLANKETS!!! Like Cozy, Warm Blankets. Of course, they give you pillows and a lightweight blanket but they keep it so cool in the rooms and in the family rooms where families sleep and you just want something warm to cuddle up with. The patients need them as well. Anything that brings you a comfort of home is necessary. Some families are at ACH for Months, I met many of them. So this week Mom and I have been working on the fleece type blankets and bundling them up with a Kiss Kover Sticker...Kiss Kovers is what my boys call these type of blankets so that is what we went with. So I am planning on taking several of these up to the CVICU on the 18th when we go for Ryder's check up. Many of you have ask what can you do for us? Bring dinners, Help with Rowe, etc...If you would like to do something in Ryder's honor and something that would mean so much to us then maybe you could purchase an inexpensive fleece throw, they have them everywhere or if you would like to go and get the fleece material all you need to purchase is 3 yards and you can bring to me and between me, my Mom and Yaya we can make them. There are so many families that ride in the ambulance with their child and leave everything at home and may not have someone to bring them anything from home, so this is a warm touch that gives them comfort during a difficult time.
Here are pictures of what we have done with Ryder's sticker on it. Feel free to message me or call me or email me at caseycroark@aol.com if you have any questions or would like to help. Seriously though Walmart, Target and TJ Maxx have great throws that would work perfectly.

The sticker has a comforting verse for families as well, it is a verse we hold on tight to and feel very comforted by.

 

Blessings,

        Casey

I Will Praise You, O Lord, With All My Heart...

                                    I Will Praise You, O Lord, With All My Heart...Psalm 9:1
   Today we went to our first Checkup since Ryder's surgery and saw our Awesome Ped, Dr. Susan Averitt. Ryder's blood pressure was 120/75 and this is within the normal range for him. So we are so thankful. Ryder has lost 5 lbs so we are hoping his appetite increases more. He has always been tiny but Dr. Averitt wants him to gain some weight. She said if he has not gained in a month we may need to try Pediasure. Today was Dr. Seuss Day at Dr. Averitt's Clinic so this is his new shirt he is sporting! His scar looked great and I had her check where Ry's chest tube was and she said all looked really well and was healing excellent. We are just so thankful. Ryder does still have a murmur, we are hoping by the checkup on the 18th at ACH that will fade more and not be an issue. But as of now I just feel so blessed and so thankful that God has heart every prayer and held our hand through each step. It is a beautiful thing to feel that comfort of someone Greater than you give you such a peace.

                                                     Picture of Ryder Getting His Blood Pressure checked

 

Many of you have ask me so How is Ryder? Honestly it is quite amazing.... He is literally Running everywhere and Jumping, Occasionally he will sit down and say my stitches hurt or my heart surgery hurts. Especially when he and Rowe are fighting...he will Yell, ROWE...I just had Heart SUGERY!!!! AND he says it just like that! Here is a pic of him earlier doing Jumping Jacks on the coffee table( No I am not ok with them jumping on furniture but this went on while I was making them something to eat!

I have recently connected with several other Moms that their children are about to have the same surgery that Ry just had... I hope this gives you all Hope and a Smile!!!

And Just to be Real with all of you the next pic is basically how my house has looked since we have been home, but I would not trade it, just so glad we are home and our boys are back together

Yesterday one of our friends dropped off this Frozen Poster they made for Ryder and he carries it Everywhere!!!

We have been so blessed to have so many friends drop off dinners for us and it has been a huge help! Just can't thank you all enough for that!
                                                                                                           Blessings,
                                                                                                                  Casey

WE ARE HOME!

 

We are Home! Yesterday we were discharged around 12:30pm. It was a bittersweet leave. We were thankful Ry was healthy enough to go home, but you are a little afraid to leave all the nurses and doctors that know exactly what is going on and what to do. It was also tough to say goodbye to the other children and families. I was as emotional as I was the day the boys were born. At one point my Mom said, Case you are just a basket case! That is the only way to describe it. Tears flowing because God answered so many prayers for us during our stay there. Tears flowing hoping and praying that the other families will get to go home soon as well. Dr. Zarkaria, our Cardiologist dismissed us and said that she was shocked at how well Ryder had handled the surgery and that he must have a huge pain tolerance. I know that this is because of all of you praying like crazy for my boy!!! For the next two weeks Ryder really has to lay low( yeah right) but these are the orders and he can't be exposed to illness since his immune system is so weak from surgery. He will be at home and can't go to school until our appointment at ACH on March 18th and then we will know when he will have the green light to get out and about. There is hope that Ryder will hardly have any restrictions once he is fully recovered but we will have to wait and see. They also say after monitoring him within the next few months they will know if they will need to go back in and do a balloon around his heart but we are very hopeful this will not need to be done. I can't express how thankful we are to Dr. Michi and his team, all of the nurses, etc. at ACH. What a wonderful place. Here are some pics from Ryder's stay.

This is Ryder's Nurse Heather that we had the blessing of having for 2 days in a row. She was such a bright light to us and she has twin brothers so she knows all about twin boys! I will never forget the day Ry was in so much pain and she was helping him get out of bed and he fell into her chest and was crying and she stopped and put her arms around him and the hug and love that showed on her face was priceless, I of course started bawling. The next minute he was barking orders or all of us to stand in a single file line so he could sing Frozen to us!!! I am being totally serious! Needless to say we adore Heather and think she Rocks!

This is Ryder's Cardiologist, Dr. Zarkaria. She has the coolest accent and always walks around with a smile and loves children. She always was encouraging and could explain things to us so well. We are so grateful to her and glad she is in our lives.

Saturday I did not leave Ryder's side and about 6:30 that evening Roman came in, he had been playing with Rowe and he said Case you need to take Rowe to dinner and spend some time he is really needy of you. So we went and had a dinner date and then did Facetime with Ry and Daddy and made silly Faces. We talked for like 30 min. Praise God for technology. The boys were really missing one another. This was a night I will never forget.

Full Day of Visitors this Past Saturday. Some very Important Visitors. Ry was on Cloud Nine! The Great Grands came to see us. They are such a blessing to us. Uncle Marty and Aunt Nee Nee and Uncle Rods and Aunt Neecie. Lots of Fun times! Thanks so much to all of you for coming to see us. Meant so much to us. We love you all!

So Thankful to Pastor Britt for coming and praying over Ryder before his surgery and for coming to visit us on Saturday. Britt is very special to us as he was a former Pastor of ours and he Baptized our boys and he is just a special person in our lives. We were thankful for his visits and prayers.

 

 

I want to end this by thanking our dear friends Diane and Curt Green for allowing our parents and Rowe to stay at their beautiful home in Little Rock while we were in the hospital. It was so nice to go there and it was a comfort like home and for everyone to have a warm nice place to lay their head down. Diane and Curt are my Best Friend, Whitney's parents. They have been in my life for a very long time and I consider them like second parents. Thanks for being such a blessing to us. You know how much we love you all! This is all for now. I will update more in the morning. Blessings to you all

 

Casey

Let me start by saying that we are blessed beyond measure by your prayers for Ryder. He has done so great and his ECHO looked great today. Praise Praise Praise!!! The last blood pressure they took 119/58. Pray this maintains through the night and we will go home tomorrow. All day I have had that lump in my throat because I am already knowing how hard it will to leave tomorrow. The staff, the Doctors, the Nurses, and of course the other Families that become your family and you are all here together sharing the same connection…to save your child’s life. Sleeping in the family room and you wake up to a Mother’s cry  in the middle of the night because they are doing emergency surgery on their baby, Parents that have been here for months waiting on their child a heart and you ask each day, “How is Today?” How is your baby doing? Did you get good news today?… and we walk back to our rooms not really sure of what time it is or what day it is but we all have one another. The warm smile and laughs from the nurses give you HOPE each day. Nothing would have ever prepared Roman and I for the day we walked back to see Ry after surgery, but a pat on the back and a hopeful eye from the nurse in your room gives you the Peace to Stay Strong and the Love and Peace you get from God. I have always been a huge believer of prayer and having a strong Group of Prayer Warriors. When I meet or hear of someone that needs prayer I put in my notes on my phone and then add to my prayer book at home and I keep up with specifics and Glorify Gods Name for the Praises He gives those and keep praying for unanswered prayers. I just thought I had a huge prayer list until I came to ACH. February 26, 2014 was a day I will never forget. It was the day of my son’s heart surgery but also a day that God opened my eyes to REAL STUFF!

   My first thought after being here for an hour was that I will never complain again of the little things, like that you only have 20 minutes to spare between leaving work and picking up your kids so how in the world will you have time to go to the grocery? Or those Snow Days that keep coming and my kids are bouncing off the walls and so am I and I might want to pull my hair out, or when you have to wait for 30 minutes on hold with someone from AT&T or waiting in a doctor’s office for an exam. I hope to be able to get permission from some of the other families to share their story on here soon. I have so much I want to right but I want to protect the families and their privacy. All I can say is we have been here for 7 days and I could write a book. My heart is FOREVER changed. My Faith has always been strong, but it just got stronger!

   Tonight around 8pm we lost a dear friend down the hall. He is a soaring Angel now. He just brought Ryder some books that he signed yesterday and was happy and smiling and just like,  that now he is gone. Life is so Fragile….so so Fragile. To see a Parent lose their child…well there are no words. I just kept begging… DEAR LORD HOLD HER SO TIGHT AND GIVE HER PEACE…Needless to say, it has been a rough night for all of us on the 4th floor. I want to leave you with this song that some of our Friends here, Ben and Noelle wrote. It is called Healing… so appropriate and beautiful. God Bless and Keep Praying.

                                                                                                           Blessings,

                                                                                                                   Casey

Prayers Needed For A Lower Blood Pressure.

 This is a pic with one of our Awesome nurses Shantay! She allowed us to wheel Ry down to see Rowe for the first time!

 Prayers Needed For A Lower Blood Pressure.
They want his blood pressure to stay at 120/50 - it has been high in the last 12 hours and is spiking even on medicine, so they are going to increase his dose and PLEASE Pray with us that this does the trick, if not they will have to switch medicines- I just do not want him having to be switched around on so many meds. Also this is going to keep us in hospital longer if blood pressure does not maintain. Please know Because of you all and your prayers he has sailed through all of this like a champ- He Looks Great and Everyone is floored at how well he is doing but we need these numbers to get better. We just all need to specifics to inform God of what to lay his hand on and heal. Thank you all Sooooo much for the prayers- we feel them and so does Ry! Blessings to you all!
Casey

Update--titrated  meds and BP is now 114/64
Keep Praying! God is hearing your prayers! Keep them going -will update again soon!

There are no words to express how joyful an Full my Heart is! I have been crying tears of joy and thankfulness all day and just telling God all day, "Father you knew it the entire time and you saved him and are showing us( Mom and Dad) that our little boy was Greater than we could have ever imagined- Brave and Powerful and Inspirational like No other! Yes there are much worse illnesses and God Knows We know how blessed we are and that it could be so much
worse but this baby has had a huge surgery and been poked on and had more tubes and drains than I have ever seen on someone and soared through it like a
SuperHero! Yes I know we know kids are resilient but this has been mind boggling- especially after our day yesterday.
   All day I have felt the same way I felt the day I became a Mommy to Rowe and Ryder.... I never knew my heart could love something so much and was just in Awe of the Miracles God Blessed Roman and I with. I have felt this same feeling of love and fullness today! The Doctors and Nurses here- when they leave after their 12 hour shift I h
ug them and cry as if my boys were leaving to go to College- this is the love you feel for these Angels!!! True Heavenly Angels that God Places in this Hospital.
  Arkansas Children's Hospital is kind of like walking into the Holy Land- it is wrapped with Gods Arms and all of his people and it is The Most Beautiful Experience!!! I have so much more to write but will more tomorrow- Thank you all for your prayers ande ePlease continue to Pray- God hears th
em and We feel them- God Bless All of You and always Remember Rejoice and Give Praise and Always have Hope!
         Blessings,
                 Casey

Picture Update

This was right before surgery

this was on Thursday day after surgery! after he had gotten some good pain meds..

Boys with their Cousin Britt Britt night before Ry's surgery!


Getting hugs right before his Happy Juice!

aEating his favorite strawberries with sugar and getting some pre-surgery love from Aunt Mr, Aunt NeeNee and Aunt White Whit!!!

Rowe telling brother everything will be alright!

rowe getting to play on the playground at hospital!

With Yaya and Sweet papa after some happy juice--full of smiles!

my little buddies meds but weaning off more each day!

Successful surgery!

  


We are Praising God for a very successful surgery! Things went so very well and we are so thankful and just know that God had his hand in every nurse and surgeons hand today!!! I woke up this morning with such a peace so I knew that was God letting me know all would be well! I have literally trusted God from day one of his diagnosis and known
that he would walk us through this. He surely has. Shortly after surgery Roman and I got to go see Ryder and as other Heart moms had told me- it was a ha
rd sight to see at first and I know now what they are talking about. He has lots of tubes and monitors on him but his coloring looks amazing and his numbers are looking great! I have the frozen soundtrack playing on my phone by his ear and he is sleeping peacefully. God has answered all of our prayers today but please prayer warriors I ask you to not stop praying. We need to pray his blood pressure maintains where it needs to be and does not get too high
or too low! They say his pain will be more intense tomorrow and Friday so pray for him to not be in pain.
The amount of people that have visited, called, texted, FB messaged- you will NEVER know how much it means to our entire family! We feel so much love and prayers and what a comfort!!!! I have heard from people that I do not even know praying for Ryder- what a beautiful thing! In the hectic, crazy world it is so comforting to know how many people stand on God's Promise and Trust in Him and Glorify His Name!!!! I have had doctors and nurses say, thank you for your prayers during surgery. One Doctor said, we just turn it all over to God- how beautiful!!!! So thankful for every sweet path we have come across. More to come later- going to sit with my baby
 boy!

Lots of Silly Laughs before Surgery and he has not even had the silly juice yet! So proud of our Tough Brave Boy! He was teary before Pastor Britt Skarda came back to pray over him and now all smiles! Britt is so special to our family and we are so thankful for the beautiful prayer he gave us this morning!

Testing Day at ACH

Meet Ryder's New Patient Doll that the Child Life Specialist gave him today. He named his doll Eneal (FYI ... this is Ry's Imaginary Friends name) I knew the minute I ask him for some reason what his Patients name was that is would be Eneal! I have a slight suspicion that Eneal will be going back to surgery with him in the morning.

     This morning we arrived at ACH at 8:30 for testing and to meet the Cardiologist and Surgeon. Ryder's anxiety really kicked in on the way to the hospital and he was crying so hard for his bubba. He wanted Rowe there. When we got there we ask if Rowe could come and sit with him during test and they said Absolutely!!! Yaya and Sweet Papa brought Rowe up to be with Ry and it did settle his nerves quite a bit. The worst part for him was drawing the blood.... but I tell you this little guy is brave. He looked at all the pictures of the tubes that he will have tomorrow after surgery and it did not phase him one bit.
     When the Cardiologist came in to check on Ryder she said he has no pulse in his legs, His Coarctation is so severe and they said that is the explanation for his severe leg cramping at night. The amazing thing is that Ryder has Good Collaterals, Blood Vessels that have grown to spread blood to his extremities. I believe that is a MIRACLE from God to make sure that our baby survived. The Cardiologist said there is still a chance Ryder will have high blood pressure for several years but hopefully after that maybe not. We met with Dr. Michi, the surgeon,  and were very impressed with him. He is very professional and just gives you the facts, he also gives you a list of all the complications.... I listened but kind of want to pretend I did noThear them. Before Dr. Michi left Ryder said, "Please Fix Me." Dr. Michi smiled and said, "I will." It was so sweet and brought tears to mine and Roman's eyes. The POSITIVES that I want to focus on from today is that Ryder was so brave and kept saying he was going to be brave tomorrow. The Anesthesiologist said he may not have to have breathing tube after the surgery because of how healthy he looked and his age. Also the Cardiologist said that they have a scale of surgeries at ACH and the scale is 1-5 with 5 being the most complex. She said we consider this surgery a 2. What comfort that gave us. There are Risks with everything but God has had his hand in this from day one and with Your Prayers God will see this surgery through and Restore our Child to health. Please Pray tonight for our precious Ryder Jack, for him to not have any anxiety and pray for all of our family. Tomorrow is going to be tough as they wheel him back to OR so pray for Roman and I. PRAY PRAY PRAY!

                                                                                                     Blessings,
                                                                                                                 Casey
            

Special Evening of Prayer for Ryder

           There are no words to describe what took place in our home yesterday evening. About a week ago a dear friend of mine ask me if it would be ok for her to come to our home and lay hands on Ryder and pray for him. She asked for us to invite family and some of our closest friends to pray as well. Of course I began crying when she ask because I was so touched. So we all held hands and each said a special prayer for Ryder and just lifted him up last night. Ryder even said his very own prayer it was so beautiful! Our family feels all the prayers and we are so thankful for them. God definitely is with us on this journey and is showing up in so many beautiful ways. Thank you to Karen Blasingame for leading us in prayer and for doing this for our family. God Bless you Sweet Girl. Truly an evening I will hold in my heart forever. Thanks to my dear friend Kate for getting this pic of our family.

       To those of you who have sent me your personal messages and stories, THANK YOU! My heart is so full right now and we will all get through this because of the amazing Love and Support we have. I also just recently by Facebook got to know another Mother that is at Children's now with her son who had heart surgery last Wednesday! It was an intense 48 hours for them but that beautiful baby may be going home tomorrow! God is Healing all around us!!!! We are packing getting ready to head to Little Rock and I will be posting more later.

    "For You Created My Inmost Being; You knit Me Together in My Mother's Womb. I Praise You Because I am Fearfully and Wonderfully Made; Your Works are Wonderful, I Know that Full Well."
Psalm 139: 13-14

                                                                    Blessings to All,
                                                                                     Casey