Round 5 – @QBWalters1 fight continues! #tackleperthes

The last several days have been a bit of a whirlwind and we wanted to share a quick update and say A BIG THANK YOU to everyone who has called, emailed, and checked in on Elijah following his surgery on Friday.

After our flight was unexpectedly canceled last Thursday morning, we scurried to rent a car and make the long drive to Baltimore, arriving in time for him to have his pre-op appointment and x-ray early Friday morning and surgery afterward.

Months earlier Elijah had a new and cutting edge surgery that our specialist believed would be Elijah’s best shot at the road to recovery. This surgery was a response to the disappointing and disheartening finding that Elijah’s hip had recollapsed after a year of fighting Perthes. Elijah was in the very, very small % of kids who experience recollapse. Needless to say, the last 16 months have been excruciatingly painful physically, emotionally, and mentally.

Elijah went into pre-op Friday remaining as confident and joyful as ever. Smiles, jokes, and a little talk about football and he was ready. The only fear came NOT from the steel rods and drills, but rather from getting an IV. (Really, son?) After the 3 hour surgery, Dr. Standard came out to walk us through what he had found. He felt that the new bone they had built months earlier had solidified, the shape was good, and that Elijah’s range of motion seemed excellent. The hip was still not fully grown back, but the seed of the bone had ossified, which was a major plus. With cautious optimism Doc told us he felt like we were on the right path. I fought back some tears and asked the obvious question any dad would ask, “Best case scenario, when can he play football?” Tiff rolled her eyes. He gave us strict orders that Elijah can bear NO weight on his Perthes leg for 4 weeks. He will then be x-rayed and if the hip still looks good in weeks 4-8 Elijah can use 50% of his weight with the help of a walker and crutches. Then, if all goes well, the weeks 8-12 he will have no weight bearing restrictions, but cannot run or jump. Then, we head back to Baltimore to see what is next. Elijah will be on a strict physical therapy schedule as he strives to gain strength and motion as well as 2 sessions of stretching everyday at home. After our conference with Doc they took us back to see our boy. He was resting peacefully and there it was….his leg with NO FIXATOR. Glorious. His stomach was quite upset and they had him on some major meds, but he was happy that he was 1 step closer…..

After spending time for Elijah’s recovery in Baltimore we finally got the green light from Doc to take Elijah to Perthes Camp for a few days. Perthes Camp is a camp founded by Earl Cole, who was the winner of the 2007 Survivor: Fiji, the NBC reality competition series, and a man who had battled and survived Perthes. At camp Elijah will have the awesome chance to meet other Perthes kids from all over the world (one young girl came from Egypt) who are facing this rare disease as well. Many of these Perthes parents we have spoken to, shared with, encouraged, and them the same for us over the last year and a half. Elijah will have the opportunity to be with others, who like him, are trying to regain their active lives. He will also continue to rehab with the incredible team on staff.

Obviously, Elijah still has a very long way to go. People repeatedly ask us when this will be over and when Elijah will be better. We wish we had a clear and confident answer, but unfortunately there is a saying in the Perthes world, which is, “Perthes will do what Perthes wants to do.” Elijah is certainly not out of the woods, but we rest assured that God’s grace and power are bigger than his struggles. Thank you so much for your prayers, friendship, and support. We say it often and mean it wholeheartedly that without each of you we would never be able to make it so steadfastly through this grueling process. We are indebted to you for holding up our arms and caring for our hearts. Please continue to encourage and pray for our QB as he daily #tacklesperthes! Shayne & Tiff

*Wanted to share with those of you who may not have seen Elijah’s video last week – https://www.youtube.com/watch?v=oWrZt78Nd_8&feature=youtu.be

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That radiant smile.
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The dreaded IV. He winced and we laughed. Whoops!
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Mr. Ex-Fix – We have a major love-hate relationship with this machinery!
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The nurses kept telling him what a beautiful boy he was, even with the metallic hair cap.
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Grinning the whole way to the O.R.
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The ONLY time he is quiet. He never stops talking. So, so peaceful.
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Slowly but surely a thumbs up!

@QBWalters 1 is All Heart. All Hustle. All the time. A quick update on Elijah as he continues to #tackleperthes

So many of you have been so kind to inquire about how Elijah has been since returning home from Baltimore and his battle with Perthes Disease. We wanted to take a few moments and share with you a quick update on our boy.

The summer has certainly been a whirlwind of busyness and emotion with the Walters, and especially Elijah. On May 3rd, Elijah had an intense and cutting edge surgery, which served as a big test of faith for us and Elijah, as it was experimental in nature and the feeling of our last bit of hope. Elijah indeed faced the challenge with confidence and optimism. However, the sad reality was that Elijah would begin and spend yet ANOTHER summer off his feet and in his wheelchair, unable to engage in so many of the activities he loves with that stinkin’ external fixator attached to his leg/hip. He can also be on his crutches, although he is only to have toe-touch weight bearing on his Perthes leg/hip, which means monitoring him on his crutches is tricky to say the least as he does not know his bounds and wants to just be free. Can’t blame him for that, but it has forced us to do our best to keep him…..down, which is torture for him.

We (mostly Tiff) have done our best to keep him active and his spirits up (that has not been nearly as hard as we thought as he always has a positive attitude). While he is constantly bummed about not being on the baseball field with his beloved Stix team, we have creatively found new ways to keep him engaged.

Two weeks ago he attended archery camp. Yep, you read that right, archery camp. Nothing like wheeling him in with 30 other kids he didn’t know and pray all would go well. Of course, the kid has never meant a stranger and loved it. It was exciting to watch him battle thru the competitions day after day on one leg, and after each session his confidence build. This week he is attending Space Camp  where he is learning about aerodynamics, building rockets, and driving us crazy with space facts….. He is always open for the next great adventure no matter how big the challenge or no matter what his pain level seems to be. He spends most days fishing, swimming, going to physical therapy, cheering on his little brother in baseball, reading books, serving at church and practicing his football throwing technique. He never wants to slow down, and we love that vibrant, playful, and downright interested in all things personality he has virtually everyday. Countless friends have made it a point to see him, call him, hang with him, read with him, send him notes/books, listen to him (which is a chore in itself because the boy never stops talking). He even got a surprise visit from his 5th grade teachers! We could not be more grateful for the circle of support which daily lifts Elijah’s heart and spirit.

Last night we began the countdown to his next surgery and our imminent return to Baltimore. 23 days and counting! It’s a big moment for him, us, our whole family!!! We will discover if the last painful and grueling surgery was a success and where we are in the battle. Every night as we get him in his bed, put his fixator bar in, and crank it down to extract his hip he winces in pain, giving us cautious optimism for the future. We say it every time but we are amazed at his willingness to fight, stay positive, and believe God for a miracle. It is said that life is 5% what happens to you, and 95% how you respond. He has faithfully and powerfully responded with a resounding, “No. This is not gonna take me down. I will keep fighting.”

Thank you for loving, supporting, and cheering on Elijah. We know that he would not be battling so hard, if it were not for the love of his family, church, community, teammates, friends and our Loveland Tigers. Each of you are making a difference……daily. Thank you.

Tackling Perthes Together!

Tiffany and Shayne

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Space Camp!
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One of his many PT sessions w/the fabulous Ms. Julie!
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Celebrating end of 5th grade w/water balloons.
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Picnicking outside waiting for PT to begin.
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Archery camp. Notice the left leg gingerly placed on floor….for just a moment. 🙂
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Walks with friends!
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Assisting at Mosaic’s first Vacation Bible School
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His awesome Cincinnati Stix teammates!
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Fishing w/friends has been a lifesaver!
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Ms. Papa & Mrs. Coldiron paying Elijah a surprise visit. These 2 ladies have been amazing. SO grateful!
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Thank goodness E can swim with his fixator on!
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All heart. All hustle. All the time. Our QB.

Thoughts on our last night in Baltimore…

Tonight, Lord willing will be our last night in Baltimore until we return in July for Elijah’s next surgery. As I sit here in the Ronald McDonald House with my boy, I’m reflecting on his resolve to be healed of this disease that has stolen so much of his childhood. I’ve watched over the past year and a half as he has dealt with so much pain,5 surgeries, disappointment and enough frustration to last a lifetime.
What I am most impressed with most is his spirit to keep going. After every tear comes a dimple filled smile, and the words ” We can beat this Dad”. Tonight his final words before falling asleep were “Dad, I’m gonna play football soon, no matter how much it hurts, no matter how hard it is, I love being a TIGER”. To which I replied “Son I just want you to get healthy and not worry about sports.” “But Dad, I miss my team, and if Jesus said he will give us the desires of our heart, that is what’s my desire is. I am going to do it”. 
What I learned this past month being with him day and night is that some things are worth fighting for. Things that might seem silly to one person, are the driving force for another. Elijah as I have said many times is one tough kiddo. Not because he is my son, rather because he is an inspiration to me. I see a young man of God fighting the good fight of faith to live the life God has given him. So many times in my life I sit and complain about how hard my day is, and when I look at him he never complains, never asks why, he just attacks the obstacle he is facing and believes that he can do anything. He is showing me that life is not defined by what happens to you, rather how you respond to it. 
I’m leaving Baltimore a changed man. Because I watched Elijah show me the power of faith, resolve and belief. No matter what life throws at us, we have two options. 1) Give up, listen to the naysayers and quit or 2) We choose to attack the enemy in front of us head on, Trust our God is bigger than whatever we are facing and Carpe Diem.
I have seen the scripture played out in Elijah’s life “You, dear children are from God and have overcome them, because He who is in you, is greater than the one who is in the world.” 1 John 4:4
Thank you God for allowing me to witness your faithfulness in my son. 
Shayne

Home Away From Home & A Video Message from @QBWalters1 – #elijahstrikesback

It’s been a week since I’ve had time to simply be still and gather my thoughts and I wanted to briefly share how Elijah is doing at our home away from home, otherwise known as Baltimore.

Early this week Elijah was released from the hospital and he and I made our way to the Ronald McDonald House of Baltimore. Shayne was still in Cincy and I was a nervous wreck attempting to get E out of the hospital, lifted up into the back seat of Shayne’s forever tall truck with Elijah being sick and unable to move and hoist his leg into the truck, driving in the streets of an unknown downtown, and single handedly getting E out of the truck and up into our room. However, we did it! It was quite comical  on my part because I was a nervous nelly, but Elijah was quite patient with me even though he was still not feeling well…..at all. He couldn’t shake the nausea, dizziness, soreness, and drowsiness.

Upon our admission to The Ronald McDonald House I immediately began meeting other families and taking an interest in their stories; each one of them so dear, so heartbreaking, so full of hope. Although I do not wish our Elijah to be in this situation, I do feel that I’ve had the privilege to experience compassion on an even deeper level. In his struggle he has taught me that. What a gift. The precious people here have been such an encouragement.

For the first few days here he was still very sick and Wednesday was particularly tough, however by Thursday he was starting to level out and become more like himself, although he’s still fighting soreness in his good hip that they bone graphed. Hoping this subsides soon. All week Elijah has been undergoing PT and pool therapy.  The staff at Sinai Hospital is outstanding. I am in awe of what they do. For Elijah, PT is the closest thing he has to competing/feeling like he’s pushing himself out on the field with his friends, and so, although it’s hard, he rises to the occasion. He was especially excited when he got to get in the pool for therapy for the first time. If you know Elijah very well you know he’s an experience every ounce of life kind of kid and the pool therapy was no different. For us, it’s the first time that his Perthes hip/leg is left to be more open to do what it was designed to do…..walk. We get choked up watching him. There he is….FREE. The physical therapists have all been tremendous with him as they challenge him, kid with him, and encourage him to keep pushing harder.

Elijah has spent time reading (he may be out of school, but he can’t escape my reading wrath 🙂 – ha! He has gotten some thoughtful gifts, surprises, calls, and messages from his friends and family, enjoyed house dinners and in house movies w/families of RMH (Under Armour even came one night and provided dinner and bingo), shot some hoops from his wheelchair (see below :), been taken on numerous outside strolls, continued to ask 7 zillion questions about anything and everything, and begun to do a bit more walker walking. So surreal to see your son, who you are used to seeing running amuck and up and down a field, a court, a baseball diamond, or sidewalk for that matter, be stricken to a walker……again. Hard to describe the feelings, but I know it’s all part of his journey, his story, his struggle, his triumph. In those hopeless moments I am reminded of Romans 8:28 – And we know that in all things the Lord works for the good of those who love Him and have been called according to His purpose. Elijah is a warrior and we want him to rage on in Jesus name.

Today Elijah said that we has really starting to miss home and his friends. Being away for him has been a social shutdown. He’s missing all the end-of-year fun and goodies w/his 5th grade class. Most days he’s ok about it and other days, like today, he shares that he’s anxious to get home….we all are.

I took 2 minutes and asked Elijah a few on the spot questions about his Perthes journey. You can give it a listen below.  He’s quite candid. Yikes. Man, I love this wild boy. Crazy to think that God loves him even more. Continued thanks to each and every one of you who take the time to text, call, email, give, pray, serve, run our other 3 around town, and everything in between. You are our circle of support and we are grateful. Thank you for helping Elijah #tackleperthes one tackle at a time.

Tiff

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Darling Emily at RMH – A fellow Texan!

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Busting out of the hospital!

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Sweet surprises!

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Box of treats from Uncle Jeff & Aunt Annie!

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Reading!

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A time waster & teeth cruncher – a giant size jaw breaker. Can you guess which parent got him this?

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That smile. 🙂

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Wheelchair basketball. He STILL beat me at P-I-G. How is that possible?!?!

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#tackleperthes #alldayeveryday

Surgery & Week 1 w/@QBWalters1 – The Highs & Lows

So, as you know, we came to the grueling decision to bring Elijah back to Baltimore for a very important, urgent, and experimental new surgery our specialist proposed. Due to Elijah’s age we must be pro-active because he has less time to grow than a younger child, which complicates treatment options. So, on Tuesday, Doctor Standard wheeled him back to the operating room w/high hopes as we waited and agonized and waited. During the 7 hours Elijah was in surgery they cleaned out the dead bone in his Perthes hip, took bone and bone marrow from his other good hip 😦 as well as cadaver bone and other juicy meds to create a putty like substance that they carefully crafted and sifted through a straw like utensil and repacked Elijah’s hip. They then expanded and reshaped the outlining of the hip (cartilage) to create a spherical shape hip. They then attached and bolted the external fixator to E’s hip/leg. That was one piece of machinery I hoped to never have had to see again. Sad face. Sad face. Sad face. Elijah is only the 9th child to have ever had this surgery and the uncertainty of that was quite overwhelming. So, when Doc Standard walked out with a hopeful smile to update us we were just relieved that portion of the journey was behind us. Doc conveyed that he was very pleased with the preliminary results of the surgery, but since this surgery is in such uncharted waters that the next several months are extremely critical in setting a solid foundation for E’s hip.

We were quickly taken back to greet Elijah in recovery. He was so still, so restful, so tranquil…..and then he threw up. Once Elijah settled down and his nausea finally subsided we all were then faced with the cruel reality that we have to come face to face with the ex-fix again. We all gave it a respectful and despicable acknowledgment. Never have I loved a piece of equipment so much and despised it at the same time; it is giving Elijah what we can’t…..a fighting chance at running again. We stayed in recovery awhile and were then transported to E’s room. We were generously greeted by all those who remembered us last time we were here. It was bittersweet, because as much as we appreciate how well these medical teams take care of us, we wish desperately not to be here. Elijah was exhausted and we settled in and turned in for the night.

The next morning we awoke to a fairly upbeat Elijah who was still rocking a hard core epidural to keep his pain under control and it was doing just that. Our PT & OT came in to help him get out of bed for the first time and take about 3 steps to his chair. We all held our breath and gritted our teeth as he dug as deep as possible to slowly glide and lift those normally busy and active legs across the floor. He did it. Nothing was gonna stop him. We then got word that there was going to be a special superheroes party in the kids’ playroom sponsored by the Hope For Henry organization with special appearances by superheroes, toys, treats, and more. Our room is closest to the playroom and the party got so crowded so quickly that Elijah was going to have to wait a good long while before even attempting to get out there, especially in his wheelie chair we had him in that is an absurdly large contraption. Our nurse came in to tell us to just hang tight and to tell us that a surprise guest had shown up at the party, Ray Lewis. Now, Ray Lewis in Baltimore is like an Anthony Munoz in Cincinnati. People clamor to meet them. We thought maybe Ray came to the hospital often, but they assured us he does not. Our nurse knew we might miss seeing him because he was in the large party room. Before we knew it he walked into our private room and encouraged Elijah. I was surprised how tender he was with Elijah. He reiterated to Elijah that he began playing football at age 11 and that he has had 9 surgeries and each one had made him stronger. He got down on E’s level and spoke with him, autographed his jersey, shook his hand, and told Elijah that he was his highlight of the day. Something Elijah will hold onto forever. I was grateful that the Lord gave Elijah that moment…..that whisper that only God can give that says, “I told you I’ve got you.” The rest of the day was pretty low key. And then the night began…

At about midnight Elijah’s bowels began doing cartwheels, flips, and splits. I’ve never seen so much pooh and wiped so many buns (well, except for that time when I had 4 babies 🙂 in my life. The staff was a bit puzzled and we began to get a bit concerned. Today was also the day the epidural was going to get turned off and I was a nervous wreck. I’ve had a baby with and without an epidural and I assure you it makes all the pain difference in the world! Because the epidural’s entry point in his back had been compromised by pooh-pooh they wanted to get the epidural out and the area cleaned. Epidural came out. Oral pain meds began. Pooh-pooh continued 24 hours. Oh, and remember Vince Vaughn in Four Christmases, yep, that was Shayne during the whole pooh experience. We got to the point that we were downright delirious. We cope a lot by laughter. This was the perfect stomping ground for hysteria and we needed it. We spent the remainder of the day on doo-doo duty.

This morning Elijah’s pain shifted to his stomach. He became extremely nauseous and began feeling exhausted, dizzy, and faint. He still managed to plow through his PT, although I’m pretty sure he kept pushing because he felt he had a rep to protect. All our nurses comment on how likable, kind, and committed Elijah is to working hard. I think he didn’t want to disappoint them. Once we got him back into bed he had a window of joy as he worked up the energy to face time with his class back home, but once they hung up he crashed and burned big time. I spent lots of time reading to him and just staring at him. We are hoping this passes quickly so we can continue to support and care for him as he  continues to #tackleperthes. Not sure what tomorrow holds, but grateful and confident that we know WHO HOLDS OUR TOMORROW.

Thank you to each one of you who continue to cheer and pray our boy to victory, as well as take time to read and journey this with us. When Elijah was diagnosed we found most of our information about Perthes from the amazing blogs of others, which is another reason we share, for those who will come after us. I spoke with a woman recently whose daughter was diagnosed and she told me she checks daily to see if we’ve updated. Just wanting to shed light…and hope even in our struggle.

As I was walking beside Elijah’s bedside when he was being transported to his room in the pediatric unit, a painting on the wall jumped out at me. It said – The pain you’ve been feeling can’t compare to the joy that’s coming. What a day that will be……

Tackling Perthes one play at a time,

Tiff

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Our brief time playing basketball in the playroom before being isolated due to sickness. 😦
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Working it. Ouch.
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Baby steps….
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Fixing the fix. Painful.
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Our beautiful nurse Jara.
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He may not be in school, but we still are having school. The book we’ve committed to reading this week. It’s a keeper for sure!
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Down and out. Hard to see him this way.
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A popsicle and his peers = a satisfied boy
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Ray Lewis & Elijah sharing a cool moment
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Our #1 QB
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Resting and recovery.
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All is calm….well, almost. 

The Toughest Decision Yet

The medical field is amazing. So many brilliant and caring doctors with such powerful wisdom. We have been in contact with doctors from literally around the world who are helping us process the journey and complexity of Elijah’s treatment. All who are experts, all who want the best for our boy, and yet in the end, we have to process the mountains of information and make a life decision with what we know and the leading of the Lord.
Elijah’s battle with Perthes Disease is not the typical treatment plan. He is in the advanced stages of the disease and with his age and severity of the disease it is not an easy treatment. His first few big surgeries have not taken, leaving us back to square one. Now, we must move on to more advanced surgeries that are all very rare and all experimental. We have found 2 of the top experts in the world that are helping us. Both doctors are amazing and want to see Elijah healed but take very different approaches to help us get him there.
Our surgeon in Baltimore is leading us to a experimental surgery that has only been performed a handful of times ever (Elijah would be the 9th kid ever to have had it). It involves a deep involvement of hollowing out his legs and rebuilding the left leg and hip from scratch. Our other specialist, from Lisbon, Portugal is suggesting a new surgery that involves a drug not yet legal in the United States. Both hope to produce the same result but  both are very invasive none the less, not to mention the medical costs we will be incurring either way we decide, as insurance will not cover.
We are asking our friends and family to join us in prayer as we have all the information we need, and to hear from the Lord as to the right direction. Both doctors agree that no matter what something has to be done ASAP on his hip, otherwise we….don’t even want to imagine.
Once again, as we have stated time and time again, Elijah’s resolve is AMAZING. He is ready to fight this disease head on and will not take no for an answer when he dreams about his life. We are SO proud of our champion. We will be making a decision in the coming days and then be traveling to either Baltimore or Portugal next week and we just need a peace that passes all understanding as this is weighing so very heavily on our minds and hearts. Would you please take time and pray for wisdom for us? We will keep you informed and know there is no way we can make it through all of this without the grace of God and our friends and family. Every day we thank God for each of you as we battle the emotions of this journey.
We love you all and thank you for your prayers, friendship, financial support. You all are literally helping change the life for the better for Elijah and our entire family. Lets #TacklePerthes together.
Shayne and Tiffany
http://www.GoFundMe.Com/ElijahWalters

What doesn’t kill you makes you stronger – Elijah is proof of that! Perthes Disease strikes hard….

Friends and Family,

It is with sad and heavy hearts that we tell you that we received news that Elijah is back to square one in his battle with Perthes Disease.

On Monday, Elijah was sent home from school with pain in his hip. We immediately took him to Cincinnati Children’s hospital for testing. On Tuesday our surgeon notified us that he has lost his femoral head. His hip now is in a state worse than a year ago. He continues to lose over 50% of his bone every 4 weeks.

The news in all honesty was devastating, discouraging, and defeating. Once again we had to look into Elijah’s eyes and tell him the disease had struck again. Words cannot express the pain of that moment. To see him WORK day in and day out for the past year, through countless PT sessions, daily stretching sessions, and not to mention the severity of fighting through last summer’s surgery with the external fixator ALL for the chance that he could play football this fall and be back on the field with his teammates. Seeing the disease win this round, ripped our hearts out.

So, NOW WHAT? Well, as of now we are scheduled to return to Baltimore on May 3rd for a VERY rare surgery; one that has only been done a handful of times. It has also been recommended that the external fixator be reapplied. This was a tough blow to take in. In addition, we are looking globally at doctors for a second opinion. One of the Dr’s we have been consulting with is Dr. Lopes in Portugal. He is the global leader on this disease. No matter what we decide, it will require a lengthy stay away from our home.

We covet your prayers as we need God’s guidance and discernment on this painful journey to see our boy become healthy. In the words of Rocky Balboa, “Life is not how hard you can hit, it’s about how hard you can get hit and keep moving forward.” Well, even though Elijah has gotten knocked down, his first response to us after the news was, “I will play quarterback again. Perthes is not gonna stop me.” He is choosing to keep moving forward! And so will we.

Now more than ever he needs the support of his friends, family, school, teammates and church to keep his strength up and win this battle. Keep praying, loving and cheering for #1. If you would like to help support him financially on this journey to healing you can do so via his Go Fund Me Page at https://www.gofundme.com/elijahwalters

You know, God has a way of encouraging us even when our hearts are hurting. This has been one of the toughest weeks to date, but also the proudest. Elijah has had on his heart to start a Fellowship Of Christian Athletes at his school. With the support of the lovely Leslie Papa (his teacher), he rallied an amazing group of students to attend their first meeting. Precious to see Elijah walking in obedience. Very excited to see these students unify and bless others and grow in Jesus name.

The Lord makes beauty of our ashes………..continuing to lean on Him yesterday, today, and forever. Please partner with us in prayer for Elijah. We love you all and are so thankful for each of you and our amazing community. Your friendships have been monumental in helping Elijah #tackleperthes. Please keep pushing our QB to the finish line.

Shayne and Tiffany