Ryker had a very rough day yesterday pulling out his feeding tube from his abdomen. Another rough day is coming tomorrow for his weekly appointment with the Oncologist and round 3 of Chemotherapy. Another painful bandage change for his port on his chest and more blood work. He still isn’t gaining weight even with all day feeds. I am hoping to get some answers. My milk production has dropped to almost nothing considering he isn’t feeding from me. I am blessed enough to have a boat load in a deep freezer, so I’ve been breaking into that. His calories with breast milk and a bit of formula is 26 calories. Where the tumor is located is definitely messing with his metabolic system. Keep this little angel in your thoughts and prayers still... it’s how we are both surviving emotionally and physically. Ryker has been his smiley self and now enjoys looking at himself on the IPad. He has become obsessed with music and won’t go down for a nap without it. 💛🎗💛 Again a huge thank you for raising money for Ryker!!! @darrellsrestaurantvenicefl @solorzanos_pizzerias Bodrum restaurant in Venice, Venice Ice cream and Pazzo ❤️ #pediatricbraincancer #gogold #morethan4 #childhoodcancer #rykersfight #prayforryker #ryker2018 #astrocytoma #chemotherapy #mamaslittlecowboy

That smile & those blues give me meaning. You are a complete blessing to me Ryker Jay. 🙌 #rykersfight #ryker2018 #childhoodcancer #pediatricbraincancer #gogold #morethan4 #mamaslittlecowboy

In the morning we watch stimulating videos and listen to music. He can’t take his eyes off the IPad. Music of any kind has always gotten his attention and calmed him. When he was born in the hospital, I’d put on “baby sleep music” and he loved it. In the car if it’s silent he gets fussy.. the minute music comes on he relaxes. My little angel 👼💛🎗💛 #rykersfight #ryker2018 #pediatricbraincancer #gogold #morethan4 #childhoodcancer

These two 😍 Ryker will be bass fishing in that pond with Mom and Dad one day 🎣 🎗#homeiswheretheheartis #rykersfight #prayforryker #ryker2018 #mamaslittlecowboy #pediatricbraincancer #gogold #morethan4 #3monthsyoung #childhoodcancer

His little toes 💓. Today was physical therapy.. he passed out after an hour of being messed with. They noticed he favors his left side, so we will be doing exercises at home to get him to get more comfortable with his right side. Tomorrow morning we will be back in St Pete for his 2nd Chemotherapy treatment. Keep this little angel in your thoughts! Hoping for no severe side effects tomorrow 💛🎗 #gogold #rykersfight #ryker2018 #pediatricbraincancer #childhoodcancer #morethan4 #mamaslittlecowboy #pediatricbraintumorfoundation #astrocytoma #chemotherapy

The support from people and local businesses have been unreal. This little man is so happy to be home. The sleepless nights due to constant care isn’t a thing to me as long as my little man stays happy. He hasn’t really cared for many stuff animals but @draytondeanlutz got him this bulldog when we were at Sarasota Memorial and he hasn’t let it go since. This Wednesday will be his 2nd Chemo treatment and altogether they’d like 10 weeks and then a 2 week break with another brain MRI.💛🎗💛 Thank you @lilyraeandco for making those adorable shirts. 💓 #rykersfight #childhoodcancerawareness #gogold #pediatricbraincancer #morethan4 #raisingforryker #ryker2018 #astrocytoma #3monthsyoung #childhoodcancer

It’s so nice to be able to get back to our normal cuddle bonding time. It was super hard for me to accept the fact he was hooked up to so many machines, I could only stand with him a foot away from the crib. It was frustrating for us both. We are taking this rainy day to watch Animal Planet and cuddle before Chemo starts tomorrow. 💛🎗 #mywarrior #rykersfight #prayforryker #ryker2018 #pediatricbraincancer #childhoodcancer #gogold #fuckcancer

Happy 3 months to my blue eyed angel. I never thought this is how we would be spending it. I wish I could trade places with him. His surgeries were successful yesterday and he will be all set to start Chemo on Tuesday. September is actually Childhood Cancer Awareness month. Keep smiling Cowboy 💛🎗 #gogold #childhoodcancer #pediatricbraintumor #pediatriccancer #childhoodcancerawareness #rykersfight #prayforryker #ryker2018 #mamaslittlecowboy #3monthsyoung

Lord knows life hasn’t been easy on me.. some of the choices I made for myself and some I was dealt. All I can do is woman up and accept. Having my son was the greatest gift I’ve ever received and has made me an even stronger, more compassionate and patient woman. For the ones I love, I will fight til the death. The support we have received brings tears of joy to my eyes during this dark time. Speaking to some amazing people gives me strength. I reached out last night to @aubsjourney__ and she is such a strong inspiring woman and truly helped me get through one of my hardest nights. Your time spent talking with me on a relatable level is nothing but appreciated. 🎗Just another mountain put in my way and I am prepared to move it. 💛🎗Say a pray for Ryker today.. hopefully his final surgery before Chemo treatments start. #prayforryker #ryker2018 #staystrong #pediatricbraincancer #rykersfight #childhoodcancer #pediatricbraintumor #astrocytoma #gogold

Ryker Jay you are our heart&soul. @draytondeanlutz We thank everyone for the tremendous support. 💚 I am sorry for us being vague or not responding at this time, but we are still waiting for some tests that are pending before we speak out. Please don’t stop thinking about this little cowboy. #ryker2018 #mamaslittlecowboy #prayforryker

The second attempt MRI without sedation was successful! I think yesterday he was pushed to his max patience wise, but he slept through the 45 minute scanning. 😍🤠🙏 #prayforryker #ryker2018

Since 4 AM, little man has had a rough day.. pulling his feeding tube out. Cystic Fibrosis test, where they stimulate the sweat glands and wrap them tight and let them sweat for 30 minutes so they can test the sweat.. The Genetics doctor coming in and ordering up many blood work panels and metabolic screening. Nurses came in and pulled a half oz of blood. The Neurologist ordered up an MRI for today, so they placed an IV in his foot. Typically they sedate for MRI but he’d have to have an empty stomach but the doctors don’t find that in his best interest. They are going to attempt to do it with no sedation and hope for good imaging. If they don’t find anything, then we start a whole new road with a GI specialist. The eye doctor came in and dilated his eyes.. Ryker is exhausted. It kills me to see him go through this and I wish I could take it away. I am hoping we get some answers today so we can start the road to recovery and return to the comfort of our home. ❤️ #prayforryker #ryker2018

Took my last trip to my home to love on my dogs, horses and the bitch kitty before my journey to All Children’s. I can’t wait until we are home again to admire the beautiful out east sunsets, fish the pond with my little family and for Ryker to feel the comfort of his own home. 🙌❤️ #prayforryker #ryker2018

My heart ❤️👼 Still no answers on baby Ryker. Feeding tube is still placed and is having a hard time keeping it down. It is looking like we will be transferred to All Children’s. Monday is the deciding day. We started a go fund me for Ryker. Anything helps. (Link is in my bio) Again thank you for everyone checking up on him. It hasn’t been easy for me emotionally this week, but I’m trying to stay strong for my little man. 🙏 #prayforryker #ryker2018

Despite everything going on and nurses constantly messing with him.. his smiley goofy demeanor is still there. All of my frustrations and fear go away when I see him smile. We are hoping to get it figured out soon so we can go home ❤️ Please keep him in your thoughts. I’ve appreciated all the positivity sent our way. Thank you to everyone that has reached out and keeping us strong. It means the world to our little family. @draytondeanlutz #ryker2018 #littlefighter #prayforryker

Ryker is 2 months today 😍 He does nothing but smile and talk to us. He can roll over and lift his bobble head for a good while. He likes to fake me out by showing me his bottom lip and if I go to pick him up and then he smiles. 😑 He likes to death grip my hair. He is always kicking and moving his arms. #ryker2018 #cowboyintraining #2monthsold

He sleeps through the night and I wake up to him making the cutest happiest noises in the morning... He is a morning kind of man. #justhappytobeawake #ryker2018 #morningpersonlikemama #happybaby

I like to hang with Mama, Gmaw-P, & my horses. 🇺🇸❤️🤠🐴
#ryker2018 #barnbaby #cowboyintraining

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