Gastroparesis Takes Us To Ohio

I’ve tried to write this many times. I’ve written and deleted. Waited for the words to come to my mind, they aren’t coming so bare with me.

Our life. Our life is beautiful. Our life is chaos. Our life is blessed. Our life is loud and vibrant. Our life is hectic and wild. Our life is warm. Our life is fearful yet full of faith. Our son has health issues. We have yet to find the answers.  We’ve spent five weeks now with a gtube. He has almost gained a beautiful pound. We connect him every night before bed and disconnect him five hours later. We untangle him countless times in-between that. We tell him “it’s ok”, “no ouchies, just milk through Tubie”. He tries but has a very hard time. He lays right beside me, I check him, all night long seeing if he’s okay. He tosses and turns. He’s still incredibly uncomfortable and his emptying rate is severely delayed. People ask me all the time “how’s Joseph?” ...

I’ve yet to find a response. 

He’s great.

He’s smart.

He’s handsome and beautiful.

His smile is our fuel.

He speaks in sentences.

He’s wild and adventurous.

He shares.

He’s curious.

He’s full of love and cuddles.

He loves adventures and machinery.

He loves dinosaurs.

He flirts and can be shy.

He’s silly and a comedian.

He’s athletic.

He’s kind.

He’s brilliant.

.

He doesn’t feel well.

He knows no different.

He’s resilient but this lifestyle of doctor after doctor is taking its toll.

He doesn’t eat much.

He’s uncomfortable.

He cries out in the night “mommy ow” “mommy help me please.”

We don’t have the answers. Still.

This week... Joseph’s been accepted to the motility clinic at Cincinnati Children’s Hospital. It took five months for his application to be processed and to get a plan in place. Now, we are here. Today it all began. Tomorrow we continue with clinic and Wednesday he has surgery. Ent will scope him, take biopsies and place ear tubes. GI will scope him, take biopsies, dilated his pylorus and inject his first round of Botox. The motility specialist will do Antroduodenal manometry testing. He will be confined to his bed for 36-48 hours without any medication. He will have a scope and camera in his nose down to his stomach the entire time monitoring his motility. 

We will be there every step of the way, navigating, advocating, praying and hoping for an answer so he can flourish without pain. So he can be nourished and grow.... without pain. 

I tell myself many times a day “with God you shall not worry, it’s useless.” Yet, I’m worried. And I am with God in mind and spirit. I trust in him. But I’m scared. I’m scared for my sweet, strong, happy little man. I don’t want this for him. I would take it all and more if I could. I am astounded by his resilience and nature. I love him, with every cell in my body and every ounce of my heart. He is my heart. So please, pray with us once again. Pray for health, healing and answers. A new plan, a successful one. Joseph is the sweetest, kindest, most badass warrior I know. We will overcome this. 

Thank you for all those that have prayed, sent love and positive thoughts. Thank you for all the wonderful acts of kindness for our family. We feel the love and support and we appreciate it beyond measure. Stay with us, pray with us.

Thank you.