Feeding Tube Awareness 2018

We are definitely battling with the feeding tube on a daily basis.  But, what’s new?  I was sitting here pondering on how long it has been that I learned how to work with feeding tubes and I have to say that I am a genius! haha.  It has been 18 years. What is up with that? I should have a medical degree of some sort by now.  Don’t you agree?

Each year that comes around, during the first week of February, we celebrate feeding tube awareness.  Within the L1cam Syndrome, you have many conditions that have their own awareness.  I feel like we have a rainbow diagnosis.  Full of so many ribbon colors. haha!  Without a feeding tube, my son would not be here. He is on continuous twelve-hour feeds with a two-hour break in between because his body cannot tolerate regular feeds. The food would settle into his lungs and cause pneumonia leaving him to be in the hospital for days at a time.  So, we are cautious and do our best in trying to stick to the plan we created for him.  He seems to be doing good with it and we are so thankful that its working.  Another thing we have to watch is the site itself.  Sometimes there will be drainage and we have to be careful and watch for irritation or build up around the tube and that could mean he possibly has an infection and will need medicine’s to help with clearing it up.  That rarely happens though if you stay on top of it and keep a watch on it.

Brent has an IV pole to put his pump on and I love how I have a clamp that hooks on the back of his wheelchair and I am able to put the pump on his chair without having to drag the IV pole around everywhere.  So, if you are a feeding tube momma, then you know that’s a blessing to have that.   I don’t know about you but, I need less complications in my life.

This week we are celebrating Brently.  Celebrating for having a feeding tube that is his food supply and celebrating everyday the fact that he is a super hero striving to do his best with what God gave and provided him.imagejpeg_0001.jpg

 

If you want to know more about Feeding Tubes and their awareness week,  below is the link directly to the site.

Feeding Tube Awareness

Have a blessed day!

About Tonya Aycock

Hi, my name is Tonya. I am a wife and mom of two children (Brandon & Brently). I am a born again Christian. My passion is raising awareness for my boys and making sure they have the very best that I can give them. I love singing. I was in a Southern Gospel Group for about three years, and I enjoyed every minute of it. I think most of all, besides the singing, I enjoyed meeting people and sharing my testimony of how God has brought me through. I love playing guitar and hearing my sweet husband play music and sing to our boys. I enjoy making crafts and designing floral arrangements. I love camping. I am always up for a new adventure! I enjoy working in my yard and anything outdoors. I love my home. I like taking pictures of God’s beautiful creation. The hummingbirds, Canadian geese, turtles, and deer are beautiful! I never dreamed that I would enjoy the country as much as I do. I have always been a city kind of girl, so let’s just say I am adjusting to the country's life well. Haha! Another exciting thing about my husband and myself is that we have always wanted to open a restaurant. Maybe one day… who knows…. I created this blog to share the in’s and out’s of daily living of being a mom of children with special needs, how life can change in an instant, losing a child, finding real friendships that live the same kind of life that I do that truly understand, and much more. I love to talk about my faith as I learn how to cope through life (good and bad) together. I want to always put complete control in my Lord and Savior, Jesus Christ, because without Him, I am nothing. My prayer is that I can somehow help someone by sharing my story. It is most definitely easier said than done, and I fail daily, but striving to make things work in a world that doesn’t understand is just one of the reasons I am here, writing and sharing my story and trying to be the best me as I can and being the best mother that my children will love and respect and see me survive and thrive as I watch them surviving two thriving in life. But, most of all that they see Jesus in me. “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 God has a plan for my life and my family as well and for who is reading this right now. I can only hope and pray that I am doing what He has called me to do…… Being a wife, mom, advocate of special needs, a friend, encourager, but most of all… a servant of His. This has been and continues to be a unique life raising my SuPeR HeRo children dancing in the rain of the beautiful, messy life!
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