Three years ago today my special little Turkey had a Gtube (feeding tube) placement, bilateral…
Three years ago today my special little Turkey had a Gtube (feeding tube) placement, bilateral muscle biopsy, and fundoplication of his stomach. I’m so proud to say he’s officially free of his feeding tube! They said he’d never walk and he’s mobile, they said he’d never eat without his feeding tube yet he does! Due to a brain injury at birth he has hypotonia, global developmental delay in all spheres, and like most neuro kids an underlying seizure disorder. Couldn’t be prouder of his progress ✌🏻 Any other special needs mommies feel free to share your stories!
blessed2018w9·
You and your little are such an inspiration to me helps me to stay strong for Journee.. Thank you for sharing.. He's Gods Miracle!
Beaky Mcspence·
@blessed2018w9, I had you in mind when I posted this my love!
We must never ever forget that they can surpass expectations. For over a year my son struggled to gain weight with the “formula” the hospital dieticians prescribed to be put in his tube. That summer our dietician went on holiday and the hubs said the heck with this! We started making and blending his meals that day and began feeding these meals to him through his tube. Every day he also got blended juices with macro greens. That month our son went from under weight and failing to thrive to gaining 8 pounds! We learned to advocate for him and do what we felt was right.
He walked at nearly 4 and they told us he’d never even sit up on his own. He has balance issues and tires easily but he’s independently mobile.
Of course he is delayed and struggles in many areas but he has surpassed the odds and labels he was given.
Many people only wish to meet their hero, and I’m proud to say I’m raising mine. He truly teaches our family so many things, and like my husband says he can live with us all his life. We have plans to build our next home with an apartment above our garage so that he will one day have that independence.
Beaky Mcspence·
@honeyxxbee, What a DOLL! Such an amazing outcome ❤️
Beaky Mcspence·
@blessed2018w9, I remember being 20 and waiting at the bus stop on my way to college classes.
Everyday I saw this elderly man of likely 75 seeing a man (probably 40) with Downs Syndrome onto the city bus. One day after many smiles and waves exchanged I asked him if this was his son. He smiled and said that’s my Daniel, we just lost his mom last spring. He continued to tell me that in the passing of his wife he felt the dire need to teach Daniel how to navigate the city bus on his own, so he could get to his beloved day program should he pass away too.
He continued on to tell me that chilly day that they were urged at birth to put Daniel in an home, and his wife would not hear anything of it. Daniel he said proudly was likely the most well travelled young person with Down Syndrome in that era, as they had travelled with him on their sail boat around the world.
For months till I finished school I saw Daniel and his dad every day, and watched his dad faithfully wave him off till the bus was out of site.
Never in my wildest dreams did I imagine years later I’d be welcoming my own special soul into the world. Like Daniels dad it doesn’t matter how old we are we will be there daily to wave them off on their journey of independence. I don’t think I will ever forget Daniel and his dad because I found great comfort in the early days that we too like that family would do just fine.
J·
Love bug 💙 😍