Tag Archives: Down Syndrome

Meet Raiden

Testimonials, , , , , , , , ,

Working with Raiden’s mom was an amazing experience. She was highly motivated which was crucial in taking on a blended diet for Raiden. A blenderized diet takes time and commitment and we were working together with 3000 mile and 2 time zones in between us. The fact that we both owned a Vitamix made it easier for me to create a blend for her and have her repeat it seamlessly step by step. My joy comes from seeing little ones with g-tubes grow and thrive on real food and helping other families experience the same success. So, without further ado, here’s Raiden’s story:

Raiden at 1 year

Brechae and Raiden’s Testimonial:

My son Raiden has been tube fed since he was 4 months old. He was fed breast milk fortified with formula for extra calories. As he got closer to a year old and my milk supply began to decrease I sought out his options for nutrition. I spoke to his G.I. and he wanted to put him on Pediatric Compleat. I’m the kind of person who does her research, especially with regard to my child, so I looked up the formula. Upon reading the ingredient list I quickly discovered that the product was mostly sugar. I didn’t want that for him. I remembered reading about a blended diet in a feeding tube group on Facebook. At the time I had no idea what it was but I wanted to learn more. I was directed to “Blenderized RN” group on Facebook and that is where I met Tina!

We bonded over both having tubie sons who also have Down syndrome. She helped/taught me to slowly start the transition from fortified breast milk to real food through his tube. Raiden doesn’t have dietary restrictions/sensitivities or G.I. issues. His aversion to food is mostly sensory so I was able to trial all kinds of baby food, baby cereal, eggs, whole milk, etc. with no problem. Once we learned what he tolerated, Tina created a breakfast blend just for Raiden (Raiden’s Breakfast Blend)! It had oatmeal, eggs, an apple and whole milk. It was my go to meal and gave me the confidence to create blends for him on my own with my Vitamix.

Initially he was fed via Infinity pump and could only handle small amounts at a time. I was worried it would always take hours and hours of him being connected to his feeding pump to get him to grow. Tina assured me that based on his medical history we would one day be able to bolus feed via syringe and that he would be able to handle more volume and she was right! When I started blending Raiden was 18lbs. Now he is 27 lbs! We are two years into our blenderized diet journey and I can honestly say that it has been one of the best decisions I’ve made for my son. Tina’s wisdom and guidance along the way has been such a blessing!

Raiden at 33 months

Another PICC Line

Our Journey, , ,

Another PICC line

Hands up.  Eyes closed.  Twisting at the waist as if the top half of him was actually a washing machine agitator.  Sunday morning worship is extra special when Matt is with us.  Sometimes I just watch others watching him and smile. Other times I think “If they only knew what it takes on a daily basis to get him ready to go anywhere or how much pain he has experienced in the 15 years he has blessed us with his presence.  Some would say, “Well, he doesn’t know any better.”  I beg to differ. He may not understand it (neither do I for that matter) but he feels it.  He doesn’t like it (see above picture) but he chooses not to let his circumstances steal his joy.  Oh, if I could only live life the way he does-To be that strong.  I think I would have checked out long ago.  What joy he brings to others.  I truly believe that is his calling.  “Matthew” means “Gift from God” but it might as well mean “Acceptance with Joy”.  But, as his mom, it is times like this that break my heart.

Another PICC line. Another g-tube stoma infection that won’t clear.  Another round of IV antibiotics.  A bowel that stops working no matter what I do with his diet. More unanswered questions.  More decisions to make for him.  Decisions that undoubtedly will involve more pain and more time away from home and school.   I try not to question God but sometimes it’s hard.  It’s hard when he’s in the hospital and is asking at least every 30 minutes to go home.  Or,  every weekday when he says, “Mom.  Go school?” and I have to say “I’m sorry.  Not today.  You can’t go to school with a PICC line.”

I have read that, 90% of in utero diagnoses of Down Syndrome end in abortion.  Some would use cases like Matthew’s as justification. Not everyone with Down Syndrome struggles with such complicated medical conditions.  Many live long, happy and even independent lives.  When Steve and I said no to the amniocentesis, we said “yes” to whatever God had in store for us as a family.  I liken it to standing at the alter on your wedding day.  You stand before God and man and make a vow “til death do us part”.  Why?  Because we have no idea what lies ahead. God doesn’t give us a crystal ball on our wedding day.  If He did, many of us would never marry.   And so it is with our children.  Some come into the world healthy and stay healthy.  Some come in healthy and get very sick or become disabled in some way.

So what do we do?  Just as we would for any sick or injured spouse or child.  We rise each day, ask God for renewed strength and deal with what’s in front of us.  If  Matt can  take it, we can make it.

 

I’m Back!

Our Journey, , , ,

It’s been very busy here at the Barton home lately.  Shortly after starting this blog we found out that Matthew needed major hip surgery.  I was a bit overwhelmed by the news because the x-rays from the prior visit with the orthopedic surgeon looked great.  On top of all the digestive tract problems, Matt also suffers from bilateral hip displaysia.  That means that both of his hips dislocate.  Because of their loose ligaments, kids with Down Syndrome are prone to it.  We found out when he was 4 and he wore a brace for 8 years hoping it would correct the problem without surgery.

The brace did work on the right but his left hip continued to dislocate.  So, at the end of December, Matt had his surgery.  Unfortunately he was back in the hospital 1 week later with an infection in his hip because of his weak immune system.  Now after 3 months in 3 different casts

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Cast #1

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Cast #2

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Cast #3

and 2 months in a new brace, he is walking on his own without the help of the brace or walker!

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Walker and New Brace

Now if that weren’t enough, 3 months before the surgery, he began having major problems related to his Hirschsprung’s disease. In my next post, I will talk about what happened and share my green smoothie recipe that worked where Mira lax failed. Stay tuned!