The Road to Atlanta

Four weeks ago, Benaiah and I relocated (temporarily!) to Atlanta, Georgia so that he could recieve treatment through an intensive feeding therapy program at a medical facility called the Marcus Autism Center.

Although Benaiah has grown MUCH taller over the past year - He's the tallest 2 year old you've ever seen! - he hasn't gained much weight - only about 2 1/2 pounds.

When we changed from infant formula to Pediasure in January, he began to get sick and vomit every day.

We couldn't put him back on infant formula, however, because it doesn't contain all the nutrients a toddler needs, so we were stuck with the Pediasure.

Because of his low muscle tone, Benaiah is limited in the consistency of the foods he can eat as well as the amount of food he can eat since his body seems to digest things slowly.

So not only were we stuck with the Pediasure, but we were dependent upon it in order for Benaiah's nutritional needs to be met.

The vomiting reached a new level in March and he was hospitalized for dehydration and failure to gain weight.

Daddy and Benaiah taking a stroll through the hospital

Multiple tests were run while we were in the hospital but nothing was ever found that could pinpoint why Benaiah was vomiting so much.



I don't like being in the hospital, Mommy :(

 

The nurses had to wrap his hands with diapers so that he wouldn't pull out his NG tube.
He didn't mind.  He enjoyed chewing on the diapers. :)


12 days later, we left the hospital with an NG tube in and with a more elemental formula called Peptamin Jr.


I'm so happy to be home!!!


Unfortunately, Benaiah continued to get sick, even with the NG tube and the new formula.

And that's when we heard the dreaded word:  G-tube

A G-tube, or gastrostomy tube, is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow.

G-tubes serve a great purpose, but my "Mama gut" told me that this was not for my son...not right now anyway.

Doug and I began researching ways to avoid getting a G-tube and ran across several websites about Feeding Therapy Programs and how they aim to help kids with G-tubes become independent of them and how they help kids avoid getting G-tubes by helping them gain the skills they need to recieve most of their nutritional and caloric needs from food.

There are only a few of these programs around the country.  The program at Johns Hopkins and the one here at the Marcus Autism Center were the 2 that I was most impressed with, so it was a pretty easy decision to choose the one in Atlanta since it's closer to home and we have family and friends who live in the area.

Then the work began....3 months of doing paperwork, waiting, getting rejected because of insurance complications and an infamous "contract" that would never get signed, more phonecalls, phonecalls, phonecalls, waiting, rejected again, phonecalls, phonecalls....

Finally, we had to get our attorney involved in order to reassure all parties that the documents that were written and signed do ensure that money will be paid for services rendered - because it's not about Benaiah's health, but about whether or not payment will be made, right? Ugh! - and we finally got a start date of August 19th.

And that's how we got here!

Stay tuned to find out how things are going.... :)