Posted in Hershey Feeding Clinic, Kids

Ethan’s Story

As I wait for Ethan’s bus to pull up, I thought it would be a good idea to talk about him today. He was Baby “C”, tying for first in weight at birth at 1 lb 11 oz (with Bennett). He was–and still is–the most active of the kids, constantly moving around and kicking. Now he spends his free time at home jumping on his mini trampoline. He used to jump in one of those “johnny jump up” things that hung in the doorway. Born in late August, we found out he was totally blind in November. I remember not sleeping that night–just laying awake unable to do anything other than stare at the darkness and pray and cry. The next day I went to the NICU and cried and cried. It continues, even, sometimes ,to be a journey of acceptance of the “new normal” with his blindness.

He came home in January, the last of the three. He was on oxygen and a LOT of medication, and from the very start had issues with eating. In March we took him back to the hospital because he was down to eating 6-7 oz PER DAY. They inserted an ‘ng’ tube (naso-gastric, from the nose to the stomach) and he became a very cranky and miserable baby. Two months later, we finally had a ‘g-tube” put in, which went directly to his stomach. Overnight he became cheery again. But he still didn’t eat.

Around 2 1/2 years old or so, he started to eat some baby food and has since progressed to mushed up microwave meals, oatmeal, yogurt and the like–anything that doesn’t require chewing. He doesn’t know how to chew or move his tongue side to side to move the food around. The food literally enters his mouth and goes down his throat.

He continues to get night nursing to handle his tube feedings. Although he eats by mouth during the day, it’s no where near enough calories. So, our summer this year will include a trip to the Hershey Feeding Clinic where he and I will live Monday through Friday and they will teach him to eat. Hopefully enough to get him off his tube feedings. He will miss most of his summer school program, which I am sad about, but this is very VERY important.

It’s going to involve a huge sacrifice on the part of the whole family. Bennett, Laura and Catie will be in full day camp at the YMCA and without their Mommy five days a week. Jim will essentially be a single father, doing both his job and mine. I will be away from three of the kids and my husband for a long time and working very hard up at Hershey with Ethan and the staff. I imagine I will be very lonely. We’re going to set up some sort of webcam system for me to see the family and vice versa.

This is very clearly a situation where attitude can make or break it.

Please keep Ethan and all of us in your prayers. Right now the hardest part is the insurance company and the state Medicaid system. I’m trying my best to work within their parameters, and within their crazy “talk to this other department” system. It’s been very draining. But still, very worth it in the end if Ethan comes home at the end of July able to feed himself and chew and not need tube feeding at all or hardly need it.


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