Friday, May 22, 2009

Since I last wrote

Ok, it's been a while since I wrote so I'll give you a long winded update:


Ethan needed this feeding program.
Ethan's doctors and therapists said Ethan needed this feeding program.
Ethan's insurance company did not want to pay for this feeding program.
Mark's employer told the insurance to pay for this feeding program.
We are now at this feeding program and
We are very glad to be here because it has been 3 years since we learned Ethan needed the program and five months since we thought we were leaving for the program.

Our trip to Baltimore, MD:

Ethan and I left Cincinnati last Saturday morning (5/16/09) and drove all the way through to Baltimore. We had great weather, little traffic and Ethan was good on the drive. We stayed in big puffy, cozy beds at the Columbia, MD Sheraton on Saturday night. Sunday through Tuesday nights were spent at cousin Mary's house in Columbia. Totally cute house! Thank you Mary!

We, quite unexpectedly, got into the Baltimore Ronald McDonald House on Wednesday. We throught it would take weeks, so this was a nice surprise. We are now settled in and our address for the next 8 weeks is

Ronald McDonald House
635 West Lexington Street
Room 206
Baltimore, MD 21201

Three moves in 5 days took their toll, but we're settled now.

The Feeding Program:

Ethan started into the feeding program on Monday, 5/18. The feeding program is an 'inpatient' day treatment program. Ethan is admitted to the Kennedy Krieger Institute, part of the Johns Hopkins Medical Campus, but we only have to be there all day Monday through Friday for 8 weeks.

The program is an ABA (Applied Behavior Analysis) based intensive feeding program. Ethan takes 3 one hour meals per day here and has Speech Therapy, Occupational Therapy, Behavior Therapy, and Playroom 'Therapy' between his meal times. The meal times are actually the most intensive therapy sessions of all.

Ethan eats food, is growing, but is considered to have a severe feeding disorder because he eats a very limited diet (maybe 10 different food items) and is extremely adverse to any new food. Read that as 'Ethan fights, screams, cries, gags, and spits when presented with a new food or sometimes even with a known food item.' Mealtimes at the O'Briens are not much fun.

This program looks at all the reasons why Ethan has trouble eating. As far as we know, his sensory processing disorder (doesn't like to touch several textures, may have trouble with some smells), cognitive delays (He's 6 but thinks like a 2-3 year old), significant medical history (lots of airway surgeries & procedures), oral dysphagia (mouth muscles don't work like they should), esophageal dysphagia (a rouge artery is pushing into his esophagus), and some other issues I can't recall at the moment, are all contributing to his eating issues. The fact that he is mostly non-verbal (he doesn't talk) hinders our knowledge of WHY.

So far in the program we've covered his typical feeding habits, experimented with swapping out some known foods for unknown foods, (I did the feeding) and started into the intensive feeding therapy (trained specialists do the feeding). Ethan has moved from screaming and fighting, crying and gagging for an hour straight at a meal to an eerie calmness where he merely stares the feeding therapist down with clenched teeth for an hour. I believe his caloric intake (they measure EVERYTHING) is something like 15 calories total for the week of intensive feeding therapy. Considering that I can take in 15 calories by merely smelling a food, you get the idea.

The Johns Hopkins cardio docs here are also taking a closer look at the rogue artery that is pushing into this esophagus to find out how much of an impact this is having on his feeding. The Kennedy Krieger therapists will also being performing a new swallow study (it's an xray thing) to find out if his airway is being fully protected when he swallows.

We miss home and everyone there! Take care and I'll write more later. Mark gave me a new camera for Mom's Day so I'll take some pics too.

See you soon!
Molly & Ethan

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