Day 30 - MMI

Yesterday Eisley and I spent a long 3 1/2 hours at Munroe Meyer Institute.  MMI is affliated with UNMC and works primarily with kids and adults who have developmental disabilities and genetic disorders.  Eisley is already on the waiting list for the speech clinic, she won't start until age 2, but it's good to be on the list.

This time our visit was to the Pediatric Feeding Disorder Program.  Run by a psychologist who came to MMI a few years ago, they have a very different approach to feeding than many other programs.  We feel very fortunate to have this available right in our own home town. 

The evaluation consisted of several meetings with a dietician, coordinator, GI (for medical clearance), a feeding "demonstration" on Eisley's part and a final meeting with a psychologist.  We also got a chance to see Eisley's speech therapist from the NICU - the benefit of being a repeat customer!  After watching the eval, he felt Eisley's feeding issues were just as much physiologic as they are behavioral - not sure if that's good or bad.

The meetings were nothing more than interviews of history and current condition etc.  For the feeding demo, we were in a small room with a one way mirror - they video tape each session.  We brought some preferred (squash and green beans) and nonpreferred foods (peaches and bananas) with us.  First I fed Eisley that just as I would at home.  Then they brought out rounds of baby food, pureed foods and liquids.  For each round, I gave her 5 specific size bites, allowing 30 seconds for each bite/drink.  Everything was weighed before and after to note exactly how much Eisley took in.  Oops - forgot to weigh the bib before the liquids, most of it that she took from the bottle ended up there.

Yes, they're watching you this close!

Finally, we met with a psychologist for a summary of her eval.  Preliminary reports show Miss Eisley to be a perfect candidate for their program.  The intensive program is just that - intensive.  Eight weeks long, M-F, 9-5.  Then she would graduate to the outpatient program, starting at 1 hour weekly, for approximately 22 months.  He also had some answers to common questions:

• I only have to be there the first 3 days and a few days at the end of the 8 weeks
• No, they won't force feed her, but she will not like the process, especially at the beginning
• They will follow up in the home or have teachers/day care providers come in for training as well
• Hunger is not used to get her to eat, if that worked, Eisley wouldn't need a feeding tube anyway
• They are very goal oriented and are able to reach 90% of goals set for clients

It will take a few weeks for everyone to finalize and submit their reports.  Then we wait for insurance approval - a must, since the price tag is pretty hefty.  Although, the coordinator reports past experience is favorful with our insurance company. 

I have a lot of mixed feelings about this whole thing.  We have been focused on Eisley's feedings for all but the first couple weeks of her life - when we had much bigger things to focus on.  Some days we work really hard and some days we are just plain lazy.  Lately I feel like I am up to my chin treading water trying to get everything done with our family - and I'm not a good swimmer.  How are we possibly going to be able to add this in and give it the attention it needs?  Who or what will suffer because of it?  Maybe it's just flashbacks of trudging up to the hospital every day.

On the other hand, this is what we see as best for our girl.  When it comes down to it, we will do whatever it takes.  It's wonderful to potentially see an end to this feeding struggle - even if it's two years away.  I didn't earn my college degree overnight or even in a few weeks.  The surgeon who repaired Eisley's heart didn't develop his skills without hard work and perseverance either.  This too, we will overcome.