Tuesday, June 4, 2013

Feeding Therapy Weeks 4 and 5

So week 4 we saw our feeding therapist for 5 days in a row then came week 5 we saw her for 1 day, her last.  The goal was 25 sessions in 5 weeks; we ended with 18 sessions in 5 weeks.  So we have 7 more to go over the next two weeks with a new therapist.  This is not because we missed a single session, our therapist had other plans.  So I am not sure how intensive it is 5 days week 1, 5 days week 2, 2 days week 3, 5 days week 4, 1 day week 5.  Let's say still no real progress.  We are stuck at more or less the same place.  We have better lip closure, better tolerance to brushing teeth, we have better utensil usage.  But he still doesn't swallow, he still does not have a food or drink that he likes, he still will not take more than 3 tastes of any food before he signs and says "all done".  

We do meet with the same doctor every week and we are exploring our options.  Trying to get enough swallows to do a swallow study not for aspiration purposes but to see what is going on with the swallow.  This is a remote possibility.  We are going to trial vital stim for one week to see if he can tolerate the procedure.  If he does then we will be on the wait list to start in 6-12 months.  It would be therapy 4 times a week for 6-12 weeks.

The last option the doctor presented is the inpatient feeding programs offered at CHOC (Children's Hospital of Orange County, CA) or on the East Coast.  More or less a behavioral psychologist feeds your child for 6 hours a day presenting a spoon or cup until they take a bite or drink then they get a reward....for 6 hours a day.  We are not sure David has the mechanics, motor planning, or capability to swallow how can I put him in that situation?  I gracefully declined and said that would be something to explore in a few years, maybe.  I forgot to mention leaving Zac and Daddy and living in a hospital or a Ronald McDonald house for 6-8 weeks. 

I am not even sure how happy I am to be finishing this program.  It has caused a lot of stress on our family. It is a huge time commitment.  It impacts David's naps every day which makes him very unhappy and tired.  It has led to more food refusal at home as far as tasting food and trying new things.  It has stressed me out and pushed me to my limits of balancing work and home.  It has led to many discussions between me and my husband some very intense.  I do feel there is no respect for the commitment made by the family, there have been some late cancellations, there are many hours waiting for the doctor to see us, and quite frankly we still don't see the benefits of the occupational therapy component (a whole different story on that later).

The pluses are knowing we are doing all we can do.  Having a team try to work through ideas with us.  Being taken seriously by the medical community that this is a very real issue.  Hubby and I really ending up in the same place at peace with the feeding tube but still working towards our goal of David eating (not his goal clearly).

My parting random thoughts for today.....it is easier to accept my child has Down Syndrome.  It is not common for a child with Down Syndrome to be 3 and 100% tube fed not showing active swallowing and no one can explain why, when, if, nothing.  He perplexes so many people and that is not comforting.  I am an engineer 1+1=2 every day of my life.  The "practice" of medicine still drives me batty.  I haven't fully embraced the feeding tube even though I really, really want to.  I love my child to the end of time and am thankful everyday that we have him on this earth.  He amazes us every single day with all of the things he can do.  I often underestimate his many abilities. Trying to keep my sanity. 

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