Friday, June 17, 2011

Two For One Deal

First a disclaimer:  This post is mostly about Ben and his Feeding/Swallowing evaluation, but the only pictures I have around are of Anna.  And as I have mentioned, who wants a post without there you have it.  Hope no one gets confused  ;)

So Ben's evaluation was yesterday.  Basically went well.....there were a few minor meltdowns about what chair to sit in while eating and who/how his yogurt would be stirred.  (Part of the evaluation was watching him eat). It was informative. It is funny I leave most doctor offices annoyed at how I generally know more about what is going on then the doctor does.  But I never leave CHOP feeling that way.  I truly trust their expertise.

up close and personal
*taptap* anyone in there??

So they did, afterall,  recommend the Day Hospital program for Ben.  I went into the evaluation pretty adamant that I would not do this program with Ben, that it was more than he needed.

They made a few important points though.  1.  With Ben's shyness a once or twice a week outpatient behavioral therapy program would mean that most of each session would wind up being spent re-establishing trust and a comfortable atmosphere between Ben and the therapist leaving very little time for the actual work.  2.  They didn't consider Ben's eating problems to be "behavioral", but rather "learned".  Based on the history I provided they felt he has had eating issues basically from birth and that his chronic constipation and eczema and diagnosed food allergies is just proof that something is not quite normal in his GI system.   3.  Ben lost the two pounds he gained last month and was back down to 26lbs.  He is not taking in enough calories to maintain his weight WITHOUT strictly adhering to the three Boost shakes a day (which we haven't been good about the last few weeks because we were away for a long weekend and just other things going on).

every little girl is a princess!

But the biggest factor that convinced me to go with the Day Hospital program was that they thought it BEST to have Anna and Ben go through the program  TOGETHER!!!  So this alleviates my worries about what I would do with Ben during Anna's 4 weeks of therapy.  Also they will be trained to eat TOGETHER.  With just Anna in the program after the four weeks she would have to be fed seperately from the rest of the family.  With them in the  program together they will always eat together and so eliminate the stress of separate meals for them. 
The only snaffoo is that Anna was supposed to be starting therapy on Sept. 20th, but of course there is not a place in the schedule then for Benjamin!  So now therapy is being pushed back further to mid November (in fact right during Thanksgiving....BUMMER!).

And the last hurdle is they will likely want Ben to also have an endoscopy/sigmoidoscopy like Anna did to rule out any GI issues they may have missed through the labwork/Upper GI.  Because he has known food allergies they are especially concerned that this be checked before he is admitted for therapy.  So our call is in to the GI to talk to him about that.

And we march on!


Allison said...

Love the photos.

Glad they can do the program together. That just seems right. Is it possible they may have an opening before November? Or do those things just never happen?

You are a trooper thru all of this. God bless!

Jamie Carin and Claudio Romano said...


Yes we are on the wait list for an earlier date and my experience with CHOP is that things often I am holding out hope for an earlier date. We have been waiting to start this therapy since Dec. 2010!! So by Nov we are talking almost a year wait due to various things delaying us!

Katherine T. Lauer said...

Very interesting! So, why would the child(ren) who goes through the therapy have to eat separately from the rest of the family? And will that be the same now that they both go through therapy? Will that mean that you'll feed them dinner first, and then occupy them while you and Cla eat dinner?

Jamie Carin and Claudio Romano said...


The reason they eat separately at first is because it is a really regimented system and I believe they have to eat certain foods prepared a certain way and everything must be recorded and measured. Also they want no distractions at mealtime. It is called a "bite" system and the child has to take a certain number of bites of each food and often it is in a certain order and bites taken must be rewarded and bites not taken get negative reinforcement etc. So it is this whole system we will be learning. In the follow up after the four weeks they will be slowly trained to reintegrate into normal family mealtimes, but how long that takes totally depends on the progress and needs of the child.

With both children able to eat together I am not sure if Cla and I will have to eat totally separately, probably yes just because it is such a detail oriented thing that it will be just easier to eat after them. And occupying them is not a big deal. The dining room is right next to the living room so they will happily just play around us (Cla and I are often at the table a lot longer then they are) or in the living room etc. That is the least of my worries.