Saturday, May 18, 2013

Can't Crack the Code: Week 3 Feeding Therapy

David's first baseball game sat through 9 innings
They are starting to see what we have always seen, very few swallows. 

Every time David sees a new feeding therapist they are so optimistic during the evaluation.  He accepts foods, he puts food in his mouth, he sits through a 40 minute session.  If he gags and chokes, he tries again.  They all think it is going to be so easy. 

Well week 3 they had a team meeting and the result is the team is growing.  His first therapist at the Clinic is moving at the end of the month so we are getting a new therapist that works with kids with Down Syndrome, but wait there's more.  They are bringing in a third therapist who is certified for vital stim. 

They want to examine all possibilities through the therapy program which will go into week 6 and possibly 7.  Then if he still is not actively swallowing they will be looking for some much rarer possibilities.  This is wonderful news, why....they aren't giving up.....they aren't recommending continuing the same treatment for another three years with no results.  They appear determined to get to the bottom of this. 

I can't wait to play this through until the end.  This is my idea of possible outcomes: 1) he begins to swallow 2) he gets diagnosed with something new (repairable or not) 3) they never figure it out. 

The bottom line is I will feel at peace that we have done all we can do before we go back to our "normal" lives.  We can go on our family trip to Hawaii in July and David can start preschool in August.  And through it all he will be nourished one way or another and grow big and strong; goal met.

David checking out his new preschool at the local elementary school

Friday, May 10, 2013

Intensive Feeding Therapy Week 2

The schedule is really difficult. Monday 10-12 and Tuesday through Friday 11-12. Add travel time 45 min each way. Add Friday appointment with nutrition and gastrointestinal doctor. Now if you are really crazy keep working 20 hrs a week (usual is 30 hrs). Hubby has taken one day a week which really helps me mentally.

The first week was really getting to know David. He has an occupational therapist and a speech/feeding therapist. They needed to see his reaction to foods, approach, touch, people, praise, etc. He is already use to seeing 5 therapists a week and numerous teachers at daycare so he is very receptive to new people, therapy, and following directions.

The therapists observed what we have always known ....he won't swallow. So they are really working on the mechanics of moving food to the back of the throat and making the swallow happen. We focus in Beckman Oral Motor Skills, a series of stretches to the face, lips, and mouth. We work on cues for lip closure, moving tongue to the roof of the mouth, tongue movement in general, and biting/chewing.

We are making tiny improvements which are only apparent to us. From the outside looking in he still can't eat. But from our side he is learning new skills and the mouth is moving differently. An added bonus just might be some better articulation.

Looking forward to the next few weeks for more tiny steps or should I say bites.
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