Thursday, September 17, 2009

Finally rested and rearing to go

Well we finally got our first GOOD night of sleep last night.  Got all the kinks worked out with the nurses coming in and so forth and Carsten slept like a charm and I did too.  So here we go on day #4, only 52 to go!  Carsten's feeding therapist is AMAZING, I really really like her and can't say enough good stuff about her.  She's actually a behavioral psychologist.  Believe it or not, all kids are fed by behavioral psychologists here.  Then they get OT, PT outside of feeding sessions.  Basically they all work together in the most harmonious way I've ever seen and are all constantly communicating with each other. The OT and speech therapists let the psychologists know when they're ready for more texture, etc.. based on assessing and working on their oral motor skills.  Carsten gets speech and OT three times a week plus his three meals a day with the behavioral psych and they are also putting in a PT referral for him. But the program is VERY psychologically based, it's so interesting, reminds me of my psychology classes in school.   Then between sessions we go to the awesome playrooms which are supervised, ahhh, supervised, which means momma gets a break every once in a while.  But by the end of the day we are EXHAUSTED! 

So, today they are making some big changes with his eating schedule.  He's not going to be fed any formula through his tube AT ALL during the day .  Then tonight we will start running his pump into his intestines all night long so he still gets his formula at night.  The goal is to increase hunger during the day but maintain nutrition.  It's going to be hard for me just getting through today knowing I can't feed him but he will still get his three meals then start the pump tonight.  When they start pushing volume during the day they will SLOWLY decrease the pump feeds at night, and voila, that's how they wean them from the tubes. 

Our BIG problem is drinking.  They want him to learn to drink from a cup and he's been drinking from a straw for almost a year now.  The problem is it's hard to get the volume and measure with a straw so we're going to an open cup.  He has a lot of trouble with figuring out what to do with his mouth and and his tongue gets all in the way.  So, the OT and speech will be working on that and letting the feeding therapists know when he's ready to do open cup drinking. 

That's about it for now.  Breakfast went great, just trouble with the open cup, but he's taking all his bites.  They have all these terms I've never heard of before but apparently we're still at baseline treatment where they're taking data and determining how compliant he will be with his bites.  There are two people in the treatment room when he's eating, one feeds and the other has a computer and takes data.  I will try to take some pictures if I can.  Got to go grab him and take him to OT and speech.  Will update again later.

Blessings,
Carsten's feeding coach:)

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