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May 26-Jun 01

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Tom is regularly eating at least two meals a day with us and we're all enjoying that tremendously.  He still gets breakfast and some hydration via the feeding tube, mostly because we don't have time for him to actually eat breakfast before therapies or else he's sleeping in.  Liquids and soups all require thickening and hard, crunchy things are not yet on the menu, though he recently shared pizza with us.  His appetite is very good and portions are growing slowly, as the eating process takes some time.  However, his appetite for sweets has soared back to normal (or beyond).  I often joke that I need to treat him as I did the boys when they were young: "you've got to finish your dinner before you get to have dessert"!

Now that swallowing has progressed, the speech therapist is working with Tom on improving clarity of his speech.  Current work is on the "th" sound which is particularly difficult.  A favorite home exercise activity is for us to guess a word or phrase that he is saying without any conversational context.  We have some good chuckles when I can't understand him and repeat back the gibberish sounds that I actually hear.  Tom's breath support has improved tremendously, so he is able to express an entire thought in a breath, but not always with sufficient clarity.  His therapist is encouraging that there are times for using short, concise phrasing, eliminating the "fluff" words, when he needs to make a need known or get a point across.  The other evening he said "Would you please...", then with a mischievous gleam in his eye, "no, those are fluff words--MAKE ME COFFEE".  After a good laugh, discussion ensued on our different opinions on whether or not "please" was a fluff word...

Walking with the walker is going very well, though still requiring a spotter for safety.  Tom's balance and gait have improved tremendously and with that, his confidence.  He can now stand briefly without holding onto anything.  We call one of his home exercises "choir steps"--standing at the sink, then putting hands at his sides, stepping to one side, then bringing the other foot to meet the first.  A few weeks ago, he struggled to do one of these without needing to grab onto the sink; now, he can do a few in a row.  Another home exercise is bird-dogs:  down on the floor on hands and knees, then lifting opposite hand and leg outstretched.  I can hear some of you saying "I can't even do that!" so Tom is challenging you to join him--and these are very good for core strengthening for all of us.  When he started, just getting to the floor safely and staying on hands and knees was strenuous.  Then he progressed to lifting just one limb at a time, balancing tenuously.  Now after the single limb warmups, he's doing several full bird-dogs on each side.  Occasionally, we have a tumble, reminiscent of a good game of Twister, but progress every week. 

Oh, and speaking of choir, just wanted to let you know that, while not directed at the 40+ folks in the choir, Tom's keen ear and need for improved performance are alive and well, leading to many corrections directed solely to my singing in church: "you don't need to hold that note so long", "those two notes are the same", "you shouldn't sing the alto line unless you are sure that she's playing that version", and on and on.  Some habits will never die regardless of circumstance.

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