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Is This Real Progress? -- Originally Published February 13, 2008

Tuesday, August 17, 2010

Well, cross your fingers. Michael seems to be making some real steps forward in the past few days. As is almost always the case, some of these will prove to be false alarms (which we are sadly getting used to), but some of them are surely real.

In the evenings, with Daddy (and sometimes Mommy), Michael can get up to 1/2 an hour with his PMV. He is seldom happy, and often cries, but we were evaluated by a different speech therapist with experience in the area, with good news. She had planned (after hearing our struggles) to come in and tell us that he needed to put the valve AWAY and not use it for a few months (hard, given that he needs practice in anticipation of maybe having a cap soon for a decannulation test in April ...) BUT, after having seen him, she decided that he needs to wear the valve MORE, not less. He does struggle with it, and tenses up, and isn't happy, but he isn't suffering any physical harm. Hopefully he will soon calm down to engage with us when he wears the valve. Currently, he only calms down to Bunnytown or similar distraction. Maybe soon he will even take a sip or eat a spoonful with the valve, which hopefully will help with his swallowing difficulty.

Which brings us to eating. The ever-present struggle. This tube feeding is in many ways a bigger handicap then the trach is because it interferes with being able to take Michael out in the world in a normal way. We always have to plan around this huge obstacle about how to FEED him while we are out. So, we don't go out much, and we come back quickly.

I mentioned last time that meals were taking up to two hours. Well, we figured out how to hook up the feeding tube to a bag (a bag that came with the food pump that makes him throw up) that we hang on an IV pole, and it drips into Michael's stomach. While that is going on, we can try to feed Michael a bottle and his baby food, so he gets the association between eating by mouth and a full stomach. Plus -- Michael can't kick the tube anymore, we have our hands free, and the whole thing takes a lot less time. Minus -- the bag doesn't have an outlet for air like the tube does, and gassy Michael can back up the system until it runs out his nose if we don't watch him carefully enough. (So pleasant.)

BUT, it looks like the effort may be working. Michael was really fussy last night and couldn't stay asleep as his last meal time was approaching. (We often feed him in his sleep.) He threw his pacifier on the ground (forcefully) twice and started crying, while making "hungry" faces. So, in the spirit of infinite optimism, I grabbed a bottle and offered it to him. Amidst the tears, he grabbed it from my hand and shoved it in his mouth and began sucking. Now, he didn't do a very good job at it, and more than a little bit of it dripped out his mouth, but he wouldn't let me take it away until Daddy managed to drip enough food into his tube that the owies in his tummy went away. It looks like we are FINALLY beginning to make some strides.

I don't really think there will be huge strides in eating until the trach is gone, at which time either Michael will figure out this swallowing thing when the air pressure in his throat is restored, or ... he will increasingly get his calories from solid food, as will be age appropriate for him by then. I think this is still a long road, as we have seen Michael grab for bottles before to have it amount to nothing after one small burst of fun. But, having him ask for a bottle when he was clearly hungry -- now that sounds like real progress.

Well, out of space again. Love to you all.


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