This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

October 3, 2007

Tuesday, May 25, 2010

Greetings, Michael fans!

Well, we've been "evaluated" by the experts. We've got some work to do. No one has said the word "delayed" to me, so I think we've got no major areas of gross motor development delays. We do have some concern areas, though. Michael has low muscle tone in his torso and a tightness in his neck that is affecting his desire to turn to the left and use his left hand. He is also showing the therapists that he is using excessive energy trying to breathe ... still. Even with the trach. The torso is related to that problem. We are ... disappointed with this news and will discuss it with the pulmonologist tomorrow.

So, we will have PT twice a month as soon as therapists become available.

As for speech (what ... speech for a baby? Well, speech means "eating" to a baby) we have eating issues ... big time. As I mentioned earlier, Michel has decreased his desire, and possibly ability, to eat by mouth. The therapists think that the extra breathing effort is interfering with his ability to coordinate the eating acts of "suck, swallow, breathe". Increasing torso strength should help, I am told by other parents. They are also seeing that Michael is refusing the bottle, batting it away, when we use the Haberman. He is not fighting the Pidgeon as much, but he has the ability to refuse to make the Pidgeon work right, and that gives him a different kind of control.

So, we have a lot of work to do, and they will send someone out weekly as soon as someone is identified to work with us. The short term goals are modest -- less than what we accomplished in the hospital, but at least we have help now. We weren't crazy -- things were getting worse, and the reflux medication didn't solve it like we had hoped.

That's our news. We'll keep you posted.

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