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.

November 2, 2007

Sunday, June 6, 2010

Well -- lots of little things. We learned from the interim speech therapist that Michael does NOT have an oral aversion. He wants to eat, but he really can't. He has an uncoordinated swallow because he lacks the correct muscles to pull things together. He managed it when he was smaller, but it gets harder to manage the bigger he is. So, now we have an elaborate mealtime routine to make him THINK he is eating, and he seems to be responding well to it. The good news on that front is that we should see a dramatic improvement after his palate surgery.

Funny thing ... we spent a few days trying to wean Michael from the "dumb green hospital pacifier" onto a more socially acceptable (Mickey Mouse) brand. Now the speech folks tell us that for Michael's unique physiology, the dumb green one is preferable. I hate the green one. (If you couldn't tell already.)

Adam and I also got training on Gtube replacements (!) (So now it will never happen again, right??) It turns out that the manufacturers recommend checking the water in the balloon that holds the Gtube in place about once a week. (So much I didn't know!) They checked it at the doctor's office earlier this week, and guess what -- it was only half full! Where did all the water go? Thankfully, they refilled it for us and it should be good to go for awhile again.

And, here is the blow of the week. Michael's regular day shift nurse has to take a training class for her other job, and she will be leaving us as the regular nurse starting two weeks from now. Michael, Adam and I are heartbroken and we don't know what we will do without her. Just when we feel like things are finally getting stabilized ....

Well, we need to roll with the punches and keep our chins up. What I can't figure out is why the little things feel like the heavy things. I think it is because the big things are too big to think about.

Thanks as always to all of you for keeping us in your thoughts and prayers.


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