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 11, 2007

Monday, May 31, 2010

Well, life is full of challenges, isn't it? Michael is doing well during this illness. We are quite proud of him. He is breathing fine and staying cheerful, but he has given up eating by mouth. It is frustrating and heartbreaking for us, and we are afraid that it is the beginning of an oral aversion that we will be spending years, if not his whole life, dealing with.

It may seem odd to know, but eating by mouth is a skill that if not used when very young goes away. Some kids with feeding tubes end up with a lifetime aversion to food and things in their mouths. Hopefully the speech therapist the County is sending out will be able to give us some ideas.

On to the childcare side of things. We have been so far unsuccessful in finding a nanny. We had several interviews, and a couple of great candidates. But we've been turned down twice by nannies we wanted to hire, and once by one we weren't sure about. For two of them, Michael was simply to scary to care for. One of them was even too afraid to tell us that while she was here, even though we asked her directly three times whether she was okay with the medical stuff or whether it was too much. Adam and I were really hoping to get someone in the home this month so that they would be comfortable to sail forth on their own starting in January, but we are starting to lose hope a little. The nanny agency has been helpful about it, but they are hearing from the nannies that because Michael has "medical issues" that we need to be paying more than we are offering. Adam and I don't want to be stingy, but we really don't agree that we are so far out of the right price range. After all, for the first several months, they won't be caring for him by themselves .... and he will be getting better and better as the months go on.

Which brings us to the nurses. The precertification of our nursing care ends on October 25. The recertification process begins on October 15. I'm honestly not sure what will happen, so I won't speculate. This, too, is frustrating and painful.

But, in the end, all we can do is be patient and trust that things will work out. After all, as one of my favorite authors often says, "The world will go as it will, and not as you or I would have it."

Adam will be in Front Royal this Saturday at the annual Fall Leaves Festival, taking our little craft booth on the road again. Please stop by and see him. We have not yet decided whether Master Michael will be making the trip separately with Mom, but he might be if the weather is nice. It is a long car ride for him, and we can't stay too long, but we love these things and want him to be a part of what we love.

Anyway, come on out and catch some of Adam's Hallowe'en pillows and get a head start on your Christmas shopping.

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