Friday, May 1, 2009

The apple blossoms are blooming,

the new bees are in their hives, and spring is definitely here. Toby loves to be outside and manages to communicate this without words. It's amazing how effective body language can be and how quickly babies learn to use it to full advantage.

As hoped, his fever was gone with the weekend and he is doing pretty well. Today has been a day to sleep a lot and recover from his trip to Ann Arbor yesterday. It was a long day and wore him out.

He has been doing so well with his oxygen level that I fully expected the weaning process to start. But yesterday his numbers were not quite as good. His pulmonary team decided he is not ready for that and also to try a few medication adjustments. Maybe at his next visit, in 6 - 8 weeks, it will turn out differently. But for now, he remains on his tether.

The physical therapist he saw last week left unexpectedly for a new job. Another therapist and the student he saw last week stepped into the gap temporarily. They were able to get us started with some exercises and goals we can work on at home that are very helpful. Already today he has made progress with rolling from his stomach to back. Another thing we are working on is his pelvic muscles. He lets his legs flop out and needs to learn to bring them in and tuck them up where he can use them. It is great to have a better understanding of how we can help him.

We also spent some time with the nutritionist discussing feeding plans and goals. His weight is now 18 lbs 3 ounces which makes a nice upward curve on the growth chart. DID I FORGET TO MENTION? We increased the volume of his other feedings and cut out the 3 am feeding about a week ago. He's adjusted well, as have I. The thump, thump, thump you hear is my dance of joy about the extra sleep!

Toby is also doing a little better about tasting some different foods. We just have to come at it sideways. He did not see the occupational therapist (whose job it is to help with the feeding issues) this week but is scheduled for another visit with her next week. He still gets most of his nutrition through his g-tube. He drinks an ounce or two from the bottle quite enthusiastically, but then seems to think he's full.

All in all, progress is slow but steady. And we like where this path seems to be heading. God is faithful and good.

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