quick update...

Wednesday Carrie brought us a new walker! Owen did such a good job! He LOVED standing with it. You could just see how pleased with himself he was. He even moved his legs forward a few times! He loved showing off by letting go (leaning against the walker) to show us "So Big!" I posted a video of some of his first efforts. You even get to see him get frustrated, showing off his new screaming skills. Also notice half way through when he gets mad at Carrie, he starts slapping her hand No No. Not cool, but kind of funny. We are so trying to put an end to these screaming boughts and frustration. We are working harder on signing. I think he is mostly frustrated in his communication skills. He just glows when he can do a sign or point to his nose and "communicate" with us. (I also posted a video about that. the links are on the links page. See LINKS above.)

We go back to Riley on Monday for our final post-op palate check. should be cleared for all things normal. We also managed to get a last minute appointment with the feeding specalist (otherwise known as the "Cheetos Lady") I am having a lot of concern that he won't take much liquid from a cup. Sometimes I see no possible way we will ever get off the feeding tube. (I know we WILL, I guess I just don't see HOW.) I was so desperate last week that I gave him his Haberman bottle back. I was beginning to get concerned he forgot what what it was like to have liquid in his mouth—that was how bad he was. Believe it or not, he didn't even know what to do with the bottle. He wouldn't hold it, didn't like it, couldn't work it. This was the kid who LOVED his Haberman. I couldn't believe it and was more desperate than ever. that's the day I called the feeding lady. Hopefully she will have some suggestions and things to try.

Since I called he has improved. Julie, our speech therapist, had a few ideas Thursday which are helping. but it is slow. I'd say he MAYBE takes 1 oz a day by mouth. I have started waiting to give the feeding tube until after he has eaten his fill of food in an effort to increase his food intake so his dependence on the tube can decrease. I guess my main concern long term is that he can take enough liquids to stay hydrated and avoid constipation (a common spina bifida problem). Here is where his SB and cleft issues collide. I know it will all work out in the end, and years from now I will look back and laugh because he'll be drinking so well, but sometimes my human shortsightedness and lack of faith get in the way of what I KNOW: God is in control! It is good to remind myself of that!

Owen is learning new sounds too. Ya Ya is his latest.

Well, I need to get ready. We are going to hear Tony Dungy speak tonight with Eric's parents! fun times. Enjoy the photos and videos.

Oh, I almost forgot the coolest thing.... I asked Carrie if Owen would have this walker until he is 3 (since she is loaning it to us and I wanted to know when I'd have to worry about buying one.) She said, "Oh, he won't be needing it by then." WHAT!! yeah, she sees know reason why not to expect him to be walking independently well before then! Shame on me for not dreaming that big! How cool is that thought!

hugs,

jen