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So you want an update?

04 Jan So you want an update?

Posted at 03:51h in Uncategorized by
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Well, I guess since my last substantive update was over a week ago, it’s probably time for a little catch-up.  Luckily, there’s not a lot new to report!  We were very blessed to spend our Christmas home and with our families.  Keegan and Audrey both received more than their fair share of toys!  Although the type-A organizer in me secretly (or not quite so secretly now!) loves the post-Christmas purge and clean!  It is good that Keegan received some new things though…looks like he will be putting them to good use.

Keegan was supposed to start back at school tomorrow, but he won’t be.  First, we are still waiting on the results from some labs we sent out right before Christmas that will give us some guidance on how the new immunosuppressant is affecting him.  This particular drug is meant to completely wipe out the immune system during the transplantation surgery itself or during an acute rejection episode.  From a long-term suppression stance, we don’t want or need his immunity that low.  So not only are we waiting to see where he is at the moment, but his team has to do some thinking to figure out exactly what they are looking for and how to get there.  Until then, he is on lock-down once again – nowhere but the hospital and therapy appointments.

Second, he is still on 20 hours of tube feeds a day.  We still need to concentrate that to less hours off the pump and get him eating a greater variety of foods orally.  Frankly, right now he just isn’t that interested at the moment.  He also can’t handle much besides crackers, fruit, and veggies yet.  We tried some meat last week and a little peanut butter yesterday without success.  It’s going to be a long road for sure.  He started back in feeding and speech therapy today, so at least that will be one way to keep a handle on things and get him out of the house a bit.

Other than that, Keegan is doing alright.  He has been off TPN since Christmas Eve, which has been so lovely.  We’ve had a nice little break from appointments other than a weekly weight check and chat with GI.  He has been in a pretty good mood despite everything.  Today he looked a bit puffy, especially his left eye.  It’s probably nothing, but we are watching him closely as always.  He has a big day next Thursday with a full cardiac work-up and nephrology appointment. 

In more fun news, we received this in the mail last week!  The Cowboys published a two-page spread of the picture of Keegan and Tony Romo in the game program from December 19 against the Redskins.

Just love that picture…it’s so much funnier when you know how absolutely miserable he was before and after that little moment with Tony and Miles Austin.  There was also a smaller picture of Keegan and I with Mrs. Jones in the back in an article about all the holiday happenings the Cowboys participated in.
Miss Audrey has been doing well too.  She started some finger foods and just loves to sit in the high-chair “eating” while Keegan is at the table eating his food. 
She also is loving spending time with her Daddy.  She bundled up with him to go on a walk on New Year’s Eve.  And he sure can make her laugh…(too bad wearing her Baylor gear for the bowl game didn’t help us at all!!)

Thank you once again for your love and support for our family.  We certainly hope you all had a wonderful, safe, and relaxing start to your new year!  2010 was filled with so many blessings for us, and we pray for more in 2011 for our family and yours.