Thursday, January 28, 2010

Last Journal Update

Once again, I find myself apologizing for the lack of posts. It’s not been for a lack of activity, that’s for sure. Keegan’s had his fair share of therapy, doctors’ visits, his monthly breathing treatment, and lab draws. He’s also had his fair share of playing outside in the sunshine, enjoying warmer weather, and even seeing a few of his neighborhood friends he hasn’t seen in awhile. We just haven’t necessarily had the time or energy to sit down at the computer these few weeks.
We’ve changed up our approach to Keegan’s feeding therapy. Due to his improving absorption of his tube-fed formula, we’ve been able to reduce his daily volume by about 2 ounces. It doesn’t change much now, but we’re hoping in time to reduce the volume more and increase his appetite. We’ve been blessed to receive some guidance from our transplant dietician on how to progress with Keegan’s table foods. We still see a very direct correlation between new or increased volume of table foods and Keegan’s tummy troubles. Still, it hasn’t seemed to deter him too much at this point. He’s doing increasingly well with his purees and starting to eat a bit more of the soft solids. In occupational therapy, he’s really enjoying working in the “gym” on his mobility and strength. His speech therapist is a little disappointed that he’s not progressing very quickly, but it will come. He’s making a few more sounds during sessions, and he’s even said “mama” a few times (except not quite to me, yet)!

Keegan’s labs looked pretty good this past week, for him at least. All except his immunosuppressant levels. That sure led us on a wild goose chase! 9 sticks, lots of blood, too many tears, and three sets of labs. Needless to say, Gray and I are renewing our fight for a new central line for Keegan. We also had an interesting week with his g-tube. Last Tuesday, Keegan managed to pull the feeding extension clear out of his button when he was supposed to be going to sleep. This ended in stomach contents everywhere, and I sure do mean everywhere. We had to have the crib skirt and carpet professionally cleaned, wipe down walls, clorox the crib, wash too many sheets. Then sometime between Tuesday and Friday, that extension kept leaking. No one figured that out until we ended up in emergency radiology for a dye study. Never a dull moment in this household!

This should be our last post to this journal. We are hoping to transition to the new blog by the end of the week, whether it’s completely finished or not. This web address will default to the donation page. If you’re on Keegan’s email notification list or follow us on Twitter, you’ll receive notice when we’ve made the switch. If not, there will be a link on the remaining COTA donation page. And another note about the email list, the new blog will have a function that automatically sends email notification when updates are posted. To sign up, be sure to fill out the subscription form on the new blog. We also posted one more set of pictures and a new video to tide y’all over for now!

Thank you so very, very much for your prayers and support!! We just can’t explain how much it means to us. If you don’t mind, we’d really appreciate you praying once again for our little friends Avery and Carter, both inpatient yet again. Avery has been fighting RSV and Carter, a line infection. I know their families would love your prayers to help them both get home soon. Thanks again, and take care. See you on the new blog!!

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