Waiting....

......that's where we have found ourselves the past few days. Waiting for the drs. in Nebraska to discuss Caed's last blood draw. Our nurse coordinator said his CPK level was elevated. Not totally sure what that means, but she seemed a little perplexed and concerned. Todd and I are just trying to stay off WebMD.....(it can put things in your mind that shouldn't be there)....ha. So, we are waiting and praying that it is nothing.

Caed's first Endocrinologist appt. is tomorrow. It is supposed to be at least a 2-3 hr. visit at Children's Dallas. Not sure what all it will entail, but we are relieved to get this started. (growth hormone therapy) Although it has been interesting to see how BIG Caed is getting. He has gained almost 10 lbs. just this past year! (minus the TPN weight) We are seeing a "chunky" side of him that is so opposite what he has been like all his life. Not sure if it has to do with the amount of daily calories he's getting (18 hrs. of tube feeds (@ 120 ml) + everything he eats by mouth). I guess that will be a question we might get answered tomorrow.

Thank you again for all your continued prayers!!!!