Ugh, the leak in Damiens feeding tube has definitely worsened and has a lot more output then it did Friday:( praying we can avoid a trip to the ER and an admission... This is literally the bag that is taped to Damiens belly. It cannot come off until the hospital gets his size tube in stock. Damien HATES it and I hate it for him. It takes a lot of tape to keep it secured and must be changed several times a day, which is causing his skin to become red and sore. He cries every time and says please dont hurt me :( While I am eternally grateful for all the medical advances that allow my son to not only survive- but thrive, sometimes I wish we didnt need them. Sometimes Id just like my baby to be. Normal. To be like every other 5 year old little boy, running after a baseball, digging in the sand and having Sunday play dates. Instead, our days are tubes, medicines, therapies, and treatments. I long for normal and boring but I know God planned so much more for Damien. He is changing the world through his story. He is saving lives! Instead of normal, He gave us extraordinary. He gave us a miracle and who can argue with that.
Posted on: Mon, 22 Sep 2014 01:07:27 +0000
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