Thursday, June 30, 2011

It's seriously time to update the blog! So much has gone on that I am not sure where to begin. So let's start with the fact that Grayson is scheduled to get his trach out August 10th, which is so exciting and scary all at the same time! We knew he would get it out, but when the doctor says it out loud it really hits you that its for real! He had a sleep study back in May and that was the final test that he needed to come through to get it out and he did great! His test results from just a year ago were so much different that our doctor was surprisingly impressed! And that was the words he used! So there is no sleep apnea and his o2 levels were good so he said "I see no medical reason for him to have this trach". Those 11 words are life changing for us. We have learned to adjust to having this unnatural, stressful, uncomfortable, lifesaving tube attached to him and to imagine what life would be like without it is very strangely intimidating. I look so forward to the day that I can give him a bath and not worry about water getting anywhere near his trach, or I look forward to seeing his neck for the first time since he was 8 days old without a tube attached to it, or getting to go swimming! Wow we get to go swimming for the first time ever with him! Or that we don't have to suction out the trach, or worry that it is plugged, or that it got pulled out somehow. The fact that his neck strength will improve significantly, the list goes on and on! Life as a trach mommy is very different than anyone could ever imagine unless you have been through it. You can never let your guard down, you constantly feel like you are in protection mode, protection from anything getting in it, or anyone with germs, or cigarette smoke being near him, or people touching his hands then him putting those little dirty hands near his trach....its exhusting sometimes, but necessary. I have seen Luke (my oldest son) actually tell this sweet little old lady who wanted to touch Grayson's hand that she doesn't need to be touching him! It was halariously awkward LOL. My point is, trach life is serious, its stressful, but its also something you come to grips with, and once you get dependent on it, you adjust your whole way of life around it. And now we are going to learn to adjust to a new life again without it....and I am ready to take that on. The countdown has begun, we may be doing our last trach change forever in just a few short weeks.
So the next big thing is, we have a walker on order! This is so exciting for our little man, because we were told that he wouldn't walk. We have been using the one at our therapy center for a few weeks now, and that;s the one we will have at home, YAY. My prayer for Grayson has been that on his first day of school he would walk in that building with no trach. And well, it looks like he will! He starts school Aug 31st and by then our walker will be here and he WILL walk in his school with no trach. It doesn't look like I thought it would, but its beautiful and I can't wait to see him do it (insert proud mommy in tears here) LOL
He doesn't love the walker but he is getting better about using it, and so far he has tripled his distance and walked 21 steps in a row on his own, which is a big jump since our first time in it. He likes to walk fast, imagine that! Going slow makes him cry which is so typical for a boy:)
So as you can see God has really been at work at the Hill house, and I am so glad to keep updating so much positive, between Luke graduating high school, William graduating 5th grade, and Grayson getting the trach out, we have a lot to be thankful for. We are blessed.

1 comment:

  1. Hi I’m Heather! Please email me, I have a question about your blog! LifesABanquet1(at)