Oh friends! I know! I do! To say that I am behind in updating y’all on Cannon and our life is such an incredible understatement. You have no idea how many half finished posts I have sitting on the dashboard of this blog site…..just waiting for me to put the finishing touches on them. And how many are in my head. I have a list in a small notebook that I carry with me everywhere. One that I have been adding to….and adding to….and adding to. I add as I have ideas of what I want to write about but…..it has remained just a list and not progressed from there.
The last time I updated everyone, I told you of some HUGE decisions we had made. Decisions that would change our life quite completely. And that is exactly what they have done. Good changes. Yes, good changes. But very, very time consuming changes to say the least. Which have kept me from having the time to devote to blogging regularly. I HAVE begun homeschooling Cannon and also performing the Son-Rise therapy with him. They are both going well and I hope to give y’all more in depth analysis of both quite soon. But since this strives to be a quick update…..I will leave it at that for now.
Now for the status of Cannon’s health. I am soooo happy to report that overall…..it’s pretty good. About 3 weeks ago, we had a bit of a breakthrough. One that I almost didn’t want to admit was happening for fear that progress may subside. Silly, I know. So, here’s the news…..Cannon is not fighting us too terribly badly anymore when we perform the daily “flush” of his colon!!!!!! It is no longer a 3 man job! And the second person doesn’t have to muster every ounce of strength in their body to keep him still enough for the other to get the job done. They can just kneel across from me as we lay Cannon on our towel-covered ottoman daily. And help to brace his upper body, keep his hands away from the button, and stabilize his trunk area. He gets upset when I go to open and close the button. And when I screw in the tube. He usually tells me that it hurts and tenses up pretty good. Some days, for no apparent reason, the button is hard to open. And those days are rough because he gets VERY upset. But everyday now, he relaxes when I begin to push the solution. Sure. He gets whiney and squirms when I go to unscrew the tube and close the button but progress is progress. Not sure how long or if the flush could ever just be a 1 man job but we are so thrilled with Cannon’s current progress…..we don’t care! We generally distract him with a favorite show or his beloved television music channel (“The Spirit”) and that, for now, is doing the trick. He also is adjusting to the cramping that occurs once we run him back to the restroom. The screaming is more just loud grunting or yelling now. Which is also quite an improvement! YAY FOR CANNON!
There has been some difficulty with 2 things, though. Frustration with his body (we assume that’s what it is) has lead to more aggressive sensory behaviors. For example, Cannon sometimes hits his head purposefully into walls or objects. We have been taking him to a chiropractor for some time now and he is helping us with this issue. The first and most important being to try and keep his neck and back stable and in alignment. This helps him be less reactive, in control, and also to sleep better. We are doing exercises and massages on his neck to try and strengthen the muscles and keep him from “locking up.” The second medical issue Cannon is having is that he has become quite Anemic. The flush is flushing out a little too much. And Cannon’s body is having trouble getting what it needs and retaining it before it gets flushed out of him. His lab tests showed stats like 2% iron absorption and a score of 9 in terms of his iron level when it should be between 22 and 132. So, he is now taking a supplement and we will be doing regular blood tests to monitor his progress.
So, that is the scoop! A quick one. Now, I get to right a F-U-N post!!!!! Watch out cuz it’s comin at you in just a few minutes! SO EXCITED TO SHARE! 🙂
Thanks for the update. So glad there is some progress. I will continue to keep you all in my prayers. 🙂
Thank you so much Beth! It is so wonderful to have a couple of GOOD things to report to our amazing support system! God bless! 🙂