Say What, Ray?

I have said before that Raymond keeps us on our toes…well, after 12 years of being diagnosed with CP and Mitochondrial Disease…we finally received a name for his rare mitochondrial disorder….you ready?  Here we go….. Complex Oxidative Phosphorylation Deficiency Type 13, or COXPD 13.  What is that?  It is too confusing to get into right now, so let’s just say it is a label, a name, nothing changes in his treatment.  But with this comes understanding of what is happening.  This last week since we got the news, it has been hard to explain how I’m feeling…maybe a little overwhelmed, somewhat discouraged, but mainly just plain tired, really tired.  He was having some rough days last week with his little stomach just not wanting to work, and when he doesn’t feel well, it is sometimes a struggle to use his new eye-gaze system.  I have to be honest; sometimes he struggles to use the device and can not do as well.  Sometimes he just looks at me as if to say, “you know what I need Mom.” Sometimes the eye-gaze sensors need to be adjusted…this is a learning process for us.

But I have been asked a lot about how Raymond is doing with this communicator.  It is hard to explain, but this will take time.  When he first got his Cochlear Implant at age six and started hearing for the first time, some expected him to understand them right away.  But imagine a baby; hearing for the first time, Raymond was like an infant in his understanding of language.  It takes a child time to learn language.  When a child goes to school, it takes time for them to learn to read and write.  So Raymond is now learning words, picture icons and phrases. Sometimes it is hard for him to coordinate all that he needs to do just to keep his head still and focus his eyes, it is not always that easy to do, but when he does…..wow!  On Raymond’s good days…he is doing AWESOME!!!  We have always known there is a smart little cookie in there….let me give you some examples.

I wish I had some video to share, but it is hard to capture video as sometimes it takes awhile for him to say what he wants.  But then sometimes he has said something out of the blue, and I didn’t have my camera at the ready.  One afternoon Raymond, Lil’ Roman and myself were sitting at the kitchen table, Raymond had the device set on one communication page with 8 options when he, by himself using his eyes, got out of that page and went into a different page with 14 options that he uses at school.  He was looking it over when he chose and said “yuck”. Lil’ Roman said, “Raymond, why you callin me yucky, dude?”  Oh….that got Raymond laughing…we all started laughing.  Then Raymond selected from the same page…”I don’t know”.  We were all cracking up even more.

During the NFL Playoffs, Raymond continued to cheer for our Broncos by selecting on a page of 4 options….over and over….”Go Broncos!” On that same day while watching the game with family, he had not “spoke” with his device in a while when he selected from a page of 8 items…”I Need” which took him to another page of 8 options….”Clean Diaper Please”.  And that is what he needed.  Over and over since he got the device, he has told us that “I Need” ….”Bathroom Please” or “Clean Diaper Please” and sometimes I will ask him to confirm with a yes and no, and out of 8 options, he has selected “yes”.  He has also been able to tell us when he is hurting.  One weekend he appropriately told us multiple times with the device “My Stomach Hurts” when he had an issue with his feeding tube site.  Do you know how long we have been waiting for him to tell us where it hurts????  I was cheering because he was able to tell us, but at the same time sad that he was hurting and tried to comfort and help him.

At a recent doctor’s appointment, we were waiting in the exam room for what seemed like forever when Raymond initiated selecting “I feel” and then “I’m Bored.”  That totally made my day….it was so appropriate, and he did it without me prompting him at all, I had been on my phone catching up on some texts.

Last Friday, when I picked up Raymond from school, I was informed that he had been talking a lot that day, especially greeting people.  And his aide asked him to select a few items which he did, sometimes it took him up to 5 mins, but Raymond did what he was asked.  And to top it off, usually after lunch Raymond’s class comes in to do their “jobs”.  Raymond’s “job” is to stamp the class papers with hand-over-hand help from his aide.  On this Friday, they didn’t do “jobs” and Raymond was sitting by his friends.  Out of the blue, from another page of 4 options…he selected “School”, which took him to a page of 10 selections…and he chose Stamp which said…. “I need the stamp please.” He knew what it was time for….that is our boy!!! .

Last night, we were struggling a bit trying to get him to use his device.  It was easier for him to answer yes or no than to tell me specifically what he needed, but we worked through it and figured out what he needed. Afterward, I moved him in front of the TV while I started to get dinner ready when Lil’ Roman came in the door from training, as he walked by his brother, Raymond said “Hi”.  You should have seen Lil’ Roman’s face, he did a total 360 back to Raymond.  We are loving this!  Thank you Make-A-Wish!!!!  This is one wish that you granted that we get to enjoy everyday!!!!!

To some of you this might all be too technical, if it is I am sorry…but for Raymond this is huge.  When we started the trial two years ago, he was selecting from 3 items, sometimes 4.  Now he is up to 8-14!!!!  This is awesome, this is progress!  And he is using it for more than just making choices; he is expressing his personality, his requests, feelings, pains…he is communicating!

These are pictures of a few of his screens that he selects from....using his eyes: