May News

I find myself saying things like, “Guess what Kevin did this morning!?” and “Kevin did something new today!” They are very little things but they always mean something big to this mama. 

One normal day in May, I started my morning as usual. I take an early walk outside, shower, and then get Kevin up to do an hour of program before starting meals in the kitchen. Jon has been leaving to walk outside after I return home from my walk. So when the bathroom door flung open I was surprised…it was Kevin! This was the first time Kevin has ever left his room by himself! He has always patiently waited for us to come in and get him. He gave me big crocodile tears and indicated that he wanted to get in my bed with me and watch a show on tv…and I couldn’t refuse. He knows how to play his mama - LOL! 

Since then he has repeated it (not every day), but thankfully he has not given me a hard time about taking him downstairs to do his first hour of program. Sometimes I hear him walking from his bedroom to ours. Sometimes he flings the bathroom door open and then waits patiently in a bedroom chair, and sometimes he waits in my bed. It’s still a little startling to me because you have to remember there is no verbal warning from him - he is just quietly sitting there. One day, he wanted to watch tv again and I put on my brave mom voice and told him no, but he could watch tv after program while I was in the kitchen. The funny thing about this was that normally after program, he will pull me over to the tv room and point to the remote to let me know. But on this day, after I had promised tv after program, he was entertaining himself around the house and didn’t seem interested in watching. But then he panicked when he saw that I was in the final stages in the kitchen before we sit down to eat, he pulled me into the tv room and pointed to the remote control. I told him it was almost time to eat but he could start a show (because I had promised it earlier) and then finish the show after he was done eating, because he usually finishes eating before me. So I paused the show on the tv and we sat down to eat. I had to stop myself from laughing because I could see he was rushing a bit through his meal and he even pulled me up from the table before he was done and checked the tv to make sure the show was still paused and ready to watch when he was done. Another way Kevin is showing he has an opinion is after our first hour of morning program, he sometimes opens the refrigerator and wants one of his homemade snack bars. I love seeing him do these typical kid things.

We have some friends that we stop by to see occasionally. Ted plays guitar - electric guitar, Kevin sits at the piano while Ted is playing his guitar and sometimes plays some notes with him. What is most remarkable to us, is that Ted cranks up the volume and Kevin is totally fine, not just fine but smiling and laughing. This is the kid who couldn’t tolerate the organ at church years ago - and now look at him. Unfortunately, clapping still bothers him though.

One other story I have to share because I don’t want to forget it. After our second visit with Dr. Nemeh, I started reading the book “Miracles Every Day” that was written about Dr. Nemeh by Maura Poston Zagrans. On Memorial day, I woke up early and decided I was going to finish reading this book before I started my day. So I quietly sat in bed and read. At some point, I heard Kevin making sounds that he was awake, and I furvishley began trying to finish reading. It was still pretty early, a little after 6am, and I figured since he didn’t hear me moving around that he would stay in his room. But when I was literally reading the very last page of this book, I heard Kevin’s walking thumps as I finally finished the book. But the thing I wanted to remember most about this was that as he climbed up in bed with me he immediately gave me the best hugs in the world. I’m talking TWO arm hugs, not the first time he’s done that, but definitely not something that happens often, his hugs are usually right arm hooks. And he spent lots of time giving me these two arm hugs, clasping his left arm with his right to hold on tight. This is so significant to me because 9 years ago when we went to Dr. Nemeh’s Healing Service at our church Kevin gave me my first hug (the right arm hook) - and I always have considered that my healing. And this is why I treasure every hug. 

Healing Hug

You gave me a hug to heal me

You wrapped your arm around my neck

And placed your head on my shoulder

Family, friends, and strangers all prayed for us

As Dr. Nemeh and his wife prayed over us

Our Father answered their prayers

By giving me your hug

To heal my mind and spirit

Since our second visit with Dr. Nemeh and picking up the Mollii Suit, we been having excellent program days. I feel Kevin’s understanding is getting better and he is showing us he as an opinion. When we are crawling and creeping laps (which he has nearly doubled in a month's time), he pauses and wants to know how many laps are left. He even stops to get up and wave to the neighbor leaving for work and get back down and continue laps. His cooperation has been great!

And yes, he continues to make sounds and say “bye”. Not just when he is leaving some place but occasionally when others are leaving him he will say it too…sometimes after they have already left he finally gets it out…but that still counts. He even mimics with sound intonation a sound he hears me say repeatedly (cha cha cha cha cha). I have noticed that sometimes he begins making verbal sounds when I am talking to someone else - LOL - another typical kid thing, right!? I'm never quite sure how to respond when this happens. If I stop talking and acknowledge him and his verbal sounds, he typically stops, so sometimes I just keep talking all the while I'm listening to these wonderful sounds he is making.

One more thing I want to add in here regarding new Kevin-ism's - he is really friendly. Ok, so he's always been pretty much friendly with most people for a while now, but there something just a little bit different about it recently. When we are at a gathering with a lot of people (like church or a party), he will basically walk the room and greet people, sticking out his hand to shake hands with everyone - and I mean everyone, people he knows and doesn't know. And when he is engaging with someone he really gets into their personal space. I think people put up with their personal space invaded by Kevin because he's got this big grin on his face while he's doing it, how can you refuse him!? Not sure if I should be concerned about this or not. But I do like that he makes people smile.

So sometimes we see this…Kevin begins making sounds and maybe seeing some new things happen…and then he loses these abilities. But I am hoping and praying that this time he is going to continually build on top of these new abilities and make some progress.

Our third visit with Dr. Nemeh is this week on Tuesday, June 16 at 10:30 am.