July Update

I know it might be hard to see in the photo below but Kevin’s forehead had some sweat on it and some of his hair is wet with sweat. This is the first time I have EVER seen Kevin sweat! This happened after a session of walking the track on the porch in the sun. In the past, when Kevin was hot his arms and legs used to get bright pink - it looked like he was sunburnt. I’m not exactly sure what this means that he is sweating now but it has to be a good sign biologically for him. I’m probably part of a rare group of mother’s that celebrated his first sweat - LOL! 

And along with sweat comes stinky feet - Pee-Yew! I need to buy some more socks for Kevin.

A few more changes we have noticed…

Since we’ve been home from our beach vacation, Kevin has decided that he is done after his wash down in the shower. He normally sat down and wanted a bath afterwards - but now he wants to skip the bath part.

If you have read my last few posts you know that earlier this summer Kevin began leaving his bedroom when he woke up in the morning to come in our bedroom. And when we were on vacation Kevin had his own bed in our room and went to sleep well but at 4:30am would get up and get in bed with us. Well this continued after we got home. Kevin would go to bed in his room with no problem, but when he woke up he would get in bed with me. This was sometimes in the 5 o'clock hour; the 4 o'clock hour; then it crept up to the 3 o'clock hour, and then I finally put a kibosh on it the "morning" he came in at 2 o'clock! You all know I love my snuggle time with Kevin but I also love my sleep too. Now he has to wait until at least 6 o'clock to come in our room.

Kevin tells us he wants his favorite snack treat by opening up the refrigerator and looking for his treats. In fact, now that we have these treat snacks for Kevin - he will pass on just a regular 'ole piece of fruit if he knows there are snack treats available in the fridge. LOL makes me laugh! 

Sometimes Kevin will indicate he is unhappy when I tell him it's time to crawl or creep laps. Right now, instead of flat our refusing to do it - he will do it, but he will not want me to help. If you’ve ever been around when he belly crawls I always help him place his feet in the correct position to push off (this is so he is doing it correctly and getting the benefit). I feel like he would say to me “Mom, I’ll do these laps but I will do it by myself!” I’m just happy he is not refusing. I’ll tell you, one tough part is wearing the Mollii suit on Sundays. Because he has to wear the Mollii suit, while walking the track, every other day for an hour - it falls every other week on a Sunday - our day off!!! BLAH! Not an easy thing to explain - but we attempt to do it first thing so we have the rest of the day off. 

Kevin recently had one of his favorite people over who will entertain him with the ceiling fan. The next day Kevin decided he would get the ceiling fan to spin himself. He moved the desk chair from the office under the fan and stood up on it to pull the chains on the fan. Did I mention he is standing on a rolling swivel desk chair! Then another day he must have wanted to reach something up high in the basement because he pushed the desk chair down the basement steps! - but he couldn’t get the chair to stand upright (fortunately!). We call these “Kevin Shenanigans”!

Here's another small but significant thing Kevin began doing this month. We usually always sit at the dining room table to eat but occasionally Kevin will sit at the kitchen counter (especially when I am busy in the kitchen). I think a pattern started this summer, that he would eat at the kitchen counter when he was not going to go into the hyperbaric chamber after lunch - which meant we were going out somewhere afterwards or he would get free/play time. So now when I start lunch preparations, Kevin hovers about as I put his before meal supplements in his applesauce cup and then he will quickly take it and put it on the kitchen counter where he eats. I feel like it's a statement "I am going to eat Here today Mom" and "I am hoping this means I can have free/play time afterwards."

Kevin has also “all the sudden” started picking up our iPad to use. We have had several apps on it for him - but he never seemed interested in it until now. Of course, like most kids he didn’t need any instruction and knows how to get around on it. His favorite app is BabyLaughs (makes me laugh too -Kevin still loves babies!), he also likes PBS Kids and Disney Junior.

I’m almost hesitant to say anything yet…but in the hopes of putting out positive thoughts…I am seeing a slight change in Kevin’s walking in the track. His balance is better and I don’t have to keep a hand or finger on him to help him balance all the time while he is walking - it’s a start!

Kevin is still verbal and making lots of sounds and using “bye”. I have heard him occasionally playing around with a sound that sounds like “no”. He's not using it to communicate specifically yet but this is how "bye" began. I know I may one day change my mind…but boy this would be a helpful word for Kevin to have available.

So it seems we are continuing to see these small changes that indicate a positive shift in Kevin that brings big smiles to this proud Mama. I’m not sure what these changes are due to - his new diet protocol that began in January, his Mollii Suit that began (again) in May, or his Dr. Nemeh visits this year. By the way we have our fourth visit this year with Dr. Nemeh this week on Thursday, August 13 at 11:00 am. A BIG THANKS to our "Friend" for giving us four visits with Dr. Nemeh - I know that these visits are a big contribution to the positive changes we have been seeing in Kevin. Please join us in our prayer for Kevin's continuing progression. And thank you for taking to time to read my long posts. I want to remember all these changes so I can tell FHC about them at our next revisit.

Myrtle Beach 2015

Kevin thrived on our Myrtle Beach vacation that we took with his Grandee & Pap, Aunts & Uncles, & Cousins.

I can’t remember a time during vacation when Kevin was disagreeable (of course I wasn’t telling him to crawl or creep laps on vacation). He was so happy! He was smiling. He was laughing. He was so excited to be with the family for a whole week. This excitement enabled him to create enough breath to make a lot of verbal sounds - A LOT! I think whenever there was an opportunity, Kevin always said “bye”. He was giving kisses when asked. He was climbing over the back of the couch to plop down on the couch seat. He was smiling for photos. He shared a room with us and had his own bed. He slept soundly so that we could come in after he went to sleep and not wake him. But he awoke nearly every morning at 4:30am to snuggle with me and get a little more rest before 6:30am (his normal wake up time) when he was ready to get up and wait for the rest of the family to wake up. I was surprised that he didn’t obsess much over the ceiling fans while we were there. He enjoyed being on the beach more than last time. He still preferred the hot tub over the pool but by the end of the week he was in the pool more often. And during his enemas, he pooped on the toilet (first time ever!) - frankly because it was just easier - and he was proud!

One of my favorite moments during vacation was when his 5 cousins (ages 7-14) wanted Kevin included in some of the beach activities - sitting in a big sand hole together, riding the waves on a boogie board (thanks to Uncle Steve and Grandee for helping Kevin with this huge balancing act for him). Kevin even participated in painting a 4th of July craft and a skit with Uncle Steve. It meant the world to me that the kids thought to include Kevin and not only did he stick around for the various activities but he was having fun too. 

My other favorite moment was our last night. We had the pool to ourselves and Grandee and Pap were in it with all six grandkids. Not only was Kevin in the pool but he was swimming back and forth the length of the pool and having a blast. This moment was extra special because it was the first time all week that my Dad was in the pool and had his shirt off - this gave us the visual reminder that this favorite moment would not have been possible without his Heart Donor. So I have to stop and take a moment to thank God for making this moment possible and to thank all Donors that enable recipient families to have extra moments such as these.

(I was waiting to post this until I could put the photos with it but I’ll just post them separately when I get them.)

New Job

Congratulations to my husband for 18 years of a job well done at Key Bank. The “Loan Ranger” has resigned and has a new and exciting opportunity as CEO/CFO of a local company that provides services for adults with disabilities. 

God has blessed us and I am so proud of Jon for being our provider and taking on this new and exciting role.

Best wishes to you and this new chapter in our lives. I Love You!

2009

Dr. Nemeh - June 16, 2015

Many thanks again to our gracious “Friend,” this was Kevin’s third visit (this year) with Dr. Nemeh in Cleveland.

I don’t have a whole lot to report from this treatment session - yet. 

A couple things that stick out from this session was that Dr. Nemeh commented that the two bones in Kevin’s left foot that are sticking out (top and side), have moved (in a good way) with his treatment - but it is still hard to see this progress. Kevin was verbal again during his treatment session, although he wasn’t as animated as he was during his last visit, but it did feel a little more purposeful. Kevin has two vowel sounds (“a” & “o”) he has been making together, but not very often. It was this sound that he voiced many times during the session - which I felt like that was progress. Dr. Nemeh spent nearly two hours with Kevin during this treatment session and we are scheduled for another visit in 8 weeks. 

As I mentioned in earlier posts, I read the book written about Dr. Nemeh after our last visit. Initially, I had borrowed “Friend’s” book and when I saw it was signed by Dr. Nemeh and his wife - I wanted to have my own book signed too. So my Mother-in-law was kind enough to pick a book up for me. And as you can see, I was able to get it singed by both Kathy and Dr. Nemeh. 

PS - I'll just mention here that we have postponed our revisit to the Family Hope Center until fall. This will allow Kevin more time to progress with the mollie suit and his left foot walking.

Saint Kevin - Feast Day June 3

My Dad’s big hobby is carving and whittling and he carved an Irish looking guy that he was working on during our last visit in March. I put the Irish guy in the cabinet next to some other carved treasures. 

On June 3rd, I received a message from my Mom telling me that it was Saint Kevin’s feast day. I remembered that I had his holy card, given to us by our friend Ms. Louise (Louise the Breeze) from her visit to the Holy Land a couple years ago. I displayed the card on the mantle in our program room. A day or two later I happened to see the carved Irish guy in the cabinet and was tickled by how much it resembled the picture of Saint Kevin (born in Ireland) on the holy card. So of course we have named the carved treasure Saint Kevin. 

I remember learning that Saint Kevin was a patron of epilepsy when Kevin was a baby (and having seizures). Here is a brief story given on the holy card: 

“A young man with severe epilepsy had a dream that he would be cured by eating an apple but none were to be found. Kevin ordered a willow tree t0 produce apples and twenty yellow ones appeared after his request.”

So I guess it shouldn’t surprise us that Kevin loves apples and some of you may remember “apple” was the first sign he learned. 

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.

Winter/Spring 2015