Thursday, August 20, 2015

Myrtle Beach 2015 Photos

Photos from our Myrtle Beach Vacation in July 2015

Happy 4th of July!

So many happy smiles!

Playing in the sand!

Painting 4th of July craft!

Riding the Waves - Thanks Uncle Steve & Grandee

Love these Kids!
Sand Pit!

Favorite Moment!

So many happy memories with the family!

Southern Charm 2015

Southern Charm with the Carroll Family in North Carolina 
We stopped for a visit on our way to the beach in July.

 Kevin spreading some charm with Baby Emma

Kevin charming Emily to lift him up to ceiling fan - 
even though she is practically same size as Kevin

Tuesday, August 18, 2015

Dr. Nemeh - August 13, 2015

Kevin had his visit with Dr. Nemeh and it was an interesting day. The appointment was originally scheduled for 10:30am and we received several phone calls (2 before the day and 2 the day of) to postpone our time to accommodate someone who was flying in to see the Doctor. The constant time changes - kind of made a long day for us - but we were happy to help someone else and we still got our appointment that day- especially since my parents came up to visit and go to the appointment with us. 

Not long after Dr. Nemeh began the diagnostic part of the visit he asked about Kevin’s fall/s. He had asked us this same question on our first visit in February - which didn’t surprise me because Kevin had a scary tumble down the steps in December. So at the February visit, Dr. Nemeh treated Kevin’s neck and back where he saw the negative effects from fall. So when he asked about it again at this visit - I was at a loss - because I wasn’t aware of any big fall that Kevin had (and we are together nearly all the time so it was unlikely that I wouldn’t be aware of it). The only thing I could think of was that Kevin will sometimes fall gracefully - meaning he will lose his balance and catch himself with his right hand and lower himself to the floor. Dr. Nemeh told me, “a fall is a fall”. Earlier in the day, my Mom had mentioned how much better Kevin’s walking looked compared to when we were in Myrtle Beach on vacation in July. I had forgotten or blocked it out - because his walking was really awful at that time - making me cringe with every step. This reminded me of several “graceful” falls during that time - which was after our last visit with Dr. Nemeh in June. Dr. Nemeh explained that once he had treated Kevin’s neck and back in February it shouldn’t show up again in the diagnostic unless there had been an injury - so he was basically telling me Kevin had a fall not asking me. We discussed it later and felt very fortunate to have this information available to us from Dr. Nemeh because Kevin is unable to communicate to us - if he did have a fall and I was unaware or if he was having discomfort from it. During this visit Kevin was happy and vocal during the treatment but his mood drastically changed when Dr. Nemeh began treating his neck and back area that was affected. It was obviously very sensitive for Kevin and bothering him. So we feel grateful.

While Dr. Nemeh was working on Kevin’s left foot - I remembered him commenting at our last appointment in June about 2 of the bones looking better in his foot. I had a hard time seeing the positive change he mentioned at that time. But during this visit I realized the bone that had been protruding on the top of his foot was much less pronounced (I had actually forgotten about it until then). So that was a very positive thing to realize. 

As I mentioned, Kevin was verbal during this visit again. Dr. Nemeh was encouraging Kevin to say “ok” and Kevin was able to get something out that sounded very close to it. There was also one more word that he encouraged and Kevin again got something very close out - but we can’t remember what the word was. 

Overall, it was a very good visit and worth the wait! As we were waiting for Dr. Nemeh to come in at the start of our appointment, we saw THREE deer running by outside the window - we took it as a good sign. 

We will return for another visit with Dr. Nemeh on Kevin’s birthday! I can't wait to see the changes he develops in the next 8 weeks. 

We had such a good visit with my Mom and Dad while they were visiting. They got to see the various “faces” of Kevin in his home environment. Kevin practiced a lot of “no” sounds. I would guess it won’t be long before he begins using it as a response. We are trying to encourage “ok” to counter having “no” added to his vocabulary. 

On the last day of my parents visit, when they were packing up to leave - I could see Kevin process the understanding that they were leaving and it made us both sad - which is another positive progression for Kevin’s development. We are so thankful for our time together with Grandee & Pap and a bunch of new memories. 

Kevin with Grandee & Pap 

This is the painting "Friend" was able to paint after his healing 
from Dr. Nemeh that hangs in the office.

Monday, August 10, 2015

Remote Control & Screwdriver

Kevin wanted to watch a TV show while I was in the kitchen getting meals ready today. I always try to use these opportunities to encourage communication of any kind. So without having verbal communication for it, it goes like this...Kevin comes in the kitchen and gets my attention and makes one of his "Uh" sounds. I say, do you need help with something? Kevin says "Uh" and grabs my hand to take me in the family room. Then he scans the room for the remote control. (Like most homes, we have multiple remote controls for various devices and sometimes the same device. I like to use the "easy" remote which is the big silver remote control and that is the one he will usually hand me to tell me to turn on the TV. As you may know, having several remote controls around it can be difficult to locate the one you want.) So in this moment, Kevin sees two remote controls on the ottoman (the other two remote controls that are actually for the TV are out of his visual range behind him). He scans the room again and picks this small silver remote (which I'm not even sure what it is for but I do know it is not to turn the TV on). So then I helped him find the correct TV remote control and turned the TV on for him and he watched his show.

I find this really interesting. We have struggled with sign language and getting signs to stick after he learns them. We struggle with getting him to point to a correct answer when he has a choice, often times he will look at the correct answer but point to the wrong answer. We even struggle with taking silverware to the table - Kevin uses a spoon and always gets his spoon for his meal but when I ask him to bring me a fork he always gets me a spoon and sometimes two spoons - despite our best efforts to show him by various methods. Sometimes giving Kevin a simple direction to follow with a common object is unsuccessful, which can leave me feeling baffled and discouraged. When Kevin was deciding which remote control to choose based on the two that were within his sight - I thought he would have picked the small black control because it looks more like a regular remote control, but it seems that he picked it based on color? I don't know what that means but I feel like this gives me a glimpse into Kevin's brain and how he processes some things. A good example to tell our brain experts.

Update on the same day
The story continues...later in the day (after I had written the story above but before I posted it) something else happened. Kevin had been down in the basement and discovered that I left the toy closet open (it is a difficult door and is not easily opened or shut). I heard him brining out some of his old toys and was hearing some old familiar noises from his battery operated toys that make a lot of sounds and lights. Some time later, he comes upstairs with the yellow piano toy (not easily done one handed and needing wall support while walking up the steps backward!). After being upstairs for a few moments, Kevin hands me the yellow piano WITH A  SCREWDRIVER!!! The yellow piano was not working anymore and he knew that it needed new batteries and that new batteries meant a screwdriver would be needed. I was flabbergasted!!! I did not know he knew how to process all of that! Here's how I am assuming it went in Kevin's head: This old toy piano isn't working; When some of my other favorite toys don't work Mom and Dad say the batteries need to be changed; I've seen Mom changing the batteries in my Mollii Suit every week and she uses this screwdriver; Mom keeps the screwdriver on the desk next to where the batteries are charging; If I give this screwdriver to Mom she can get my old favorite toy to work again. Please don't misunderstand me, I know Kevin has some understanding but in the paragraph above I explained how it can be confusing for me to understand everything he understand. I honestly had no idea he was understanding and processing all of that. It's possible!

So, I have a confession, our helper wasn't able to come over today. I got busy with some other stuff around the house and we took an impromptu day off. I believe there is something to be said for these around the house "free days". If I had stuck to our program schedule Kevin would not have had these opportunities today and given me some insight into his understanding. This couldn't have come at a better time. Just a couple days ago I was getting the "Back to School Blues". I was feeling all the energy with Back to School time and it makes me feel a little blue. I feel left out, because it represents a beginning and another year gone by that kids will make gains and progress in their learning and development. It's been so long since we have seen any real intellectual development with Kevin. But Kevin is finally making baby steps towards some real progress - with his increase and (dare I say) stability of verbal sounds and his word "bye". And I have been posting positive updates on Kevin - more than I have in a very long time. This gives me hope and that's what I need to keep me going. - Again, thanks for reading another long post.

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.

Sunday, August 9, 2015

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.)