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.