Little Guy Levi

Featuring Leviathan as himself. I get barrels of laughs and some of the best live entertainment on a daily basis with this boy. Here he is at 26 months old singing one of his favorite songs.

For Crying Out Loud

Something truly amazing happened yesterday. First let me paint the scenario. There were five of us sitting in the middle of the living room floor. Here’s my pathetic attempt of a visual. It’s obviously not to scale, but you get the idea. The four of us, unknowingly at the time, are basically boxing in Logan, who is laying down on the floor.

Gram and Jason were carrying on a conversation with something to do about late night shows and who is hosting what. Not quite for certain as I was trying to decipher what Levi was whining about. Generally, Levi talks very well, but this time around he was asking for something we did not officially give a name to (a musical snow globe). Levi began to get louder and louder while growing impatient with me because I was struggling to figure out what he wanted off of the top of the entertainment center. In the meantime, Jason is talking louder to talk over Levi. This entire time, the TV was blaring music during the credits of Madagascar 2….

All of a sudden, as quick as a flash came a loud,  shrilling scream from Logan. In that very instant, Gram rushed to turn down the music as we sat there with our jaws to the floor in pure amazement! Logan had screamed as if to tell us ‘SHUT UP!!’ and it was AWESOME! Right away, Logan resumed to his normal self. He was pleased to finally have some peace and quite.

Our apologies immediately went to Logan. We quickly realized that we were extremely rude. We had not given him appropriate space and to top it off we had created way too much noise that he didn’t need to be in the middle of. Logan deserves respect and we were being disrespectful. For that we were very sorry.

Even though Logan has no verbal words to express himself, he can still communicate. It can be very difficult trying to understand what he wants and trying to figure out what he needs. However, he made it very clear to us last night and we praised him for doing so!

Not So Distant Future

I’m counting down the days to July 18. It’ll be here quick enough, but I can’t wait! It’s going to be a day like we’ve never experienced before. Logan will be participating in Tri Del Sol, his first ever triathlon! I’m just a wee bit excited! Can you tell?

This is all made possible by myTEAM TRIUMPH (mTT), a superb charity inspired by Team Hoyt. If you’ve not heard of Team Hoyt, please take five minutes and watch this. MyTEAM TRIUMPH makes it possible for people of all ages with disabilities to experience the thrill of the race. In short, Logan is the 'Captain’ and the athletes pushing and pulling him are his ‘Angels’. I can’t possibly say enough about the entire mTT organization. They are nothing less than phenomenal.

On July 5th we had a practice run. The experience was truly amazing. We can’t wait for the real deal. Want a peek of what’s to come? Check out these videos and a couple of photos.

Hog Wild

Happy Independence Day!

A day full of good times and Harley rides! On Friday, we spent a great portion of the day outside. The sunshine was abundant and we were loving it. We definitely took advantage of the beautiful weather and soaked in the warm rays. Here’s a video and a couple of photos of Pops giving the boys, Momma, and Gram a joy ride. What fun it was!

Patiently Waiting

I’m not even going to pretend I know everything, because I most certainly do not and will never claim to. However, there is something I do know for certain. Logan will be attending Euro-Peds, an intense physical therapy clinic in Pontiac. Although every detail is not yet set in stone, it will happen.

The biggest unknown is when. When will it be Logan’s turn? A few weeks ago, I sent in $1000 smackaroos which reserved his spot on their waiting list. I was told that we may have to wait until this fall to get our opportunity to reap the benefits of their services. On the other hand, if we find out that Logan is indeed a candidate for the PERC lengthening surgery, the Euro-Peds team already stated that they will get Logan in after his surgery for some kick butt rehab. That is key! Talk about putting a child’s best interests at hand! They are proving to me that they do just that!

Regardless if Logan has surgery or not, he is going to Euro-Peds. He’s going to do it and he will like it! Ha, sorry I couldn’t resist the urge to role play in that instant. It was funnier in my head. Moving on…. I believe it is the next path we are to travel.  If PERC is a go, Euro-Peds could not come at a better time. Intense rehabilitation after a surgery of this nature is highly beneficial. Other wise, it’ll be a prime opportunity for him to gain another boost in his mobility.

There’s just one down fall…. the expense. My goodness, five grand for two weeks? For real?! If we decide to participate in suit therapy, go ahead and make that six g’s. Shoot, if this clinic is what I hope it to be, let’s just do three weeks for seven or eight. The time frame is totally out of my hands. That will all depend on Logan and whether or not we can raise the funds. It’s very unfortunate that our insurance will not chip in even a little bit, for one reason or another. Let’s just hope our $15K surgery has better luck getting covered than Euro-Peds. *SIGH* It’s an awful shame that it will cost a small fortune just to better the quality of life for my son.

If you are able to help, even just a little itty bit, you’ve made a difference! Words can not possibly express our gratitude for helping making Euro-Peds a reality!

Wordful Wednesday

What better way to tell you about Yogi’s last weekend than to show you with fun photos. When Chad picked Logan up on Friday evening, they headed straight to Grandma and Grandpa’s for a super fabulous visit. What a weekend is was. Just look at all the smiling faces!

On A Mission

What’s the mission? To do what ever it takes to help reduce Logan’s spasticity. We’ve tried oral baclofen and Botox and received minimal relief from both treatments. The next method of attack is PERC lengthening. Here’s the deal…

PERC lengthening, an outpatient surgery, is a procedure that has been proven to help reduce spasticity in children with cerebral palsy. Basically, from my understanding, the doctor makes pin hole like incisions in the tendon which allows the muscle to stretch and lengthen. These small incisions are optimal for minimal scarring and assist with great recovery time. In Logan’s case, his hamstrings and calves are in dire need of these benefits.

As the days pass, the tightness in Logan’s muscles are becoming more evident. His spasticity is most noticeable when we walk him without wearing his DAFO’s. With each step, his heels are not completely touching the ground as they should. There are often times where he seems to tire out quickly from supported walking and his legs will some times scissor. While trying to pull and push himself into a stand, he is unable to get his legs under him. I’m placing majority of the blame on those daggone tendons. Lastly, there have way too many nights where I’ve felt a quarter sized knot in his calves.

I imagine those knots in his little legs being compared to the discomfort of a charlie horse. I don’t know about you, but from my experience those are rather painful. I always wonder how often Logan is experiencing these knots. Everyday? How am I to know? Believe it or not, Logan has a very high threshold for pain which makes it hard to decipher what the heck is going on. I hate to think that he has become custom to this pain and just deals with it daily. Could these muscle spasms be contributing to sleepless nights as well? So many questions with no answers.

July 20 is our consultation to see if Yogi is a candidate. Please, pretty please with some splenda on top, keep your fingers crossed and say a prayer that he is. Not that I want Logan to have to undergo more pain and discomfort, but in the long run, this could be extremely beneficial for the little man. Without spasticity, will he be able to walk independently? You never know….