Tuesday, June 4, 2013

Time is flying...

Recently I had a dream about Luke. A few years ago - that sentence would have a totally different meaning than what I'm about to tell you. A few years ago, we were hoping, praying, dreaming about the things he might do. Now I'm dreaming about the things he IS doing.  My dream wasn't some big, deep 'meaning' kind of dream.  It was just a dream where he and Ben were running and playing together.  Luke was talking and singing.  It was perfect.  It was reality.
Two weeks ago we went on a trip with Dan's family. We stayed in these little cabins by a lake. Our cabin is right by the boat ramp. It was a dangerous spot for us. And the best part is - it was dangerous not because of Luke's 'disability' but because of his *ability*! He was trying to run across this steep ramp and standing at the top with his arms behind him like Superman saying, "WATCH ME!" to anyone who would listen. Then upon seeing what he was about to do, it was a mad dash from the nearest person to STOP the wild child from attempting to run down the ramp. It was the best scared feeling I've ever had in my life. He was also working his upper body strength by hanging from the hand rails.  I didn't even know he had enough upper body strength to hold himself off of the ground!!  

Woah!  Look at those arms!!
Luke is just flying along!  He's making such amazing progress.  He finished his first school experience with Parkway two weeks ago.  He did a great job and has really started coming out of his shell.  He's talking so much more and making wonderful progress with conversational skills and asking questions.  Looking at him it is unbelievable how much he's grown in so many ways the last few months.  He tends to repeat phrases and is currently stuck on:  I love you, too, ___________, Can I give you a great big kiss/hug? and trying in any way to use the word booty (thanks Ben). 

He's also beginning to take bites of food. He is able to bite his food and chew but since he has decreased muscle tone in his mouth/jaw area, taking bites out of food is difficult for him.  We still cut up all of his food into bite sized pieces.  But lately he has been taking bites of things like quesidillas and peanut butter sandwiches successfully.  He still tends to try to stuff the whole thing in his mouth but with verbal reminders he is able to take bites.  This may not seem like a big deal but it is HUGE. 

This summer, Luke is taking a semi-break.  He is not going to go to summer school.  We are increasing PT & speech to once a week and continuing with Equine Assisted Therapy.  Other than that...we're hanging out!  In the fall, he'll be in a class at the same school as Ben with 6 typically developing children and 6 children with IEPs.  I had the opportunity to meet the teacher's aides in the classroom and it seems like it will be a good fit for him. 

We had to restart our seizure-free countdown again and are back at four weeks seizure free yesterday.  He has started a new medicine called Lamictal.  We're increasing his dosage very slowly because of some of the possible side effects.  He should be at full dosage in about 6 weeks.  At that point we'll see how he's doing.  I believe if he continues to do well with it and he remains seizure free then we'll start talking about reducing his other medicine, Keppra.  He's reacting very well to the new med and I'm hopeful that this will do the trick for a good, long while. 

We're also walking in an epilepsy walk in June benefiting the Epilepsy Foundation of Missouri and Kansas.  If anyone is around and would like to join, here is the website:  http://www.firstgiving.com/efmk/SeizeTheDaySTL.  It starts at (eek!) 7:30 a.m. But walking for Lukie is worth getting up at the crack of dawn for, right?  While we are, of course, walking for Luke, I'm constantly reminded as I see other families truly struggling with seizure control how 'lucky' we are that Luke's seizures are largely controlled.  Although we're trying to find our magic medicine mix right

now, I feel good about getting there and being seizure free for a good, long time again.  So while we're walking for our guy, we have a lot of other kiddos/families that will be in our hearts, too. 

We had friends come to visit.  Abby taught Luke how
to spell her whole family's names.  He is starting to spell a lot
of words and even starting to recognize some words!!!  I think
he also had (has) a HUGE crush on Abby...

He continues to be totally enamored by his big brother.  Ben teaches him things day in and day out without even trying....such as after you let out a huge belch, you yell 'Uh-Oh McBurpsio's' while you're laughing hysterically *sigh*.  I'll take it....!!!  Luke will try anything Ben does (except eating vegetables!) and I truly believe Ben's influence really pushes Luke to try harder. 

I hope everyone is enjoying their summer!  Thanks for checking up on Luke! 
Three sweet superheroes - Avery, Ben & Luke!!!