Update!

I can't believe it's been soooo long without an update! We had a great Thanksgiving and Christmas! We had a wonderful long break after Christmas and even Barry was off work for the week!

Now we are back into the school routine....mostly! Asa has had a few days of low energy and droopy days. I keep thinking he's getting sick but after a day of rest he feels perky again!

Asa has learned a few new tricks since I last updated. He has learned to get out of his booster seat at the kitchen table. Since he's walking now, we can't just put him somewhere and walk away. He gets up and follows. This is great unless you like to shower, potty or just be alone! The kitchen table is the only place we could still put him and get a few minutes of alone time! No more! Boy are we in trouble! One night he wouldn't eat supper. He scooted his plate away, got out of his chair and walked to the front door! Thankfully, the door was deadbolted becausehe was sure turning the handle!

He also recently learned to shake his head "no" and nod "yes". I really didn't realize that Asa had missed the skill of learning to say "yes" and " no" butbtheynpointed it out in May that it'd be a good skill to learn over the summer. Well, he has it down now but we still thought he was just mimicking us and not really answering for himself. Until a few weeks ago! Cade had a science experiment that used a big tub of flour. After the experiment, they played in the flour. Asa would put his fingers in his mouth and I'd say "don't eat the flour" to which he'd nod his head and eat more! He also tried to bring the tub onto the carpet and I'd say "don't bring it on the carpet" to which he'd nod his head and try harder! Soooo, he knows how to answer with a nod or shake and also how to disobey! Great skills but boy are we in trouble!

And speaking of "no", Asa's learned his first word!!! He clearly says "no"!!! He doesn't just SAY "no" but he growls it!!!! "Asa, it's bedtime." "NOOOOOO", he growls! He also shakes his head like crazy when he says it! It's pretty darn cute!

So that catches you up on all the fun stuff going on around here! If this still doesn't make up for our loooong absence, check out these videos! WARNING: video 3 is long and I'm loud and obnoxious but Asa is playful and adorable! :)

Ready to Run?

It's that time of the year again! I'm not talking Christmas though! It's time to think about the Mito What? 5K in Millington! That's right! Race registration is open right now! We are hoping for 100 runners by December 25!


There are so many ways to help out even if you don't run. There's the Jack Pack, a 1 mile fun run/walk. Or you can be a Spirit Runner and get a shirt but not run. Or you could just sponsor me this year! I'm going to RUN the 5K....3.1 miles of running! So with all these choices will you help us reach the goal of 100 runners by the 25th?


Just clink this LINK and choose Spirit Runner, Jack Pack, 5Ker or sponsor me!


And just an update on Jack.... He is in Akron, OH with his mom and grandmother. They have had appointments with Dr. Cohen and are waiting on a MRI so they can begin a new drug trial for mito patients!!! We are praying the MRI goes smoothly Friday and they can get started on the new drug, EPI-743, very soon! This has shown lots of promise so we are praying it does wonders for Jackson too!

Busy Week

This has been a busy week for Asa....in me, in turn!  

On Monday, Asa's school had a Veteran's Day program. His school is a pre-K center and all the classes are for 3, 4, or 5 year olds. All the classes were divided into the 5 branches of service and gave a little presentation of their branch. It was adorable and all the kids did so good. It was just a moving little program and I was so glad that Gracie and I got to go.  

On Tuesday, Asa had aquatherapy after school. So far he's been missing school for aquatherapy but he really loves school and it messes up the whole routine. We had to switch therapist and I hated the thought of that but as she said, another set of eyes may see something he would benefit from better. So far so good but becuase of holidays he hasn't had school and then therapy until this week. And it was a re-eval and done in the therapy room instead of the pool! I was afraid he'd revolt! Each morning I give him the ipad and his talker app and talk about school. He usually pushes the "pool" button though! But, thankfully, he did great! And I mean GREAT!!!! He played, worked and showed off all his skills, even some new ones! He did a little crawling and she didn't even ask him to try that one! What was even more facinating (or disturbing) about this eval was that he was obsessed with the therabands. As long as he was working for a band, he was WORKING! He was so focused on the bands. He'd work and work until it got smoothed out or wrapped just perfectly. I've never seen him so focused. Usually he gets frustrated or distracted and makes you do for him or he gets mad and just screams. Not Tuesday! He was FOCUSED! Too bad it was on bands and not on speech or learning colors! :) 

 On Wednesday, his PT texted me that Asa had jumped while holding one hand and got BOTH feet off the floor!!!! He has been trying and trying to jump! Now is trying to jump all the time! 

 On Thursday, Asa peed on my foot! How's that for newsworthy?! I was cooking supper and Anna started a load of laundry. I stripped Asa down and tossed his school uniform in with hers. I left him naked (neked!) while I attended my supper. He walked around naked (neked) for a few minutes and seemed to enjoy it since he is never nude. Suddenly I noticed my foot getting warm! Asa had stood next to me and peed on my foot!!! I'm sure he didn't mean anything bad by it though! :) And then today! 

Today was the Thanksgiving meal at Asa's school. I had the best time. The food was great and Asa was sweetie! It was a lot of fun! I got all kinds of happy reports about Asa from folks that see him everyday. He loves school and I can see why...the folks around him are amazing! 

 Along the week we've also discovered some new things about Asa. He usually loses it on the way home or when we get in the door. He screams, kicks, slaps himself, is inconsolable and just plain ole on fun to be with! We usually just ignore him so we aren't giving him attention for a negative behavior. One day I told him to "sit on the naughty stool", which I completely made up in a moment of desperation! Asa hushed, got off my lap and walked in the direction of the bench ready to have a timeout! He got a little confused about which seat was the naughty seat though. At any rate, I was thrilled he knew to calm himself though! 

We've also noticed that Asa is happily trying new foods and eating more and more. Unfortunately, he is also pocketing many bites in his cheeks and not swallowing. I usually have to go fishing in his mouth, dodging teeth, to clean out his cheeks. NOT FUN! I've got a call in to the ped for a referral back to feeding therapy to work on this while he still has an interest in eating. And I thought maye it was isolated to him eating at home but his teacher said he had eating breakfast several days and was trying to get the other kids lunches at school! How awesome is that?!!!!

 And also, he has gone to bed by himself several nights this week! After 5 years of spending at least 30 minutes, more like a hour, it has been soooo nice to just lay him down, turn out the lights and he goes to sleep! Ahhhhh, peace!!


So, I guess I've just spent too much time and too many words just to tell you that my little baby is growing up! He is growing, developing, gaining independance and I'm loving it!!!! :)