Monday, February 25, 2013


Just a year ago, Asa was NOT a people person! It just makes my day to see him so outgoing now! He waves at everyone and gives hugs to strangers! To be honest, sometimes he's a bit too social and friendly! His school is the perfect place for him to make friends though! This sweet girl is Asa best friend! She is the sweetest thing with him. Several kids are though!
Don't you love how Asa's hands are clasps behind her back! He's giving her such a squeeze!
This pic was followed by a big ole kiss on the lips! And I worried he wouldn't know how to interact with his peers!
Apparently, Asa is all delightful at school. At home, however, he's been pushing us all. He's started have terrible temper tantrums, melt downs or just rotten behaviors for a while. He used to slap his face when he was losing it. Recently, he started biting! He bits himself, us or whatever is nearby....including the bumper of the car and the deck!!! We are trying a timeout chair, where he bangs his head on whatever is close. He knows not to bite at school. He knows his bites hurt because he has teeth marks on his own arm. I hope this is a quick phase!

Tuesday, February 19, 2013


Asa works so hard in therapy. And everyday is his therapy! Simple things that we take for granted are work for him. He isn't always agreeable or happy to work though! And when he is done, he is DONE!

He's been working in PT and Aquatherapy with getting on his knees. It seems so simple but it isn't! And knees are important! He needs to use them so that he can stand up by himself without pulling up on something else. Try telling that to Asa though! He hates working on his knees! He's been doing a tad bit better though and I've even caught him playing on his knees all by himself!

This was in the toy room at the eye doctor last week!

tried to get him to work on his knees tonight and he was resisting. I said, "Come on Asa, knees are your friends." Barry responded with, "Until you are 45 or 46 anyway!" Hahaha! 

Just so you get an idea of how hard he works, check out this video of him climbing the stairs last week! Such a trooper!

Sunday, February 17, 2013

Mito Family

Today, I got to spend the day with my wonderful group of mito moms! They are my mito family! When Asa was diagnosed with mito 4 years ago, I got welcomed into a world of wonderful mito families in the Nashville area. From there I met 3 other families in the Memphis area.

It's just been the 4 of us for several years now. Recently, we added another family to our group when Emily found out her sister's niece was also affected. At a family meeting last fall, we got to meet 2 other newly diagnosed families. At lunch today there were 7 families represented with 2 other moms not able to join us. That makes 9 families, in our area, affected by mito!

 Conversation is easy for all of us. None of our kids are exactly the same but we share many similar stories. It took us all of 35 mins to start talking about poop! It only got more fun from there! I learn something (many something's, actually) from each of these ladies and I can't wait to visit with them again!

 Talk turned to the Mito-What 5K that's only a month away. If you want to sign up and get a tshirt and goody bag you better sign up quickly! They tshirt order will be turned in on March 1st! You can always visit the website and just make a donation to the UMDF. Check out this video of our buddy, Jackson and then visit the race page to make a donation or sign up today.


Thursday, February 7, 2013

Therapy Update

Just as a refresher for my memory I thought I'd review Asa's current therapy routine. Asa gets speech, OT and PT at school. He has speech on Mondays and Wednesdays for 30mins each. He was going in with a group for a little but now he has the SLP all to himself. He gets OT once a week. They work on things like copying lines, cutting and working puzzles. Asa tends to not look at what his hands are doing many times so all the skills are really helping. Asa also gets PT once a week. I'm stunned at how quickly he's gaining new gross motor skills right now! This has always been the area he struggles the most and now he is excelling. They are working on going up and down the stairs, pulling to stand and working in a tall kneel. Asa is also doing extra therapy. We started doing feeding therapy again a few weeks ago. Asa started wanting to eat but he was having trouble chewing and swallowing efficiently. So far it's been a lot of fun! I'm happy to know that even though he is slow he is doing all the right things to swallow without choking. The SLP is also working with him trying new foods and some sensory stuff. We've started using taco seasoning on a lot of his food. He has eating broccoli twice because it has taco seasoning on it! He's trying a lot of new foods! He's done Aquatherapy for over a year now. It went really great for a long time. Asa's first steps were in the pool. His first real walking was in a pool. The pool is awesome! Several months ago Asa got really tired of working in the pool. He screeched and squealed nearly every week. Just when I was thinking he was done with it, he flipped and started enjoying the water again! He did lose it this week though. We try really hard to get him out before he gets exhausted. That way he politely signs "all done", gives hugs, waves bye and gets out and redressed. This week he just fell apart. He screamed, cried, gagged and hit himself. As I tried to change his clothes he hit himself and the changing mat, both of which sounded like I was hitting him! Goodness, I ready to get him out of there! I've turned in an application for Asa to try hippo therapy. There are only 25 spots so I'm not sure if he'll get picked but I tried. Other years I've filled out the application but backed out before turning it in. I'm not sure how he'll feel about horses and I'm highly allergic but I thought we could at least try it out! I know this a pretty dry post. Maybe I'll get some pics in next time!