Merry Christmas!!

Autumn

Asa loves walking in the fall leaves. This morning the leaves were wet so I wouldn't get in the grass with him while we waited for my mom to pick him up for school. I promised to walk with him after school.  Anna picked him up after school. He usually comes in the back door, but instead he walked to the front walk. Yep, right under the tree I told him I'd walk with him under! Smart boy! 

He wasn't satisfied with walking in the few trees around the house so he pointed down onto the trails in woods beside the house. So, off we went! He didn't like staying on the trails. That's okay though because he did lots of PT work by stepping over fallen trees and limbs. He even picked up his own walking stick (twig really) and swung it around in front of us. I pretended he was clearing the way of spider webs. There's a slight chance he was trashing at the dogs walking along in front of us. In any case, I didn't walk thru a single spider web! I HATE spiders and their webs! 

We found the prefect grapevine to swing over a little ditch. I tested it out before the kids of course. Safety first! Asa didn't swing but cracked up at us! He did have fun walking across the ditch on a limb. So much for his fear of heights! I guess that's just the stairs. He did have a good grip on both of my hands and he got panicky the second time. Anna got a great pic of him with her cell phone!

What a great afternoon! 

No fear.....well, maybe just a tiny bit

Asa has had trouble with stairs since he started walking last year. Not just the regular trouble where he didn't know how to go down stairs. He's afraid of them. And not big stairs, like going off the porch. He has let us help him down the porch or from one level of our house to the other. He would freeze up going off the curb though! Completely freeze and scream and squeal! So he's worked a lot on stairs in all his therapies.


This week in Aquatherapy, he stepped up onto the box, walked over it and back down with no help!!! No holding the therapist hand, no hesitation, and for the first few times no resistance!! Once I got the camera out he did start to hesitant and then would squeal after he stepped down. Still it was great!!


He does his best work when I'm not paying attention. If I speak or he sees me watching, he starts being difficult. I waited until he'd done this up and over several times before I videoed him. Now he loves watching himself over and over!

 


I can't say enough good things about Aquatherapy! Asa's first steps alone were in the water. Asa's had some great therapist too. He tends to start out great, work hard for a few weeks and once the therapists are wrapped around his finger, he decides to lead the session! And by lead, I mean he only wants to play and not work! You can see how this is a problem. So far all of his therapists have been tough, and he hasn't gotten away with that long! Can you imagine the ear piercing squeals added to screams, both echoing all thru the pool area and into the waiting area? He can be LOUD! Thankfully, he's been pretty cooperative the last few weeks and look how it paid off! I'm so proud of him!

Happy 6th Birthday

Today is Asa's 6th birthday!! Time has really flown by. This last year has brought a lot of fun! We've seen the most progress across the board this year.

 Last October he'd just started walking. This year Asa has a cute little trot, he jumps and gets both feet off the floor when he's holding onto something, and he shakes his little booty when we ask him to. He understands everything we say to him. He also ignores us when he wants to. He still doesn't have any words but he's doing so much better at using the signs he knows, using his talker and using pointing to tell is his needs and wants.

 As my last post showed, Asa is eating up a storm!! Sometimes this causes terrible tummy aches but OTC meds are working pretty good. We almost never use the feeding tube. He tends to fidget with it if he can get to it. He usually has it popped open. And he tugs at it like its nothing! I guess since he's had it since before he was 1 year old, it is kinda nothing to him! I kinda thought that removing the tube would make a great b-day gift! I chickened out though!

 Like all of Asa's birthdays, this one is bittersweet. It's another year that's ticked by and the gulf between him and typical peers seems to widen in many ways even though he's made a ton of achievements this year. He couldn't stay in the pre-k class he was in last year just because of this birthday. Even though he's the size of the 4year olds, the skill levels are more equal and the school had everything just the size for little guys, he was turning 6 so he had to move on up. I'm still wrestling with the logic. We don't pass out drivers license just because you turn 16. We don't take drivers license away at 65 or move into retirement homes at 70. So being 6 years old, makes him a Kindergartener. Plus, now we have to pay for more activities with him. All those discounts for 5 and under are gone! ;)

 Of course, we realize and appreciate the blessings another year brings our family that many don't get a chance to experience. Even more so this year for me. Several special mito warriors have died in this year that Asa's turned 6. My heart is heavy for those sweet families! I look at Asa and am daily reminded what a blessing another year truly is! It's difficult to have a pity party for very long. So bring on Year 6 and I'll let God lead and guide like He's done since we first held this precious gift 6 years ago.

Look who's finally eating!!

I know it's been a minute since I updated! I just had to stop and update on some fun new goals Asa is finally meeting!

Asa struggled with feeding since he was 2 months old. When he was 9 months old we had a feeding tube put in so that he could grow. He was fed an elemental formula, but we stilled tried to get him to eat normally. He had feeding therapy until he started school when he was 3. Once he learned to drink out of a straw he was able to drink his calories instead of using the tube. We kinda thought this is the way he'd get his nutrition forever. And that was ok. Food could be for fun and he'd drink enough elemental formula to grow.

Then Asa decided to eat!he was eating so much that we got to reduce his cups of formula a day. He didn't eat a large variety of food but he still ate. Midway through last school year, I started sending a lunch box to school for him because he was taking other kids lunch trays!

As his appetite grew so did his desire to try new foods. He was having a hard time with meat and chewing. He would stuff the tiny bites of chicken nuggets into his mouth until he had the whole nugget in his mouth! Sooooo, we started feeding therapy again! He had a breakfast date once a week with sweet Amy, who tried to show him how to chew and swallow. He was not a great learner! He doesn't like following directions very often! Despite his poor cooperation, something clicked with him and he began eating without stuffing his mouth....mostly. and I learned some tricks to help him do his best. We got to a really great place where he eat without choking or me having to clear his mouth out so we stopped therapy again and lived happily ever after!

Not exactly happily ever after.... Now we have to teach him not to eat his art projects!!

And we should talk about not "loving" our food.

He is trying so many new foods! He has started eating scrambled eggs, oatmeal, French fries, broccoli and so much more! Today, he was fusing for Cade's fries and we told Cade to give him a fry to hold. Asa never eats fries but likes to hold them. This time, however, he shoved the fry into his mouth a held his hand out for more!!


We are doing well on the feeding, but we better start working on table manners!

Memorial Weekend

Barry is always off on Fridays so when he got to be off for Memorial Day it has seemed like a real loooong weekend! Friday we got a ton of yard work done. I know that may not seem like fun but it really was. More importantly than having a nice yard, it really makes me aware that Asa is doing well enough for us to get involved in projects and actually complete them! Usually we'd start projects and then have to stop for an Asa issue. It left me feeling very ADD and scattered to have so much half done.
 Not to say it was easy! Asa required lots of distraction and redirection! Cade played with him and was a great Asa helper! Cade got out Asa's plastic pool. He hooked up the water hose and let Asa fill the pool up. Once it was full though, we decided it should be in the shade so Cade poured it out and set him back up again. Again, once it was full we decided we should move it to the deck under the big umbrella. Cade poured it out and set asa up again! Thankfully, Asa didn't get outdone with us. All he really wanted to do was play in the water hose anyway! He never actually even got into the filled pool.

 Since we got so much done we decided to invite some new friends over for supper on Saturday. Asa enjoyed helping me cook! We had a great evening!

Then, Sunday we camped out on a creek that runs thru my parents farm. I'll just say that I was NOT into camping out! We had a lot to do today and I just wanted to sleep in my bed! We had a good time though. The kids were excited to get our big tent out. We enjoyed sitting around the camp fire and talking about the stars.
 

Check out this before and after photo.... This time last year Asa was using his walker to check out the planting. This year he is walking on his own but did like to have Dee Dee along for company while he checked the crops! What a difference a year makes!

Today we were invited to a cookout and fishing!!! Gracie was excited to try her fishing skills out again!

And she didn't leave empty handed!!! She only caught one fish but look how big that one was!! I measured him at 2 flip flop long! Real official, right!

HeeHee, she wasn't sure about the kiss the fish that I suggested!

Anna and Cade are kicking off summer breaking by working at Project Acts with our church youth group. They'll stay away from home and do service projects around town. I hope they have fun but more importantly, I hope they both stretch their boundaries and see the needs of people in our town. We can talk all we want about sharing God's love with others but these guys have a real opportunity to do this at a young age! Praying for their safety and boldness this week!

School's out for Summer

Today is our first day of summer break!! I'm usually super excited but not so much this year!

 Asa has had a GREAT year! He's just changed, grown and developed so much. His school is just perfect for him. It was a Pre-K center and all the kids were his size. The playground is perfect for him to play. All the tables are just right for a 4 or 5 year old. His little friends were precious together. His teachers were more than wonderful. I didn't want any of that to end for him! Our plan for next year hit a road bump and is now unsettled. I'm sure it'll work out fine but it's just one more reason for me to dislike change!

Before the year started I had doubts about Asa's ability to handle a full day of school but he handled it like a pro! This year he started eating instead of just drinking his formula. He made friends with some sweet kids that always wanted to take care of him. He loved giving hugs to his friends. He learned how to climb up to the slide and go down by himself. He learned how to go up and down stairs here too!!! He started watching Super Why and interacting along with the show just like he should. We just didn't know what he was saying when he "answered" their questions! Last night he was answering Wheel of Fortune too! He loves letters! There was never a day that I worried about him at school. He had wrapped too many folks around his little finger! Oh, how I will miss the people that took such good care of Asa this year!

Asa's sweet teacher, Mrs. Jeanna

And his aide, Mrs. Brenda

Cade and Gracie are done for this year too. We decided to keep them home this year and used the K12 curriculum through Tennessee Virtual Academy. I really had a hate/love relationship with this until about Christmas. Then it turned into a love/hate relationship. Cade loved being so independent and getting his work done mostly on his own. Gracie and I really started getting into a groove after the Christmas break. We really started having a lot of fun. And surprisingly, she got very independent also! She could log on to the computer and take care of several classes without any help or reminders from me!

In the fall they had to take an online standard test in math and reading. They retook the test a few weeks ago. Both kids did great! Cade was already in the advanced group for math but he also brought his reading up to the advanced level. Gracie went from low average in reading to high average in reading. She also improved her math score even though she was already in the high average group. I'm not a fan of standardized testing but I do like that this test showed me they have improvements and growth this year. I don't think it's fair to test kids against each other but it's a good measure when you test them against themselves. My biggest fear was that I'd waste a whole year and they'd have to go back to B&M school behind. Thankfully this didn't happen at all. We are registered for K12 next year but I'm still searching our curriculum to break out on our own. There's just soooo many choices! One thing is sure though, I love having them home! It's made life a million times calmer and less stressed.



Anna finished 10th grade and there was a small glimmer of hope that she'd try homeschooling. Sadly for me, she decided to stay at South Side! Lol! She branching out and is joining the band next year! She's full of talent but has always stayed away from the public spotlight! I'm excited she giving band a try and I think she'll be great! I still don't know how it's possible for me to have a high school junior!

No matter how much I want time to just move a little slower, 2013-2014 will see us with a Kindergartener, 5th grader, 7th grader and a high school junior! For now we'll enjoy the next 2 1/2 months!

Mercer Baptist Church Community Fun Fest

A neighboring church held a Community Fun Fest today. There was archery, fishing and great food. The best part was the fellowship and listening to the Word of God preached outside in His creation! It was a beautiful day all around!

This was Gracie's first time fishing. She only caught one fish but she's ready to go fishing again! She loved it!

She wasn't gonna take the fish off though and I was busy with Asa and pictures so thankfully a friend stepped in before her daddy had to help.

Asa liked playing in the little box of dirt.....

until he found the worms!

A boost of caffeine. Probably the only thing that kept him going until bedtime to night! Asa walked and walked today and had a blast!

May already.....

I can't believe we are in May already! The year is flying by! There's only 2 more weeks of school. I'll mostly be sad when the school year ends. I feel like we are just really getting a hang of homeschooling and what works best for us. Now it's almost over for a while. And Asa's just having the best year! He's grown so much this year. He loves his friends and they love him. A few little kids especially take care of him. It's pretty adorable! He's teachers love him to pieces too! I'll hate this year to end for him. it just seems so perfect for him! Right now, Asa and anna are both sick. They have high temps and achy when the fever is up but no other symptoms. Asa ran a low temp for several days before today. I hope they feel better in the morning.....or at least have symptoms that let me know what the problem is. It's kinda good that anna has the same thing as Asa. He can't talk so I ask anna how she feels and try to see if he feels the same way! Hopefully, they'll both feel better tomorrow!

Ball Game!

It's not often that Asa gets to go to the ball field. He doesn't tolerate many weather conditions....too hot, too cold, too windy. He doesn't like crowd noise. He doesn't care to watch a second of the game!

This year we've tried to involve him more. We've found he can't do double headers or late games! So far he has had some fun too, though!

Our city has a SN athletics organization. They offer a ton of sports but Asa has been so sensitive that I haven evn tried to sign him up. Maybe I should rethink that!

Despite how chill he looks here, most of the game was the opposite! It's pretty cute how he folds up to hold the iPad though!

This is our set-up. We must be a sight.....especially when Asa starts squealing and screaming! Good times though!

Double Digits

Our sweet, spunky, 3rd born, Gracie, turned 10 years old today! Double digits! She was pretty excited about it and had a party all planned since January! I let the date sneak up on me (did anyone else lose a whole week in April?) and didn't get invites sent out until the last minute! Thankfully, she has some good friends who showed up with last minute notice!

Check out my poor nephew, Jack, who was the only boy at the bowling party! He may not appreciate this at 10 years old but in a few short years he'll feel differently!

We retold the story of Gracie's birth. I remember when they brought her back to our room after her clean up in the nursery. Anna strongly favors me. Cade strongly favors Barry. Gracie never favored just either of us. After a few weeks and she still didn't have a "pop" of anyone stick out. I wondered if she might have been swapped in the hospital and even if she was would I want to know?! This was my "Pre-google" days or I'm sure I would've googled "home DNA testing"! I'm sure a lack of sleep and crazy hormones had nothing to do with my midnight creation of a Lifetime Movie of the Week in my head!

Fast forward 10 years and this girl is like my little clone in many ways! Anna may favor me more but Gracie acts just like me! Heaven help her daddy! She is soooo funny and makes me laugh all the time! She made me stop posting all her quick wit life insights on Facebook. I could probably start a fan page and make some money off her silly stuff!! She is so brave and tough! none of Asa's medical issues have made her bat an eye. And once, my nephew took a bad fall and was bleeding but she was right in there, blood and all! She is a tomboy and loves climbing trees, 4 wheeler riding and her jeans and tshirts. She also likes to play Barbies, sing along with One Direction and paint her fingernails. She loves soccer, basketball and softball. She loves to try new things and thinks she's the best at EVERYTHING she tries....she gets THAT from her daddy!

I have loved homeschooling her this year! There's a few parts of "school" she doesn't like at all but a lot of stuff she just eats up! It's a lot of fun working with her daily! Definitely one of the best decisions we've ever made! And even in the frustrating lessons, being together makes it completely worth it!

How precious are these two girls?!! She's 10 today but will be 16 in a blink of the eye!

Just so you don't think she's losing all her tomboy and turning into a girlie girl.....as we dropped off one friend after the party, they headed out to do some target practice shooting! Sweet girls!

As a bonus, Gracie got to go watch our Lady Vols play softball! She even got to get her glove and a ball signed by some of the players.

Hot

Asa's had a tough week or so! It's only mid April and the temps have been in the 80s. He school has an old boiler and the AC hadn't been turned on when the first hot temps started. He overheated a few times at school or I just didn't send him because the AC was not on. It took several emails and visits from Maintance but Asa went back to school today. He sure loves school!! 

This picture was taken around 8am on Wednesday. He had gone out on the deck and stayed out of the sun but he was already getting sweaty. I asked him to smile for his teacher and I got this pose. Right after I put my phone away he blew a big kiss too. 

On Tuesday, I took Asa to school but by 9:30 he was too hot so I picked him up. We killed time and ran errands because Asa had hippotherapy at 4. One of the errands was a visit to the school Asa will go to next year. My first question was what type of AC they have! Asa will be in a self contained class with K-5th grades. There's 15ish kids, one teacher and 3 aides. There were 2 Ks in the room when we visited. The other grades were out with their other typical peers in their grade level. We walked to the playground and met the other 2 aides and some 5th graders. 

Asa made himself at home! The teacher and aides seem great and seemed to go above and beyond for the kids. I did have some reservation though. First, that's a huge age range! Asa's a small 5year old. More like the size of a 3 year old. Some of the 5th graders are big! Yikes! Secondly, it's a looooong walk from Asa's room to the lunch room, typical K room, gym and playground! Having said that though, I have no doubt that Asa will be fine! This time last year Asa wasn't even walking! Who knows how much endurance he'll build up over the summer! Every time I try to prepare teachers for his behaviors, he does a million times better than I could imagine. He seems to know how to rise to the challenge! 

I didn't ask if the kids have a nap time. I'm sure Asa will let them know when he's too tired anyway! It's going to be a new chapter in our adventure for sure!

He's so cute on the horse! And he worked soooo hard this week! Again, each week gets better and better! 

Oh and since I complained about the heat, today has hovered around 50 degrees and strong cold winds! Who really needs spring anyway! Ping ponging between winter and summer is fun......NOT!

Odd

I've noticed a few pics of odd things Asa's been doing. This jaw pose is his "normal" pose. He routinely does this while riding in the van or watching tv. Maybe it's just me but I can NOT get my bottom jaw over this far!!

We recently taught Asa to give a thumbs up. And by "we" I mean Suoer Why?! He loves that show and "talks" to it right on cue. So funny! Anyway, I noticed that this boney place pops out when he gives the thumbs up. 

Just some pics I want to document in case I need them later! 

We've had some super nice weather lately! Asa has loved being outside. He has driven his Power Wheels a million miles! I think he has allergy issues though. He ran a low grade fever Thursday and had runny eyes with sneezing and coughing. I started giving his allergy meds again. They seem to make him sleepy though. He was crabby after lunch today! He's spent the last few days taking 2-3 hour naps in the afternoons and sleeping 12 hours at night! When he's rested he's ready to play hard though!!!

Hippotherapy

Cade and Gracie had ball games Saturday. It was a long day but we wanted to give Asa a chance to blow us away with how great he could handle stress. And he really did do great but he couldn't make it the whole day. This is how he spent half of Cade's game. Sitting in my lap, laying on Gracie and an umbrella to keep the sun out of his eyes. How much game watching do you think I got to do?!

Asa had hippotherapy today. It was at 5 pm instead of 4 pm. We ran in Sam's and I thought I'd give Asa a little of my Dr. Pepper to have alert during therapy. A tired Asa is a very cranky Asa!! He didn't want a little watered down Dr. P in his cup but he wanted MINE!!!! And he did really good during therapy. Maybe he needs a caffeine fix every afternoon like me! 

Just in case you think hippotherapy is only about riding....

Asa is sitting backwards on the horse while he places block shapes into the sorter. And if you notice he has to reach to get them in too! 

Here's a few videos. Asa is squealing and happy in one. The guys leading him were the best cheerleaders! I don't think I got video of them cheering him on. At one point he was on his hands and knees and in a tall kneel on the horse and these guys were so great with him. Those are very hard skills for him!! In one video they stop and clip colored clothes pins to the saddle. Then Asa has to pinch them open to get them off. And she was quizzing him on colors too!! Can you imagine all the work! It's amazing!!

Horses again!

Asa had his second hippotherapy session today. Last week was cancelled because it was COLD! And it was our Spring Break! Anyway, his reaction this week was more "typical" for Asa! He got overstimulated when we went in. It takes a lot of volunteers to run the program but that also means a lot of folks standing around waiting for their turn too! He was getting impatient and then they put his helmet on. It was still a little bit so he got more impatient! Then as he was on the deck the horse got nervous and they had to work that out which made him more impatient! Once he got on his horse he was pretty good though! It's such hard work! I also taught him the sign for "horse". When we talk about the horses he will sign it! So smart!!


 We had Spring Break last week and it was such a good week! Don't get me wrong, the weather was gross for a few days but we had some nice days too. It was just nice to be home and not running all around! While the weather was nice Asa rode his Power Wheel for 2 days straight! :) He has gotten really good at steering! Like all boys he likes to get into trouble! At first I thought he was accidentally getting stuck in the woods but turns out he LIKES getting stuck! He also like crashing!


 Since we were stuck snide a few days with gross weather I tried some potty training. Asa didn't leak a drop into the potty and I took him a lot! I started trying because a few times we'd take his diaper off and let him air out. He'd sit down and pee in the floor! Maybe I should just cover the carpet with plastic!! Oh well, maybe summer break!

4th Annual Mito What? 5K

Saturday was the 4th Annual Jackson Culley Mito What? 5K in Millington TN. The day started off with plenty of clouds and cold temps. The forecast called for rain but thankfully we didn't see any of that! Sadly, the honoree, Jackson, was not able to be at the race. Emily was with him at the hospital because he was sick and was admitted for observation. Thankfully he came home today, his 6th birthday! Team Asa grew some this year! My mom and dad, Asa's cousin's Rayn and Jakob, and my cousin Lacy, have been supporters from the very first race! This year we added Asa's birth-3 teacher (even though she didn't get to race with us) and Barry's cousin Jessica and her hubby Emmett. They are the runners in our group!

Told you they were runners! Both placed in their age groups! How cool is that! I've decided that if I'm not a runner (clearly I'm not!) then I'm going to throw all my efforts into being a better cheerleader! Thanks, Jessica and Emmett for running so fast for our boy!

How sweet is this picture?! Asa had a terrible case of Moma-itis and was overstimulated. Lots of people took turns holding him or distracting him so I could be social and chat. These teenagers were the best too!

Check out these awesome Mito Moms! Our little group of 4 families has grown in the last year too. I'm sad new families have gotten diagnosed but I'm thankful we have all found each other!

And the mito dads are pretty awesome, too! They don't get much credit sometimes!

What we did while other people ran! :-)

Asa started off the Jack's Pack by putting his feet on the line and taking off (justblike the little boy next to us did) but he turned around after 3 steps and went back thru the finish line!!!! He liked the flags!

Like I said earlier, Asa was overstimulated and antisocial at the race. He was a social butterfly and Mr. Independent at Chic-Fil-A though! When I got back from ordering Asa and Barry were coming out of the playroom. I commented that I wished Barry hadn't taken him in there. Lacy said that Asa got up and walked in there by himself while they we're talking! It was not a clear view of the playroom and someone had to let him in but he was ready to play! Gracie helped him climb into the towers and at one point he got onto the far side and was playing in the airplane. He would NOT come down. Gracie finally had to bear hug him and drag him to the slide where he happily slid down all by himself!!!

It was a great day with some good friends! Over $20,000 dollars was raised this year! Next year will be the 5th race. We only need to raise $10,000 or so more to donate over $100,000 for the 5 year total! How cool is that?! Angie said a $100,000 donation is enough to fully fund a research project! Can you believe little ole us could have accomplished that?!! Just little ole me and little ole you....fighting mito together!!!