Wednesday, December 5, 2012

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!

Friday, November 16, 2012

Busy Week

This has been a busy week for 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!!!! :)

Tuesday, November 6, 2012

Exciting news and a request!

Our super sweet mito friends have been accepted into a drug trial for a promising new treatment for mito. They will have to travel from Millington to Ohio every 3 months while Jackson is in the trial. They are selling Boston butts, turkeys and hams from Corky's to help with the expenses. I can't even tell you how deserving this family is! Emily raises money for the UMDF with a 5K in March every ye ar. She organizes our family meetings and welcomes newly diagnosed families into the area. They are true mito warriors and now they need some support of their own! This drug is having amazing results on many of the kids in the trials. Asa doesn't have the type of mito they are trialing the drug on but they think the drug will help all mito patients. It is truly the first promising treatment for mito! I'm so exciting for Jackson and his family! If any of you local friends place an order let me know and I'll pick your order up when I get mine. I'll deliver right to your door! And if you aren't interested in the meat then please consider just sending a donation. I'm terrible at fundraising and asking for money but this family really deserves this chance! So, here's Emily's Facebook message: Ok FB Friends.... I am selling Corky's Smoked Boston Butts $25.00 (4.5lbs. feeds 10-12), Spiral Sliced Honey Glazed Hams $40.00 (8lbs. feeds 12-15), and Smoked Turkeys $30.00 (8lbs. feeds 12-15) just in time for football season, Thanksgiving and Christmas, New Years! All meat will be fully cooked, wrapped, bagged and then frozen for food safety. They will be delivered in a Corky's gift box with heating instructions included. In order to be delivered by Thanksgiving I must have all orders by 10 A.M. on Nov. 13th. Orders can be picked up on Nov. 20th with time and place to be announced. You can pay me in person or mail me a check. I must have the money when I place the order on the 13th. I know this is quick so spread the word fast! Email all orders to me at Mail checks to Emily Culley 8852 Herring Hill Millington, Tn 38053 Thank you all so much for your support through out this mito journey! Here's Jackson's blog if you want to get more info on the sweet guy!

Monday, October 22, 2012

Donnell Farms

Last week, Asa's whole school took a field trip to a local farm. I went and Cade and Gracie got to go too. Cade was the best big brother and a huge helper! I wish I'd gotten more pics but I was too busy enjoying it all. Asa had a great time and managed very well. It was very windy but the temps were perfect. I was going to try letting him ride the bus but chickened out. He is handling sensory issues much better but I was afraid if he got tired and we had to ride back it might be asking too much! Maybe next field trip!

Check out Asa's finger going for Cade's ear! It's like a jab into your eardrum at random times everyday! Good times!

This is Asa's new laughing face, tongue to the side! He was cracking up at the kids jumping off the hay bales.
Such a good big brother! There were many examples of this big brother love!
And who doesn't love a corn box?!!! And Gracie's hair wasn't that poofy, it was so windy!
Asa loves, loves, loves the corn!
I'm so proud that Asa had a great time and that his whole school got to take 4 busses of 4 year olds out to the farm! It was a great day!

Tuesday, October 16, 2012

Up for a Laugh?

Asa didn't go to school today. He was gagging and pukey last night and woke up the same way. He was ok but it can't be fun to be so nauseated and pukey away from home....or anywhere really!

So, he spent the day in our school room with Gracie and Cade today. Gracie and I had our backs to Asa and were deeeeep in studying but I was aware Asa was letting out the big, loud belly laughs. I finally turned around and saw what was tickling him so. He would scoot around collecting card from the Pictureka game and bring them back to the fan that was sitting in the floor. I know, I know, he could loose a finger but he loooovvees the fan and I've watched and he's fairly safe, mostly I'm sure!

Anyway, he'd take the cards back to the fan and drop them on top so they'd blow around! He laughed so hard. Of course, as soon as I started video and he knew he was being watched he calmed a little! I love his laugh and wish I could make it my alarm and ring tone on my phone!!

Tomorrow, Asa's class is taking a field trip to a farm and pumpkin patch. We were gonna attempt the bus but I've chickened out. I think the farm will be enough of a new thing that the bus should wait. Maybe we can try it on the way back from the farm. At least if it doesn't go well the whole day won't be ruined!

Sunday, October 7, 2012

Party Post

Today was Asa's 5th birthday and his party!!

Asa was gifted a Dream Cake from Icing Smiles, an organization that finds local bakers to make amazing cakes. Our first bakery backed out just a few weeks ago. Thankfully, HaliHannigan's Cupcakery came thru and made ads an amazing cake that tasted even better than it looked! 

This is Asa showing you he is 5 today! Yes, I know he is holding up 10 fingers but he means 5!!! 

We painted some of Asa's supply boxes into huge building blocks. The big kids liked these more than the little guys!

I also found a big blow up bowling game!

I'm so thankful to have this little guy! 

Thursday, October 4, 2012

Birthday Time!!!

For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret,
intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. How precious to me are your thoughts, O God! How vast is the sum of them! (Psalm 139:13-17 ESV)

Asa's 5th birthday is Sunday! A birthday is a time when we look back and remember and look forward with hope. That's not always pleasant in our situation. I don't found memories of holding and snuggling with Asa in the hospital. He was in the NICU and I went home alone. His first year was hard! There was grieving, sadness and I was bitter for a while.

Then I really soaked in these verses. I mean, SOAKED in! Let them go into my bones, drenching every ounce of me! Asa is no surprise to God! We sat in shock and tears realizing something wasn't right with our boy, but God just smiled and said "he is perfect"! How can I argue with the Creator!!!!

Each new development will be the same. Whether Asa is walking or not. If he starts talking or not. If he eats or doesn't eat. If we endure heartache, God is in control! He's got this! Asa's future is written and I trust the Aurthor and Designer!

We will celebrate Asa's blessed 5 years on this earth on Sunday from 1-3pm at our church. Asa's been gifted a Dream Cake by Icing Smiles and I'm sure it'll be amazing! There will be plenty! If anyone local wants to join us, please come! We've had so many praying for us all and you deserve to celebrate and be in awe of God's perfect creation too! If you need directions just send me an email or comment but I'd just soon not advertise it for the WHOLE world to see! Lol

And just so you are warned, Asa may completely freak out and want no part in a party so he may watch from a distance. Or he may jump right in and attack the party! I'm hoping he'll have a blast but I'm ready to roll with him needing a break too! So come celebrate with us!

Friday, September 28, 2012

Knot head!

After all of Asa's great walking yesterday, today didn't go so well for him!

I got a call from the school as we were having lunch here. Asa had fallen and could I come. Now, he has fallen several times but none that required me to pick him up so I was slightly concerned. Only slightly though because my aunt was the one who called and I knew if there was a huge concern they'd get him to a doctor. It takes a good 30 minutes for me to get to his school.

So I rushed to the school and found him sitting in the nurses lap playing with books on her desk! He was laughing and smiling and happy. The bump was huge and colorful and it really did make me weak in the knees to see it! Then he would poke it and I'd want to pass out! He was completely unfazed though!

Apparently, they were walking down the hall and he just stumbled and fell. He doesn't try to protect himself at all. His poor teacher said it was like it was in slow motion and she just couldn't grab him. I've been there and done that! She said she almost got sick just knowing it was going to be bad. And get this, Asa never really cried! He didn't freak out and get sick! He didn't like the ice pack but he never acted like it hurt or scared him!

I went ahead and took him to the doctor just to be sure he was ok. I thought he'd probably wait until 9pm on a Friday night to make me worry and wish I'd taken him in. I've been there and done that too! Anyway he was just fine. He is still just fine! We were talking about it at supper tonight. I'd ask questions and he'd point to his boo boo. He'd show me how he has to put his hands out by slapping the table. He pointed to his shoes when I asked if he tripped on his shoes. He's a smart cookie, that one!

We also talked about how he needs to hold his teacher's hand. The boys and girls walk with their hands behind their backs and Asa follows along. No one has ever made him do this, he just realized the other kids were so he started putting his hands behind his back. Again, pretty smart cookie.....a smart cookie with a huge knot on his head! :)

It's all just another one of those milestones and boo boos that kids get and we are blessed that Asa is walking enough to get one too. But one is enough, please!!!

Thursday, September 27, 2012

Hooray for accessibility!

Our town has a really great accessible playground. I remember when Asa got the wheelchair and I took him to the playground for the first time. I could push him up and down the ramps and over the bridges. He loved it. Thursday night, we stopped back by there on the way to Gracie's soccer practice. It wasn't very crowded but I didn't take video so we stopped on the way out and it was pretty packed! Even though it was Asa's bedtime and he was worn out and the place was packed, we got some decent video of his walking all over the place by himself! It's hard to imagine that he just took his first steps nearly 3 months ago after working 4 1/2 years in PT! And all the glory goes to God! We have not accomplished anything in our own power!





Monday, September 24, 2012

PALS picnic

On Saturday, a local church held a picnic for special needs families. They were promoting the churches special needs ministry called PALS. They also had several organizations that serve the special needs folks in our area. While we aren't in the market for a new church family, I love to meet other special families around here. We also got to see a few therapist we haven't seen in a while and some old friends that we've missed.

They had an inflatable slide and bouncy house. I was not going into the bouncy house but I did ride down the slide with Asa several times. I really wish we had a picture of the back of this thing! If you had seen me holding Asa and climbing to the top of it, you'd realize why I had to stop after 4 or 5 rides down! Asa loved it though! He'd squeal at the top because I couldn't get us seated fast enough and then he'd squeal at the bottom because it was over!

There was also an arts and craft table. Asa made a pumpkin, with a little help!

 He loves to clap for himself!

 And signing his artwork! Love how he sticks out his tongue when he concentrates!

We took several breaks but it was a beautiful day and the weather was perfect!

I think Asa's favorite activity was the music therapy time! The leader was playing a guitar and singing. The kids, small and older, picked instruments and joined in. Once Asa got promoted to the drum but he really only wanted to put the floor dots on the top which completely muffled the sound!

He was good with the clapper things, I'm sure they have a better name too. He was really good with the maracas!

Anna was our photographer and she did a great job capturing the fun....even if all she had to work with was my iPhone!

Saturday, September 22, 2012

Mito Awareness-Day 7

Mito is often called an "invisible" disease. It shares this label with many disorders like, Chronic Disease Syndrome, fibromyalgia, depression and more. To the outside eye, people with these disorders may look as healthy as you or I. When you look more carefully, however, you see all the effort it takes to look so "healthy".

 Mito is sometimes called "invisible" for the same reason. With careful attention to diet, stress, hydration, and various other interventions, mito kids often look very healthy for long stretches of time. Often it only takes a small cold or virus to bring the house of cards tumbling down. And it's often a hard crash. A crash with lasting results. Sometimes it takes much longer to REbuild the cards than it took to build the house the first time.

 I think that's the scary part. Watching and celebrating all the accomplishments with the fear that it'll come crashing down by a simple fever or virus. I try so hard to appreciate each new skill Asa learns without the fear of tomorrow. He's experiencing a huge developmental boom right now and I want to savor each moment. It's a good perspective to have overall though. None of us are promised tomorrow, after all.

 Another aspect of the "invisible" mito is the siblings who watch their brother or sister battle mito. I think they often feel "invisible". Some kids are better at getting those feelings out than others. I know at our house the siblings think Asa is spoiled. I assure you, he is no more spoiled than they were but he does require extra attention and time that does interrupt their lives. It's a tough balance.

 And I'm sure some siblings have to grieve the healthy sibling they thought they were getting. As parents, we spend time comparing our babies progress and the pain when those delays add up is awful. We learn to love the gift we've been given but there's still a longing for the child who fits the standard mold. Siblings must feel a similar longing. Instead of watching their brother play soccer or T-ball, they sit on the sidelines of therapy and doctors appointments. I'm also certain that having a brother with special needs can affect friendships. No loud sleep overs or late night movies. No picking up and running out the door at a moments notice. And how do you react if you have a brother or sister with delays and your friends use the "retard", as kids often do without thought or in ignorance?!

 And lately, I've been wondering about the future. The far, far distant future I hope, but what would happen if Asa outlives Barry and I. Would his siblings work together to provide and care for him? Will one or more consider him a burden or just live too far away to help out? Will anyone give up a dream so they won't be too far away to help out? Oh the worries! I know God is in control and Asa will be fine but I'm convinced Satan uses those worries to distract us from focusing on God's providence and blessings!

 And that is where I end my Mito Awareness Week! In the care and love of the Great Pysician! My God is an awesome and powerful God. He is capable of healing and He is more capable of comfort and shelter when there isn't healing. After all, He knows better than anyone what it's like to watch a Son suffer and die. He gave His only Son to die as a replacement for us. It doesn't get more comforting than that! And with this assurance I know that cure or no cure, our family will be alright, no, even more, BLESSED to be covered and protected under the Mighty, Everlasting, Loving grace of God, the creator and designer of all things, even Asa's mito! He knows what the doctors or science can ever figure out. That gives me peace to battle on as long as I'm blessed to hold Asa in my arms! After all, none of us are guaranteed tomorrow!

Friday, September 21, 2012

Mito Awareness-Day 6

Asa's cute and all but why should YOU care about mito?!

Did you know that every 15 minutes a child is born who will develop mitochondrial disease by age 10?

Did you know that more children die from mitochondrial disease than childhood cancer?

No, well, how about these diseases?

Do you know anyone with autism, Alzheimer's, Parkinson's, diabetes or cancer?

All these diseases have elements of mitochondrial dysfunction to them. When the cells in these body systems start dying we get these and many other diseases. But what if there was a way to boost the mitochondria in the pancreas? Would we find a better, long term treatment for diabetes? Maybe a cure?

We need much more research for all these diseases and the underlying, common thread is the mitochondria so why not start there.

Now do you see how mitochondrial disease affects us all!

Tomorrow, the invisible mito.....

Thursday, September 20, 2012

Mito Awareness-Day 5


There are none....

At all....

The only thing we can do is manage symptoms. We can avoid stresses on Asa's body that require too much energy, like overheating or viruses or fevers. We use the feeding tube to keep him hydrated when he is sick. We make sure he gets sleep.

Other kids may need oxygen, BiPAP, TPN, trachs or other higher level interventions.

Asa gets occupational, speech and physical therapy at school to help him. He has been doing aquatherapy for almost a year now. It's been amazing too. Asa mostly refuses to do scheduled work but even "play" in the water is extra resistance he doesn't have on land. Asa has really been blessed with great therapist! From the time he was a month old until now.

There are other unconventional therapies like HBOT that likely help but are considered off label and are not covered by insurance. There is no denying that many kids have had great improvement though!

We've also tried other things that might help, like supplements and vitamins. Asa was on Coenzyme Q10, levocarnitine, creatine, folic acid and riboflavin in super high doses for many years. We'd add a few more in and take a few out. We really couldn't tell a difference at all after a while. At first there was a huge change in his energy level but once that wore off it was back to his baseline. Finally we just stopped all of the vitamins. Lots of kids have great success with the supplements though. And we may start them up again in the future.

There is a bright light on the treatment front. It is still many, many years away though. A new drug is being tested and has had great results in most kids. It's EPI-743 if you need details for your googling! I pray that this is a future treatment and that it is available quickly! It is not a cure though! We still need a cure!

Tomorrow, we'll cover why YOU should care about research and a cure for mito!!

Wednesday, September 19, 2012

Mito Awarness-Day 4

All about the gut!

Let's start off easy. Asa has food allergies. He's allergic to dairy, soy, and nuts. I've toyed with this because he doesn't have a huge reaction, well, not an anaphyaxis reaction. He just gets a belly ache and is miserable and it's not fun but it's not deadly. I stopped toying with this, however, when I hoped that he could get off his reflux meds if he stopped his aggravating foods. His tummy just felt so much better that we've mostly left him off them. This is easy enough to do because Asa gets 99% of his calories from formula. He takes 4 8oz cups of Elecare Jr. Vanilla per day. He will try more foods than ever but he just can't eat enough to keep gaining weight without the formula. Every so often I get on a big kick about switching him to food but it back fires with lots of puking and weight loss.

We are just thankful that he started drinking the formula from a straw cup and trying new textures. This keeps us from using his feeding tube. When Asa was 4 months old he was so malnourished that they put a tube into his nose and down to his belly. Using this tube proved that he could gain weight he just had to eat and not refuse EVERYTHING! The tube was removed 2 months later but Asa still would refuse to eat and at 9 months old was only taking in 8-9 oz of formula per day! This time they put a tube straight into his belly called a G-tube. It was such a blessing! No more fighting to get life saving nutrition in him. Today, we don't use the tube much. Occasionally for meds, when he's sick we use it for hydrating him but I can't remember the last time we fed him with the tube! It was a long journey and we won't likely take the tube out but if you need more details about our tube journey, just ask.

Now let's get ugly! Asa has a horrible time with poop! If it isn't too loose, it's too hard. We've tried tons of meds and interventions but usually he deals and takes care of the issue pretty well on his own. The neds all made things worse in a different way. We do use enemas when the going gets tough.

Asa also pukes and gags a lot. He is maxed out on reflux meds. We've chased down nearly every test to tell us what's going on. We've let out some pretty invasive stuff because the only option is surgery and we aren't doing that right now. I think we've all gotten pretty used to the puking now. And it isn't a daily issue like it was in the past. I think he just has a sensitive stomach and there isn't much we can do about that!

Hopefully that gave you enough detail but not too much GI info!

Tomorrow, we'll talk about treatments....or lack thereof!

Tuesday, September 18, 2012

Mito Awareness-Day 3

Another big energy user is the brain. You brain needs a lot of energy to function. Lots of mito kids have seizures because their brain isn't getting enough energy. This is not the case for Asa. We are constatly told that he is at greater risk for seizures and he's had a few EEG studies but he doesn't have seizures right now, and may never.

He does however have other signs that his brain is affected. He has many "autistic features". He startles easily and has an overreaction to loud or sudden noises. He doesn't like certain textures, like soft or cuddlely. He seeks out rough or hard surfaces, like sandpaper or concrete. He has a hard time playing with someone and mostly plays alone or he interacts with others to get what he needs. He likes to watch things spin or open and close. Instead of playing with toy cars, he likes to just spin the wheels. He does however like to be held and hug and interact with us. A lot of kids with autism can't do that so we are grateful for every smile, laugh and hug we get.

Asa also doesn't talk. At all. He vocalizes and grunts. He squeals, laughs and screams. There is sound but it isn't our language. He does tend to use the same sounds over and over but they mean something different each time he uses it. The doctors told us last week that the lack of speech was because his brain was affected. He does understand a ton of what we say so when he gets a way to communitcate I'm scared of what he might tell!

Asa also just has general cognitive delay. He can't identify colors or letters or numbers, even by pointing that wouldn't involve speech. He does know who each family memeber is so he can retain info so i'm hopeful he can learn these other skills just at a slower pace.

Asa is also being treated for anxiety. This helped with many of his sensory issues. I hate him being on medication but there's no doubt it has contributed to many of his big changes! Before the meds, he couldn't go to new places or meet new people. He was so afraid of everything around him that he wouldn't even try to use a walker, much less walk on his own.

Asa's brain also has a hard time regulating some of the "natural" things that our bodies do all day. He is heat intolerant. He gets too hot very fast and then doesn't cool down as fast as we do. This really takes a toll on his body when it happens.

Make no mistake though, you may see "delay" or "struggle" or "can't do" a lot in these post but Asa is a blessing and a joy! Watching him discover something for the first time is amazing. And we get to see him do this daily in one way or another!

Tomorrow, we'll tackle GI issues!

Monday, September 17, 2012

Mito Awareness-Day 2

I thought I'd just move my "awareness" info over to the blog and then link to FaceBook. I just need more room to talk than FB will allow!

Mitochondria are responsible for making the energy our bodies need to develop and function. Asa's mitochondria don't make enough energy so some of his systems don't work too well. Keep in mind that mito affects everyone differently. No two cases are exactly the same. I'm just sharing our experiences with Asa and his mito.

You'd probably notice that his muscles don't work well before you noticed anything else. His floppiness was our first clue something was wrong. Right after he was born, he spent 5 days in the NICU learning to suck and it was noted that he was hypotonic or floppy. His muscles are like rubber bands that are stretched out and loose. He has muscles but it take much for effort to flex and release them like he needs to in order to function "normally".

These floppy muscles don't just affect the big things like walking but also his biting and chewing, talking, smiling, holding a crayon, tying a shoe, using sign language, and so many other things. He didn't get head control until after he was 1, didn't sit without support until he was 15 months old, and couldn't get himself into sitting until much, much later. He is almost 5 now and can't crawl but learned how to walk 2 months ago at 4 years and 9 months!!! Even now his walk isn't "normal" but he has to tighten up his muscles so his brain can tell them how to move. This creates a kind of Frankenstein walk that too adorable! And when he sits without support he still tends to stack to support himself. The closest thing I think to describe this is like us sitting on a bleacher for an entire baseball game or a stool with no support for a long period of time. It tires him out!

Because our GI system is all about muscle control, Asa also suffers from GERD, dysmotility, constipation and diarrhea. Another important organ is essentially and muscle too and that is the heart. Asa heart is great but we get it checked out every year or two because he is at a higher risk for heart issues.

Tomorrow, we'll tackle how mito affects his brain.

Wednesday, September 12, 2012

Yearly Mito appointment

Man, it's nice to say "yearly" appointment! We didn't go to Houston to see Dr. K this spring so Asa has truly been a full year without seeing a mito doc. I even tried to get out of this appointment. I emailed Dr. Tyler a few weeks ago to tell him how great Asa is doing and did we need to come. He said yes and we got in pretty quickly. I like the new system, we saw a Nurse Practitioner first. She was great and took great notes. Then Dr. Tyler and 4 med students joined her. I think we were all kinda scared of what Asa's reaction would be to such a crowd. He did gret though! He showed off his walking skills, flirted with the students and got Dr. Tyler to pick him up and Asa laid his head on the docs shoulder. Pretty cute! He also squealed, screamed, hit, flopped, thrashed and acted up. They got the whole Asa picture!

We talked about Asa's activity threshold. He recommended no more than 30 mins of activity for Asa without giving him some down time. And extra fluids if he is hot or very active. This is important info for school. Its hard to judge when he's had too much until about 2 minutes too late! I have a theory that a lot of Asa's GI stuff at school happens when he's been stressed in other ways. Like when he's too hot and using energy to cool down, or if he's been too busy and his muscles or brain are trying to keep up, or when he's trying to be on his best behavior and then gets home and erupts. Dr. Tyler didn't think it was 100% accurate but I like it so I'm sticking to it! He thinks that Asa could be mildly sick with a regular virus and his body is just more reactive. I agree with that too but we are talking like 2 or 3 times a week he has diarrhea or pukes. That's just too many viruses. And if his body takes a harder hit it should also take a longer rebound. Asa's fine the next day, after a night's rest. Either way it doesn't really matter. It's part of his mito and all we can do is what we are doing.

We also talked about speech. Asa has been more vocal and has more variations to his sounds but it's not words. He will try or mimic "more", "Moma" and "anna". He doesn't use them on his own though. I had hoped that his lack of speech was muscle related but he's had lots of training in speech therapy and no words. Dr. Tyler confirmed that it's likely a brain issue, a language delay in his brain's ability to use language. It's encouraging that his receptive skills are so good though. I still think we just need to find the right avenue for him to express what he's storing up in his noggin, no matter if it's signs or a device. He thinks that Asa's delay keeps him from finding and using a different pathway.

He also referred Asa for an autism eval. I'm torn on this one, folks! He has many "autistic traits" but is it better to just leave it at that? Would he benefit from getting another label on his chart? I'm not even sure he'd qualify for an autism diagnosis. The referral will likely take a while so I guess I can think and pray on it. If there's any benefit for Asa then I'm all in but there's no need to pursue it just so we can check another a box on the questionnaire.

We took lots of blood too. The tech stuck his right arm and dug and dug. He was grumpy and growly at her but not like I would be! He watched the whole thing. She finally gave up and unhooked him and Asa took a deep sigh and slapped his left down on the table like he was so over the whole business. We all cracked up. She got his left arm with very little trouble and Asa screamed like crazy! Crazy boy!

One of the labs was for a test being run by Transgenomic. It looks at the nuclear DNA that Asa got from both Barry and I. We had already tested the genes he got from me. A mutation was found but Dr Tyler thinks its a benign mutation. I have been tested for the same mutation and I have but am not sic *cough, cough*. Barry thinks that he is a perfect human specimen and the test won't show us anything new! In all likelihood, it'll find a billion useless mutation and still no causative one. That's fine too. "The science just has to catch up to these kids", is what they tell us mito folks. Come on science!

Other than a call when the Transgenomic test comes back, 6-8 weeks (?), we are done until next year! We still see GI every 3-4 months but that's much better than the rotation we were on just this time last year!

Oh, and as we pulled into the driveway, only 10hours after we left, Asa started puking! He was pale and his eyes were droopy. He had a 102 degree temp. He looks sick. I'm not so sure though. This is the third time he's done this in the 4 weeks since school started. He'll look so sick but then bounce back in the morning. Either it's an 8 hour bug or my original theory.

Oh and there was a particular ugly day when Asa lost muscle control and couldn't sit or stand, his temp was low instead of high, he couldn't control his eyes and they just rolled around and he couldn't keep anything down. I just knew he was super sick. He woke up the next morning ready to go. Now we are told that since Asa's at greater risk for seizures to let them know if this happens again! I'm praying it doesn't!

Anyway, I'm hoping he wakes up perky tomorrow and it's not a bug or seizure, just an Asa thing!

Monday, September 10, 2012

Some Nuggets

There are little nuggets of this life that I don't want to ever forget so I'm gonna put them out there on the big ole Internet so they'll live forever!

~ A few weeks ago we went to the zoo. Leading up to the trip we talked a lot about what we'd do and see. Asa always tapped the elephant on the iPad book we read so we learned the sign for elephant and made sure to spend time at their habitat. We used the sign a lot but how often in real life do you say "elephant" so it fell by the wayside. Now if I ask Asa something and he can't remember the sign, he throws out "elephant"! "Do you want a cookie?" "Elephant"!!! :)

~ When I lay down with Asa at bedtime, he likes to toss and turn and play. When I say "close your eyes" or "it's bedtime" he lays on his side, puts his hands under his face and makes a snoring, growling noise.....and then laughs! Wonder who he hears snoring?!

~ I asked Asa to try meatloaf at my mom's yesterday. He is eating very little these days and he shook his head "no". I told him if he tried one bite I'd take him on a 4 wheeler ride. He immediately took a bite and signed "more" then pointed outside! I should've bargained with a whole plate of food!

~ When Asa was a baby (nearly5 years ago) we bought an air purifier for his room. We didn't get it to purify the air, although that wouldn't be a bad idea, but because it makes a great white noise without having all the air of a fan moving around. A month ago Barry opened the cover and the filter was still wrapped in plastic!! Now it purifies and make a white noise that puts me to sleep when I lay down with Asa.....see above snoring comment!

~ Asa loves school! If I get him dressed but sit him down to finish packing his lunch or bag, he walkes to the door and shakes the handle while fussing at me! When he ready, he is READY!

~ I talk about colors a lot with Asa. I can never tell if he fully remembers them though. Sometimes he identities them correctly when quizzed, sometimes not. Tonight, without any prompting, he pointed to his blue changing pad, my blue shirt and his blue shirt! He may not know blue but he knew they matched!

~ Asa has a friend at school who pushes his chair out for him and pats the seat or table at breakfast time. How sweet is that?! His name is Andrew and he sports a faux hawk and I could just eat him up! But it'd probably embarrass Asa! :)

~ Asa has 6 other boys in his class. His teacher was helping one of the other boys in the bathroom and left Asa standing in line with his friends. When she turned around, Asa was not in line. She looked in the hallway and he was standing at the door to his room from last year. So smart that boy! And not good at follow directions!

Tuesday, August 21, 2012

School Days

I think we are really getting into the groove of this online schooling! Gracie and Cade both had classes with their online teachers so that freed me up quite a bit! They said the classes were over the lessons we taught last week so I guess we are a little ahead. That'll give us a little wiggle room I guess.

Gracie hates all her journal and writing time. She argues everytime. She will not do complete sentences when the instruction call for them but then writes full sentences when only a short answer will do! She claims to have no imagination and hates spelling. BUT....last night she spent 45 minutes on the school computer writing and printing a Christian song she made up. All on her own! No prompting from me! Then tonight she sat and made a list of "Everything my room needs to make it fun without TV"! This is exactly what her writing class is trying to get her to do! She grinned sheepishly when I pointed that out!

We usually save Gracie's music lesson for after Asa gets home. The songs are fun and involve movements to go along with the lessons. He really gets into it! Today, after Gracie was done Asa wanted more so we got out the tambourine played more! He had the best time!

We've had some really fun conversations and great times in our school room! I'm so glad we are doing homeschooling this year! I'm blessed with funny, sarcastic, sassy kids with quick wits. That makes for some fun school days....mostly fun! :)

Asa is doing well in school too. He has done much better with nap time this week. Today I asked if he played with his OT. He put his finger to the corner of his eye, which we'd realized he created to say "cry". After texting his OT and teacher I found out that he liked OT but did get upset when he went back to class! This is the first time, the very first time, that's he's been able to tell me something about his day!!!! Amazing! I really think he could pick up on learning sign language so quickly. We learned "elephant" at the zoo Saturday and have only used it a few times often do you say elephant!...but today Asa was playing an iPad app with an elephant in it. He started trying to sign "elephant" again! Wow! He really is a sponge and understands everything we say! If only he could tell us what's on his mind! Maybe that'll be our next huge milestone!

Friday, August 17, 2012

Zoo Field Trip

We had so much fun today. The Tennessee Virtual Academy folks had a meet and greet at the zoo. We woke up this morning and apparently it had stormed overnight but we slept right through it. The forecast still called for rain but the chances were slim and we headed out just hoping and praying we wouldn't get drenched! Thankfully we only got drizzled on some and it was kinda fun to play in the rain! Plus, the zoo was pretty empty except for the K12 kids. It was kinda a perfect day for the zoo!

It's been years since we went to the zoo and I'm sure Asa doesn't remember it. Cade thought he was too big for the zoo. Gracie was super excited! I liked the new Teton Trek that has a huge log building, the wolf and bear exhibit and lots of trees. Gracie loved the snake house and had to go in twice! Asa watched the elephants and liked the train. Cade was too big for it all but did get great pleasure in splashing us with puddles he jumped in! It was kinda fun!

You can see Cade thinks he's too big!

Riding the train. I'd try to hold or touch Asa when the train jerked or wobbled but he'd shove me away. I guess he's too big too!

They had a welcome sign up for the K12ers. I half joked about a pic but since the kids stepped up there I figured I better take the pic! Cade was trying to cover the name but instead he looks like Vanna White showing it off!

And more of my torturing of Cade. He took this pic because I promised him an Oreo Blizzard from DQ on the way home. And I did buy him one! We had so much fun aggravating each other today!

K12 paid for the kids to get into the zoo and a feeding stick for the Birds and Bee exhibit. The birds were wonderful until they swooped down near me. I may have squealed and took my stick away as the first bird flew at me!

Cade and Gracie were fighting over this bird in the tree. Just like siblings! An enclosure full of birds and they fight over the same one! Barry actually caught the first one.

They were pretty birds as long as someone else was holding them!

I ran out of storage on my iPhone and couldn't take more pics. I have 600 pics and videos saved. What can I do with them now? I want to keep them just not clogging up my phone. Any techy folks out there?

I enjoyed meeting some K12 teachers and other parents. There is another fun day at the end of the month locally and I'm more excited about that!

Thursday, August 16, 2012

First sick day

Asa had his first sick day this year! As Barry said, it only took a week of school germs! His teacher called Wednesday afternoon to say that he'd had 3 bad diapers. Then he started puking! And he puked and puked and puked! He had me a little worried though because instead of playing his normal sick cards he pulled out a new deck!

He never ran a temp and was low instead. He was pale and cool to the touch. Instead of being lethargic, he was giggly and silly. He would try to sit up but would just fall forward. He would try to roll off the couch and stand but couldn't bear weight so he'd melt into a pile on the floor but laughing all the time.

What had me the most concerned was that he couldn't keep his eyes still. They just rolled and drifted when he tried to look at something. It reminded me if when he was sooo tiny and couldn't focus his eyes. Not a fun thing to watch!! And he didn't like it either! He kept covering his eyes.

After several failed attempts at getting Pedilyte to stay down, he finally kept some down and slept thru the night. This morning, he felt a little warm and was tired and weak all day but at least he was walking some and he could control his eyes! He wanted to drink all day and ended up getting tons of fluids in. By afternoon though he belly was hurting and I drained nearly all his fluids back out. He has replaced some and even self fed a piece of toast at supper.

Since he was home, Asa got to do some school with us. When Gracie was doing her online lesson and got an answer right Asa would clap and laugh! He did great but didn't like nap time at home anymore than he does at school! :)

Gracie, my hypochondriac, was concerned that if she got sick she'd get germs on Anna's laptop that we use for school. I guess the downside of homeschooling is you don't get sick or snow days! I just hope no one else gets it!

Tuesday, August 14, 2012

1 week down, 35 more to go!

One down and 35 more to go! Ha, I just realized as I proof read, the title could be pregnancy related too! Don't panic! I'm NOT pregnant! I'm talking about school!

Asa really likes school. He's eager to go in the mornings and may have a slight hesitation at the classroom but I don't think he's cried at least not at drop off! Nap time is another matter! I had planned on picking him up before nap, but he'll have therapy 2 days and I can really use the extra time he's at school for Cade and Gracie so I've been leaving him for nap time. The first day was awful, I'm told. He screamed and cried until he got sick. The second day was much like the first. I think it has gotten gradually better and today he didn't cry as badly and he stayed on his mat more. His teacher said at very end of the hour he actually laid on his back and played and giggled! Yay! His therapy should start next week. I'm excited because he's made tons of improvements over the summer! Of course, he started walking but he also has been more vocal and even trying to mimic sounds and words. I'll have to video some and post.

It's also been a full week of using the K12 program and homeschooling Gracie and Cade. I really, really like having them here. I think we are all getting adjusted to the program too. Cade likes to work on his own and gets to pick which order he does lessons. Gracie's work requires me to stay pretty close to her side. The last 2 days have gone much better than the first day last week! We have a Back 2 School Bash Friday and I'm looking forward to getting some tips from seasoned parents and the K12 teachers.

Cade says he loves homeschooling. Gracie had been begging to homeschool for years and is not so sure about it now! She said yesterday that she just doesn't like any kind of school! And that I can believe! I think she's about decided if school is school then she'd rather have lunch and PE with her friends than Cade and I! :)

A huge, huge, huge positive to our homeschool is that Cade and Gracie are getting along so much better than just a few weeks ago!!! They have played and created PE games and even did their own literature reading while sharing the recliner.....well until rough housing got involved and Gracie ended up on the floor and Cade was hanging off the side but both were laughing their heads off! All good fun! Our afternoons are peaceful too. We've come upstairs to the school room to work on some extra stuff a few times but it hasn't been like normal homework. If Asa needs more attention then we can just finish the work first thing the next day. I keep telling people that it's only been a week and I'm sure we are still in the honeymoon phase, but I really like our new schooling! If something changes we'll just adapt though. We've gotten pretty good at adapting over the years!!!

Saturday, August 4, 2012

Update Time

I can't believe it's been a month since I last updated the blog! I blame FaceBook! It's so easy to go on there and send out short updates and pics but then I never go back and share here.

Since the last update and video of Asa walking in the pool, he has started walking on dry land!!! A few days after our vacation he was leaning against kitchen cabinets and I asked him to walk to me. He hesitated so I said "just like you did in the pool" and he came to me!!!! I nearly had a heart attack! He did it several times in a row. Each time he'd scream and cry when he got to us. I really don't know if he was panicked because he was on his on or mad that we stopped him!

The next morning I got video of him just after he woke up. This time he was happy about walking and didn't scared and screamy. He has continued to walking, going farther and making turns!!! He can slide off the couch and walk into the kitchen! It's still odd and surprising to see him walk into a room! He can't get up on his own so he still does a lot of scooting too but I hope that changes soon.

School starts on Monday for Asa and Anna. Asa will be in full day pre-K. This makes me nervous for soooo many reasons! I can't imagine getting up and out before 7:30 everyday. He likes his sleep and usually sleeps until 9. I also can't imagine him making it all day. Well, I don't think he'll have an issue at school but it'll hit him when we get home and we'll have a cranky boy to deal with! Mostly though I can't believe he is in Pre-K!!!! He had a supply list with crayons, glue and scissors! Too big!

I met Asa's teacher on Friday. It's funny because when he started school at 3 we toured her class. There was no way he could handle it so we used the medically fragile class and now 2 years later and he's back to the original plan! I'm excited about his teachers and his friends. He'll be one of 8 kids and that's a little higher than I'd chose but we'll see what happens! I always write up a few notes about Asa for his teachers. You'd think a 40 page IEP would suffice but I like to give them some ideas of the real Asa, not just the one that tests and evals show!

In other exciting family news, I'm going to be doing online school with Cade and Gracie at home! I'm not sure if it's exciting or just insane! Cade was set to start middle school and there was a lot of changes going on there, Gracie has begged for homeschool for years, barry has begged me to do it for years so since Asa was going to be gone all day I thought it'd be a good time to try it. Anna said I just don't want to be lonely! That may be true too! If I'm not busy taking care of Asa I might as well take care of those two! I really hope we all enjoy it and I think it'll simplify our crazy life a little. I know that sounds backwards and usually having your kids gone all day is simpler but not when we all hit the door at the same time with needs high and time and patience are short! We're gonna try it and see anyway!

Oh and I changed some things on the comments section. A while back I started getting crazy, random comments on old blog posts. It was going thru all the posts and leaving a comment. All I knew to do to stop it was to set up all the crazy safety features for comments. I'll try to change some back but I never really got a ton of comments anyway so it may not even matter.

Cade made a palet on the floor and Asa made it his own! Asa tucks his hand under his face like this anytime we tell him to "go night night" or " close your eyes"! Super sweet!

We were at one of the OfficeMax one day and Asa was obsessed with the automatic doors. I finally set him in this chair and laughed every time somebody came in or went out! If Gracie even stood near him he'd shoo her away with his hand and grunt. I could stand beside him but wasn't allowed to speak! After much debating, begging and bribing I finally just scooped him up and ran for the van while he screamed like an abducted kid! I'd love to see the survalience footage of that!

Asa's new school shoes! They are green! They are Converse! They were $8!!!!! Love, love and more love!

Wednesday, July 4, 2012

Walking in water

We are on a little vacation. Asa is loving the pool. We have had the 2ft deep kiddie pool to ourselves. Right off the bat, Asa would walk from the side to me by taking a few steps all on his own. He is on to my game now and it's getting harder to get him to do it without a ton of begging! He has also gotten much more comfortable getting his face in the water. Anna caught a few steps tonight:

Wednesday, June 27, 2012

Put Me in Coach, I'm Ready To Play

Long time, no blog!

A few weeks ago we took Gracie out to the ballpark to play around. She wanted to practice some sliding! Asa had a great time too!

Gracie showing Asa how to run the bases.

Rounding third.

Clearing off home plate! All the sliding had it covered!!

Yay! HOMERUN! After he tagged she let him o and he did 3 full circles around the plate! Victory dance maybe?

Gracie's All-Stars tournament starts this weekend. So do the 100 degree temps! I've loved her time in this coach pitch league! She's had some great coaches but loosing seasons until this year. They won 1st in our league. I'm not sure how the tourney will go but I know I'll miss it next year when she starts kid pitch!

Saturday, June 9, 2012

Beach Time!!!

This time last week we were a bunch of beach bums! We went to Gulf Shores, AL and had a blast! It was Asa's first trip to the beach! I was worried about how he'd handle it. He did great though! He was good for the 9 hour car ride! He loved the sand but didn't want to go in the water. He played happily in his chair that was buried in the sand.

I didn't even take pictures! I left my camera here and barely used my phone on the beach. I bummed the ones Barry took and they are good! I guess I was just living in the moment instead of messing with a camera.

Just a quick TMI update-Asa was constipated on the way down. He would grunt forever and then we'd stop to change him but he'd just have a tiny bit. We'd change and him and drive on only to have him do the same thing all over again! I hate stopping! I like to hit the road and stop once to fill the gas tank, fill our bellies and potty. This stop and go, stop and go drove me crazy! Once we hit the beach, Asa got diarrhea! That was fun! He also got pukey in the evenings. I think he was just plain old tiring out. Asa and I rode home early with Barry who had to get back to work. I hated to cut it short but I really think he was tiring himself out! Plus we still had 3 days of beaching! The big kids loved all 6 of their days though! They went shopping, water parking, dolphin cruising and beaching! Asa wouldn't have enjoyed those activities nearly as much as they did!

I have no idea why I'm wearing a picnic table cloth as a cover up?! This was the day we got there and I ditched the thing after that!

Thank you DeeDee and Pa for such a fun trip!

Tuesday, May 29, 2012


Did the headline get your attention?! I hope so because I have a huge......HUGE.....announcement! I feel like the blog takes a back seat to Facebook. I often post pics or quick updates to FB before I post a blog about it. Today I saved some good news for the blog......and the dozen or so folks I saw this afternoon! I don't have that much restraint people!!!!

Asa had his first ESY (Extended School Year) physical therapy today. Asa qualified for summer school but it would be more trouble than it's worth so I opted to just have his therapies. They are done at the therapy center where he received all his therapy from birth-3. He gets to see some of the folks that worked around him all those years.

So today was his first PT session. Melissa had never seen him before and only saw him becaus ethe regular PT was on vacation this week. I almost refused the therapy of summer school too because Asa is so nervous around strangers and last year he was just getting comfortable when the session was over! Asa has done great going right back with the therapist though!

When I picked him up this afternoon the PT asked if Asa takes independent steps at home. "Uuuuummmm, no. Why did he take steps for you?" was my reply?!!!! Guess what? He DID walk for her!!!!!! She stood Asa up facing her and held him by his shoulders. Her goal was to let go and see how long he could bear weight on his own. When she let go though, Asa walked towards her!!!!! Awesome!!

We got home and I tried reenacting it. I stood him facing me, held him by his shoulders and then let him go and he walked to me! He repeated it several times! I couldn't wait for Barry to get home from work! He did it for Barry too! He is very mad and freaked about being on his own (and he squeals and squawks when you pick him up just so you know he hates it) but he CAN do it! He can walk!!!!! He's wised up tonight though and will sit down when I hold onto his shoulders! He's too smart!

Anna has video but I'll try to make a better one tomorrow! It's amazing!!! God is so good!

Monday, May 28, 2012

Memorial Day Weekend

We started off Memorial Day Weekend like any other Sunday. My mom made lunch for my grandparents, my family and my brother's family. We spent the afternoon on the front porch......with fans blowing full steam and sprinklers in the yard!

I didn't prompt Asa to pose like Anna at all!

Anna and Cade made ice cream cones but I told them not to let Asa see them so they were sneaking and eating them!

My brother and a bunch of kids camped out at a creek that runs on my parent's farm. The rest of us were wimps and we enjoyed the cookout and camp fire but slept in our own beds! Monday morning we headed back for breakfast**. I though Asa would walk around the camp or easier terrain but he headed straight for the cotton field! He did take a big fall but I helped him back up, cleaned the dirt out of his teeth and he walked on!

After a while my daddy carried him. Asa left that hat on for a while too!

Asa liked swinging in the hammock with a buddy. He's very relaxed! He didn't like to share though and would fuss when we tried to make him get out!

**My brother is a pro camper! He made pancakes, spicy sausage, regular sausage, bacon, fried eggs and coffee on a camp fire! It was YUMMY!