A Brand New Year

There's less than 2 hours left in 2011. My Facebook is covered with folks wishing away 2011 and welcoming 2012. I can't say that I'm sad to see 2011 go. In fact this year has been a pretty peaceful year for me. Asa made some steady developments and everyone's been healthy. I've felt very, very blessed.

Many of our mito friends have not had such a peaceful year. At this moment 2 little boys are very sick in the hospital. One little boy is home on hospice care and almost didn't make it to Christmas. Many friends spent Christmas or the days leading up to Christmas dealing with major medical issues. There was several, too many, that spent their last year on earth in 2011. Yes, 2011 has been a hard year for the mito community!

It has also been a year with bright spots. There's the new drug trial EPI-743. In 2011 the trial was opened up to many more kids. Several kids whose blogs I follow we're accepted and started the drug. They've all had success, some mild but others great! And none have had bad effects!! It is really very promising! I can only hope and pray that this really turns into a decent treatment for mito patients. They all deserve it!

My prayer is that no matter what 2012 holds for my family, that I have my eyes open for God's plan and that I praise Him in all things!

Happy Christmas

We've had a great Christmas and a terrific break! Barry has been off work since last Thursday. We've all enjoyed our "staycation"! We've stayed up late, watched movies, eaten junk food and stayed in pjs all day! Its been great!

Santa brought Asa a handy red recliner. He likes it! I love it!! He hasn't really used it during a sick time but I think he will.

Santa brought Gracie a hunting bow and target. She's been asking for one for 2 years! We don't hunt so she's just using it for target practice. She's pretty good too!

She practiced all day and even packed her own stuff up. My dad put Asa in the wheelbarrow and he happily watched Gracie for a looong time!

Anna got clothes.....lots of clothes! And Cade got an iPod touch. They're just too big for pics and blogging!



I saw this cool idea on Pinterest and knew Asa would love it! Barry's parents got new recliners for Christmas and Asa got a happy box! :-)

He even talked my mom and dad into playing in his house. Moma would try to sit up and talk to me and Asa would push her back down. Daddy helped him make it even more festive and Asa was trying to wrap the lights around himself!

Asa loves lights and I bought a kit that has adapters for 3 outlets and a remote. The remote turns on or off whatever is plugged into outlet. We plugged in a lighted angel in one, a string of lights in one and a hanging string of lights in the 3rd. Asa could turn on and off random lights and he LOVED it! He would crack up when he made it work. It was adorable! Then he lost the remote! We looked in every nook and cranny and dug in the garbage but it is nowhere! Unless he put it in a gift bag under the tree and we didn't notice. I still haven't given up all hope but it is looking like its gone!


Asa also got a Hot Wheels Wall Tracks. Its a Hot Wheel set that attaches to the wall. The first time I hung it too high. it was made for a stander. I had to adapt it since Asa is a sitter. He loves it! I mean he is laughing eveytime and will play for 15 minutes at a time....and alone! He even put a ball in it all by himself. Pretty creative! Enjoy!

Christmas Eve!

I sit here with 1 hour left before we leave Christmas Eve for Christmas Day. Cade and Gracie asked to go to bed at 9pm. At 10:30 I got up to get "Santa" ready and found Gracie sitting on the stairs! After a pep talk (and a tiny dose of benedryl) she headed back to bed. Her alarm clock is set to go off at 5am. Not because I want them up that early but so they don't come downstairs until 5am!

We had a great Christmas Eve together. Gracie and I made cookies this morning. After they cooled all the kids decorated while Chrisymas music played. Anna, Cade and Gracie decorated while Asa ate broken cookies and licked icing off the spreaders when they finished with them. I cooked at the stove and Barry watched football. My heart was full!

We ate supper and opened gifts with Barry's family. I can't even tell you how good Asa did! It gets noisey and busy and over stimulating but Asa was awesome! He had a few,moments of clinginess but he settled again and would play. The kids had a blast, of course!

Tomorrow morning we will have "Santa" and our gifts. Then we'll go to church. We'll have lunch and gifts with my family after that. I'm pretty sure a nap will be in order too!

I'll leave you with the Word we've read numerous times in the last month:

     Matthew 1:18-25 ESV

     Now the birth of Jesus Christ took place in this way. When his mother Mary had been betrothed to Joseph, before they came together she was found to be with child from the Holy Spirit. And her husband Joseph, being a just man and unwilling to put her to shame, resolved to divorce her quietly. But as he considered these things, behold, an angel of the Lord appeared to him in a dream, saying, "Joseph, son of David, do not fear to take Mary as your wife, for that which is conceived in her is from the Holy Spirit. She will bear a son, and you shall call his name Jesus, for he will save his people from their sins." All this took place to fulfill what the Lord had spoken by the prophet:
"Behold, the virgin shall conceive and bear a son,and they shall call his name Immanuel"
(which means, God with us).
When Joseph woke from sleep, he did as the angel of the Lord commanded him: he took his wife, but knew her not until she had given birth to a son. And he called his name Jesus.

I pray that you feel the love of our Savior during this holiday season and that you see His blessings all around you in the New Year!

Waiting on videos

I've been thinking I would take videos for this post but so far that hasn't happened. I've got to make it a priority though because I don't want to miss these milestones. Asa is doing some great gross motor work lately!

A few days after he started aqua therapy my dad gave him an adult walker and Asa took off with no one holding him!

Last week I put a set of Walking Wings on him and he took off with no one touching him! In case the link doesn't work... its a vest (?) with straps that come up at the shoulders so parents hold the straps while the baby walks without holding hands. This is the first time Asa would walk without holding onto someone. We've had the Walking Wings for a long time but Asa just would not let go of the hands! He'd have a complete panic attack. Now he just toddlers along. He really looks like a puppet. His muscles and joints are loose and he is uncoordinated so he is wobblely as everything but he is not afraid to try! That's a huge step! Now just to get video!

Asa is also cruising along furniture without holding onto our hands. Again, this is new and he is being very brave!

He is also holding one of my hands and using the other to cruise along. Last night he held my hand and cruised along the kitchen using the cabinet handles. This required him to take a few shuffles between handles while only holding one hand! So amazing!

I'm so glad we started the aqua therapy when we did because Asa is having a great surge in gross motor skills and having the extra therapy can only help.

He is also getting quite good at getting off the furniture we put him on. He gets out of bed by himself, off the couch, off the recliner, etc. This has mixed blessings but it is all very welcome!

He is not eating solids still but has increased the Elecare. So much so that he is almost out and a new shipment can't be delivered until next week! I called the GI and they should have sent new orders to the HHC so we can bridge the gap. I just didn't realize how quickly an extra cup here and there would add up. Hopefully they'll deliver some extra tomorrow!

He is also sleeping weird! He is staying up late or waking up early, like 4am early. This morning he was so funny even at 4! He woke up and I went in to lay down with him. He just kept "talking" and making funny hand gestures. His talking is grunts, sighs and hums but it is adorable. He was definately telling me some stories! I wanted to eat him up....for 15 minutes and then I just wanted him to go back to sleep!

I'll add videos to my "to do list" tomorrow!

Christmas Grinch

"Christmas Grinch" is what Anna is calling me. She says this because we have no presents under our tree. I take that back, in October Gracie found things around the house that we'd all like and she wrapped them up for us. Those presents are under there.

I've bought gifts. They are stashed in our bedroom. They know the gifts are in there. I just haven't wrapped them. Initially, I was waiting until I had bought a decent amount so i only had to drag out the paper and tape and bows once or twice. But as I noticed how disturbed the kids were by the naked tree my reasoning changed. Some kids have empty trees all season, only getting gifts when a charity delivers donated gifts. Or maybe there are no donations and the tree stays naked even past Christmas morning. My kids know they have presents ready to go under the tree but many kids are left to wonder.

I think we already keep it pretty simple and meaningful. "Santa" only brings 3 gifts because baby Jesus only got 3 gifts. We also only give 3 gifts. They make their wish lists out carefully! Still, I think there is room to simplify, to appreciate our blessings. There are many times that my own wish list gets out of control but it doesn't take long for me to remember that we have all our "needs" met and then some!

I'll get to the wrapping but not until they have some awareness of the blessings we have. And we are already talking about Christmas being different next year. 

Pulling up!

Our Christmas tree has a button we step on o turn the lights on. Asa pushes the button with his hands to light the tree. This morning Asa was sitting in the floor in the living room and I told him to turn the tree on. He scooter over to it but then scooter back to where I was curled up in the recliner. He reached up and tried to pull up. Usually I have to hold a hand and give him support while he untangled his legs and feet. This morning though, he grabbed my leg and the chair and pulled up on his own! He has done it 3 times today!! Oh and after he pulled up he turned his back to me, took my hands and pulled me so I'd get up. We walked to the tree where he tried his best to stomp on the button! He never did hit it though because his balance and coordination are awful! :-)

On the GI front, Asa kinda self weaned off foods. He just drinks the Elecare formula now and we offer him bites when we eat. Many times he refuses our offer. We have noticed that when he does eat he gets a rash around his mouth and often has diarrhea even though he is chronic ally constipated! We know he had blood test that showed food allergies. We pulled those foods but didn't really see a change. Now that he pulled the foods from his diet himself it seems like we are noticing a reaction.

I'm so worn out over eating issues. He prefers the formula, its faster and easier and apparently his body likes it better. I'm finding it hard to sit for 30-45 minutes and coax him into eat 80 calories when he needs 280 per meal. Its like a never ending feeding cycle! He loves to have a cup while we are in the van driving to and from school. They offer him food at school and he does eat better for them but they get to give him treats like pudding since he's already had his complete nutrition. Its so hard to push feeding real food! I just play it by ear! We never don't give him food if he wants it but we don't waste time forcing it either.

I feel like I'm leaving it on a downer part of the update but overall things are going well!

Changes!

I'm not a huge fan of change. Even good changes take some adjustment and I kinda just like a nice smooth hum kind of life! I'm sure this makes me seem pretty boring and even down right depressing to some of you! That's OK by me though!

Asa's life is kinda like the movie "Groundhog's Day". He goes to bed about the same time, wakes up about the same time, eats the same things at the same time....very routine. When there is a change in the routine I can gaurentee something is stirring. Sometimes its a bad thing like a cold or bug but it can also mean a development surge.

Recently Asa tried to change his sleeping routine. He was horrible going to bed. He was up hours later than his norm. He was restless and stirring in his sleep. He got up this morning before 5 am and from the looks of things he'd been up a while just playing in bed. He has also stopped eating. He will only take his Elecare formula by mouth. He has some interest in food but not an appetite or huge desire for food. He had been doing so well too! :(  He is more gaggy and constipated too. Just not a happy tummy.

For a while I watched these signs and waited on the other shoe to drop. He did get a slight stuffy nose but nothing horrible. No other signs of sickness.

But he has had a big surge in some developmental skills! He got out of bed and scooter to his door on Tuesday.....first time in months and only the 3rd time ever. He is much steadier when walking and holding hands. And don't forget about using the adult walker on his own! BTW, he still won't use the kid size walker at school! He stood alone in a chair at the table while he watched it snow. He played outside Saturday as we hung Christmas lights. He rode in his power wheel car, walked in the gait trainer and scooted all over. He even scooted out of the yard and into the taller weeds in the tree line! He was on an adventure! He is doing some really hard work in aqua therapy!

So it seems that while his body is working so hard in these gross motor areas, his body has to give a little in other areas. Its typical mito, actually. Only so much energy to go around! Now I could be wrong and he could wake up in the morning sick but so far so good. This seems to just be one of those happy times of change!

And in another area of change.... after Christmas we will start looking at other school/class placement for Asa. He has really outgrown his class. I love his class, his teachers, his school but just like a moma bird pushes the baby bird out of the nest, its time for his teachers, therapies and us to push him beyond his comfort zone. Please pray that we find the right fit. That we have wisdom to make the right choices. And this is nothing that has to happen now. We just need to reevaluate! I'm praying this is another change that while it may not be fun, will turn out great!!

Best birthday ever!

My birthday was Sunday. I'm not much for big celebrations at all. I don't need tons of gifts either. At this point I consider it a great bday if I don't have to change diapers or cook! And I don't think I did either on Sunday! Moma fixed a yummy bday lunch of my favs. I got tons of Facebook wishes. My partner in crime with the kids at church, Yvette, got me a cookie cake and the kids all sang and gave me a card. Anna sent me a sweet bday text. Cade and Gracie said they would have but I won't give them a phone! And I took a 30 minute nap! That's what I call a rocking bday!

But Asa gave my a wonderful gift too! While we were at Moma's for lunch, Daddy got out a walker my grandmother has used. I looked up and here comes Asa just walking away with it! Daddy was just supporting the walker so it wouldn't roll away since Asa had poor control! When he uses a child's walker he will barely hold the handles without us holding on too. He will do it with us but he is usually very MAD about it. And with the gait trainer he wants the chest prompt to lean against. He usually demands all the support we will give him! Well, just check out the video:




I can't believe how strong he has gotten! One night he was sitting and playing at the bottom of the stairs. Once I glanced his way and didn't see him. Then I saw him on the first step! I started yell and calling everyone around. I could hardly believe that a kid who can't stand or crawl on his own could climb a step. As I shouted and celebrated Gracie came to see what the fuss was about. When she saw me losing my mind she said "oh, yeah, I put him up there earlier"!! Hahaha, they really got me!


And lastly I just have to share a blog post from my friend, Clara-Leigh, with you! I just loved it so much! I hope you do too!

http://mitolifewindow.blogspot.com/2011/11/priceless.html

It's been a while!

I can't believe how long its been since I updated! I've thought about it and wrote updates in my head but never got farther than that! Since it'd take too long to go back that far I'll try to hit the highlights and then update regularly again!

Asa got his foot braces. SMOs. They go just above his ankles. I'll have to get a pic sometime. He is doing fine with them. He doesn't seem mind wearing them.

He also started aqua therapy. The first week I had the time wrong. In fact, I had planned out the whole day for another week! I had planned for several appts that didn't even exist until the next week! For our second appt the therapist cancelled. It was good too because Asa had a stomach bug that was going around his class. They were already scared of his regular puke I'm sure they wouldn't like diarrhea added to the mix! The third time was a charm though and Asa did great! He was so tired afterwards though! So was I! I had to get in and be on puke patrol. I also got to do some of the exercises with them.

And speaking of puke.... no one told Asa's GI system that it was normal so it continues to gag, reflux, puke and constipate him daily. He has all but stopped eating food and only wants his Elecare to drink. I guess this isn't so bad all things considered but it sure isn't "normal". I don't even know what to say about it but it isn't fun at all.

So that's pretty much a quick catch up. Hopefully I won't get so far behind again! :-)

A little update....

First of all, I got an email from the GI NP that the Gastric Empty Scan was normal. I know when you hear "normal" you celebrate but in this case it isn't completely good news. If the test had been bad we would have options to help stop the gagging and puking. But just because it was normal doesn't mean everything is OK. It just means it was OK from 8:30-10:30am last Friday. Makes sense, right? Even as I opened the email Monday, Asa was gagging and couldn't eat until 10:30am. And he has refused some of his favorite foods and only wants his cup of Elecare. But the test was normal!

On the plus side.... Asa had an eval for aqua therapy today. I think he'll really like the aqua part and hopefully tolerate the therapy part! We have to be watchful for several thing though. First, the pool may not be cool enough and just the warmth can tire him out, think of your muscles after a hot tub. Second, it is an open area. There are 3 pools, a regular, a hot tub and the cool. There are many classes and therapies happening at once and it can get loud. Hopefully he won't be bothered too badly. And third, there's a no puking policy! Can you believe?! I'm being sarcastic, of course, but guess what Asa was doing during the eval....gagging and spitting up! Nice huh. So I'll get in the pool with his trusty puke cup and watch for signs of trouble and catch puke if I need to. He starts next Thursday because he has an eye appt this week.

And now some shout worthy videos....

When I picked Asa up from school he was in the gait trainer standing at the door. When we opened the door he took off outside! Now he can do pretty well in big open smooth floored places but I've never seen him go like he did today! I backed him up some so i could video and this is what I got....




Now the school gait trainer is an older model than ours and it is light so i thought he wouldn't be able to do his at home. Boy, was I wrong!! Our backyard has a back slope so that helps but he was really going! And I might add, this so the same hill that Cade and Gracie learned to ride bikes down when they were 4. Asa is 4 and learning to go down it differently but I'll take it! :-)



And if you aren't drop down impressed just go watch the video from early September where I'm trying g to coax him to walk on the smooth ground and was all tears. We've come a LONG way, baby!

Self doubt and reassurances!

It may be surprising to you to hear that I over think things. I play and replay decisions in my head. I guess many of us do that but I find myself doing about nearly everything with Asa....his meds, his docs, his tests, he food, his everything!

After our appointment with GI last week we decided he needed a gastric empty scan. Even with all Asa's GI issues he's never been investigated as to why. We can assume and try meds but he still has issues, major issues! So weset up the appointment at Vandy and it was this morning at 8am. Since we were just at Vandy on Tuesday I really didn't want to go back. We tried and debated and tried some more to get the scan done here in Jackson. Even after talking to the nuclear medicine tech here it just seemed like the best place for the test was Vandy.

And then I questioned and over thought whether we should go up last night and sleep in a hotel or drive up 3:hours and battle rush hour traffic this morning. Finally at 5:00pm I placed a super low bid on Price line to see if we could even get a room we could afford. Surprisingly we won and it was a great hotel! I love it when God gives me reaffirmation that I'm on the right path!


This is in the hotel this morning before the appointment. He was so good!



We got there early and it was pretty empty. About as empty as when Mom a and I left there at 6pm on Tuesday! Asa liked checking out the stairs and the automatic door. He made a little friend too. I wish I'd had the camera when he reached up and poked her in the ear! Lol





For this test they laced some of Asa's Elecare formula with a contrast. Then he laid on his back, strapped to a mat, with a scanner 6" above his body. Oh and he did this for 2 hours!!! I was so afraid that sensory sensitive boy would freak out some part of the process but he didn't! Not one little bit! As one friend said....Asa was unnatuarally good and insensitive!

He had to have a syringe to play with too! This entertained him for 1/2 the test!


A big thumbs up because he was handling it all like a rock star.....as long as he had an ear!


This is all the clearance he had. The straps were from his ankles up to his chest.



Clapping when he was finished! I don't know if you can tell but there was a huge sweat ring on the pillow from his head!




And as happy as I was for him doing so well, I was even happier when we got invited to a Rascal Flatt concert on our way out! Yep, we listened to them perform for 30 mins and then got to met them and chat and take pics!They were very sincere and kind with all the kids!


And if you don't know who Rascal Flatt is here is a song they were singing as we went in! Tons of emotions and lots of teary eyes!




Oh and we won't know anything about the test until next week.

More appointments!

We headed back to Vandy yesterday but not without a little drama!

Gracie woke up with a fever. She's been coughing but yesterday was the only time she had a fever. I got plans squared away with my mother-in-law for her to take care of Gracie. Not long after I hung up with her, Anna texted that her freind, who she was riding home with, was sick and not at school! Call number 2 to my amazing MIL!

And the kids weren't the only ones trying to stomp my plans! On Sunday Barry changed the oil in my van. He noticed a bigger problem and I picked up a replacement part on Monday. Barry and my dad worked all evening putting the new parts on ink to discover it was a totally different part needed! Poor guys were tired! With my van up on blocks we had to take Moma's van. Daddy picked up the water pump and they put it on Tuesday after work while we were at Vandy. The blessing in this is that the van didn't break down on me on the road somewhere! And also having handy fellas who can fix almost anything!

So Moma and I headed back to Vandy for a 3:30 appointment with a dietician and a 4:30 appt with the neuro/geneticist. The dietician was a last minute booking and they were late. This left little time for talking. They suggested adding more calories either with Duocal or another formula. I questioned (a tiny bit) how we could get off formula. I didn't get too far! Since we were running out of time I mostly just listened. It's kinda pointless to even be talking about all this now...before the gastric empty scan.

After that we headed up to neuro/genetics. I've asked all of Asa's docs to help figure out his panic/puke/crash episodes. I keep getting the same answer....anxiety and up the Zoloft. Dr. Tyler explained it best..... in a normal person we get startled and our body has a quick reaction. In Asa, his body and brain don't communicate quickly enough for him to calm his body down after a startle. So he gets startled and then his body goes through all this reactions before he can calm again. Once it starts there is no way to really stop the reaction so we use Zoloft to keep him from having the startle to be in with! Now, his episodes have gotten soooo much better but the are still there and he is set off nearly everyday! It is no fun for us so I'm sure its no fun for him! We see the ped tomorrow for a 4 year old check up and to get him to up the Zoloft. Hopefully that helps!

Friday Barry and I head back to Vandy for the scan. I really hope this gives us some answers! Truthfully I hope the test is really abnormal! Hows that for a prayer request! Let me explain.... Our thinking is that Asa's stomach doesn't release the food into the intestines fast enough. That keeps him from feeling hungry but also keeps him nauseated and gaggy. My fear is that when we wake him at 4am to be at Vandy at 8am, well, his tummy will be empty, will have woken up on the 3 hour drive and will perform perfectly for the scan. I'm told the scan leaves a lot of room for interpretation. So even going to these great lengths we still may have no answers. Sounds like a familiar song!

After the scan I'll try the suggestion of the dietician but I'm pretty done with pushing so much formula that he just pops. I'm not sure where the middle ground is but I'm looking for it!

I'm editing to add that Asa was a doll for this whole trip! He was very "coo-ey" on the ride up, making lots of new and different sounds. He was great in the waiting room an for the docs. He was pretty abusive to Moma though, climbing all over her and being busy! He rolled his wheelchair all down the hallways and the waiting room. It was great! We were about 20 mins from home when he got sick nd puked all over himself but at least we were almost home! Poor kiddo!

Fall Fun

On Saturday, we took the kids from church to Falcon Ridge Farms for some corn mazing, pumpkin picking, petting zoo petting and all around fall fun. Unfortunately only 4 of the kiddos ended up going and 2 were mine!

Look how smiley they are in the van! They soon got tired of me and my camera!

Still smiling as we entered!

This is the whole group....minus me taking the pic and Asa strapped to my back in the carrier, which I LOVE and wish I'd owned longer! The 3 girls charged ahead and beat the rest of us. I'm pretty sure they didn't read the clues but just forged ahead and made their own way out!

Corn box after the corn maze. Asa loved it!!! And it was really cool. The kids skin was cool to the touch when they got out. I'm thinking we need a corn box for Asa in the summer!

Each took a turn being buried in the corn. I'm not sure I see the facination but then again I didn't get in!

Gracie in the bouncy ball corral!

And since it was empty, we adults gave it a go too. My legs still hurt!!! It is harder than it looks! And I must be the most uncoordinated person in the world because I feel of backwards and forwards!!! Thankfully Anna missed those shots and only has me on the ground!

Asa liked this swing and would drag his toes in the dirt as he went by. Reminded me of the tire swing and huge tree we use to play on at my grandmother's house. Her dirt was the best!

Chilling with Cade in the hammock.

And just because we are big kids at heart.... A tea party with Asa's sippy cup and juice box!!

It was a great day!!! The kids had a blast, the weather was great, the company was a blessing and Asa had the best day in weeks! He didn't puke or get freaked out one single time! Even though we really pushed the limits!

And I'd like some tips from all you folks who are posting pics of family pumpkin outings where the little darlings are in matching clothes and are all posing and smiling. We did good to even be dressed and I'm not 100% sure Gracie brushed her hair at all that day....she is boycotting it seems! Not to mention that each time I said "smile" they ran for the hills, or corn box! I'm not complaining but I'm wondering if my parenting handbook was missing that chapter. How bout someone just cut and paste my little darlings head onto the bodies of your perfectly posed and dressed kiddos. Feel free to not use Gracie's real hair....I'm thinking she'll be in dreads by Christmas!

Half way there

We are half way thru the yearly specialist follow up. Last Monday was developmental medicine. This past Monday was cardiology. Yesterday was GI. To be fair, we see GI every 4 months so this was more of a regular appointment than a yearly check up.

To recap, the dev ped said Asa has probable autism secondary to the mito. I need to call and set up appts to figure out the next step. I got his clinical notes on the way to our GI appt.....not the best way to start the day! The cardio appt was great and we don't have to go back for 2 years! So on to GI yesterday.....

Asa has lost weight again and he weights 28lbs. This puts him right at the bottom line of the growth chart. He is 35". He'd make a perfect 2 year old! Asa's appetite has been on a decline and I started replacing all fluids with formula. This still wasn't enough. And it would be easy to just fill him to the gills with formula but even without a ton he is gaggy and drooly and pukey. Life is no fun...for him or us....in that state. We've always just upped the meds and never really checked out why this is happening. Soooo, next Friday we will be at Vandy at 8am for a Gastric Empty Scan. Asa will drink some formula laced with contrast. He'll then have xrays taken at certain intervals to see how the contrast leaves his tummy. We suspect it'll be slow. If it's too slow it'd explain why he is still so gaggy. Then we can try different meds or different feeds. If it's normal he'll probably have a scope later.

On Tuesday we head back to Vandy for the neuro/genetic appt. Then Friday we'll go back for the scan. After this we'll be done with the appts....except news ones based on the autism stuff. Anyone else tired?

Perfect

Perfect....not a word we hear to describe Asa often....not from a doctor, that is! Of course we all know that Asa is perfect, created just as God designed!

Today was appointment #2 in our October Specialist Marathon. We travelled 3 hours each way to see Asa's cardiologist. Asa had an echo and EKG. He was soooo good for both tests. And the report is that Asa's heart is "perfect"! And we don't have to see him for 2 years! Yay!!

This is very, very good news! We know that Asa's muscles, GI system, brain and eyes are affected by mito. Thankfully all of these are mildly affected but it does add up. It's great to have a "perfect" report on his heart!

So we have the developmental ped and cardio under our belts. Wednesday is GI. Vandy called this morning and moved our November genetics appointment up to next Tuesday. I need to get him in with the optometrist and figure out all the new autism stuff so I can make appts for that too! I told you October is busy!!

At least when I'll be able to quickly recall the dates of our last appts when I have to give a history to a new doc! We are seeing everyone in October 2011!

What a week!

After celebrating Asa's birthday on Sunday we hit the ground running on Monday!

Asa had an appointment with a developmental ped. This doc was new to us because Asa was seen in the neonatal follow up clinic and graduated out of it last year when he turned 3. This doctor is from Vandy but comes to Jackson monthly which is such a blessing! If anyone local gets a chance to support Ayer's Clinic I encourage you to do it. Its amazing to not have to drive all the way to Vandy for appointments.

Anyway, I had lots of questions about some of Asa's behaviors for this Dr. "Autistic like features" is a symptom of some mitochondrial disorders. Asa definately has several autistic like features. He fixates on certain things (water) and avoids others (soft Teddy bears). He is affectionate to us and will finally tolerate kids but doesn't seek them out or even play with them. All of his sensory issues could be considered autistic like....or they can stand on their own. He doesn't handle transitions well, even happy transitions like coming home from school. Soooo, my questions for Dr. Couch were mostly about seeking autistic therapies vs Asa just being spoiled rotten. Dr. Couch and I talked for a long time with him watching Asa play and interact. He did a little exam and got Asa to walk and play with him. Asa is a rock star when you do what HE wants but if you challenge him he looses it! So what does Dr. Couch do but go and force Asa to do some hard gross motor work, like standing while just leaning against the drs leg or walking while facing the doctor vs the Dr behind him. So Asa lost it and the Dr got to see a full on episode, fit or plain ole rottenness! Then he gave Asa back to me while we finished! Thanks doc!

His final thoughts were that regardless of whether we call it autism or an autistic like feature of the mitochondrial disorder, it is a problem and some therapies may help. He gave me a few names in Nashville to call and I've got the number of a place in Memphis. I feel a little overwhelmed about starting all of this. I feel autism is such a buzz word right now and I don't want to waste time or money on stuff that won't work. I've got very little patience too! I've spent so long wondering if I'm overreacting to this bad behavior or was I just afraid someone would say the word "autism" that I really didn't know how to feel after the appt. At Walmart after the appt the cashier was talking to Asa and asked if he was autistic. Now I realize the cashier isn't a doc but I felt relief and a sting when she said that. Turns out she has autism in her family.

I've basically not done anything but read and make phone calls (and placed on hold forever) since the appt. It'll probably be a few weeks before I tackle this issue and spots. The good thing is Asa is manageable so for the most part we are OK for a while.

Fast forward to today... Asa woke up a little earlier than usual and he was mad! He usually spends 10 minutes cooing and kicking the wall before I go get him up. Today he was screaming from the get go. As I opened the door I could tell something was wrong. I could SMELL something was wrong! Asa had gotten sick at some point during the night and pooped (on his own, yay) and was a mess! When I picked him up I could tell he was warm too. He did NOT appreciate a bath first thing in the morning and was very vocal about it! That's pretty much how he spent the next several hours! He is not a kid who gets sick and just lays around. He's the kid who gets sick and screams and clings and MUST have you.... NOW. Its exhausting I tell ya! I'm not sure what the issue is but I'd guess viral. Nobody here's been sick and he isn't giving me huge signs of pain, just fever and cranky.

Oh and now would be a good time to mention tat I've had a pain in my neck for several weeks. Yesterday I broke down and called a chiropractor. I've never been to one but I knew I couldn't take meds that make you loopy so I went to a chiropractor. He stayed and overall I'm not too bad, yay. I do have a problem relaxing and probably having dense muscles locked up some stuff. At least that what I understood. I got news for him though, next week is worse! A trip to Vandy for cardio and GI here, I don't see me loosening up much! Anyway, he adjusted me, did some department muscle stuff and used an electro shock something. I did feel better but by the end of the night I ached all over. I guess those muscles were tight! I had to cancel today's appt since Asa couldn't go to school. And Monday we'll be at Vandy so i have to cancel that appt too. At least I can straighten my neck and even turn my head and I even got some sleep last night!! That's progress!

After all that complaining I bet you just can't wait for next weeks update on the cardio and GI appointments! :-) And I'm not going back to spell check and edit so if you have any questions about this jibberish lay them on me!

Happy 4th Birthday Asa!

Asa turned 4 years old on Friday, October 7th. Our schedules were jam packed Friday and Saturday so we had a birthday lunch and party on Sunday. I don't think Asa minded! We had a Birthday Burger Bash. This is the first year Asa has had any desire to really eat. I love it when Asa wants, really wants, to eat! We battled for so many years to get him to eat just a few foods....just applesauce or yogurt. Forget textures or anything that required chewing. If it hadn't been for Asa's awesome feeding/speech therapist I'm sure I'd given up and he'd be 100% tube fed today!

We did a Burger Bash because on our second visit to Houston to see Dr Koenig, I asked about the feeding and the tube. I asked if we should just give up on eating and embrace the feeding tube. It take much less precious energy if Asa didn't have to worry about eating but just got his nutrition from his tube. Dr K told us not to give up because "when Asa is 16 and wants to grab a burger with friends, he'll thank you"! Wow, that gave us such hope and we trudged along! And now at 4 years old Asa can eat a burger.....he choose not to but he can!

Here's the party videos first. I had been playing "happy birthday" with Asa all week so he wouldn't freak out when we all started singing to him. I was also hopeful that he would blow out the candle since he can blow a pinwheel......with his nose! Turns out the candle REALLY freaked him out! That's why he pushes the cake away at the end of the song. He expected a lighted candle.





He did finally get into the cake! He ate and played and ate and smeared and ate some more! And yes, all that cake did make him sick! I'm not sure that he isn't still feeling the affects of the cake!



This cake was so cute in the order book. It was made with fondant and was bright and colorful. Oh well, I still like the idea.

Of course he didn't want anything to do with his burger party! He did have a great time with the corn on the cob! I should post all those pics. He just kept touching and humming and picking it up above his head. Next year we'll have a corn party!

Making a dent in the cake!

And then the coming down from the high! He was resting on the couch with me......

But feel asleep with Daddy! Man, birthday parties are hard work!

A few "firsts"

Asa's had a couple of "firsts" this week.

On Tuesday, as soon as we got to school, he had his very first school pic made. I was running late and the photographer was finishing up so I just ran out there with Asa. I sat him down on the spinning stool and the guy snapped a few. I'm sure they aren't great but its exciting that he got to do it! Asa had been self feeding applesauce that morning and gotten some in his hair. I tried using a baby wipe to clean him up but you can imagine how well that looked! I can't wait to get the proofs back!

Right after the pics, we went a few rooms down and they were doing vision and hearing screenings. I really just wanted to see how Asa would react and he did great! The best part is that his vision and hearing are both perfectly normal! Yay!!!


And then today! Today Asa was measured for his first pair of leg braces. He'll be getting SMOs, which come up just over the ankle. Asa's floppy muscles and loose joints don't support his weight well and his ankles roll inward. These braces will support his arch and ankles so this turning doesn't become a huge problem later on. After the fitting we had a pattern wheel of patterns to choose from. Asa really wasn't into sharing the pattern wheel so I just picked a sports theme with baseballs and basketballs. It'll take a month or more to get the braces approved and made.

Here are a few pic of the brace fitting. I wish I'd had my camera with me for the school pic and screening. I feel like I missed a milestone! Hahaha!!





Don't let this fool you, this was the only time he wasn't cooperative! Asa likes shoes so he thought he was picking out a new pair!

Asa had to have his own tape measure too!

Still "helping"!

And a closer inspection. Check out that face! He was unhooking the Velcro strap and is still a little unsure of the sound and feel of Velcro!

October!!!

Wow, when did October sneak in here? Or maybe it didn't sneak up on me after all but instead I was just turning a blind eye!

Asa will turn 4 on Friday! 4 years old! Its bittersweet really. At years old he is dependant on us as much as a 6 month old would be. I think each year will widen the developmental gap for him. Even as he gains skills the rest of the world surges ahead by keeps and bounds, not at the snail's pace that would allow him to catch up. On the other hand, he IS 4!!! We made it 4 years! Yay!!!!

I'm planning a Birthday Burger Bash! Several years ago, when we saw Dr. Koenig in Houston, I asked if we should just give up on oral feeds and get happy with tube feeds. We'd been trying for sooooo long to get him to eat with very little results. Dr. K told us to keep trying to feed him and that when he was "16 and wants to grab a burger with friends, he'll thank you"! And while he isn't 16 yet, he will eat some bites of a Burger! On Saturday he ate a whole hot dog! I peeled the outside off and pinched it into tiny bites and it took him an hour but he finished it. I didn't push him to finish but he'd fuss if I took his plate away. He didn't eat much else til Sunday morning late so it wasn't a perfect plan!

October is also full of appts for Asa. Next Monday we see a new developmental ped. The next 17th is a trip to Vandy for cardio. The 19th is GI. Try as I may, I couldn't get them all for 1 day. And our geneticist/neuro couldn't see him until November 22. I should also try to get him in to the eye doctor while we're at it!

Before I know it October will be gone and Christmas will be upon us! YIKES!

I keep hearing this song. It's based on the biblical story of Naomi and Ruth. From the first time I heard it I thought of Asa though. Maybe you'll agree, maybe not, but I thought I'd share.










Asa has had a few fun filled days. This is his kind of weather! On Friday we had an early morning appointment. Since Asa tires so easily I try not to plan much before school. Sometimes I have to take whatever appt is available. After the appt and a disappointing trip to the pharmacy, Asa had gotten tired and was in the middle of a huge gagfest and meltdown. Instead of taking him across I decided wed skip school, rest and reset and then have a picnic at the accessible park. The weather was wonderful. Asa dozed off on the short drive over. After he woke up and we had a picnic we set out to play! The playground has 4 ramps. Asa spent the next hour pointing at ramps that he wanted me to push him up and down! And he didn't want to stop! I got my exercise! I also made him do some pushing so he could build those arms!

After the park we went to the grocery store for a few things. Asa pointed to the bananas and after he signed "banana" I gave him one to hold. I was surprised when I turned around and he had peeled it open!! I didn't know he could do that! I felt a little odd explaining to the cashier that I'd let him eat one and why it was exciting. She was great though and cheered along with us!

On Saturday we had a family reunuion. Asa kept trying to roll put the doors to play outside. He couldn't get over the threshold but after the great banana event I was afraid to take my eyes off of him! He did spend alot of time pointing so I could push him around outside!

On Sunday Asa went to big church, not the nursery or Children's Church. He did reaaly good. He was very quiet but early on he handed me his talking cards (PECS) and showed me "home"! Ha!!! Then he gave me the "drink" card 3 times so I took him out to get his cup. Once we got to the other room though, he just wanted to play! Faker!!

After church and lunch, he hung out with my dad. I'm not sure what all they did but they were outside for hours. Asa must have been worn out because he slept from 8:30 last night til 11:30 today. Soooo, he missed school again today! Probably a good idea too. He spent 2 hours trying to poop! No kidding 2 hours! He was drenched in sweat and tonight he has petechia on his face from pushing. It was awful but I'll spare you the details. I'm sad to say he only produced a tiny amount so he'll have to redo the process again. I wish we could come up with a good plan so this doesn't have to happen every few days.

Sorry if that TMI but its just how we roll here!

Wish GRANTed Project

As part of Mito Awareness Week the Facebook page Wish GRANTed is featuring different faces of mito. Asa is one of new faces tonight. Check out the blog on the Wish GRANTed page by following the link here.... http://www.facebook.com/wishgrantedproject?sk=app_223152464403325


And if you linked Asa's blog from Delaney's page, well, welcome! :-)

Mitochondrial Disease Awareness Week

Today is the first day of Mitochondrial Disease Awareness Week. Even as I typed that I don't know what else to add. What else to type. Most readers have been around long enough to see my yearly public service announcements on FaceBook. Or you've just followed here long enough to know how mito has affected Asa and our family. I guess I feel like everyone is tired of hearing me go on and on. Most of you guys either fight along with us or you are my close friends and are very aware of mito by now!

And then.... I watched as my FB was turned green by friends changing their profile pics in honor of mito week.

And then..... some wonderful, beautiful friends that I've never met in real life honored Asa and others by mentioning mito even though they fight battles of their own.

And then.... I think if all the kids that mito has taken from their families so far this year. And the many more that I didn't know or have contact with. All those families who didn't get their happy endings. So sad!

So I can't let the day pass without telling you all what you all already know. Mito stinks! It robs families. It takes life. There is no cure or treatment.

But I also have to say that I'm so thankful that Asa is healthy. He fights, he struggles, we struggle but we aren't close to loosing him. He is here. He is healthy. And I am grateful and thankful!

IEP

I had Asa's  second ever IEP meeting on Thursday. This time last year I was super prepared and super nervous! This year felt more relaxed! I woke up Thursday morning and still felt short of breath and panicy though.

I see Asa's teacher every day and his therapist weekly. We chat and toss around ideas all the time. I guess the IEP was good to get all of ideas in writing. Last week we were tossing around ideas for PT goals and I was afraid that we had the bar set to low last year. We've had crawling as a PT goal since he was little bitty. And guess what, at 4 years old Asa still isn't close to a crawl! I was very impressed that this years goals include "standing a line for 10 seconds"! WooHoo! I look forward to that day!

His long time OT was very impressed with how far he got in his eval. She said they were scrambling to gather the materials for the next steps of the tests! How fun is that!

And as for speech, Asa has a new SLP. In case you didn't know Asa has no words. Zero! Not even a "mamamama" or "dadadada". And he started speech therapy at 6 months. He's had speech therapy once a week until he was 3. Then last year he had speech twice a week for 30 min each time. Now I'm no expert but if all this work has gotten us nothing then I'm not sure we'll ever get anything. That's why we've started looking at Alternative Adaptive Communication. So far he seems to be doing really well with the PECS cards. One day this week we were in the van on the way home from school when Asa started hugging a card from his set. When I asked him what he had he showed me the "hug" card! How smart! I go in to the school next week for MY PECS training. Seems that there is a set way to use these cards. Asa already gets the idea though so I'm excited!

Oh and Asa won't be moving to another class for a while! Yay! Maybe I should be sad about that but I'm not. Overall, Asa's development was that of a 2 year old at best. And with that in mind I have no problem keeping Asa in his safe, happy class. I feel like he has enough struggles so a happy (happier!) 2 hours a day at school is good enough! And his teacher is by no means just a babysitter! They work on numbers and colors and his PECS and PE and art and music! He has it made, I tell you! We are so blessed!

Asa's school got a new toy. The 3 special ed classes share it but so far its in Asa's class everyday. It's called a Tap-It. It's like a huge touch screen tablet. He really likes it but every time I try to video him he starts screaming! Naturally!





Because he pays with the Tap-It and the switch button computers, he also loves the Toshiba Thrive tablet we got recently. One of the first things I did with the tablet is try out the camera. The dog was lying in a pallet that Cade and Gracie made to turn flips in and I called him to me. It was a simple, quick video. Then I found an app called "Toddler Video Lock". The app plays pre selected videos in a loop that locks out all the function keys of the tablet so kids can't exit the app. Since the doggie video was the only video on the computer, it was the only video that Asa could watch. Surprisingly, the dog video cracks Asa up! The funny thing is that since Asa works with cause and effect so much, he thinks his tapping the screen is making the dog run! And if you notice in the video, he also knows to tap the lower right corner so a menu opens up. He also knows this about the Tap-It at school!





And speaking of school, Asa's IEP is coming up on Thursday. His teacher and discussed how neither of us thinks he ready for the next class. He just doesn't handle the transitions of the day well at all. As we were talking Asa was eating his lunch, a slice of deli turkey torn in pieces and 1/2 piece of cheese in small pieces. I put it in a small clear container. Asa picks out the turkey and eats the cheese first. This in itself is a great OT and sorting skill! During our chat and his lunch, he put a block in the little, near empty container. Mrs. Joyce commented that Asa had left 2 pieces of cheese in the container. She said this to me as Asa was playing with something else. He overheard her and immediately picked up the container and started digging the cheese pieces off the side! It was so funny and just goes to show how great his receptive language is. He really understands everything we say! It must be so frustrating to him that he can't tell us what he wants and needs or that we can't understand him! Maybe one day!

What a difference a few days makes!

Our temperatures took a huge drop when TS Lee blew upwards from the coast. Our high today was in the mid 70s! I broke out my jeans and hoodie! Yay!!! It was sunny but a little windy. All in all, it was Asa's kind of weather!!!! And a million times better than the 90s and triple digit heat indexes we've had for weeks now!

He didn't do his usual screaming and squealing on the car ride home from school because I kept talking about how we'd play outside when we got home. And boy, did we ever!

First, Asa rode around the front yard in his Power Wheels car. We ate in a rural area and have a 4-6 ft woodsy stretch between the road and the yard. I turned Asa's steering wheel so that he'd go in a circle. He's never turned the wheel before so i thought i was brilliant! Anna and I were playing soccer and Asa kept going into the rough! What a turkey! When we ride the 4wheeler he always points into the woods so we have to go onto the trails. He loves the sound of the leaves and twigs cracking and snapping. So silly!

Then, to get him away from the woods, I took him to the back yard. He played some tetherball and jumped on the trampoline. He really likes the trampoline.

Finally, when Cade and Gracie got off the bus I tried to get him to come back inside. That was a no-go! So instead I brought the gait trainer outside and let him do some dirt driving. The area where we took the pool down is nice and flat so I set him walking there. At first he did great! I was trying to get someone to video but the big guys were all devoted to their homework.....really?!!! My video is sloppy and I'm sooo loud but it's documented none the less! Here's the link but seriously, I'm loud so turn the volume OFF! Lol!



It seems that Asa's colon also liked the cool weather....or maybe it was all the Miralax and Colate....because we had to come inside to change 3 diapers! In just a few hours! We were inside when Barry came home and the talk of supper started! Cade requested a weenie roast on a campfire....as long as there was no electronics!!!

Asa seemed to love the campfire too. He just sat so quietly and watched. He ate almost 1/2 of a turkey dog too! After supper the kids played on the swingset for the first time all year! Asa loved playing in the tower and even went down the slide with help a few times. It was only another poopy diaper that finally forced us inside for good!

Unfortunately, the night ended with gagging, some puke and a drain tube! Same as last night! Other than that today was a great day and I hope Asa made some memories!

Big boy class

Today was promotion day at church. For the last 3+ years Asa has been in the nursery at our church. We are a small church with a lot of family there so Asa's been cared for by the best and closest of folks. Today Asa moved into the 3-5 year old class. I was pretty worried about how it'd go. Asa hasn't even made it church in the last long while, unless you count last week when we got there and Asa got sick so Barry just took him back home.

 He did great though! He sat at the table in his wheelchair and colored and played with his 2 friends. I didn't hear any screaming and I'm right across the hall so I'd know! Our class doors have little glass windows in them and I know there were several people peaked in on him! I taught children's church afterwards and he was good in there too. I hope each week will be this smooth! I put a link to the Wish GRANTed page on the right hand of the screen. It'd be great if you'd visit the page and "like" it. And share it on your own FB page. Help Delany get 10,000 likes and raise awareness!

September already?

<p>I can't believe its September already! Don't get me wrong, I'm ready for fall! The cooler temps, changing and falling leaves, pumpkin muffins and especially the return of my goodies and long sleeves! I've been touching them every time I open my closet for several weeks! I just love autumn!!</p>
<p>What I don't love is the way this year is flying by! Sure there are days that I'm just ready to close the books on the day but for the most part wish I could just hit the slow button! I kinda feel like things are easy right now. Anna isn't on the go to much. It won't be long until she has a drivers licence and a part time job and I'll have to vie for her attention. Cade and Gracie get along pretty well at the moment. They have such creative ideas and plans! Cade has really been very easy to get along with and surprisingly obedient. For a while he'd argue with us about anything we asked him to do. Lately though he has not only not argued but done what we've asked as soon as we ask! You can see how I'd love to hold him in this stage! Gracie is still in between the stage of innocence and growing up. She can still make the sassiest comments but in such an innocent way that you can't punish her because surely she didn't realize who grown that sounded! Right?! She was pretending to text her "boyfriend" the other day. She texted that he should like Gracie better because Jesuce (Jessica) couldn't beat her at tetherball! Where does she get this stuff?</p>
<p>And Asa. Lets just face it, the older and bigger he gets, the harder he is to deal with. He is make slow progress but the older he gets the more obvious his delays become. I've felt those old twinges of jealousy as I've seen typical kids his age. Don't get me wrong, we are by blessed that he has the skills he does and I don't know why these feelings creep up when I least expect them. The older and bigger he gets also,makes it physically harder to handle him. Picking him up out of bed, out of the tub, out of the highchair, lifting him into the van then out of the van, then there's the wheelchair. And you don't even want to know about the diaper changes! I'm considering getting a potty chair just to see what happens. I keep looking at them but I honestly have such low expectations that I feel buying one would be like flushing money down the toilet....pun intended. Maybe for his bday next month.

I hate to complain about Asa  because he is really doing pretty good right now. Most days he is eating 3 tiny meals. Real meals like a pop tart for breakfast then a slice of deli meat and a couple of potato straws for lunch, followed by several bites of whatever we have for supper. He usually has 3 8oz cups of soy or rice milk and a juice box each day. The last few days I've substituted Elecare for the milk. I don't mix it to 30cals/oz though because that seems so thick and heavy that he only wants to drink not eat. I got an email from his GI on Thursday though. Well, technically, she sent it a month ago but I just found it. The dietician looked at the feeding journal I sent in and Asa  needs more calories a day, like 400 more calories a day. That may not seem like a lot for me but when he is still getting sick on what he has now its hard to seeing adding more food or formula. I'm not sure if they figured in that he is really, really seditary. Does 100cals/kg or 1350cals for a 30lber sound familiar to anyone?  And then we are back to the more he gains, the more I strain trying to care for him. He seems thinner but not FTT again.

Anyway, enough of my rambling! College football is on and I'm bored but I won't make y'all read anymore of my crazy thoughts though. Maybe I'll browse YouTube since I have REAL internet now!

Finding Asa's voice

I didn't realize the link didn't take! So sorry, try this....

http://www.facebook.com/wishgrantedproject?ref=ts

I'm trying to get used to this tablet and blogging on it.




Asa went to school today. I tried to tell his teachers that he was pretty crabby. Sure enough when I picked him up he was in a mood! I think he did OK most if the day. Its just that when the teachers and therapist have a plan and goals he usually doesn't want to go along with it! Imagine that! The teacher said that while Asa wouldn't work for the PT, he did the same work with another person in the room. Leave it to him to not follow the game plan!

He has been scheduled to work with a person (I forgot the title) who will recommend a type of communicator for him. That work started today. My understanding is that they will try several types of things and see what works best for Asa.They'll then try to get insurance to pay for my boy a voice. That's what I walked in on today. A therapist was wanting him to work the cause and effect game on the computer with a switch button. And while this is normally an activity he likes to do its a whole different story when someone wants him to do it!

Right now we use PECS (Picture Exchange Communication System) cards. I have Asa's cards on pieces of contertop samples, tied together with a zip tie that I can then clip onto his wheelchair or carry with us. Asa really likes the tiles and cards and mostly we use then by us showing him the thing he has chosen. For instance, if he is coloring I'll get the card with the crayons on it and talk about how he is choosing crayons. But just this week Asa sorted out 3 cards and handed them out to me. I mumbled something in response but he stuck them out to me again. The kicker came when he stuck them out to me again and signed "please". It was only after he signed that I saw he was handing me the "cookie" card!!!! Of course I jumped up and found him a cookie, well a pop tart but that's the closest thing to a cookie that he can eat. Later I did find a WhoNu? Oreo cookie and broke it up for him. I think he'd just soon have the softer pop tart over the messy Oreo. On a side note, have out tried these WhoNu? Cookies. They are supposed to be healthy but taste like a real cookie. I think they are pretty good. I won't buy the Oreo again but the chocolate chip are good. Anyway, here's a pic of the PECS cards Asa handed me!




I've also been using my iPhone as a communicator for him too. My favorite app is the Answers:YesNo by Simplified Touch. Its a basic 2 button screen so he can make choices. At first the app only did Yes or No. On an update though I started being able to program the 2 choices. He really stared to understand this app when I programed "Pop tart" and "Pedisure" as his choices. When he picked "Pedisure" he got the cup if Pedisure instead of the Pop tart that he really wanted! He still isn't great at the choices because he really likes to just tap, tap, tap!







A more involved app is TapToTalk. You can add your own albums and pictures but so far we just use the basic free ones. I use this often when Asa is having a meltdown. I can go to the emotion page, choose the frustrated face, and then "I want to relax" button. Then we lay down on the couch while he pokes my ears until he calm and ready to face the world again. We also use the drink choices. I tap the milk or juice choices and Asa will hit the soda button a million times in a row!

I also use TapToTalk on the tablet and that was a biggie in deciding to get the tablet. Sadly the android market doesn't have any of the other apps or anything similar.


I've also toyed around with MyTalk and like certain things about it. Its very easy to take a pic of the object and use the app right away. Again I haven't really tried to change the settings though so I can't verify the ease of use overall.

All of these apps are cheap, cause that's how I roll! In fact I think the yes/no was. 99 and the other two are the free versions. These programs can be very expensive but if the freebies work then I'll use it!!!


I'm not sure what the school will decide. And don't really care as long as he is able it tell us his needs and wants. At some point it'd be great to carry on full conversations but right now we just need the needs and wants! I wish he'd pick up signing more easily. There is no equipment or programs to load or buy or carry around. Today he actually signed "I love you" to the dog! Complete with the point to the dog!! Even when he signs it to us, we don't get the point, just the "love"! My deepest hope is that I'll hear his sweet little voice saying Moma or Daddy!!! Until then we'll keep on trying to find the best way for him to share his ideas and thoughts with us!

As predicted.....

Asa came down with Gracie's fun fever and sore throat! He was a real bear on Sunday and I took his temp under his arm. It was normal and being difficult isn't unheard of for him so we brushed it off as a bad day. on Monday he felt warm again but the underarm temp was normal agsin.  By lunch I took a rectal and sure enough it was 100°. I'm not sure why I didn't realize before but he never has an accurate temp unless its rectal. Once the motrin was onboard and we were cuddling on the couch he was resting. I also put together that he had a sore throat. He kept asking for food and would put it in his mouth but wouldn't swallow, just pool it. He was also drooling, even though he had a pac. I know at nearly 4 he needs to lose the paci but without it he tends to sit with his mouth wide open and is drooly. Plus it keeps him quiet and me sane!

Today was better but he woke up early with his once a week poop that of course was a stinky mess! That started his day off with a bath and while he loves a bath first thing in the morning is not his scheduled bath time! We know how much he hates going off schedule or routine. Let me just tell you that he was no barrel of monkeys this morning. Nothing I did was right and I was trying it all! Thankfully he didn't have a fever all day so that means school tomorrow!

It also seems like this little bug has increased his motility. Odd, right?!?! He has been asking for food all day. He didn't eat much but he drank a million gallons of soy milk, water, ice, juice and tea. He's had the wet diapers to prove it too. Dirty ones too!!! We shouldn't have to use the Miralax tomorrow! The drinking and desire to eat is pretty great....the pooping, not so much!

I want to ask a favor of y'all. This has been a tough year for mito kids. Several families had to say goodbye to their little ones way too early. But then there are the rays of hope that shine through. One of our mito heros started the drug trial, EPI-743 in California today. I'm praying this drug will help his little body, that it gets a big green light from the FDA and that it helps all our mito kiddos. There's another ray of hope too. A 14 year old girl, Delaney, started a FB page to raise awareness for mito. Her brither,  Grant, has mito and she is trying to get as many as people as possible to visit and "like" her page. It'd be great if you could spare a minute to check it out and click "like"! Thanks so much!

Delayed but quick update

Wow, long time no post!! We are now the proud owners of high speed internet and Barry got Nexflix tonight. Why didn't anyone tell us that we'd been living under a rock?!?! We thought we'd be so excited to be in the real world but we've been too busy to toy around much. While browsing the available movies in Netflix I found several ancheit movies I want the kids to see. I'm sure they'll think my movies from the '80s are as cool as I remember them to be!

Gracie was sick a few days last week. On Wednesday morning she called from school saying she had strep. She hasn't had strep but she said that's what it felt like. And I agreed that the quick onset of a sore throat, headache, stomach ache and fever did seem very strep-like. The doc ran a swab but she took a shot without waiting on the results because it seemed so certain. Fast forward to Friday and she's still running a fever.... I called the clinic and turns out her strep test was negative! I also found out on Thursday night that Gracie had been using Asa's toothbrush.....because her's was outside! Don't ask me how her toothbrush got outside! I was certain As a would get this fun viral bug now! So far though he is fine, well, Asa fine!

Asa missed 2 days of school last week. I kept him out one day because Gracie just felt so bad that it wasn't worth getting her up and out for his 2 hour school day. And then once I found out about the toothbrush sharing I was convinced that he had the same virus and would contaminate his friends at school! And after 4 days home with me I'm pretty sure he is looking forward to school tomorrow! I know i 'm looking forward to it!

A couple of videos

Here's a couple of videos. The first was at the appt yesterday. Asa scooted right for the sink! We mixed things up by playing with a paper towel too. He'd wet it and then wring it out and tear it up. I figure there's OT skills in there somewhere!






This one was today. I had an eye appt (I'm allergic to the contacts or something!). Asa was rolling all over the waiting room...and messing with buttons and lights and equipment! I'm just so glad he felt like exploring! Afterwards we had to get drops and special solution (I'm so going back to glasses if this isn't better when I go back next week!). We explored a little and Asa found a holla hoop propped against a rack. He grabbed it and started hulaing! So funny!




I wish I had video of another funny activity from today. I laid down in the floor and Asa scooted over to me. He laid his head over on my and hugged me. Then he started trying to get on his knees by rolling onto me. Once he was laying completely over me he started raising up on his arms. So he's in a mostly crawling position with me underneath him!!! He was mainly laying on my face!! And the drool, man the drool! He'd raise up and start wiping it off my cheek. I tell it was the sweetest thing!! Plus it was really good PT work since he can't get into a crawling position! At nearly 4 years old he can't hold a 4point crawl pose much less get it or crawl! I was gonna suggest we scrap that PT goal on his IEP but maybe he will be able to do it one day! Anyway, I sure loved the cuddles or wrestling or whatever he called himself doing! Loved it!!!

Sick...or NOT?!

I took Asa to his pediatrician yesterday. For the last few weeks he has been really tired and just a little off in general. He hasn't had a fever or a cough or a runny nose, just not himself. I waited it out for a while then school started and his teachers started commenting how tired he was with the new schedule and I finally made an appt thinking that he'd snap out of it as soon as I had an appt! Well, he didn't snap out of it so I took him in.

It's kinda difficult to explain and I'm sure Dr. Woods thought I was crazy. First of all, Asa only goes to school 2 hours a day. He hasn't started therapy yet so he isn't having to do a ton of work although his teachers do put him in the gait trainer or the mobile stander. And get this, he tolerates the rolling stander better than the gait trainer. He'd rather be standing with his feet and legs all strapped in and pushing with his arms to roll around than in a gait trainer with a seat and walking around. Anyway, it's basically just playtime and he is DONE after a hour and a half or more!

Secondly, this started before school. 2 weeks before school. He started sleeping til 10:30 or 11 every morning after going to bed at 8:30 or 9. And then he didn't want to play during the day, he was happy to be held or to just sit on the couch with a book or in the highchair just hanging out. Since school started he's gotten up at 10:30. Eat breakfast, get ready for school, I drive him to school at 12, pick him up at 2, pick Anna up and we're home by 3. He them lays on the couch resting till Cade and Gracie come in at 3:45. Still he really just hangs out on the couch. Yesterday he laid there playing with his feet till 5 or later.

I guess it doesn't sound dramatic, and it's not, but it's definitely not his normal. His ptosis is also very noticeable in the afternoon and he has dark circles under his eyes. He is clingy and really just wants to lay around holding your ear! His motility has slowed too. He is having several gagging and nauseated spells a day. He seems be have gotten better at fighting it off though and we haven't drained as much as we were before but he is pretty miserable when it hits.

So I thought this was just a new normal for him but then I realized we'd messed with his diet this summer, he could be anemic. Or his ammonia could be high. Or he could be sick somehow. And then my mind wonders to the BIG stuff it could be! Thankfully it doesn't look like it's anything big! But it's also not anything small and fixable! Dr. Woods ran all kinds of labs and everything looks fine. Not perfect but only off a tiny bit. So I'm back to just be crazy and worried! I guess it's just a looong down time for him.

Asa did really well at the appt. He only cried when appropriate, he gagged at the throat swap but didn't puke, he gave the Dr. a high five and we were there for 2 1/2 hours! He did ALOT of sink playing and I have a cute video but I haven't loaded it yet....sorry! After the blood draw (which only took 1 stick, thank heavens!!!) I was gonna distract him with cartoons on YouTube but he doesn't really care for cartoons so I thought of a mito friend's blog. She recently posted a video that I hadn't watched so we turned to her kiddos. Asa stopped crying immediately and after only a few seconds of watching Emma laughing, dancing and talking, Asa started signing "love" over and over! How precious is that!!! We had to watch it 3 times. He also liked watching his own videos! Lol!!!