Monday, September 26, 2011

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!

Tuesday, September 20, 2011

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....

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

Monday, September 19, 2011

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!


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!

Saturday, September 10, 2011

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!

Wednesday, September 7, 2011

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 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!

Sunday, September 4, 2011

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!

Saturday, September 3, 2011

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!