Sunday, January 30, 2011

A great weekend!

We have had a great weekend! The weather has been wonderful with sunny skies and highs in the upper 50s and lower 60s. There is a feeling of spring in the air.....too bad they are predicting more snow this week! Asa even went to school in short sleeves on Friday. He rode his little Power Wheel car outside too! He doesn't turn the steering wheel at all so I just turned it so he could ride in circles. He was more than happy!

On Saturday we took a road trip to Nashville for a mito meeting with the UMDF chapter there. It's been a while since we've been to a meeting and it was great to see everyone again. They are such special people! I can't believe it's been 2 years since we joined this group! That means it's been 2 years since we got a diagnosis. Our first meeting was the same month as our muscle biopsy results! How's that for God's timing!!

Asa did great on the ride and didn't have a blow out diaper until we got home! How nice is that! He had a total meltdown but at least that was at home too!

Today was a wonderful day with our church family and then lunch at my mom and dad's! Sundays have to be my most favorite days of the week!!!

I love Asa's bedtime now that he is in his big bed! With the crib we'd rock and sing and rub his face and rock and sing somemore. Then he'd wake up when we laid him down so we'd start over! Now we just crawl into his bed and he pokes in my ear until he drifts off to sleep then I get up! I confess that I often doze off too and I like it! Laying with him also gives me time to think and pray. The way his eyelids get heavy as he is drifting off and the sound of his breathing getting slower and is so relaxing! We have so much to be thankful for!

Tonight Asa showed off a new skill at bedtime. He started out playing in my ear like always and then he reached for my hands. I often hold his hands when my ears get sore from a days worth of poking. But he didn't want to hold hands! He picked up my hand, found my pointer finger and stuck it in my ear!!! I have no idea why he loves ears so much but I guess he was trying to show me! I still don't get it by the way! I tried taking my hand down and he'd grab it back. I tried just putting my finger near my ear but nope, it had to be in my ear! He tried different fingers but always went back to my pointer finger! I thought I might have to lay there with my finger in my own ear until he drifted off to sleep but he finally decided he wanted my ear back to himself!!!

Here's a pic from last week. We'd been shopping at Target before school and he took a nap in the buggy. He started off in the seat part of the buggy but threw a fit so I moved him to the back. He rode happily and then got sleepy. I propped him up on his backpack and he got comfy! He always pulls his shirt up over his belly so he can play with his button or belly button while he goes to sleep. Of course, he really prefers ears but buttons and belly buttons will do in a pinch!

And my Daddy "MacGyver"ed a wheelchair for Asa! Who doesn't have extra bycicle wheels and car seats laying around?! We are trying different seats and a basic stadium seats seems to work best. As soon as we put him in it he pushes off but then he toys with us and won't go anymore! I don't know why he won't perform with all of us standing around staring at him with our cameras out?! And this is actually Daddy's second project. He also put a car seat on a furniture dolly (mover) and tied a rope to it! Now there is entertainment for the big kids who pull Asa around and for Asa who gets to ride! I have one smart Daddy!!!

Tuesday, January 25, 2011

Exciting plans!

First a picture I posted on Facebook last night:

Asa saying his blessing at supper! We always say "Asa, say your blessing" just like we do with the other kids but he usually just ignores us, like he has no idea what we are saying. Last night though he covered his eyes while he was still drinking his water! So cute!!! This is actually a retake so I guess he said 2 blessings!

Now onto our exciting plans that you can be part of! It is time to get in shape for the 2nd Anual Jackson Cully Mito What? 5K in Millington TN! The race is March 26th. Follow the link in the upper right corner of the race blog to register online!! Or if you aren't local but want to do something to help Asa and all those who battle mito you can sponsor me as a Mito Hero! I only need 15 sponsors at $10 each. You can email me if you want to do this and need our address or paypal.

This race was amazing last year and it was only the first year so I can't imagine how great it'll be this year! There were hundreds of runner and walkers and more money was raised than was expected! I think the total donated to the UMDF was around $20,000!!! How much better can it be this year!

Like last year, I have big plans to run the 5K! Yes, last year I quit and did the family fun walk. That was great too but I really want to challenge myself this time. I have no will power though! NONE! And I get bored easily. Not a great combo! Still, I'm gonna follow the plan and see what happens! I may be the last one in but hopefully I will make it back!!!

I'd really, really, really love to have a ton of people there for Team Asa. Whether you are a walker or runner! I know my cousins are signed up and will be joining us. And in my true procasitinator fashion I haven't even registered us!!! It needs to be done by March 1st though!!! So don't do like me and wait until the last second!!!

And like Asa, we are always thanking God for you and your support in our prayers!!!

Tuesday, January 18, 2011

Report card day!!

Asa got his very first report card today!! Now if you are picturing a single page, folded with 4 or 5 grades on it you are wrong!! He doesn't get A,B,C,D or Fs. He doesn't even get the "satisfactory" or "needs improvement" marks. Nope, Asa's report card is....different!

It is 11 pages long! It has been compiled by no less than 5 people! Most of it is broken down into 2 sections, annual goal status and objective status. So he is graded on the smaller objectives that make up the bigger goal. It is very detailed! His grades are numbers not grades. A 4 means the goal is met. A 5 means the goal hasn't been met but will likely be met. A 6 means it isn't likely the goal will be met by the end of the IEP. That's the big goals. He can also get a 1a,1b,1c,1d,1e,2a,2b,2c,2d,2e,3 or 4. Fun, right!!! :-)

And keeping in mind that Asa has only been working on this goals since October, you can imagine his scores were low. I could go through each one for you but it's 11 pages long! If you want details just ask. It was a little hard to see the numbers broken down so much and lots of low scores. Kinda like how I felt when Cade had a C in spelling!! I know, you read my blog and see my typos, how much should I expect! Lol!! But back to Asa, it wasn't fun seeing those low grades. 

But then I read closer! I saw the notes the teachers wrote about Asa. Not the scores, not the numbers but what they thought of my baby! Things like, "We love having Asa at school!", "Asa's working hard!", "He's precious!", "We have fallen in love with Asa.", "I expect great things from him." and more about how he socializes with others in the school and how he has many friends outside the classroom! Seriously can you tell the tears well up in my eyes!!! 

In only 2 months he may not be checking off his goals at super speed but he is being cared for and taught by people who truly care about him!!! I really do love his school, his teachers and therapist! And so does he mostly!

Asa usually gets excited when we head to school. We talk about where we are going and we do the sign for school. When we pull onto the street and see the buses he gets squeally, kicks happily and starts signing! So cute! He had a different reaction today! He missed school all last week! As we turned onto the street he saw the buses and turned his head to look out his window! No kicking, no squealing! I was talking and signing school and he just stared out his window. I finally snapped my fingers so he'd turn his head towards the school. He looked and turned right back to his window!! The little booger was avoiding me and the school!!! It really cracked me up! He may not have words but he communicates just fine!!! Even after all of that he still dropped off fine and had a great day with no meltdowns!!! I love that little boy!

Oh and a funny lesson! One goal involved moving forward to get a toy while on his belly. Well Asa doesn't do this at all! He barely gets up on his arms, not hands, and doesn't pull his knees under him. Then tonight I watched as he kicked, rocked and pulled his knees in a little so that he could inch forward to get a toy!!! How exciting! An almost, sort of, booty shake army crawl for a toy!!! And he is only 3!!! 

Monday, January 17, 2011

An update...

I realized today that's it's been a while since I blogged or updated. I guess I put snippets on Facebook so I forget to do a longer post on here. Maybe I should just copy and paste all my fb post daily! 

In the past week we've all passed around a cold. Asa didn't go to school at all last week. We were out for snow a few days and then he was sick. He ran a slight fever, had a runny nose and a cough. The most troubling symptoms was extreme crabbiness and lack of sleep! He'd wake up from a stopped up nose or coughing and not go back to sleep. Then he'd be soooo grouchy! The best thing about his illness was that he was an eating machine!!!! 

His GI system wasn't so happy but we used more Zantac and he was doing good. He'd wake up and ask for food. I hesitantly give him his cup of Pedisure. He'd suck it down and sign more. He had so many new foods and he was sick! I couldn't believe it! Don't get me wrong, he was throwing up most evenings but he didn't seem too bothered! Usually when he is sick we have to stop the pedisure and just give him pedilyte. Then we spend a few days working him back up to pedisure and then food. I couldn't be happier that he kept up the eating pace and even stepped it up!! 

In other news....Anna turned 14 on Saturday! In true teenage fashion she couldn't make up her mind what she wanted to do for her birthday. Friday afternoon she decided she wanted all the family to join us at a Mexican restaurant...that night! She better be glad we all love her! Barry's patents and my parents plus some cousins and her BFF met us and we had a great time! Then she decided she wanted to go the movies with her BFF and the boyfriend on Saturday!!! The BOYFRIEND!!! My first reaction was NO! Then I compromised! I picked the movie and we all sat together. And if she decided to make out with the boy, I'd make out with her daddy!! Lol!!! I picked an action movie with no love scenes! We really did have a good time! I'm glad Anna made some fun memories and had a good birthday! She didn't really ask for any gifts just our time and attention! A day for Anna! Thanks to my mom for keeping the little people so Anna could feel special!  Anna is such a great girl, uh young lady?!! She is my helper and can almost read my mind! She doesn't ask for much or whine too often! That may change tomorrow so I'm being thankful for them today! I figure if she's made it to 14 and is still so sweet I better hold on cause she's due for a fit at any moment!! 

So we get back to our normal tomorrow. Back to school for everyone and hopefully leaving these sickies behind for a little while! 

Tuesday, January 11, 2011

Why does God allow suffering

I follow a couple of blog regularly. OK, who am I kidding, I follow a dozens of blogs regularly! I've actually been very blessed to have some powerfully strong moma's that blog about their journeys and faith on my blog list! These two things don't always go hand in hand but I've been delighted to find many who use a strong faith to get through the struggles of life. I find encouragement in their knowledge of mito and special needs but even more so in their faith and love of our God.

A recent blog find is "Adapting Creatively". It has some great ideas for special needs families. I was pleasantly surprised to find this post on faith and suffering yesterday. I could have written it myself, it is that close to my heart. I'm just glad Rose-Marie beat me to it or you'd have to endure my typos, poor grammar, run on sentences and apparent LOVE for exclamation points!!!! SEE! Please, please take a moment to click the link and read even if you aren't the parent of a special needs child. There are all types of suffering and at some point you'll likely struggle to understand. It'd be great to have this message engraved in your mind for those times!

And the song that is quoted is one of my favorites! I adore Natalie Grant and "Held" brings me to tears each and everytime I hear it! It ranks right at the top of my list of songs for encouragement. Right up there with JJ Hellers "Your Hands". Sometimes we get the wrong idea about God, faith and struggles. We will struggle and suffer but the difference in a Christian's and a non believers struggles is that a Christian will not struggle alone! That is my encouragement!

And on an Asa note: His pink eye looks much better! The bad news is the pink eye seems to be replaced by a cold or virus! He has had a fever all day. Now both eyes are sad little sick eyes. He is coughing and sneezing and his reflux, poor appetite and DGE are all acting up. Other than a crabby few hours he has been pretty happy today. He played upstairs with Cade and Gracie for a while this morning. He got fussy and pointed upstairs so up we went. I sat him down and started playing with him and Gracie started telling me that I didn't have to stay with him. After about her 3rd suggestion I did come back down and he had a blast with them! Such a big boy!!!

Monday, January 10, 2011

Fun Snow Day!

We live in the south. West Tennessee to be more specific. We see a few snows a year here and it is always an exciting event! The weather people give us a few days notice so we can all rush out and get our milk and bread from the grocery store. Heaven forbid any of us try to drive in the cold white stuff! And with this snow the state and city workers began salting the roads 4 or 5 days BEFORE the predicted event! Just to be prepared, you know! And of course when the kids hear the first utterings of the "S" word they start getting ready to be home on a snow day! In previous years we've called off churches, schools, social events, most everything at just the mere mention of snow. The last few years it seems the school superintendant likes to play with the minds of the kids and parents and we have to wait until 3am to get the automated call saying school is cancelled because of the 3" of snow on the ground. Granted if she cancelled school and the snow missed us we'd all complain too! That is a thankless job that I wouldn't want!

So this snow was the first real snow of the winter! We got at least 4" here. We went to bed with flakes beginning to fall and woke up this morning to our winter wonderland! Even Barry was home today! Cade and Barry headed out before 8 am to ride 4 wheelers. Gracie woke up shorty after that and stumbled into her coveralls, boots and helmet to join in. I don't even think she was fully awake until the cold air hit her face when she went out the front door!

By 11am we all bundled up and headed out! Asa too!!! We went to a hill behind the house to try out the new sleds my mom got the kids for Christmas. We took Barry's truck so Asa could stay warm when he wasn't playing. It worked out perfectly! The sledding didn't go so well for the big kids but Asa had a great time! I had gotten an inflatable boat on clearance years ago. Don't ask me why I bought a boat but it came in handy for this snow! It was the perfect size for Asa. It pulled easily up and down the hill. It may have given out being towed behind the 4 wheeler! Not with Asa in it but Anna and Gracie!!

Asa was so bundled up that he could hardly move! He tried to clap or sign "more" and couldn't get his hands to touch! So funny!! It was hard to tell if he was having a blast and kicking in joy or kicking in frustration. Turns out he was having a blast!! I tried to leave him in the truck with Anna while I pulled Cade and he pitched a fit! He wanted to ride!!! We played for nearly an hour when Asa and I called it a day and headed home. Even at home, Asa sat on the front porch just grunting and pointing! He was a happy guy. I'm so happy we could have a good, fun, family time and make some sweet memories! The kids are out of school tomorrow but Barry is back to work. I'm thinking we'll take it easy tomorrow.....unless I'm out voted! Here are a few pics:

The warming and snack station! I took hot chocolate and treats so we could refuel for more playing!

Barry and Asa! Boy, I was glad to have Barry home today!

Could a girl even be anymore covered in snow? You can't tell so well but she had frozen snow caked in her hair! And she was soaked! But look at that grin, she was HAPPY!

Cade's Christmas present came in handy! I liked it so much I'm asking Santa for one next year!

Sunday, January 9, 2011

Some deep thoughts.....

But first an Asa update! I know several see the FB posts but I haven't gone into details about the ick on the blog mostly because it is just minor stuff.

We've had several totally typical kid illness here with Asa. That in itself is a milestone! First, the day before Christmas Eve, Asa woke up with an awful croupy cough. I am normally the wait and see kind of Moma but with the holidays and then a Sunday coming up, we headed to the walk in clinic. Asa was fine, just an upper respiratory infection. He got 2 doses of steroids and an antibiotic. This worked wonders and he was fine over the holidays. In true antibiotic fashion though, he got a yeast infection in the boy bits area. This landed us in the peds office on Thursday. Got the cream and started treating. On Friday Asa's right eye started looking red and slightly runny. His teachers thought he was fine and he has eye issues occasionally so we carried on with our normal routine. By Saturday afternoon I was getting worried about the weekend and the massive 3-4" snow fall we are predicted so I called his ped back. Thankfully he just called in pink eye drops and we started them on Saturday. By today Asa's eye is most definitely pink eye and I'm glad we have the drops! So he had a cold, the meds gave him a rash, the ped gave him cream, the clinic gave him pink eye and we are treating! How's that for a normal series of childhood illness! Oh, and he is our first kid to have pink eye!

Now on to MY very important message cause it's my blog and I can do what I want to! Hee Hee!

I didn't do a big New Years post and I'm not one for resolutions. Mostly because I lack will power and any promises I make myself end up broken by the next day! I can't give up bread. I won't give up sugar. I'd like to lose 10-15 pounds but only if i don't have to work for it. I'd like to exercise but it is kinda boring. So you see I make a horrible resolution person! At least I know myself well!!!!

I did however think that I'd make some changes this new year. Nothing major or life changing I just think I'll be a little more ME! See, I'm really a shy, quiet person. I hear the grunts and laughs from some of you out there! But the internet is different! You can say or do or anyone on the internet and only you know the true you. For those of you who have only known me as an adult, you know I'm a talker and social. But just ask my Moma or anyone who knows me from way back when and they'll tell you I was a wall flower, an introvert, quiet and NOT outspoken at all! I think that is the deep down REAL me. I think it is also who I'm out growing! I still freak out over public speaking. It wouldn't matter if I was standing up giving you a weather report, my voice gets high pitched, I talk too fast and I'll likely cry! But I'm getting better!!

But first I'm also a Christian! A born again believer! A princess cause my Abba is the King of kings! So this new version of ME is going to try to shake off this shy version of me and let God shine through! I try to live so that God shines in my life. I'd like to think I'm a good person and people notice my faith but it isn't something that comes out of my mouth with ease. Seems I can easily fall back into my shy personality when it comes to this. It is more natural for me to be a quiet observer or give my opinion only when asked. And this is just how Satan wants it and wants me!

Even as I had the thought that I'd like to be a more vocal servant of God, I got a message from a teacher at my kids school. She wanted me to come speak to a women's group at her church! I said "YES" before I gave much thought to the fact that I'd be in front of a group of people. Speaking. About Asa and God. Something so personal. AAACCCCKK! I quickly sent a second message asking how many people would be there! LOL!

I spoke to her friends on Wednesday. It went well. I wasn't nearly as nervous as I thought. And I think I was slightly interesting because they asked questions and made comments. I had practiced several times and had 25 minutes of material but somehow we talked for well over an hour!! I guess my talker came out!!!

I also started a Bible study with some great ladies on the book of Jonah. It is called "Navigating a Life Interrupted"! I think if anything describes my life it would be "interrupted"! And while interruptions are usually not a good thing, when they are God's interruption, they are awesome!!!! So I know that God has put Asa in my life for a purpose. I know He is giving me precious insights and lessons everyday. I know I love seeing God work and I know He wants me to tell others about these lessons! Not that I'm perfect or having anything that will change your life (or WILL it?!!!) but I know that miracles are happening in my life and to sit and be quiet isn't something I want to do!

So along with Asa updates or our fun family adventures, I'll be sharing some testimony of God's work in my life! Often times these all go hand in hand! God's pretty great like that!!!!

So what has God done in your life lately that you'd like to share?

Tuesday, January 4, 2011

Asa's room

I was so happy to move Asa to Cade's old room. But then after a few weeks he stopped sleeping. It was hard to rock him to sleep and then he'd wake up as we put him in the crib. He'd wake up during the night and we'd do the whole process over again. There were many nights that I slept in the recliner with him on top of me and my neck all crooked. And I even tried to sleep on the floor with him but he thought that was play time. I was tired!!!!

I wanted to move Asa to a big bed so that I could at least crawl in with him. If I couldn't sleep in my own bed at least I'd be in a bed! We can't let him cry it out because he ends up puking from crying too much. The only thing worse than not sleeping is cleaning up puke and bedding and not sleeping! With Asa's tone and lack of gross motor skills he can't get out of bed and stand, sit or crawl. He can roll and buck and that really takes him places! Like off the couch, out of the recliner, down the stairs! And there are a ton of special needs beds but they are pricey out of pocket and insurance takes forever. Plus it seems kidda like a lot of effort when we really on need something that will contain him. The SN beds are awesome with adjustable height so parents don't have to bend over and pick up a heavy child. It'd also be handy to have a bed with the head elevated so Asa's reflux is better controlled.

After thinking all our options over and shopping in stores and online I came up with my own solution. It probably wouldn't be a good idea for a kid who is much stronger than Asa but a kid much stronger can probably handle a regular type bed.

So here are some pics!

Asa is smiling behind the paci! He kept scooting in front of me while I was taking pics so I put him on the bed and he was happy. He has also started this silly thing where he moves the paci to one side of his mouth. It reminds me of Popeye and his pipe!

The foot of the bed. His toy shelves fit perfectly along the end. This only works because he doesn't end up at the end of the bed often and he isn't strong enough to turn it over. This would be a bad set up for most any other kid and I'm looking for a shelf to fit here. I'm waiting on all of this organization stuff to go on clearance at Target soon!!

The head of the bed. These are the letters Gracie painted and I hung over the baby bed. I may lower them or find some wall clings that I could hang lower. More likely I just won't worry about it!

The view from the door. I can sneak in and check on him and he can't see me! I can also sneak out when he is going to sleep!! The chest of drawers already served as his changing table and storage and it fit perfectly along the side.

I didn't use a pillow or top sheet or blanket because Asa doesn't use these. He is still mostly a tummy sleeper so pillows scare me. Personally, I can't sleep without covers at night but Asa has a fit when he is covered up. Not to mention it is hard to regulate his temp all bundled up. So far this plan is working perfectly! And the best part is it was all stuff we already had and I only paid $4 for the striped sheet! I'd like to get a new CD player for him. He still uses the lullaby CD we got from the hospital but we've played out 2 CD players! They stop repeating so he wakes up and his music is off. That's when he calls me!

Saturday, January 1, 2011

Starting the New Year off right

Last night our family rang in the New Year like usual. We watched movies and broke out the sparkling grape juice in our plastic champagne flutes! I bought a big party pack at Target for less the $4 three years ago! It had 20 flutes in it and we still have enough left for next year! Now that is savvy shopping!!! This year we celebrated in the eastern time zone with New York and went to bed! I guess technically we slept in the new year!

Asa started 2011 off with a bang! He got up so happy and playful this morning. He ate scrambled eggs with us for breakfast. We were celebrating how far Asa has come with his eating in 2010. This time last year Asa was totally tube fed. At the beginning of the year we tried to do feeding with a big syringe but soon tired of feeding time being such a chore and completely hands on. Soon we did 4 bolus feeds with a pump. This gave us time to play with food while his belly got full from the pump. If he completely revolted we could let him play while on the pump and we could still get things accomplished. In the spring Asa learned to drink from a straw and a whole new world opened. He started drinking most of his pedisure from a straw cup but would still resist and be tube fed. He could drink juice from a juice box though and this gave him added hydration. Shortly after he turned 3 in October he started accepting more textures and even better, he started asking for food and tastes! Even as a newborn he never seemed get understand hunger pains and he never asked for food! It was like he was finally enjoying eating! In the last month or so Asa learned to sign "more please" to ask for food! I love it every single time he does this!!!!

Tonight my mom cooked the customary New Years food. Cabbage (for money) and black eyed peas (for health) for the next year. She also made a stew to put up for the winter but we had to eat some NOW! Yummy! I made Asa a plate with cabbage, peas, potatoes, a baby carrot and stew. It was more food than he's ever eaten but I wanted him to try it all. He surprised us by eating it all!!! And still asked for "more please"! I gave him a slice of cheese and he finished all of that!!! And cheese is a new food! The eggs this morning gave him an awful tummy ache and I had to suck the food off his tummy. So far he has handled the cheese fine! 

I'm just so thankful with how well he is eating! Is it possible that 2011 might be the year we get rid of the tube? I have to say that I LOVE his tube. Odd as it sounds the tube is such a blessing! We can drain his tummy when it doesn't want to work. We can feed him when he is sick and won't eat. We can give meds when he needs them and refuses. Yes, I'm not sure I want to get rid of the tube! I don't want to have to use it but i like having it around! Kinda like the GUN (as opposed to the "gin" that I orignally posted!) I keep under my pillow.....kidding!

Will 2011 be the year Asa walks? I'm really not sure! I hate to be negative but this is his weakest area and he is soooo far behind. He just isn't adventureous enough to strike out on his own even if his body is ready. He just lacks a confidence in his skills.

Will 2011 be the year we hear him say "Moma" and "Daddy"? Wouldn't that be wonderful?!!!! 2010 brought us several helpful signs and for that I'm so grateful!!! This morning we were talking about "friend" and he created his own version! I wouldn't say he used it on his on but with a lot of encouragement he used his version. He has signed "Daddy" a few times too! Mostly we see "more" or "more please" for hungry or thirsty but he will use it for more kisses or tickles. He signs "all done" and "school". He even signed "thank you" to my mom tonight. So 2010 didn't bring us any words but it brought us communication!!! Whether 2011 brings us more signs or more skill with the iPod touch communication apps or, dare we hope, WORDS, we will be grateful and thankful! 

I can't say 2010 was bad to us personally.  It brought our family ups and downs. Disappointments and celebrations. It sadly brought the mito family the loss of many little mito fighters. Little fighters whose too short life's have taught us much and given us many smiles. I can only pray that 2011 spare us from more of these losses and instead brings a treatment or cure for all those fighting mito so bravely. Could 2011 really be that year? That is my prayer tonight! 2011 would be a great year for a cure, don't you think?!