Thursday, March 29, 2012
Wednesday, March 28, 2012
Asa missed school again yesterday. I don't think he's made it a whole week all month! It started out with what I assumed was allergies. Everything growing here popped out in flowers and leaves and we all started sneezing and itchy eyes. Only we all got over it and Asa would get better and then get sick again. He'd run a slight fever every few days. Coughing and congestion. Not really sick but not feeling good. When I picked him up on Monday his teacher said he just wasn't himself. He kept laying his head down and very noodlely.
When I started getting him ready for school on Tuesday I noticed he was warm. I checked and sure enough he had a slight fever. Just enough to keep him home. I called the ped. He called me back nd we went over symptoms. He's thinking sinus infection so I'll pick up an antibiotic today. Anna asked if the truancy board would throw me in jail for Asa missing so much. I'm guess no....I'm hoping no!
So instead of school we took pics today!
Could this be why he stays sick?! Just kidding, he's not a toe sucker but Cade was telling him to bite his toes. He could get both feet to his mouth at the same time! Bendy!!!
He LOVES tape so in a desperate moment I gave him a roll of medical tape! He immediately began wrapping his knee. He actually did this twice.....wonder if his knee hurts? Lol
And in a brief moment of self play he used the treadmill as a desk! The treadmill might as well be useful for something!
And I don't have pics but when Barry came in Asa scooted over to him and using Barry's legs he pulled up by himself! And we have seen him pull up in so many chairs.....his recliner, the kitchen chair, the deck chairs. He getting VERY brave!!
Saturday, March 24, 2012
Yesterday was a sunny, gorgeous day! It was the perfect day for the 3rd Annual Jackson Culley Mito What? 5K! I always get an emotional lump in my throat when we pull into the parking lot and see all the cars and the runners stretching. This year it was no different. Over 400 people had signed up as runners, walkers or as spirit runners. I love the spirit runner idea because lots of folks couldn't actually be at the race but could show their love and support by signing up to run in spirit. As of race time over $15,000 was raised. In the last 3 years this little race has sent over $60,000 to the UMDF and raised a ton of awareness!
This race started off with a balloon release in honor of Emma, who lost her battle with mito last summer.
After the runners took off, we started the Jack's Pack mile walk. The kids were cute busting through the banner!
Asa rode in the stroller but walked as we got close to the finish line. He had no desire to go to the finish line though! He only wanted to get into the grass forget about the road!
This is the 3 mito guys in the Memphis area. Jackson is the namesake for the walk and the Millington native. He's wearing a crown in honor of sweet Emma. Her family and friends all had them on. I love Bryan's shirt....DON'T GIVE UP!
Team Asa grew this year because my awesome cousin, Lacy, had a baby in November. Lacy gets the Team Asa MVP award because she got 2 sweet girls up early on a Saturday morning so they could be at the race before 8am! Thank you again, Lacy (and DaniLyn and Hazely)!!
Later in the afternoon my nephew had a bowling party. Look at Asa sitting with the big boys! Those party blowers let out the loudest, squealiest sound. Asa still can't blow but he'd put it in his mouth and make his own squeal! Asa had root beer and a cupcake too. He wouldn't try the pizza though.
And he even bowled. How cute are those tiny bowling shoes?!
I think Asa liked bowling well enough. He had plenty of help. As soon as he pushed the ball, Gracie, Jack and Simon all clamored to get him the next one ready! Asa didn't care to share and take turns either. He only made it half a game before he was done.
All things considered Asa did great! He was up at 5:30 and on the road for 1.5 hours to the walk. Then he was outside for several hours with a lot of activity. He was in the bouncy house twice. After the race we had breakfast at CFA and he played in their playground. Then we went to the mall for several hours before the bowling party. Then the bowling alley. The arcade was loud, the boys were loud, the bowling was loud and warm. Still Asa did very, very good! Such a blessing!
Thursday, March 22, 2012
I teased today that I've prayed for head control, sitting alone, crawling and walking but I intentionally left out a typical milestone......climbing!!! First of all that's a tough skill. And secondly, this ain't my first rodeo and I know nothing but trouble comes from climbing! :-)
Today though God did what he often does and gave me a glimpse of the power He is more than capable of. He gave me more than I could ever imagine. You'd think I see this often with Asa's development.....and I do... But it's often a development of small skills. Today though, climbing was a gift out of nowhere.
I sat Asa at the table in chair....not his high chair. I left the room for just a few minutes and I heard a fork clinking a plate. But the plate and fork were across the table. I thought he might have scooted over to the next chair and stretched. This would be achievement enough! Instead when I walked back in and he's on top of the table!!! ON THE TABLE! We knew he could pull up on the back of the chair but only with bribes! He got up there so he could get to Gracie's leftover waffles and hot chocolate. He didntbwantnto eat them but he stirred and stirred. He stirred the hot chocolate too until he spilled it! As I was wiping it up I was trying to get him to say "uh oh". Those are sounds he can make he just needs to put them together. And he did mimic some. It wasn't perfect but it was something!
Look at that face! It's like he's saying "what's so crazy about this"!
After such a fun morning, Asa had Aquatherapy. He worked well and then about 40 minutes in he decided to leave the pool. And he did! He climbed out of the pool all by himself! He was playing on the stairs taking a break and the next thing you know he was holding onto the side and the handrail and climbing up to the next stair and kept going until he was sitting on the side! AMAZING!!!! He did this 3 times. He had trouble going up with his right leg leading. He may be difficult to work with next week!
And it's not just these wonders. For a while now I've felt a difference about Asa. He has always had very little motivation. We'd have to work so hard and bribe him just to get any kind of participation out of him. Slowly he's gained a little more independence but it's been hit or miss. In the last few weeks though he has blossomed. I think it has to do with the walker. He's gotten some confidence which has led to more indepence. It's a win-win!
Asa gets up and out of bed every morning. He's had the ability for a long time now but only a hand full of times had he gotten up alone. I'd spend 15 minutes sitting in his floor begging and bribing him to slide off the bed alone.
He will barely play in the floor with toys alone. Recently though, he's been playing in Gracie's room for a long time while she's at school.
It all makes me wonder what else He's got up his sleeve! I think I'd gotten into the habit of settling in my desires. I'd decided that God wanted us to be on a path that didn't include walking or running. I was comforted that His planned did seem to include health. That's asking a lot for a mito kid. No way I'd complain about a silly thing like not walking when we have health! But then, bam God let's me know He's not done yet and He is in control!
Tuesday, March 13, 2012
How about more walking pics! These first 2 are from Friday. Asa headed right out into the woodsy tree line. Barry said "I never thought I'd say this but....Asa get out of the woods"!
These next few are from school today. He was in PE when I went in so I snapped a few pics. They were playing with a big parachute. As they left Asa walked over to the PE teacher for what she assumed was a hug. When she bent over Asa grabbed her and turned her towards the parachute while picking his leg up and trying to climb her! Lol! He didn't want to leave or stop playing! I'll also say that when the PE teacher sees Asa pitching a fit in the hallway and she calls him out, he stops! On a dime stopping! I asked if I could take her home!
As I dropped Asa off today he pushed his walker over to the corner of the room with the kitchen stuff...stove, dishes, fridge. It's not exactly wheelchair friendly but with the walker Asa could get right to the play sink and dishes. Before the footplate would hit and he would not hold on alone standing up. I didn't get any pick of that because was living in the moment! Sorry maybe tomorrow!
Friday, March 9, 2012
Over the years we have tried different combos of gait trainers, walkers, supports, push toys, motivators, etc but we always come up short. Last week I was at Gracie and Cade's school and told another parent about building the PVC walker. Her daughter is in Gracie's class and has used a walker since I met her in kindergarten. She has progressed to using walking sticks now! Last week though, this mom asked if we wanted to try her daughter's walker. I jumped at the chance even though Asa would probably snub his nose at it like he'd done the rest! Well, we brought it home today and put it in front of Asa as soon as we got out of the van. He did balk and squeal at first. He also needed some motivational pushes. It didn't take him long to decide that freedom was kinda fun. He had already walked down the hill and back up before I started videoing. I can't wait for tomorrow morning to see him walking again!
Tuesday, March 6, 2012
They say necessity is the mother of invention. I've wanted a walker for Asa for a while now. It's tricky though because technically he can't use a walker. Well, he can but he won't. He will walk while he holds your fingers all day long but the second you try to release him and let him hold onto something vs something holding him, he panics. Plus he gets so tired. And he already has a gait trainer which is technically a walker but bigger. I needed something light weight but that would go on outdoor surfaces. Asa is highly motivated by the outdoors!
So after some googling I found a video of a mom who built a walker from PVC pipe. I did not use her direct plan but she spurred me into action! Last Friday morning Barry and I got busy. I drew my plan out on the back of a envelope, gathered supplies and rewatched the video. I perfected the measurements using the gait trainer settings Asa is most comfortable with. After I measured and marked the pipe Barry did the cutting. He's just so much faster than me. Besides I was busy "documenting" the whole thing just for y'all! You're welcome!
The framing was very easy once I had the measurements. We couldn't decide on wheels. And truthfully, I was too cheap to buy any wheels! I thought 4 swivel wheels might feel too loosey, goosey for Asa. We had end caps for the pipe so decided to try them on the back.
We also had some small swivel wheels laying around so we tried them out on the front. This plan worked well inside but like I said before, Asa is highly motivated by working outside! I give you 2 guesses as to the end result of Asa pushing this set up outside! Give up? Ok, I'll tell you....the front wheels hung up on the boards and the forward placed handles just flipped Asa straight on his face! Thankfully I was right in front of him videoing so I grabbed him and lowered him down instead of a belly flop. And yes, Barry was saying the whole time that those wheels and the handles so far forward was a bad plan. He also knows I'm too stubborn to be deterred until I learn myself. He's a patient man!
After some final tweaking we came up with a pretty good walker! I will probably swap out the handles for the ones that have the forearm prompts and upward facing handles. They give him more support. The new wheels are awesome though. We found them on an old toy wagon that had been discarded by my much too big kids long ago! We also scooted the handles back to the middle like Barry suggested the first time.
And there is some video of him in action but usually by the time I coax him enough to move, then get the camera on, well, he is done and so over the whole business! Most videos are of him just standing there crying at me. After school today we did do a lot of walking! I had to keep one hand over his on the handle....not holding him just keeping my hand over his. I also had to give a little push to keep him moving and not panicking. He also does better when I count it off! I noticed him listening to the water aerobics instructor counting while he takes Aquatherapy so I count things down when he seems stuck. It usually works pretty well. I'm thinking we need to cover it in the flames patterned Duck Tape for the walker and then call this one done!
In all this was seriously less than $10! My Dad had the pipe but it was less than $4 at Lowes. We bought new fittings. The 2 elbows were .33 each, the 3 prong elbows were a whopping 1.30 each. We bought new glue too.....my boy deserves the finest! The wheels were salvaged but the screws we found were too short so we bummed longer ones from my dad too. I'm pretty sure we could have done it for free just by scavaging in my daddy's stuff! :)
I know Asa can do this! We set the bar high for school and he blew my mind. We've pushed his limits sensory wise and he's passed my expectations. I just know he can do this too. He just needs consistent practice and now he can get it while we decide which walker would be perfect for his needs! And as soon as I get a pic of a happy, smiling Asa using the walker, I'll post that too!
Monday, March 5, 2012
Emily recently blogged about her sweet Jackson at her blog, The Freckled Toe.. I'm going to copy and paste here because sometimes folks don't want to follow a bunch of links but do bookmark Emily's blog to get updates on Jackson in the future. So from Emily's heart:
Dear family and friends,
Thank you all so much to those that have already signed up for the Mito What? 5k. Your support these past 5 years through this mito journey have meant so very much to me. I always treasure your kind words and prayers. This race means so much to me. It gives me hope that a cure or treatment will be found one day when I see so many people coming together on that day.
When Jackson was fist diagnosed with Leigh's John and I were absolutely devestated. We had no idea what was ahead of us.The day in November that Jack was diagnosed with Leigh's, I remember telling John that I haven't even planned his first birthday party and now the doctors are telling me I need to plan his funeral. It was a heartbreaking time. I am grateful to God for every smile Jackson has because there was a time when Jack didn't smile. I am grateful to God for every moment I have with Jack because I never know when Jack's life will end. Even though I am so grateful for Jack's life there is the reality that Jack has never talked, walked or even played with a toy. There are so many milestones of childhood that Jackson will never experience. It just completely breaks my heart. This fall Jack won't be going to Kindergarten. I will never hear Jackson recite his ABC's,123's or his phone number and address. Jackson won't be star of the week and make a poster with photos. I will not pack a snacks and send milk money for him. This fall I will not be buying big crayons, fat pencils or even a nap mat. He won't be picking out a new lunch box and backpack to go to school. I always enjoyed watching Elizabeth and Wesley struggle with this decision. I won't have that pleasure this fall. I won't even get to cry when I leave him on his first day of Kindergaten like I did with Elizabeth and Wesley. Instead, Jack will be at home having his diaper changed, enduring physical therapy sessions so his muscles won't atrophy, be on continuos oxygen to keep his O2 levels up, have formula poured through a tube into his stomach to keep him nourished. Jackson will have to be continuously repositoned to avoid skin breakdown. He will have his temperature checked rectally every hour to make sure he temp is normal. If his temp is not normal and he is overheated he will have to be cooled down with icepacks and cool rags. His brain can not regulate his body temp. He will be lifted in/out of his bed, wheelchair, bath chair, stander and carseat. Included in Jackson's physical therapy sessions (which are twice a day) are stretching sessions for his arms, legs, hips and rib cage. He gets strapped into a stander and stands for 45 min to help his internal organs, leg bones, pelvis and spine. Jackson will endure 25 minute or longer chest percussion treatments 4 times a day, just to keep his lungs pneumonia free. He will be going to the neurologist, cardiologist, pulmonologist, GI, immunologist,allergist, kidney specialist, physical therapist, occupational therapist, speech therapist appointments this fall and as long as he lives. Jackson will be hospitalized and will have IV's when his temp is 101 or greater. He will be pricked for bloodwork this fall and the rest of his life. This fall Jackson will be learning to communicate with a switch. This fall I won't be writing notes to Jackson's teacher. I will be writing letters to insurance companies begging for them to cover the cost of Jackson's needs.
So with all that said I am begging for your participation in the Mito What 5k. You don't have to run (I never run anywhere)! Just register and get a shirt. You can raise awareness just by wearing mito fashion. I am begging from the bottom of my heart.
Saturday, March 3, 2012
Friday, March 2, 2012
Asa and I had a couple of adventures this week. We had to take the dog to the groomers and had about an hour to kill before school started. We have an old train depot downtown that's been turned into a museum. They have tons of memorabilia, a couple of cars you can walk through and an amazing train display.
We were the only ones there and had the run of the place. Asa really liked the model trains. We had to walk around and around watching the trains zoom by. We walked through the outdoor trains but it was windy and drizzly and we didn't get to look very much. When we came back inside Asa sat in the floor playing with a Thomas train while I looked around some. I'd say he liked the trains!
On Thursday Asa had Aquatherapy and I was telling Sarah about the trains. She reminded me that down the road is the Casey Jones train museum. So after therapy we headed to another train store! Again, we were the only ones there! This time Asa got to push the buttons to make the trains go. I call that good OT! They had 2 train tables. Asa could stand up and lean on them to play. They were a little low so his was horrible. There was a large carpeted riser area to watch movies so I drug one table over to the steps so he could sit and play. Again he had a really good time.
Asa has never really cared for toys. This is the first time he's played trains. He really liked when they crashed! I'd say we found a couple of fun hangouts to kill time now!