Celebrating Inchstones

Thursday, March 29, 2012

Playground

Asa's school has a great playground! There's ton of rubber matting so he can walk all over. There are several slides and 2different swing sets and each has a handicap swing. There's several activities that Asa can play with while standing in his walker. I just love it. I've seen him on it a few times but I've kept my distance. Yesterday after I picked Asa up we headed out to the playground for some pics and playtime. I'll just leave it at that because Asa has been up since 5:30am is not into my blogging right now! Apparently 9am is the new nap time! Oh, one last thing....the antibiotic kicked in at school yesterday right before I got there! It required a MOP along with the regular clean up stuff! Yay for school! :-)

Wednesday, March 28, 2012

Sick day

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

Race

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!

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!