Celebrating Inchstones: A little of our weekend....

Tuesday, February 22, 2011

A little of our weekend....

We had quite a busy weekend! On Saturday we went to our church parking lot to ride bikes, scooters and so Asa could walk in the gait trainer. I wasn't sure how Asa would do in the wide open spaces but he did great!!!! He has only ever taken a dozen or so steps at one time. I have video of 2:22 minutes of him walking and he probably did 3 minutes in all. Too bad that right after I turned the camera off and helped get him back on the pavement, Cade ran by him and scared him. Cade wasn't trying to scare him but Asa completely lost it. He got scared, fell down, cried, clung to me, thrashed around, gagged, screamed and then dozed off. When he woke up he was perky and happy again. I really wish we knew what these episodes are and if we could help him with them. Imagine how far he would have gone if he wasn't so jumpy and scared. Anyway, here is the walking video! I'm so amazed that he is walking and moving but also that he is so straight and tall and you can't tell much but he is grunting and humming and vocalizing! He was soooo happy!

Saturday night we went to our local volunteer fire dept for the annual chili supper and auction. I remember going to this when I was a kid. Yummy food, lots of neighbors and friends and lots of good junk (or treasures if you look!). At the end of the night they opened the bay doors and lots of the kids were hanging out on the fire truck. Makes me wonder how many of these kids will be volunteering on this truck when they are grown up! It was also funny to see all the adults pull out cell phones to get this shot!

On Sunday afternoon we headed behind my parents place to a dry creek the kids like to play in. We had tried the gait trainer earlier and Asa fell and then we started the whole pukey stuff over again! Good times! Anyway by the afternoon he was playful again. We took the push chair my dad made and Asa was trying to push off road. He had fun playing with some sticks with Cade. And it was very windy so Gracie and my dad were flying kites. Asa had a kite that was already broken and he had the best time flinging it around and watching it flap. And yes, the wind is a pretty big stressor for him but lately he has handled it great. We started playing a game where I tell him the wind is going to tickle his hair and he better hold it down. Sometimes he rubs his hair and sometimes he laughs and is fine without rubbing his head.

And since Monday was a holiday the kids were all at home for the day. We had a great, relaxed morning. I did my treadmill training for the Mito-What 5K. Then I threw the baseball and softball with Cade and Gracie. I got a double work out from them! As soon as I had the baseball back to Cade, Gracie had the softball coming my way. I may or may not have thrown a few over their heads just so they'd have to run after them and I could have a breather!

After ball, we had lunch and I laid down with Asa for his nap. Just as he was dozing off I hear the front and back doors opening and closing, opening and closing, banging around. Of course Asa heard this too and would open his eyes. By the time Asa finally dozed off I was ready to have some kid's behinds! Why would they be so loud when they knew Asa was going to sleep?! It didn't take long to find out why they were so loud!

Cade flipped his 4 wheeler over and they were trying to get it out before I got up! Cade was fine and we got the 4 wheeler out and it was fine too! I'm not sure what happened but we had the whole safety talk again and the 4 wheeler is parked for a week.

In all that excitement I completely forgot about Cade's buddy's birthday party! My heart had just started beating at a normal pace when I got a message about the party. I hated I forgot because I happen to like the grown ups involved and Cade was mad because it was a cool laser tag party! Oh, well, I'm just glad my heart was still beating!

After such a busy weekend I was kinda glad we were back on regular schedule today! Until Cade and Gracie missed the bus and I had to shift into high gear to get them to school on time! We made it though and the rest of the day was as expected....well, with only the regular craziness at least!

2 comments:

gg said...: It touches my heart and brings tears to my eyes to see Asa in his gait trainer. Watching him walking, then stoping to look around, only to continue with his stroll....it's an answer to so many prayers!!!; February 23, 2011 at 12:24 AM
Anonymous said...: I cannot get over Asa and the gait trainer! He looks like he has been doing it his whole little life. He has come such a long way...I know you must be so proud. I know I am ;o); March 24, 2011 at 12:04 PM

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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!