Celebrating Inchstones: Happy Spring!

Saturday, March 20, 2010

Happy Spring!

Today was the first day of spring and it felt like it!! The last few days have been wonderful. Asa has enjoyed some time outside and loved it! Today it was 72 degrees and while that is wonderful, it isn't the norm and means some yucky weather is on the way. It is supposed to rain tonight and the high for tomorrow is 50ish! Fun, right!

I took Asa's gait trainer out to the driveway yesterday. He couldn't push to well on the gravel but cracked up when I pushed him around. He likes the bumps! Sometimes I go over speed bumps in parking lots a little fast just to make him giggle! Shhhh, don't tell Barry!

Anyway, Asa did better on the walkway and back deck!! Tonight he'd scoot to the back screen door and push it open. He has been doing this for a while and loves how the door comes right back to him. Tonight, though, he was getting brave and he'd get really close to the edge of the threshold.....almost like he was going to plop right on outside. It is quite a drop off so I'm sure he'd not made it without falling! He was getting brave though. I took the gait trainer out but it was getting windy so he'd want right back in. Then he'd want out cause it looked like so much fun! If we had more room he could just get a ramp and go in and out on his own! BTW, the plastic outside the door is a bag of Pedisure bottles I'd bagged up for Barry to take off. I had them inside the back door and Asa put them outside! HA, he takes out his own trash!!

Next Saturday is the Mito What 5K!! There are 9 of us going to show support for Asa! It isn't too late to sign up! You can register on line here. I think you'll be shocked to learn how much has been raised to send to the UMDF! I know I am and we don't even have the final tally!! It is going to be a great day. Praying for good weather for all of our kiddos with temperature issues!

1 comment:

Debbie said...: He looks so cute and happy outside!

Hope you have a great week ahead!
I wish we had a mito walk here...we need fund-raising for this disease soooo bad!

Thanks for your prayers and support last week. I am looking forward to being home this week! :); March 22, 2010 at 12:43 AM

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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!