Celebrating Inchstones

Monday, February 25, 2013

Friends

Just a year ago, Asa was NOT a people person! It just makes my day to see him so outgoing now! He waves at everyone and gives hugs to strangers! To be honest, sometimes he's a bit too social and friendly! His school is the perfect place for him to make friends though! This sweet girl is Asa best friend! She is the sweetest thing with him. Several kids are though!

Don't you love how Asa's hands are clasps behind her back! He's giving her such a squeeze!

This pic was followed by a big ole kiss on the lips! And I worried he wouldn't know how to interact with his peers!

Apparently, Asa is all delightful at school. At home, however, he's been pushing us all. He's started have terrible temper tantrums, melt downs or just rotten behaviors for a while. He used to slap his face when he was losing it. Recently, he started biting! He bits himself, us or whatever is nearby....including the bumper of the car and the deck!!! We are trying a timeout chair, where he bangs his head on whatever is close. He knows not to bite at school. He knows his bites hurt because he has teeth marks on his own arm. I hope this is a quick phase!

Tuesday, February 19, 2013

Knees

Asa works so hard in therapy. And everyday is his therapy! Simple things that we take for granted are work for him. He isn't always agreeable or happy to work though! And when he is done, he is DONE!

He's been working in PT and Aquatherapy with getting on his knees. It seems so simple but it isn't! And knees are important! He needs to use them so that he can stand up by himself without pulling up on something else. Try telling that to Asa though! He hates working on his knees! He's been doing a tad bit better though and I've even caught him playing on his knees all by himself!

This was in the toy room at the eye doctor last week!

I tried to get him to work on his knees tonight and he was resisting. I said, "Come on Asa, knees are your friends." Barry responded with, "Until you are 45 or 46 anyway!" Hahaha!

Just so you get an idea of how hard he works, check out this video of him climbing the stairs last week! Such a trooper!

Sunday, February 17, 2013

Mito Family

Today, I got to spend the day with my wonderful group of mito moms! They are my mito family! When Asa was diagnosed with mito 4 years ago, I got welcomed into a world of wonderful mito families in the Nashville area. From there I met 3 other families in the Memphis area.

It's just been the 4 of us for several years now. Recently, we added another family to our group when Emily found out her sister's niece was also affected. At a family meeting last fall, we got to meet 2 other newly diagnosed families. At lunch today there were 7 families represented with 2 other moms not able to join us. That makes 9 families, in our area, affected by mito!

Conversation is easy for all of us. None of our kids are exactly the same but we share many similar stories. It took us all of 35 mins to start talking about poop! It only got more fun from there! I learn something (many something's, actually) from each of these ladies and I can't wait to visit with them again!

Talk turned to the Mito-What 5K that's only a month away. If you want to sign up and get a tshirt and goody bag you better sign up quickly! They tshirt order will be turned in on March 1st! You can always visit the website and just make a donation to the UMDF. Check out this video of our buddy, Jackson and then visit the race page to make a donation or sign up today.

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!