Celebrating Inchstones: Mito families are my heros!

Sunday, May 15, 2011

Mito families are my heros!

I had a mito moms breakfast/brunch/lunch today. We did call it off before the supper hour this time! That's not always the case. I'm not sure how time flies by so fast! We are pretty convinced that given the right resources we could solve our mito problems and the world's problems too. We decided long ago that mito will be conquered not by the FDA, Washington DC or Merck and Pfizer. We'll defeat mito around the breakfast table at Cracker Barrel or the lunch meetings in the mall food court or on the support message boards and FaceBook and mostly in elevator rides with innocent medical students while riding up to the 10th floor! Yep, mito momas, daddys and grandmas will be the ones to stomp mito!

I have been pretty bugged by something during our meeting though. Each time I think of it I get all jittery and jumpy in my stomach. I should have done something, I should have done more than something. In the end though I'm not a confrontational person. Not generally anyway. I envy those momabears who can really stand up and fight. I also roll my eyes and shake my head at those crazy momas who roar at any and everything and can't be taken seriously. I think I have the type of personality that is all or nothing. If I start roaring it may turn into a roar about the weather or the day of the week or the way my water glass was one ice cube too short. So instead I mostly don't roar! I let people in line in front of me, I just replace my slightly dirty fork with a clean one from the next set, I pick at my steak that could be cooked a little bit more. Still, there are times for roaring! Today was one of them!

My friend Emily had to bring her son Jackson with her. You know if there was anyway possible she would have avoided loading a 46 pound kid, his 45 pound wheelchair, 2 or 3 inhalers, meds, feeding tube, formula and water! But sometimes it just can't be avoided and Jackson is a ladies man so it was a treat to have him with us. As she left the back wheel of the wheelchair got hung a little on the chair of a lady next to us. The nicely dressed church lady turned and looked crossly. As Emily tried to dislodge the wheel the look continued and the church lady made no move to help move her chair. Neither did her companion, the church man in his nice suit. Once the wheelchair was free, church lady huffed and straightened her chair. All of this took about 30-45 seconds but every time I think of it I feel my blood pressure go up. I asked shockingly if Emily saw this and she replied "all the time". Seems people also don't take the time to hold doors open even for wheelchairs.

I've chastised myself for not saying something. For not standing up for Emily and Jackson. In all likelihood Emily would not have wanted me to cause a scene. What would likely follow would be pity and no one wants pity. A better outcome would be thankfulness. An appropriate outcome would be for church lady and church man to be helpful instead of hindrances and then be thankful that they don't have to load, unload, load and unload a 46 pound kid and his 40 pound wheelchair and a backpack full of supplies just to have a couple of hours for breakfast and friendship. Thankful that they haven't spent the last 3 weeks fighting with a diaper company to send out the proper diapers for a 4 year old. Instead having to settle and buy Pullups whose main function is to catch a small amount of pee while letting the kids feel the "wetness" of the rest of the pee. In a wheelchair bound child this doesn't help with potty training but helps in soaking the clothes and wheelchair with pee. Yep, church lady should be thankful!

And that's what I should have told church lady and her church man. And all the other diners who stared instead of speaking and smiling to Jackson. Jackson loves the ladies and has a smile that'll knock your socks off! That's what church lady missed with her soured face and disgruntled huff. I pity her!!!

And while I'm on my soapbox.... Don't use the word "retard" or "retarded". Unless you look into the face of "retarded" everyday, don't use it. If you don't see it written in numerous clinical notes to describe someone you love, don't use it. Unless you are speaking medical talk or rebuilding a motor, leave "retard" in the closet.

And that concludes my public service announcement and soothes my soul for today!

1 comment:

Clara-Leigh said...: I just LOVE YOU TO DEATH!!!!!
You are so stinkin' candid and tell it like it is....a mark of a true Southernor....like me!!!!
I totally get it with the church lady and man, but like you, I am usually just rolling my eyes and then feel like "what difference would it make? If they don't get it now, why do I think I could change their thoughts...." But perhaps we are terribly wrong!!
And the word retarded.....we are there too. Our son is retarded. It's official on paper, his charts, school, and I totally agree. It is a terribly misused slang for many people, and as a youth, I must say I am sure I threw the word around from time to time, and I feel like poop for ever saying it!!!!! It's time the world woke up, embraced all of these special people...GOD CREATED THEM, TOO!!!! Oh, and give us parents some slack and help, too!!!! You coming to UMDF symposium in Chicago??
Love,
Clara-Leigh; May 16, 2011 at 9:54 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!