Celebrating Inchstones: Randomness

Monday, April 26, 2010

Randomness

First, I have to say that I have the best hubby in the whole world! Well, he is at least in the top 10!

We've been planning a mito moms meeting in Memphis for a few weeks now. We settled on this past Saturday as the date. We were all so ready to go...and then came the tornadoes! So we postponed to Sunday afternoon.

Now I know many ladies enjoy a girls day out but our days seem to be different. We are known to show up at a restaurant and spend the next 5 or 6 hours there all the while completely oblivious to the time and any thing around around us! And that held true on Sunday. We met for a "late lunch" at 2pm. I left the restaurant at 8pm!! And I'm sure we had some odd sounding conversations about feeding tubes, seizures, IEPs, supplements (which I'll now refer to as "replacement therapy"), therapies, genetics, EEGs, MRIs and Houston. Seriously, I don't think anyone sat very close to us and maybe that is why!

So all during my marathon lunch Barry tended to the children at home! But that isn't what makes him so awesome cause as my new favorite FB group is called "it isn't called babysitting when they are your own kids"! He is amazing because he did the laundry and cooked them spaghetti for lunch. He had Asa fed and playing when we came in from church. And the best, he doesn't complain when I don't cook!

And still those things don't really make him too extraordinary. Maybe it is that he takes the garbage out. Or he always puts out the new roll of toilet paper, which because of some odd issue he won't allow me to write out on the grocery list. It can only be TP cause no one else buys the stuff!! And I can't remember the last time I had to open a new tube of toothpaste. Aren't these the silliest reasons to be so amazed at Barry?!

He also makes the coffee here. That is mostly for his own survival though. He says I make it so strong that I'm starting to grow hair on my chest! But not only will he make the coffee, on the weekends he'll pour me a cup and start the internet so I can check my email first thing! Now that says love better than diamonds if you ask me!

Plus, he works really hard, does the ball stuff with the kids, acts goofy with them, makes me laugh, changes diapers, cleans puke, washes the van, mows the grass and mostly just has to put up with me!! So I guess all of that combined makes for a pretty awesome guy. And why this has struck me now, I don't know. But these things just keep passing through my mind and I need to put them down and get them out! You know, make room for the REALLY important stuff! :)

Secondly, Barry stayed home from church with Asa because Asa has been so off! He won't nap, he fusses, pitches a fit really, red faced, won't poop, etc. I know that doesn't sound so bad but when it is coupled with a disease that causes low energy and the need to avoid stress, well, there is the problem. Picture your normal 2 1/2 year old without a nap. Now picture that child on steroids! CRAZY! The less he sleeps, the more he needs! The more he needs, the more he fights. And while he is busy resisting sleep, his tummy is throwing in the towel cause it is just too much work to do all this at once! We usually remedy this by giving him some much needed down time and getting back to a good, solid routine and things straighten up. So far this hasn't happened in the 4 days we've tailored just to Asa. He did start pooping better today...even though I really begged him to get it all out yesterday when I was at my marathon lunch!

Tomorrow is a therapy day but maybe he'll be in a better mood for that! SURE! Well, I can hope, right!

Oh and a Gracie story to close. She had a softball game tonight. They did pretty good and had almost tied the score when the other coaches lost it over some calls. Seriously, they got so ugly! Anyway, after the argument and the delay, Gracie's team lost. So in the car we are talking about tempers and tantrums. I called Anna and she tells me that Asa is asleep, at 7pm and not for the night! I scream "get him up!". I go on to loudly tell her he needs to be up, why he needs to be up, how could she let him go to sleep, whoa is me, etc. So I hang up and Gracie said "well, looks like somebody else had a temper tantrum tonight"! HA!! Out of the mouth of babes!! And for the record, the lack of sleep must have finally caught up with Asa cause he still went to bed before 9pm! Poor guy.

3 comments:

Christina said...: And to think that your mom just thought Barry was the worst human being on the face of the planet when he wanted to marry her 18 year old daughter! Haha!!! Sorry Mrs. Debbie just had to throw that out there! You know I still laugh about you meeting Barry. I think even if I get alzheimer's one day, I will still remember that whole situation. Haha!!! Its great to have a wonderful husband, huh? I'm pretty darn lucky myself.; April 27, 2010 at 8:21 AM
Debbie said...: Glad you have so much support from your husband, that is priceless!; April 27, 2010 at 5:46 PM
Kim and Asa said...: I agree Debbie, it is priceless. I don't know how you find the strength to do all you do on your own most of the time. I think of you often when I whine because Barry is working outside too much. Your strength and endurance is amazing. You are in my prayers daily.

And I'm so processing your post from today. Wow is all that I can say right now. I think I can name friends on both sides of my bridge. You are a wise moma!!; April 27, 2010 at 10:13 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!