Celebrating Inchstones: YEC 2010

Monday, March 8, 2010

YEC 2010

I don't know if YEC is a Tennessee thing or if lots of you know about it. YEC stands for Youth Evangelism Conference. It is a weekend of music, messages, skits, laughter, praise, worship....all for the glory of God. Sure it is geared for youth but thankfully those youth need adults to go with them!! Maybe I'm just a youth at heart but I feel so blessed to have gone on this trip!!

So some of my brief notes from the messages we heard!

1.) God is a loving God but He will not chase after us. He will not compromise His expectations in order to draw us to Him. Luke 18:18 tells the story of the rich man. When told to give his riches away and follow Jesus, he refuses and chose wealth over Christ. Jesus didn't let the man have a pass on this issue just to have him as a follower. What do we need to give up for Christ?

2.) God is good but He isn't always safe. He will ask us to step outside our comfort zone and challenge our desires in order to follow Him (see the above).

3.) Holiness isn't what we separate ourselves from but what we give our lives to. It doesn't just mean stepping back from a place but stepping towards God's will.

4.) Wet sponges left sitting on the counter will stink!! So will Christians who soak it all up but never ring out God's blessings and message on others! If we don't spill over and soak those around us, we will end up soggy and stinky!!

5.) If you give teenagers an inch of rope, they'll take a mile......and use it to tie themselves up around their ankles!! No, we didn't tie any kids up but rope might be added to the packing list next year! :)

Amazing music, amazing messages, amazing worship!! There was a great presentation by Joe Costillo, a sand artist. You have to see what he does....there is no explanation! We saw "The Passion" and "The Prodigal". Let me know what you think!!!

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On the home front....all went well! I had no doubt it would! Judy kept Asa Friday afternoon and handled the pump well. Then Moma had him while Barry took Cade and Gracie for ball tryouts on Sat. She handled the pump too, mostly!! She did let him talk her out of one feeding though! And when I say "talk her out of a feeding" I'm using those words loosely. Asa doesn't talk so he pushed her hands away and fussed and she backed off. He told her he'd take a cup but then he wouldn't! See, even without words, he can "say" alot!! I can't be too hard on her though because on Sunday he was taking a nap and instead of waking him up for the pump, I took a nap too! :O! He was sick later that night so I know a schedule works best for him but sometimes it is hard to remember that in the moment!! And Moma promised she wouldn't let him talk her into that again!!

And on Sat. Asa called 911 and a sheriffs deputy came to the house!!! Asa loves the phone and apparently had called them and left the phone off the hook. We usually unplug the phone from the wall before we give it to him but I guess this time he made a connection! The sheriff said it wasn't a problem. I bet Barry was so embarrassed!! I think I would have taken a picture of Asa will the deputy and called another inchstone!!! None of the other kids have ever done this!!! Not that I'll encourage him or let him do it again but it is kinda great!! :)

1 comment:

Anonymous said...: Now, in my (Kim's Mom) defense, Asa didn't want me to hook him up to the tube Saturday and it WAS a BEAUTIFUL day outside. So...I thought he would like a picnic in the rocker on the front porch. He took about 1/2 of his Pediasure as we watched the birds, the flag waving and the few trucks go by. When he wouldn't finish, I knew I was in trouble! I did promise to go by the rules next time if they will just give me another chance. (I'm not too worried about the another chance thing...I'm only down the road and such a convenient babysitter!); March 9, 2010 at 7:45 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!