Celebrating Inchstones: Deeper Still....

Saturday, July 10, 2010

Deeper Still....

I have had a wonderful past 2 days! A neighboring church was showing a video conference of Kay Arthur, Priscilla Shirer and Beth Moore. I've seen Beth before and I knew she wouldn't disappoint but I was surprised when the other ladies were both just as amazing!

On Friday night we enjoyed some praise and worship music with a live band, By Grace. Today we had some worship music via video and even some Travis Cottrell via video! I looooove me some praise and worship music!!!

But back to the conference... Faithful, Abundant, True. Now I'd say that I knew all these things about Christ and my Savior already. But this weekend we went "deeper still" on these truths.

Kay taught Hebrews. The whole book of Hebrews! She was so fast and thorough, the night flew by! She started off the theme of the meetings by challenging us to "rest in faith". As Christians we must study and understand and soak up the living Word of God so that we can cling to it and rest on it. She literally laid her head on her Bible and gripped it to her chest. We must study and know what the Bible says so that we can claim the promises God has given to us in His word!

This morning, Priscilla Shirer taught on Ephesians 3:20-21, "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." This is a pretty common scripture and one I've clung to many times but when she broke it apart and we really studied it, it took on a whole new meaning.

This study really spoke to me and it probably has a lot to do with our situation with Asa. There was a time that all I prayed for was a complete healing and that we'd just wake up and Asa would be "normal". Then once we had such a dire diagnosis my definition of "miracle" changed. I consider it a miracle that Asa is as healthy as he is. A miracle that he is making progress in his therapies. A miracle that I'm able to even get up in the morning! I am a tired, weak, helpless person without God in my life! It is only because of Him lifting me up that I'm able to do any of the things Asa requires!

Priscilla, though, reminded me that God able to go beyond my beyond. He can go past my way past! For example, you leave the house and tell your teenager that she needs to clean her room before you get back. That is the expectation. When you return, her room is clean and so it the rest of the house. That is past your way past. Then you are led to your bathroom where she has drawn you a bubble bath. Now she is way past your way past. Then she has supper done and is ready to serve you in bed. So waaaaaaay past your way past!!!! That is God! He can go waaaaaay past our way past. Whatever you can even think, he can out do even that! He may not choose to go way past in the exact moment that I'd like for Him to but He is the power to do it! In those times when I wonder why He won't do it I have to have faith and cling to the promise of Jeremiah 29:11 and rest in the knowledge that God has a plan for me, a plan of hope and not of harm!!!

Beth closed up the session by helping us discern the truth. Beth had been "punked" and told how she didn't follow her Holy Spirit gut when He was telling her to look deeper. Not only did she help us discern the truth in other people but also the truths of Christ. Again, we have to be in the Word and studying so we can know what don't know we need to know! We can have knowledge that we don't know we need until we need it. Only in studying and listening to God can we discern the truth from untruths. We know that in the end days there will be many false prophets and teachings. In fact, today it would be nice if some of the untruths that is taught were true. Untruths like "if it feels good do it" or "lifestyle choices" or "it is ok as long as they aren't hurting anyone"! Those are untruths though! I don't feel like Beth's message spoke to me as much as the other ladies did but she has great points and I'll be keeping my note handy because I'm sure I'll need them in the near future!!!

I had a great couple of days studying God's Word and seeking Him. I'm so thankful to the group of godly ladies who seek Him out too and often invite me along so I can take my journey along side them! Thank you ladies!!!

1 comment:

Clara-Leigh said...: Hey Kim, thanks for the post on my blog last night. While I never want anyone to go through any of this, I find comfort knowing you can relate. It's a load of "heavy stuff" to lay on most people. THANK YOU for being my friend!!!!!
I read about the conference, and it sounds AWESOME!! I truly want to re-read it in a while after I take Garrett on the golf cart...he is about to lose MY mind begging!!!!
Hope Asa is well today, and yes, you are right. God goes way beyond my beyond, but I need to open my eyes and APPRECIATE it DAILY, no, EVERY SECOND!!! That's a gift from God, that message. Thank you for sharing!!!!
Love,
Clara-Leigh; July 16, 2010 at 11:34 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!