Celebrating Inchstones: Some deep thoughts.....

Sunday, January 9, 2011

Some deep thoughts.....

But first an Asa update! I know several see the FB posts but I haven't gone into details about the ick on the blog mostly because it is just minor stuff.

We've had several totally typical kid illness here with Asa. That in itself is a milestone! First, the day before Christmas Eve, Asa woke up with an awful croupy cough. I am normally the wait and see kind of Moma but with the holidays and then a Sunday coming up, we headed to the walk in clinic. Asa was fine, just an upper respiratory infection. He got 2 doses of steroids and an antibiotic. This worked wonders and he was fine over the holidays. In true antibiotic fashion though, he got a yeast infection in the boy bits area. This landed us in the peds office on Thursday. Got the cream and started treating. On Friday Asa's right eye started looking red and slightly runny. His teachers thought he was fine and he has eye issues occasionally so we carried on with our normal routine. By Saturday afternoon I was getting worried about the weekend and the massive 3-4" snow fall we are predicted so I called his ped back. Thankfully he just called in pink eye drops and we started them on Saturday. By today Asa's eye is most definitely pink eye and I'm glad we have the drops! So he had a cold, the meds gave him a rash, the ped gave him cream, the clinic gave him pink eye and we are treating! How's that for a normal series of childhood illness! Oh, and he is our first kid to have pink eye!

Now on to MY very important message cause it's my blog and I can do what I want to! Hee Hee!

I didn't do a big New Years post and I'm not one for resolutions. Mostly because I lack will power and any promises I make myself end up broken by the next day! I can't give up bread. I won't give up sugar. I'd like to lose 10-15 pounds but only if i don't have to work for it. I'd like to exercise but it is kinda boring. So you see I make a horrible resolution person! At least I know myself well!!!!

I did however think that I'd make some changes this new year. Nothing major or life changing I just think I'll be a little more ME! See, I'm really a shy, quiet person. I hear the grunts and laughs from some of you out there! But the internet is different! You can say or do or anyone on the internet and only you know the true you. For those of you who have only known me as an adult, you know I'm a talker and social. But just ask my Moma or anyone who knows me from way back when and they'll tell you I was a wall flower, an introvert, quiet and NOT outspoken at all! I think that is the deep down REAL me. I think it is also who I'm out growing! I still freak out over public speaking. It wouldn't matter if I was standing up giving you a weather report, my voice gets high pitched, I talk too fast and I'll likely cry! But I'm getting better!!

But first I'm also a Christian! A born again believer! A princess cause my Abba is the King of kings! So this new version of ME is going to try to shake off this shy version of me and let God shine through! I try to live so that God shines in my life. I'd like to think I'm a good person and people notice my faith but it isn't something that comes out of my mouth with ease. Seems I can easily fall back into my shy personality when it comes to this. It is more natural for me to be a quiet observer or give my opinion only when asked. And this is just how Satan wants it and wants me!

Even as I had the thought that I'd like to be a more vocal servant of God, I got a message from a teacher at my kids school. She wanted me to come speak to a women's group at her church! I said "YES" before I gave much thought to the fact that I'd be in front of a group of people. Speaking. About Asa and God. Something so personal. AAACCCCKK! I quickly sent a second message asking how many people would be there! LOL!

I spoke to her friends on Wednesday. It went well. I wasn't nearly as nervous as I thought. And I think I was slightly interesting because they asked questions and made comments. I had practiced several times and had 25 minutes of material but somehow we talked for well over an hour!! I guess my talker came out!!!

I also started a Bible study with some great ladies on the book of Jonah. It is called "Navigating a Life Interrupted"! I think if anything describes my life it would be "interrupted"! And while interruptions are usually not a good thing, when they are God's interruption, they are awesome!!!! So I know that God has put Asa in my life for a purpose. I know He is giving me precious insights and lessons everyday. I know I love seeing God work and I know He wants me to tell others about these lessons! Not that I'm perfect or having anything that will change your life (or WILL it?!!!) but I know that miracles are happening in my life and to sit and be quiet isn't something I want to do!

So along with Asa updates or our fun family adventures, I'll be sharing some testimony of God's work in my life! Often times these all go hand in hand! God's pretty great like that!!!!

So what has God done in your life lately that you'd like to share?

3 comments:

Anonymous said...: Given me some good, Godly women....at just the right times....to encourage me and partner with me in doing this "life" thing! And u r one of them! Also turning my man into a godly man more by the day.....I'd like to take credit....but.....that takes God!!~ Robin; January 9, 2011 at 10:09 PM
~Jana~ said...: Hi kim, You don't know me... I found your blog through some others. My 20month old little boy has just been dx with a mitochondrial disorder. Anyway, I just wanted to tell you how much I enjoyed this post. It all sounds so much like me and how I think and feel these days. Thanks for sharing.; January 9, 2011 at 11:29 PM
Clara-Leigh said...: Dear Kim,
Your post gives me grinny, chilly, excited grins!! I am so thrilled to see how much you are stepping out to share OUR faith in Jesus Christ!!!! I am sooooooo proud of you!!!!! Wow, to go speak like that does horrify most people. IN fact, a study once showed a large majority of people prefer death to public speaking!!! Seriously!! Your post revived a thought I had recently of maybe starting a blog just for moms like us or any mom looking for that extra dose of Jesus we need daily. Maybe a daily story, experience and scripture to encourage others.......maybe we can kick that idea around sometime!! Maybe several of us could co-op on it??? Just a thought I had while driving alone the other week!!
Keep that fire burning. God is callign you and you are answering!!!
Much love,
CL; January 10, 2011 at 10:33 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!