Celebrating Inchstones: Sunday

Sunday, May 23, 2010

Sunday

I don't know how to start this post. I don't really have the words for today. I just sit and reflect but have no voice for it all.

A few weeks ago during Sunday School, I mentioned that we will be taking Asa back to Houston in June. My teacher made a comment or two and that was the end of the conversation. Until the next day! My teacher called and said she'd talked to some people and they wanted to have a benefit for us and wanted to let us know of the date! LOL! A benefit had been mentioned several times since Asa's birth but we always turned it down. We kept thinking we might have some huge need and then we'd need to do a benefit. On this Monday, though, she wouldn't take no for an answer! I'm sure I could have completely resisted but something in her voice, in her spirit, made me say Ok, hesitantly.

What I thought was gonna be a lunch after church soon turned into a lunch after church, a special song service and an invite to several other neighboring churches! I'm not sure I signed up for ALL of this! :)

I've been involved in benefits for others before. It is a time of celebration and the feeling like you are helping. I love being on the working side of this coin. The receiving side is much harder, at least for me! I've felt awkward and needy in the last few weeks. I wasn't given many details and certainly no "job" so I felt a little useless and like I was doing all the taking with no giving. It is an odd feeling! I was so nervous about this day for several weeks.

And then the day was here! It was a little weird for a while. Had this been for someone else, it would have been an awesome party, I thought. Then it hit me! All of these people came for lunch with us, for Asa. All of these wonderful people spent their Sunday afternoon singing with us! All of these families rejoiced, celebrated and worshiped with us!!! People who we have known and loved for our entire lives. People we've only just recently joined with. People who we don't even know. I was blown away.

The lunch was great! I'm not sure what it was like behind the scene but it seemed to go perfectly! The singing was amazing! So much talent! Such a worshipful service. To be joined with so many from other churches, other families, other walks of life and all of us worshiping and being ministered to was awesome. I don't know how I held it together all day! Definitely divine intervention!

When it was all said and done, over $4000 was raised! I know, unbelievable!!! Again, stunned silence. I just keep reading that number over and over again! I don't know what we did to be so blessed by so many.

So many could share our same journey, our same path. We only do what must be done. We only do what any parent would do. And it is not by any of our own strength. I am so blessed to be surrounded by people who understand that faith and trust in a God who is Love is the only way I can do anything I'm thrown into. God has blessed us so much!

Thank you all who participated today! The old friends and family who came. The new friends who showed out! Those who spread the word and brought others! Those who cooked and cleaned and planned the smallest details. Those who sang and shared and let us worship with them! Thank you to EVERYONE! Your presence and prayers are what we desire most! Thank you giving us both!

And the best news is that Asa made it through the whole day without a crash or puking. I can't remember the last time that happened! And we are talking some major stressors today...it was crowded, it was warm, it was loud. It was not his environment but he did great!! If that isn't a testament to God's plan, then I don't know what is!

We did have one slight mishap this morning. As I was putting Asa into the van to go to church, he jerked and hit his forehead on the door. The fact that he had strength enough to jerk either means I'm getting weak or he is getting strong. Anyway, instantly he got a huge bruise and bump on his head! GREAT! But no tears, no crying, no freaking out and puking! Nothing but a nasty bump! WOW!

Tomorrow we go to Vandy for a GI appt. This is a new GI and I hope she has some ideas of how we can stop this puking! I reeeeaaally hope she has some ideas. We can't make any progress in oral feeds unless we stop the puking....in my mommy opinion!

Thank you God for such wonderful friends and family! Bless each one as richly as You have blessed our family! May we only let Your light shine through our lives. Amen.

3 comments:

marie clare said...: So wonderful that you have an awesome church family to support you in this journey.; May 24, 2010 at 12:04 PM
Unknown said...: Kim,

I am just feeling "FULL" reading your post!

Please allow GOD to bless you through your friends and loved ones!

I only found out about this awesome event last week, and I prayed that it would yield joy and incredible resources for your family. I wanted to say something to you, but I decided to pray instead.

GOD is amazing in so many ways..........HE blesses us beyond our expectations EVERY TIME.

As you know, my sister passed in 2009....towards the end of her journey on this earth, she gave me some of the best advice that I would like to share with you......."When people want to help you, just say thank you, and receive the blessing....it is from GOD."

I am so proud of you, for taking it all in, and receiving your blessings (in multiple forms). It is okay to receive!! '

My heart and prayers and with you and your family and I will wait to hear more regarding your visit to Vandy.

You are awesome!; May 24, 2010 at 5:48 PM
Christy said...: that is so great about the benefit! You have an awesome church family..you are blessed! So glad they did this for you all!!; May 24, 2010 at 10:01 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!