Celebrating Inchstones: Long lost friends

Saturday, July 17, 2010

Long lost friends

Do ya'll remember me? Is anyone even checking in? Is your summer as busy as mine and you've had ZERO time to blog surf?!

I can't believe it has been a week since I blogged last. More importantly, I can't believe that last weekend I was enjoying some girl time! LOL, seems like much longer ago!

We've had VBS at church this week and with all the "regular" appts we have, it was one busy week! I love VBS week and the theme this year was Saddle Ridge Ranch so the western decor was lots of fun too! It take a ton of energy to have 5 days of VBS though. And energy is something I could use more of! It was so worth it though. The nights actually went by quickly and the kids were so smart and fun. I have lots of cute tales! Tomorrow is family night and then it will officially be done for another year.

Asa stayed home with Barry since he isn't exactly a night owl! Plus, the loud, excited kids aren't his thing either! Barry would walk in from work and I'd leave with the big kids. By the time we got home at 9, Barry and Asa would be in the bed! I have to say, I didn't like not seeing my hubby and having a family supper together. Asa was pretty clingy this week and I wondered if it was because no one was home all evening with him. He notices when you are putting on shoes to go and he gets excited. He was pretty upset a few nights cause we left him.

Asa's eating isn't any better either. We've added the Reglan back and he still isn't interested in food. He is even gagging and refusing again. I'm using the pump every morning and even some of the afternoons. This roller coaster is so frustrating! He did eat several bites of my baked sweet potato tonight. I put some in a bowl and he played in it! He got really messy!! He likes to get his feet involved and kept putting him foot on the table. He even rubbed some sweet potato into his toes. Strange kid!!

We've been playing some hand games and he really gets it! He can do "Wheels on the bus" when I start singing it. He does the "round and round" part and the "swish, swish" for the wipers. He also has "Patty Cake" down. He knows where his eyes, nose, ears, belly button, Mickey button, toes and hands are. I can also ask "Who is a big boy?" and he raises his arms up high!!! I know these things seem insignificant but to us they are huge!! Just some of the inchstones that we celebrate around here!!!

Do you have time for a few funnies from VBS? I had the Kindergarten class which should mean they have finished K but it ended up the smaller kids class had a lot so I took a few of the older 4's and 5's too. I had 4 kids most night so we had lots of time to get to know each other and chat! One little bitty told me she didn't like the skin of her apple slices we were having for supper. I said that was fine just don't eat that part. But I also mentioned that the vitamins live in the red part so she should try a bite or two. Later I noticed this same little girl licking her apple skin...she'd already eaten the apple part! I asked why she was doing that and she informed me she was getting the vitamins off. I tried to convince her it needed to be chewed but she was convinced she could see the vitamins and was licking them off! She soon had the other 3 kids convinced and they were licking their apples too! Sorry parents!

I also had to do a lot of reminding about how we behave when someone is praying. Hands and feet still, head bowed, quiet, talking to God...nothing too difficult. Twice I was told my prayers made them want to go to sleep and once I even heard some soft, playful snores while I prayed! NICE!! And I thought I was keeping my prayers shorter for the kids! LOL!

I really do love VBS! It is a lot of work but the church is so alive with energy during VBS week. And not just the energy from the Kool-aide and candy, though there was plenty of that! I mean alive with the energy of kids who are just discovering the teachings about Jesus and God and salvation. Many of our kids have grown up in church but we get to cover a lot of truths in this week and the kids really have a good time learning how to apply the lessons to their lives! It is an exciting time for all of us!

I'm not sure our days are gonna slow down until school starts back in 2 weeks. There is still a lot to do between now and then though. Asa has his 48 hour EEG at Vandy on Friday. Hopefully we can get what we need and be out on Saturday morning. I'll be glad to get this test done!!!

Thanks for hanging on my friends who are still around! I have some pics to post but that'll have to be another night! :)

1 comment:

Anonymous said...: Kim, I'm glad to know all is well with you and yours. I had checked your blog several times and no updates since your Women's conference. After reading about VBS I TOTALLY know why no blogs!(Literally!) We also had VBS at FBC this past week - mornings and I worked with those who had just finished Kindergarten (We had 31 enrolled- highest day we had 27. We were a self-contained group with three rooms to rotate in and out of - my corner was crafts- lots of fun- had plenty of helpers [Planned for 40 so plenty of crafts ready to go each day]. It does require A LOT OF ENERGY, but oh so much fun. Glad you all had a great week. Reading your blog brought back lots of fond memories of VBS at your church! Yes, the Saddle Ridge Ranch theme was lots of fun. [Next year's theme takes us to the Big Apple (New York City)...wonder how we'll decorate for that... skyscrapers, taxi cabs.. etc.] Glad everyone is o.k. We'll pray for Asa's appetite to improve! Know that is sooooooo frustrating. Much love to all. Mrs. Margaret; July 18, 2010 at 4:21 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!