Celebrating Inchstones: Hair raising day

Saturday, October 2, 2010

Hair raising day

We have had the best day. Well, I have had the best day!

Barry stayed home with Asa and I took the big kids to a Jubilee Celebration at the church next door. There were 6 churches involved, 3 white and 3 blacks. I know many races worship together and I doubt many here would have trouble with that but we are small, country churches and that has just been how it is always been done. We've met and had joint services several times but this was a big blow out!!!

There was bouncy houses, food, a car show, health screenings, visiting, singing and worshiping God! I needed this so badly! We've had a busy, busy few weeks and to have a day to visit, eat, play and worship with everybody was just what I needed! All the music and the preaching was great. Everyone was singing, clapping, laughing.....it was great!

Barry was thinking of bringing Asa but when we could hear the music from our house, a 1/4 mile away, we thought he probably wouldn't like it!!! And it was loud but the weather was perfect! Barry took Asa outside here but the wind got him and he got sick. Oh, well!

We did go back out this evening and Asa rode in his little power wheel til the battery ran out! I took him on the trampoline for the first time! He liked it! Then he loved it!! LOL! He could make very little movement and get all bouncy. He scooted all over. Then he touched me and shocked me! I was worried this might scare him but NOPE, he laughed and poked at me again!! The wind was still strong but he was busy so he didn't get sick. He did get DIRTY though!!! His bath water was black!

I think we will all sleep well tonight!

3 comments:

Sarah said...: What silly photos. Gatherings like this are so wonderful to be a part of!; October 2, 2010 at 7:53 PM
Heidi said...: He-HE, LOVE this pic! What a great backdrop for pictures! I first thought this was a professional shot :)
hugs-
Heidi & Jack.; October 3, 2010 at 4:25 AM
Kim and Asa said...: Heidi, I WISH I had the photography skills you have!!! Truth is I hardly have the point n shoot ready, I'd really be in trouble with a good camera!! Thanks though!! It is hard to capture Asa's moments! He turns them on and off like a switch.

As for the school thing on the last post....I don't understand why Jack doesn't get more! I guess he falls into that huge gray group that does OK but not good! That must be so frustrating!!! So far everything has been good for Asa, of course he hasn't actually started, it is just on paper! But I'm not nervous like before!

Hugs to your sweet boys and girl!!! Love ya!!
Kim; October 3, 2010 at 7:23 AM

Post a Comment

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!