Celebrating Inchstones: Christmas Eve!

Saturday, December 24, 2011

Christmas Eve!

I sit here with 1 hour left before we leave Christmas Eve for Christmas Day. Cade and Gracie asked to go to bed at 9pm. At 10:30 I got up to get "Santa" ready and found Gracie sitting on the stairs! After a pep talk (and a tiny dose of benedryl) she headed back to bed. Her alarm clock is set to go off at 5am. Not because I want them up that early but so they don't come downstairs until 5am!

We had a great Christmas Eve together. Gracie and I made cookies this morning. After they cooled all the kids decorated while Chrisymas music played. Anna, Cade and Gracie decorated while Asa ate broken cookies and licked icing off the spreaders when they finished with them. I cooked at the stove and Barry watched football. My heart was full!

We ate supper and opened gifts with Barry's family. I can't even tell you how good Asa did! It gets noisey and busy and over stimulating but Asa was awesome! He had a few,moments of clinginess but he settled again and would play. The kids had a blast, of course!

Tomorrow morning we will have "Santa" and our gifts. Then we'll go to church. We'll have lunch and gifts with my family after that. I'm pretty sure a nap will be in order too!

I'll leave you with the Word we've read numerous times in the last month:

Matthew 1:18-25 ESV

Now the birth of Jesus Christ took place in this way. When his mother Mary had been betrothed to Joseph, before they came together she was found to be with child from the Holy Spirit. And her husband Joseph, being a just man and unwilling to put her to shame, resolved to divorce her quietly. But as he considered these things, behold, an angel of the Lord appeared to him in a dream, saying, "Joseph, son of David, do not fear to take Mary as your wife, for that which is conceived in her is from the Holy Spirit. She will bear a son, and you shall call his name Jesus, for he will save his people from their sins." All this took place to fulfill what the Lord had spoken by the prophet:
"Behold, the virgin shall conceive and bear a son,and they shall call his name Immanuel"
(which means, God with us).
When Joseph woke from sleep, he did as the angel of the Lord commanded him: he took his wife, but knew her not until she had given birth to a son. And he called his name Jesus.

I pray that you feel the love of our Savior during this holiday season and that you see His blessings all around you in the New Year!

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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!