Celebrating Inchstones: Merry CHRISTmas

Friday, December 24, 2010

Merry CHRISTmas

It's 9:00pm on Christmas Eve. Sadly, I'm the only creature at our house who want to NOT be scurring!! Cade and Gracie ate excited and too bouncy for bed. Asa doesn't feel good and between the clinginess and meds can't/won't go to sleep. Anna is a teenager and we all remeber the days we could stay up all night and not be affected the next day!

I, on the other hand, have been fighting midnight battles with Asa! He usually wins and I end up dozing with him in my arms in the recliner most of the night. I can get him back to sleep but if I lay him down he wakes up. I've resorted to trying to climb into the crib and camping out in his floor. I think he'll be in a big boy bed before long!!!

If you aren't my Facebook friend you have missed the fact that Asa is sick. He stated running a low grade fever on Wednesday. He puked and I thought it must be a virus. He woke up ready to go on Thursday though so I thought it must have been his slow motility. Last night he woke up at 1am and had a terrible cough. I took him to the walk in clinic today since it'd be Sunday afternoon before I could get seen again outside of the ER. Thankfully his lungs ate clear and it is just an upper respiratory infection. He got meds so hopefully we have nipped this in the bud!

I won't complain about a little bug. We have too many friends that are really struggling right now. Many will be celebrating Christmas in the hospital or trying desperately to stay out of the hospital! Our plans may not be going according to plans but we are together!

As we celebrate the birth of our Savior I'm thankful that God sent His only Son to this world as a sacrifice for my sins. He came as a baby, lived a perfect life, died a cruel death and rose again so that I can have a way to heaven and eternal life. That is the reason for the season! I do love seeing the joy in my kids eyes and the food and visiting with family but I celebrate becuse of the birth of my Savior!!!!

1 comment:

Anonymous said...: We want to wish each of you (Kim, Barry, Anna, Cade, Gracie, and Asa) a Merry CHRISTmas also. Because you are able to turn your focus on what God has blessed you with and you are able to intentionally be thankful, God is providing the measure of grace you need for each day! Hope you have a blessed day with all of your family! Love in Christ, Bro. David & Margaret; December 25, 2010 at 9:47 AM

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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!