Celebrating Inchstones: As predicted.....

Tuesday, August 30, 2011

As predicted.....

Asa came down with Gracie's fun fever and sore throat! He was a real bear on Sunday and I took his temp under his arm. It was normal and being difficult isn't unheard of for him so we brushed it off as a bad day. on Monday he felt warm again but the underarm temp was normal agsin. By lunch I took a rectal and sure enough it was 100°. I'm not sure why I didn't realize before but he never has an accurate temp unless its rectal. Once the motrin was onboard and we were cuddling on the couch he was resting. I also put together that he had a sore throat. He kept asking for food and would put it in his mouth but wouldn't swallow, just pool it. He was also drooling, even though he had a pac. I know at nearly 4 he needs to lose the paci but without it he tends to sit with his mouth wide open and is drooly. Plus it keeps him quiet and me sane!

Today was better but he woke up early with his once a week poop that of course was a stinky mess! That started his day off with a bath and while he loves a bath first thing in the morning is not his scheduled bath time! We know how much he hates going off schedule or routine. Let me just tell you that he was no barrel of monkeys this morning. Nothing I did was right and I was trying it all! Thankfully he didn't have a fever all day so that means school tomorrow!

It also seems like this little bug has increased his motility. Odd, right?!?! He has been asking for food all day. He didn't eat much but he drank a million gallons of soy milk, water, ice, juice and tea. He's had the wet diapers to prove it too. Dirty ones too!!! We shouldn't have to use the Miralax tomorrow! The drinking and desire to eat is pretty great....the pooping, not so much!

I want to ask a favor of y'all. This has been a tough year for mito kids. Several families had to say goodbye to their little ones way too early. But then there are the rays of hope that shine through. One of our mito heros started the drug trial, EPI-743 in California today. I'm praying this drug will help his little body, that it gets a big green light from the FDA and that it helps all our mito kiddos. There's another ray of hope too. A 14 year old girl, Delaney, started a FB page to raise awareness for mito. Her brither, Grant, has mito and she is trying to get as many as people as possible to visit and "like" her page. It'd be great if you could spare a minute to check it out and click "like"! Thanks so much!

2 comments:

Anonymous said...: I'm glad Asa & Gracie are better. That throat virus bug is NOT pleasant. There have been several in our extended family that have had it, and I had a mild case. Thanks for blog-posting occasionally since I am not on facebook! Mrs. Margaret; August 31, 2011 at 2:22 PM
Nancy said...: What is her facebook page? I iwll absolutely LIKE it; August 31, 2011 at 5:51 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!