Celebrating Inchstones: A fun night but a rough day

Thursday, July 8, 2010

A fun night but a rough day

Asa has had a rough day today. He has been refluxing all day. In PT he spit up some and the whole time he was drooling this yucky drool. Needless to say, feeding therapy didn't go so well! He gagged and tried to poke his eyes out the whole time! He did better once he was working on language skills but feeding was a no-go!

He did perk up this afternoon and was eager for his lunch cup of Pedisure at 1pm, one hour later than usual. At 4pm we had a treat of soft serve chocolate ice cream and I fed some to Asa. OK, I fed a lot to Asa! He loved it and used "more" many, many times. He has had trouble with chocolate numerous times but I still keep giving it to him. How can one go through life without chocolate?! Well, tonight he was gagging again and spitting up and refluxing. I won't blame it solely on the ice cream though since he'd been like this all day, but it was worse tonight!

We stopped the Reglan a week or so ago and maybe that is the reason for the bad reflux. I started it again tonight. Maybe tomorrow will be better. It has to be a miserable feeling to be refluxing all the time! I remember how horrible I felt when I was pregnant and had reflux. YUCK!!

Last night, my mom, Anna, Cade, Gracie, Timothy (my nephew) and I went to see Chris Tomlin and tobyMac in concert. Chris Tomlin is an amazing praise and worship leader. His music and words are so uplifting and moving. Several of his songs just bring tears to my eyes! tobyMac, on the other hand, is a middle aged, white guy, Christian, rapper. Sounds like a likely combo, right?! But it was great!!! I'm not sure how much the boys like Chris Tomlin but all the kids loved tobyMac!! Moma had to go into the hallway and put toilet paper in her ears!! He was really loud and you really couldn't understand the words like you can on the radio but thankfully I know all the words to his songs since we have a dozen of his CDs around here!! :)

Midway through toby's performance, the music stopped and toby had gone off stage and was standing in the middle of the audience, very close to us!!!! The stage was so busy no one had even noticed that he left and made it through the crowd!!! He sang several songs right there!! It was a great night!

Today I realize how old I am!! My hands are bruised from clapping like crazy! My arms are tired from the clapping and swaying and all you do at concerts! And lastly, I didn't join in ALL of the jumping around because I realized that after 4 kids you have to be cautious of jumping around unless you are wearing a Depends!! Next time I'll know better!!! :)

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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!