Celebrating Inchstones: Tuesday

Tuesday, March 2, 2010

Tuesday

Today started off rocky too. I know this stuff is minor for many, many families but I can't stress how routine we are here. How routine I am! The only way I remember my schedule is because I do the same thing day after day. Mess that up and who knows where I'll end up! I pretty much just operate on autopilot! And this is day 3 were little things have thrown me off!

So last night Asa was up from 12-2:30! He wasn't sick, just up. He has been drooly so I thought it might be his teeth and I gave him Motrin. My grandmother asked if he could have had a nightmare. I don't know, do 2 year olds have nightmares. I've never really thought of that. I know Gracie has vivid dreams!! You'll never convince her that a cat didn't jump out of a tree an scratch her, even though she had no scratches! And this morning she got up looking in bags and on stuff for a ball glove she dreamed her daddy bought her. Very vivid for her!!

Anyway, it is kinda sweet when all he wants is you! He just kept putting my hands on him and on his face. Really, really sweet. He has a thing for hands, you know!

So I was dragging this morning and tried to get Cade's brand new contacts in. Not so much!! After 30 mins. he went to school in his old glasses. Even after school we couldn't get them. We tried everything. I finally put his contacts in my eyes to see if there was a trick. I even had trouble with my eyes! Finally, finally I got them in my eye and I thought I had it figured out. When I moved on to him, it did go a little smoother and he has them in now. Problem is he doesn't want to take them back out!

And he got in trouble for being too rough while wrestling with Gracie. When he found out his punishment was that he had to go to bed early, he started saying that I poke him in the eye over and over and I don't have to go to bed early!!! HA!! Clearly this is deranged talk!! I would have stopped "poking him in the eye" before we left the store with contacts!! And an early bedtime is a privilege, not punishment, for me!

So after our late night, slow start and contact fun this morning before 7am, I was looking forward to some breathing time before therapy. Unfortunately this didn't happen because Cade left something in the van that he was supposed to give to a teacher for me this morning! So when I was hoping to close my eyes for a few minutes, I was quickly getting the pump ready, gather my stuff for the day, throwing clothes on me and Asa and dashing out the door. All was fine but by 10am I felt like I'd run a marathon!!

The rest of the day went easy peasy though. Except for when the wind took Asa's breath and he started loosing it. Gaggy, sweaty, limp, sleepy. It all turned out Ok and really he is doing this less and less. All of that OT and sensory work must be paying off!

In OT today he played with cheetos. Well that was the plan. He did touch them a time or two!! At home however I got him to let me put it in his mouth. He still wasn't crazy about it and also made me put it down quickly. He wouldn't even touch it to throw it off the highchair. He made my hand go off the tray and then he shook my hand so I'd drop it. So funny. I bet there aren't many 2 year olds who won't jump at a cheeto!!

Stay tuned for tomorrow. Will this be day 4 for us or will our world turn smoothly tomorrow?! Aren't you just hanging onto the edge of your seat!!!

1 comment:

Christy said...: you know, Luke does that all the time; just being up until odd hours. He's not fussy, just up!

Hugs to you!; March 3, 2010 at 5:16 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!