Celebrating Inchstones: Today was a doozy!

Wednesday, March 31, 2010

Today was a doozy!

I let Asa sleep in this morning! I assumed he needed the extra rest. He had a big day on Tuesday and woke some during the night. So I let Asa sleep in this morning! Not gonna do that again! How many times have I said that?! I'll learn one day!

Sleeping in threw his feeds off. Because his feeds were off, his meds were off. These things aren't good to be off! Maybe he would have had an off day anyway but I feel responsible for it since I let things go.

We just don't have the luxury of getting up whenever we want to. Or eating whenever we want to. We need a routine, a schedule! Sure we have a little leeway but it is much smaller than I originally thought!

I keep thinking about school. I know, it is 6 months away but so many little ones have started recently that I can't help but wonder. What will happen if their schedule doesn't work with Asa's schedule? Asa's will have to change, I get that but it isn't as it seems!

And speaking of schedules, April is another GO month for appointments! We have 2 at Vandy next Friday and a hearing test on the 21st. We had a GI appt but I got a letter today saying that it had been moved to May and it was with a new doctor! Our GI is leaving Vandy. And they are closing the clinic they came to here at home! So now we get a new GI and have to travel again. I really, really loved that our GI came here once a month. Oh, well! Gotta roll with the changes!

It wasn't a total loss today though! Asa started riding his little car his OT let him use! He knew how to push the button and make it go but when he did this there was a jerk and noise and a lurch. He wasn't crazy about this. He'd do it once and then when I'd say "push the button" he'd just tap the button, not really wanting to push it.

Today I put him away from the back door, which he LOVES, and he had to push the button and make the car drive to the door! He did this 2 times!! If he'd get used to the jump and noise, he'd really love the freedom this Power Wheel gives him!! He could ride without anyone bugging him!!

Oh and he did some walking with me only holding him with the Walking Wings! This really makes him work on his own! Lots of hard work!!

Tomorrow he'll be up and on the pump at 8am SHARP!! Trust me!!

1 comment:

Christy said...: I know how you feel about sending them off to school in 6 months..I do worry about all the medical issues and schedules, and things that are unique to Luke; plus I have always homeschooled and now I will be sending my baby off to school...wow, it's alot to take in!

Love that he likes his riding toy...sounds way cool.

What are walking wings? Never heard of those.

Hugs to all!!; April 1, 2010 at 10:28 AM

Post a Comment

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!