Celebrating Inchstones: Boring....

Thursday, March 4, 2010

Boring....

I feel so boring with these posts!

Asa had PT, no huge breakthrough but good. I still wait for that one therapy where he suddenly gets into sitting on his own or pulls up to stand. Not today though.

Then speech/feeding. Need we say more. He has no speech and doesn't eat. And lest you get the wrong idea, it isn't the therapist! They are wonderful!! It is this puzzle of Asa. His original SLP went on maternity leave and is due back next week. Our "sub" has been equally wonderful. She gave Asa a goodie bag today and I'm excited to see him get into the treats!! She also gave him some choc. cheerios! Does she know the way into his heart or what?!

Then I drove through and got me lunch. I was so tickled that Asa let me, no he wanted me to, feed him pieces of fries! And you have to wash fries down with dips of Dr. Pepper. I promise he didn't have much of either. Yet, 10 mins after the fry, Dr. Pepper, applesauce, Pedisure mix.....he puked! No, he explosively puked!! In the car seat! I got stopped and hooked a drain bag up ASAP but the damage was done! Not a fun cleanup!!

BUT, his spare outfit was a "Life Is Good" outfit with a sippy cup on it. It said "Half Full"!! God's little message to me?!?!

Went to the pharmacy. Ins. still denies Nexium. Should I send the puke bag dangling from the chair?!

After school, took the kids to Skate night for the school. Dropped them off and bought groceries since Sir Pukes-a-lot interrupted those plans today. Oh, Barry kept Asa tonight....he didn't go to the skating rink!

And at some point, before 10am tomorrow, I have to clean out the van and pack for YEC with our youth group!! Fun 2 days!!! Really, I'm looking forward to it!!

During that time I'm leaving it all in the very capable hands of Barry, Judy, and my mom!! Nothing to worry about at all!

Oh, and if you want an email notice that a posted is in, please leave your email address in the comment section or for more privacy, email it to me. I can add you to the email list. kawilson95@hotmail.com

Thanks for checking in on our boring life!!

4 comments:

Christina said...: Kim,

I think your life is anything but boring! Haha!!! I hope you have a wonderful time this weekend and come home feeling refreshed.; March 5, 2010 at 8:54 AM
Heidi said...: lol...is it ok that reading this made me smile?! sorry about all the puke, and your van.

I was just thinking about my life lastnight... after helping all the kids with their (often too difficult for me ) homework, making lunches, Jacks feed for school, then while I was mixing his "cocktail"...I found myself in a stare as I let the water fill up the clogged kitchen sink...is this it? day in, day out...im in need of a real break here! pathetic.

So I disagree, nothing but boring but I totally get you girl! Sending you some real hugs and hoping the 2-day trip helps! LOVE and hugs to those beautful babies of yours-
Heidi & Jack.; March 5, 2010 at 2:01 PM
Anonymous said...: Kim,
Sounds like to me that God is still in control. He has provided this getaway with older children and will providing a good spiritual uplift! Always remember, you have many people praying for you and your family, especially Asa. Keep your chin up!
Love ya,
Roxy; March 5, 2010 at 3:14 PM
gg said...: Sometimes boring is good : ); March 5, 2010 at 8:01 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!