Celebrating Inchstones: Not our normal Monday!

Monday, March 1, 2010

Not our normal Monday!

Usually, Mondays are pretty slow around here. There is no therapy. There are no appointments. Usually, Barry goes to work and the kids go to school. Then Asa and I have a quiet day to ourselves. I have to confess that it is hard to go from caring for 1 non-verbal child to a weekend full of chatty, busy kids and hubby. In truth, Asa is much more manageable than the whole brood of them! Usually, Mondays are pretty easy!

Usually!

Today, however, was different. Asa was up when I got up. Anna had gotten him up before I got out of bed. It is always dangerous to let him get a jump start on you! He was kinda a mess but we managed to get everyone out the door and off to school. I even remembered Gracie's lunch money....but forgot the picture money! Anyway, my morning routine was way off today. Thankfully, Asa went down for a morning nap and I found a nice peaceful late morning.

During this time I made phone calls. One call was for Cade an eye exam! Turns out it has been 1 1/2 years since he had his eyes checked. He was having headaches and complaining things were fuzzy. The doctor could get us in today at 1pm. So after Asa's nap we hopped in the van and made the pick up rounds and went to the eye appt.

Cade has talked about contacts for a while. I was hesitant but the doctor was actually on board. So after his exam (he went from needing a +2 to +3!!) they put in a set of contacts. It all seemed fine. Cade was beaming ear to ear! He looked pretty darn handsome too!

Then they showed us to an area and Cade had to take one out and get it back in!!! Oh, dear! He got it out with little trouble. But back in was another story!!!! He tried, I tried, we tried together! It took a good 30 mins and some sore eyes but it was back in!! The staff was unfazed by our struggle and happily took my money and kicked us out with instructions to come back in a week. I was hoping they'd pity my struggle and forbid him to leave with them, but NO! An elderly couple from the waiting room was encouraging him and when we left a younger guy was giving him some tips! I wanted to scream "this isn't a gooooood idea" but I kept my mouth shut and we'll give it a week (or a day, at least!).

Cade was a happy little clam. We (I) took them out early this evening and we (I) put some eye drops in his eyes to help calm those red eyes down. He wanted to know why he couldn't just leave them in all the time! HA! His tune is changing but I think he'll be fine once we (I) get a routine going!

Asa, Anna and Gracie were so good during this whole eye doctor process. Superstars, I tell ya!!! We were there a loooong time!

Between those contacts and putting a Nerf gun together, my nerves were shot. This isn't how my Monday is supposed to go!! Maybe Tuesday will be slower!! :)

Oh and Asa ate a cheerio off the floor!!! Yes, I'm bragging about it!! He scooted over to it, picked it up and put it in his mouth!!! Oh, and of course we only put it on the floor as a test for him. It certainly wasn't left over from this morning when he threw it off his highchair!!!

And during the whole eye exam and contact lesson, I was wishing I had my camera so I could take pictures and document for the blog!!! There is a problem when you see a blog post in life!! Still the pictures would have been awesome!!

3 comments:

Christina said...: Haha!! That is so funny that you mention seeing a blog post in life because I do it all the time!; March 1, 2010 at 8:24 PM
Debbie said...: I love all the "inch-stones" so super-cool!
I too know about the relating life to posts....something happens, and I think the next post has written itself in that moment!!!!

p.s. he is such a cutie...and he puts a smile on my face!; March 1, 2010 at 9:25 PM
Kim and Asa said...: Debbie, what happened to you at the Y was definitely post worthy!! It is amazing when God puts people in our path! Thank you for sharing!!

Kim; March 1, 2010 at 9:38 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!