Celebrating Inchstones: Cell phone pics

Saturday, April 28, 2012

Cell phone pics

Anna FINALLY got her drivers permit! I couldn't resist acting like it was a monumental event since we had to go to the DMV 4 times before all was said and done! She failed twice and then when she passed her school form had expired so we had to make a return trip with the proper papers. Whew, it's done though and now for the training!

Cade eats green bell peppers like apples! Now I love them too but not by the mouth full! P.S. I told him I wouldn't put this on FB so nobody tell him it's on the blog! Lol

Asa got sick in the car on the way to Aquatherapy Thursday. I cancelled since puking in the pool is frowned upon by the 20 or so other people in the pool! Instead we went to Target to get his reflux meds refilled in the hopes that being off of them for the last 2 days was why he turned into a human geyser. So much for a trial wean, I thought. We got the meds and cleaned off his braces and crocs in the bathroom (yay for washable shoes! They've been puked on and washed 3 times in the last week!). Then we picked out a new school polo and khaki shorts and were headed to the checkout when round 2 started! I guess I should be proud that he has gained some control and he kept in some stomach contents in from the episode in the van earlier but having the other 1/2 come up in the electronics row at Target was no fun either. I put the clothes back up and we went to the van. I had already stripped down the carseat so I stripped Asa down and we headed home.

And FYI, that's why you should carry Lysol wipes for the buggies! I cleaned our buggy as good as I could but I'm sure I missed some of those nooks and crannies! Do you think they ever give them all a good washing down in scalding water.....like the lunch tray washer at schools? They should!

By the time we got home he had a 102 degree fever. I plugged a drain bag in and gave Motrin. He was puny looking and was ready to take him in after a nap. Instead, he just rested a while and then popped up like he was fine! My mom retired and they had her and some others a party. We picked Anna up from school and headed over there for the last 10 minutes. It was a nice gathering but we missed most of it. Asa did have 2 cups of punch so we ran away before that decided to make a reappearance. It never did though so I gave him a cup of formula and then some peanut butter and crackers.

I kept him home from school Friday because he looked tired and while he'd had no episodes I was a little wary! No need to share any germs! Good thing too because I thought it was a random bug but this morning he has a few bumps on his nose and hands so I'm guessing the Hand, Foot Mouth that was going around finally found him. We knew he'd been exposed on Saturday but when he had no symptoms by Wednesday we thought he was in the clear. That was a loooong incubation period! He did feel well enough to get a haircut though. In fact, this was the first haircut that wasn't a huge ordeal. Probably because we did it outside! I told him I needed to get around his ears and he turned around and laid down like this on his own! How smart is that?!?!

Is this eye issue something I need to check into? He saw an ophthalmologist last spring but I'm not sure he knew what he was doing. He just assumed Asa was blind and seemed stunned when Asa could see. It was odd.

Still a pretty awesome little guy!

Oh and no pic but Asa just crawled a few shuffles! Barry had seen him do it but Asa wouldn't do it for me. Barry told him to show me so Asa leaned forward and shuffled a little! Such a stinker!!!!

1 comment:

Roxy said...: Oh my Kim, how your children are growing up! I can remember you getting your permit!!

Congrats Anna!! And as for having to re-take the test, that thing is hard! I just hope I don't ever have to take it again :); April 28, 2012 at 12:45 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!