Celebrating Inchstones: Just a "normal" Saturday

Saturday, March 5, 2011

Just a "normal" Saturday

Today we decided to do what tons of other families do on Saturdays. We got up and got dressed and headed to town for some shopping and eating. Cade had birthday money to spend and there was errands we needed to take care of. So off we went.

Asa was screaming and gagging when we left but I hoped that he just needed to get out of the house. Most of the time he can tell when we are getting ready to leave and he starts screaming like he is gonna get left. Unfortunately, all the crying made him sick an he ended up puking all over himself and the carseat before we even got to our first stop! Barry was ready to just turn around and come home but I said I had extra clothes so they could go spend Cade's gift card while I changed Asa. The only problem was that I used the spare pants another time and all I had was a spare shirt. So they all got back in the car, we went across the street and I went in alone to buy Asa pants, which by the way were all replaced with shorts and t-shirts so I had to dig through the clearance! Anyway, I got back to the van and Barry said he'd pooped and gotten it on his socks! Thankfully I had spare socks! So now Asa was decked out in his spare sock (too little), spare shirt (slightly stained) and new pants (too big but if I'm gonna pay $2.30 for pants they are gonna last next year too!). Off we go for Cade's shopping spree part 2!

We headed to Best Buy where I told Barry and the other kids to get lost so I could try the iPad and the Proloquo2go AAC app with Asa! Seriously the highlight of my day....or so I thought at the time! This is a communication app and Best Buy has a trial version on the iPad you can play with at the store. So I tried it out with Asa and he liked to hit the little pencil in the bottom corner that sent it into the "edit" mode, over and over and over! Picture me slapping my forehead! At some point him to push "please" and after he heard the word, he signed it! So cute!!! A salesperson came up and started talking to us. I helped Asa say "hi" and "good morning". The salesman left! hehehe! Overall Asa just liked tapping away. He would wave when I helped him tap "bye bye" so he really gets it but he'd need lots of help with it! I'm keeping my eyes out for a great deal on an iPad. And I mean a reeeaaally good deal! Like a marked down, refurbished one! I'm in no hurry though, maybe by the time iPad3 comes out I'll find my deal!

After Best Buy we went out for pizza. Barry sat beside the ice machine. Does that need further explanation?! I'm kidding, he picked the best available table and the ice machine wasn't too back but Asa would just and cry out when someone got ice. It didn't matter much though because there was a birthday party of 10 year old girls. Does that need further explanation?! Let's just Asa's squeal sounded a lot like those girls squeals! As we were leaving Barry put Asa in one of those coin operated cars. Asa sat and spun the steering wheel. For some crazy reason I decided to put in the coins and make it go. Maybe I was thinking we had met our mess quota for the day so he wouldn't get sick, I don't know but I put the money in! And Asa loved it!!! He was laughing and happy. It was so funny!! I'm trying to load the video now but don't hold your breath!

It is our pizza adventure that turned out to be the highlight of my day! When we pulled in I took a handicap place. Asa has a handicap placard. It was cool, windy, raining and since he was already super sensitive we parked and Barry ran in with Asa while the rest of us unloaded. When we pulled in there was a GMC Yukon parked in the lined space beside the handicap parking space. Now since we don't use a lift this was not a huge deal for us. Rude, sure but not a huge deal. But when the same truck was still sitting there after we came out of the pizza place, an hour later, and he was still there I was grumbling and mad. There is a movie theater nearby and we thought he'd parked and walked to the movies. That mad me ill. As I walked around my van I noticed he had a personalized licence plate that said "4 God"! Really!!! Now I was very mad! Sooooo, I got a UMDF flyer that I keep in the van, wrote a nice little note on it pointing out his illegal parking, placed the note in a empty bag that the Farrell bags come in and left it all under his wiper!!! I'm usually the last person to stir up trouble but I was mad he had parked there for so long and then more angry when I saw the plate! Since the movie was letting out, we parked in another spot to see if the driver was coming out of the theater. By this time our kids were thinking Barry and I were crazy and Asa had eaten 2 Dum Dum suckers but Barry and I were waiting! Surprise to us when a man came out of the tanning salon in front of his truck, took the note off his truck, went into the nail salon next door, came out, went back to his truck and then back into the nail salon. I'm assuming it was the owner of the nail salon and tanning bed! Can you even imagine pulling up and parking in a space reserved for the handicap, smack dab in front of your business!!! Stupid!! We drove back through the parking lot on our way home and the truck was moved down a space or two. And I get that Asa's issues are pretty mild so I wasn't angry for myself for my friends who have to use a lift van or get a wheel chair right up to the vehicle. It is tough for me to get Asa out of our van and he is only 32 lbs and 3 years old. I do use those handicap spaces to make it easier for me so I don't have to carry him. I'm gonna be carrying him for a loooong time and my back already hurts! I can't imagine how some of my friends do it with bigger and older kids! So I felt like I took some power back by educating this dumbo on real disabilities and proper parking etiquette!

And it ended on a very high note! Cade had more bday money and wanted a BB gun. Gracie and Cade have both asked for one for a while but they haven't saved enough money. Today Cade got one and Gracie was very sad that she didn't have any money to get one. Her bday isn't until April so she still had quite a wait! Cade saw her so sad and told Barry that he wanted to buy one for her!!! He and Barry slipped away and bought it. When they came back Gracie asked why they had 2 guns. Cade told it was hers and she started hopping up and down and clapping. She even gave him a hug!!!! She is NOT a hugger but she was for him!! The second they got home they tried them out. Barry showed them what to do and he aimed and hit a flag pole we have in the yard. Cade took his gun aimed and hit the pole on his second shot. Gracie hit it my her 3rd or 4th! They spent the next 30 minutes outside hitting target cans and only came in because it was getting dark and we made them!!!

Even with all Asa's puke, poop and screaming, we had a great family day. It was just a "normal" family day for us!

1 comment:

~Jana~ said...: Glad you guys had a good day. Sounds like what a typical Saturday is for us too. Refreshing to heear it from somebody else. ;); March 6, 2011 at 12:07 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!