Celebrating Inchstones: Fun Snow Day!

Monday, January 10, 2011

Fun Snow Day!

We live in the south. West Tennessee to be more specific. We see a few snows a year here and it is always an exciting event! The weather people give us a few days notice so we can all rush out and get our milk and bread from the grocery store. Heaven forbid any of us try to drive in the cold white stuff! And with this snow the state and city workers began salting the roads 4 or 5 days BEFORE the predicted event! Just to be prepared, you know! And of course when the kids hear the first utterings of the "S" word they start getting ready to be home on a snow day! In previous years we've called off churches, schools, social events, most everything at just the mere mention of snow. The last few years it seems the school superintendant likes to play with the minds of the kids and parents and we have to wait until 3am to get the automated call saying school is cancelled because of the 3" of snow on the ground. Granted if she cancelled school and the snow missed us we'd all complain too! That is a thankless job that I wouldn't want!

So this snow was the first real snow of the winter! We got at least 4" here. We went to bed with flakes beginning to fall and woke up this morning to our winter wonderland! Even Barry was home today! Cade and Barry headed out before 8 am to ride 4 wheelers. Gracie woke up shorty after that and stumbled into her coveralls, boots and helmet to join in. I don't even think she was fully awake until the cold air hit her face when she went out the front door!

By 11am we all bundled up and headed out! Asa too!!! We went to a hill behind the house to try out the new sleds my mom got the kids for Christmas. We took Barry's truck so Asa could stay warm when he wasn't playing. It worked out perfectly! The sledding didn't go so well for the big kids but Asa had a great time! I had gotten an inflatable boat on clearance years ago. Don't ask me why I bought a boat but it came in handy for this snow! It was the perfect size for Asa. It pulled easily up and down the hill. It may have given out being towed behind the 4 wheeler! Not with Asa in it but Anna and Gracie!!

Asa was so bundled up that he could hardly move! He tried to clap or sign "more" and couldn't get his hands to touch! So funny!! It was hard to tell if he was having a blast and kicking in joy or kicking in frustration. Turns out he was having a blast!! I tried to leave him in the truck with Anna while I pulled Cade and he pitched a fit! He wanted to ride!!! We played for nearly an hour when Asa and I called it a day and headed home. Even at home, Asa sat on the front porch just grunting and pointing! He was a happy guy. I'm so happy we could have a good, fun, family time and make some sweet memories! The kids are out of school tomorrow but Barry is back to work. I'm thinking we'll take it easy tomorrow.....unless I'm out voted! Here are a few pics:

The warming and snack station! I took hot chocolate and treats so we could refuel for more playing!

Barry and Asa! Boy, I was glad to have Barry home today!

Could a girl even be anymore covered in snow? You can't tell so well but she had frozen snow caked in her hair! And she was soaked! But look at that grin, she was HAPPY!

Cade's Christmas present came in handy! I liked it so much I'm asking Santa for one next year!

2 comments:

Anonymous said...: What a wonderful family day! I like to think that snow days are a gift from the Lord where life in general stops, and the schedule is free to be together and make memories!!!Glad it was a great day for your family. And thank you for your Sun. "deep thoughts" post! Love to all, Mrs. Margaret; January 10, 2011 at 10:33 PM
Michelle and Sean said...: Looks like a lot of fun!!

I hate the snow but I also live where its really snowy. I wonder if I would like it if I didn't live with it frequently. I will probably never know!!

Enjoy the snow days!! I can't believe school stops for snow!! Crazy!; January 11, 2011 at 1:07 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!