Celebrating Inchstones: Starry Nights!

Saturday, December 4, 2010

Starry Nights!

We just got home from the most fun night!! We went to look at Christmas lights!!! What, that doesn't sound thrilling to you?! Tonight we drove an hour each way to see the Starry Night Christmas display at Shelby Farms in Memphis. Does that sound like a lot of driving for a few lights?! Well it is but it was worth it!

With Asa there are alot of traditions that we just can't or won't do. We've tried the Santa photo his first 2 holidays but it didn't go well at all! But in all of the "can'ts" we seem to have stumbled onto a big "can"!

A couple of years ago I had a big plan to go look at Christmas lights. We drove through McDs to get yummy hot chocolate and set out. During this time Asa was still not in a good place. We hadn't figured out his GI issues. We didn't know his sensory issues were so deep. We didn't have good supplements. All that to say that instead of a happy, fun family night of Christmas lights, we ended up with hot chocolate that was too hot, Gracie went to sleep and poured her hot chocolate all over her and Asa screamed bloody murder from tummy pain the whole time! That's how I remember the night! So it was a shock to me when the next year the kids couldn't wait to get hot chocolate and look at Christmas lights! Seriously, they wanted to do THAT again! But we did and it was fine! It was fun! It was great!!! So our new tradition was born!

Asa loves lights! Last year we found a house near us who sets up a huge display and even has a radio station you tap into so the lights are synchronized with the music. They have Santa dressed up and encourage you to get out and wander around their wonderland. They accept donations for their church's youth mission trip. Talk about a win-win! Asa squealled and loved those lights last year. I can't wait to go back this year!

When Anna was little Shelby Farms did a huge drive thru display that we went to for 2 or 3 years. Then they cancelled it. It was brought back this year after a 10 year absence! I was excited to try our new tradition with an old experience! And it didn't disappoint! The lights were great! The music...not so much! I'm glad we had our CDs! Asa squealled and laughed! The big kids liked it too! They may have enjoyed driving thru McDs and a road trip just as much but whatever!! We had a great family night and saw some great lights!

It didn't go perfectly though! When does everything go perfectly
though! We had to stop by a Walmart because Cade had a few bucks to
his name and it was burning a hole in his pocket!! When Cade, Anna and
I got back to the van, Barry and Gracie were changing Asa's dirty
diaper! He got his pants and shirt both dirty!!! What are the chances
that his 2 a day dose of Miralax would kick in just as we start a road
trip! You really just have to laugh about it! And it was fine since
our whole trip was in the van! And the memories and laughs just keep
on coming!!!

So......

4 hours in the van,
$20 on supper at McDs
$6 on hot chocolates
$20 for Starry Night ticket
$20 in gas
Time of laughing, singing and memories with the family.....PRICELESS!

2 comments:

gg said...: I agree....PRICELESS!!; December 4, 2010 at 11:53 PM
Anonymous said...: We love Starry Nights! I'm glad that you all got to enjoy it.; December 5, 2010 at 8:11 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!