Celebrating Inchstones: Double Digits

Sunday, April 21, 2013

Double Digits

Our sweet, spunky, 3rd born, Gracie, turned 10 years old today! Double digits! She was pretty excited about it and had a party all planned since January! I let the date sneak up on me (did anyone else lose a whole week in April?) and didn't get invites sent out until the last minute! Thankfully, she has some good friends who showed up with last minute notice!

Check out my poor nephew, Jack, who was the only boy at the bowling party! He may not appreciate this at 10 years old but in a few short years he'll feel differently!

We retold the story of Gracie's birth. I remember when they brought her back to our room after her clean up in the nursery. Anna strongly favors me. Cade strongly favors Barry. Gracie never favored just either of us. After a few weeks and she still didn't have a "pop" of anyone stick out. I wondered if she might have been swapped in the hospital and even if she was would I want to know?! This was my "Pre-google" days or I'm sure I would've googled "home DNA testing"! I'm sure a lack of sleep and crazy hormones had nothing to do with my midnight creation of a Lifetime Movie of the Week in my head!

Fast forward 10 years and this girl is like my little clone in many ways! Anna may favor me more but Gracie acts just like me! Heaven help her daddy! She is soooo funny and makes me laugh all the time! She made me stop posting all her quick wit life insights on Facebook. I could probably start a fan page and make some money off her silly stuff!! She is so brave and tough! none of Asa's medical issues have made her bat an eye. And once, my nephew took a bad fall and was bleeding but she was right in there, blood and all! She is a tomboy and loves climbing trees, 4 wheeler riding and her jeans and tshirts. She also likes to play Barbies, sing along with One Direction and paint her fingernails. She loves soccer, basketball and softball. She loves to try new things and thinks she's the best at EVERYTHING she tries....she gets THAT from her daddy!

I have loved homeschooling her this year! There's a few parts of "school" she doesn't like at all but a lot of stuff she just eats up! It's a lot of fun working with her daily! Definitely one of the best decisions we've ever made! And even in the frustrating lessons, being together makes it completely worth it!

How precious are these two girls?!! She's 10 today but will be 16 in a blink of the eye!

Just so you don't think she's losing all her tomboy and turning into a girlie girl.....as we dropped off one friend after the party, they headed out to do some target practice shooting! Sweet girls!

As a bonus, Gracie got to go watch our Lady Vols play softball! She even got to get her glove and a ball signed by some of the players.

1 comment:

Anonymous said...: Happy 10 year old Birthday to Gracie! Can't believe it! Wow! Love all of "Gracie's Story!" Love, Mrs. Margaret; April 22, 2013 at 1:46 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!