Celebrating Inchstones: October 2012

Monday, October 22, 2012

Donnell Farms

Last week, Asa's whole school took a field trip to a local farm. I went and Cade and Gracie got to go too. Cade was the best big brother and a huge helper! I wish I'd gotten more pics but I was too busy enjoying it all. Asa had a great time and managed very well. It was very windy but the temps were perfect. I was going to try letting him ride the bus but chickened out. He is handling sensory issues much better but I was afraid if he got tired and we had to ride back it might be asking too much! Maybe next field trip!

Check out Asa's finger going for Cade's ear! It's like a jab into your eardrum at random times everyday! Good times!

This is Asa's new laughing face, tongue to the side! He was cracking up at the kids jumping off the hay bales.

Such a good big brother! There were many examples of this big brother love!

And who doesn't love a corn box?!!! And Gracie's hair wasn't that poofy, it was so windy!

Asa loves, loves, loves the corn!

I'm so proud that Asa had a great time and that his whole school got to take 4 busses of 4 year olds out to the farm! It was a great day!

Tuesday, October 16, 2012

Up for a Laugh?

Asa didn't go to school today. He was gagging and pukey last night and woke up the same way. He was ok but it can't be fun to be so nauseated and pukey away from home....or anywhere really!

So, he spent the day in our school room with Gracie and Cade today. Gracie and I had our backs to Asa and were deeeeep in studying but I was aware Asa was letting out the big, loud belly laughs. I finally turned around and saw what was tickling him so. He would scoot around collecting card from the Pictureka game and bring them back to the fan that was sitting in the floor. I know, I know, he could loose a finger but he loooovvees the fan and I've watched and he's fairly safe, mostly I'm sure!

Anyway, he'd take the cards back to the fan and drop them on top so they'd blow around! He laughed so hard. Of course, as soon as I started video and he knew he was being watched he calmed a little! I love his laugh and wish I could make it my alarm and ring tone on my phone!!

Tomorrow, Asa's class is taking a field trip to a farm and pumpkin patch. We were gonna attempt the bus but I've chickened out. I think the farm will be enough of a new thing that the bus should wait. Maybe we can try it on the way back from the farm. At least if it doesn't go well the whole day won't be ruined!

Sunday, October 7, 2012

Party Post

Today was Asa's 5th birthday and his party!!

Asa was gifted a Dream Cake from Icing Smiles, an organization that finds local bakers to make amazing cakes. Our first bakery backed out just a few weeks ago. Thankfully, HaliHannigan's Cupcakery came thru and made ads an amazing cake that tasted even better than it looked!

This is Asa showing you he is 5 today! Yes, I know he is holding up 10 fingers but he means 5!!!

We painted some of Asa's supply boxes into huge building blocks. The big kids liked these more than the little guys!

I also found a big blow up bowling game!

I'm so thankful to have this little guy!

Thursday, October 4, 2012

Birthday Time!!!

For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret,
intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. How precious to me are your thoughts, O God! How vast is the sum of them! (Psalm 139:13-17 ESV)

Asa's 5th birthday is Sunday! A birthday is a time when we look back and remember and look forward with hope. That's not always pleasant in our situation. I don't found memories of holding and snuggling with Asa in the hospital. He was in the NICU and I went home alone. His first year was hard! There was grieving, sadness and I was bitter for a while.

Then I really soaked in these verses. I mean, SOAKED in! Let them go into my bones, drenching every ounce of me! Asa is no surprise to God! We sat in shock and tears realizing something wasn't right with our boy, but God just smiled and said "he is perfect"! How can I argue with the Creator!!!!

Each new development will be the same. Whether Asa is walking or not. If he starts talking or not. If he eats or doesn't eat. If we endure heartache, God is in control! He's got this! Asa's future is written and I trust the Aurthor and Designer!

We will celebrate Asa's blessed 5 years on this earth on Sunday from 1-3pm at our church. Asa's been gifted a Dream Cake by Icing Smiles and I'm sure it'll be amazing! There will be plenty! If anyone local wants to join us, please come! We've had so many praying for us all and you deserve to celebrate and be in awe of God's perfect creation too! If you need directions just send me an email or comment but I'd just soon not advertise it for the WHOLE world to see! Lol

And just so you are warned, Asa may completely freak out and want no part in a party so he may watch from a distance. Or he may jump right in and attack the party! I'm hoping he'll have a blast but I'm ready to roll with him needing a break too! So come celebrate with us!

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!