Celebrating Inchstones: Our Village

Saturday, March 12, 2011

Our Village

There is very little that I'd agree with Hillary Clinton on, in fact, this statement may be the only thing, but I could not agree more with her statement that it takes a village to raise kids!! And having a special needs kids REALLY takes a village! And my village was busy this weekend!!

Barry, Anna and I went out of town this weekend with our church youth group. Every year there is a big weekend of worship and learning and serving our God. I went as a teen but it is different going as an adult! I know many of the kids do appreciate the message but sometimes it seems like such a slow process! If they'd just listen to us wise adults then they could save themselves a lot of trouble!

This year it wouldn't have been possible for all three of us to go if our family didn't have an awesome village surrounding us!! We really needed Barry to go as a van driver and Barry wouldn't want to go without me. Anna however didn't want either of us to go.....but really she didn't care, she just couldn't admit it! LOL! But if all of us left, then who would take care of the 3 little ones? Who would run Cade to his first baseball practices of the season? Who would help with Gracie and her first softball practice of the year? That's where our village comes in!!

On active duty this weekend was my mom and dad. Moma didn't work on Friday so she could be here and keep Asa on since we left before noon. She took my directions on Asa's feeding and med schedule. She got Cade and Gracie off the bus and did all the cooking, cleaning and washing for the weekend. I know most all grandmothers babysit for their grand kids but I wouldn't normally ask Moma to keep the 3 smaller ones at one time! And let's face it, Asa is more difficult than most kids! Just keeping him can be a chore not to mention Gracie and Cade with their squabbles, feedings, messes and schedules! What a blessing to have my parents right next door!! Thank you Moma and Daddy for keeping them all this weekend!

And then there was Cade's first baseball practices of the season. He had practice on Friday and Saturday. Since Asa is usually less than fond of the ball field, it can complicate things like ball practices and games! I am hopeful that Asa will have more fun at the ball field this year since his sensory issues have mellowed out some! What I trade off in sensory stuff may be made up for in Asa's new "go" attitude! Still, I didn't want to have to test my theory with my mom! That's when my village expanded to Robin!! She has twin boys the same age as Cade and the boys have been in school and on ball teams together since Kindergarten! Her hubby happens to be the boys ball coach but this doesn't mean it was easy to add Cade to her schedule. Her dear hubby was working so not only was she playing single mom to her boys and little girl Jude, she gladly added Cade to her schedule for both practices! And not that a 10 year old boy is all that much trouble but some days just another person can throw the balance off! I hope that didn't happen this weekend! :)

I'll tell you another thing about Robin..... Her boys have a birthday right before Cade. When Asa was 4 months old and in the hospital for 7 days, it was the week before Cade's 7th birthday! We got home on a Friday evening and had a party the next day. The way I recall things, Robin had a skating party scheduled and let us bum onto her boy's party! They shared school friends and we both invited some family and had separate cakes but without her help who knows what kind of birthday Cade would have had! I know she'll love me tooting her horn about all of this but sometimes horns need to be tooted!!! Thank you Robin for being such a kind and caring friend!

And then that just left Gracie! She really wasn't all that thrilled that I signed her up for softball anyway, but then we were going to miss her first practice too. I was afraid she'd be mad and really not want to play! Shockingly, Gracie can be a little rotten and dramatic (must get that from her daddy)! Our neighbor and friend, Christi, was going to take her to practice but Gracie decided that she wanted Dee Dee to take her....insert the rotten here! Soooo, my mom took Asa and Gracie to practice! When Asa wasn't having such a great time and my mom took him home, Christi brought Gracie home! Again, hopefully my girl wasn't any trouble but I just hate to intrude on other folks schedules. Thank you Christi for taking care of Gracie at practice and bringing her home! Both the kids have really awesome families on their teams!!

We are so blessed to have great friends and family! And these are only the handful of villagers who help out in our village! Our village is full of people who will pick kids up, drop kids off, take charge of things, babysit anytime, etc! This just happened to be a busy, crazy weekend! But the point is that we are surrounded by people who make these times less crazy and busy. I honestly had no worries that the kids would be happy and taken care of while we were gone! And if you think that I'm a bit dramatic to make such a big deal out of a 2 day trip then you don't realize that I'm a control freak who wants to know the who, what, how and when of every day! I like to have a well defined plan, not just run off for a trip while my kids are scattered and shuttled around. But with such a great village I know that I'm covered, the kids are great and everyone can have fun!

So thank you to our village, those on duty this weekend, those on duty for our Houston trip in 2 weeks and those who are standing ready! It takes a village and ours is top of the line!!!

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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!