Celebrating Inchstones: 1 week down, 35 more to go!

Tuesday, August 14, 2012

1 week down, 35 more to go!

One down and 35 more to go! Ha, I just realized as I proof read, the title could be pregnancy related too! Don't panic! I'm NOT pregnant! I'm talking about school!

Asa really likes school. He's eager to go in the mornings and may have a slight hesitation at the classroom but I don't think he's cried at all.....at least not at drop off! Nap time is another matter! I had planned on picking him up before nap, but he'll have therapy 2 days and I can really use the extra time he's at school for Cade and Gracie so I've been leaving him for nap time. The first day was awful, I'm told. He screamed and cried until he got sick. The second day was much like the first. I think it has gotten gradually better and today he didn't cry as badly and he stayed on his mat more. His teacher said at very end of the hour he actually laid on his back and played and giggled! Yay! His therapy should start next week. I'm excited because he's made tons of improvements over the summer! Of course, he started walking but he also has been more vocal and even trying to mimic sounds and words. I'll have to video some and post.

It's also been a full week of using the K12 program and homeschooling Gracie and Cade. I really, really like having them here. I think we are all getting adjusted to the program too. Cade likes to work on his own and gets to pick which order he does lessons. Gracie's work requires me to stay pretty close to her side. The last 2 days have gone much better than the first day last week! We have a Back 2 School Bash Friday and I'm looking forward to getting some tips from seasoned parents and the K12 teachers.

Cade says he loves homeschooling. Gracie had been begging to homeschool for years and is not so sure about it now! She said yesterday that she just doesn't like any kind of school! And that I can believe! I think she's about decided if school is school then she'd rather have lunch and PE with her friends than Cade and I! :)

A huge, huge, huge positive to our homeschool is that Cade and Gracie are getting along so much better than just a few weeks ago!!! They have played and created PE games and even did their own literature reading while sharing the recliner.....well until rough housing got involved and Gracie ended up on the floor and Cade was hanging off the side but both were laughing their heads off! All good fun! Our afternoons are peaceful too. We've come upstairs to the school room to work on some extra stuff a few times but it hasn't been like normal homework. If Asa needs more attention then we can just finish the work first thing the next day. I keep telling people that it's only been a week and I'm sure we are still in the honeymoon phase, but I really like our new schooling! If something changes we'll just adapt though. We've gotten pretty good at adapting over the years!!!

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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!