Celebrating Inchstones: School, school and more school!

Friday, July 30, 2010

School, school and more school!

We had open house at Cade and Gracie's school last night. I'm so excited for both of them this year! Both classes seem great and I know both teachers. The whole school had a fun, busy, exciting vibe last night. It felt great to be sending them back!! They start again on Monday!!

And then today Asa had a graduation ceremony for Early Intervention. EI is the birth to three program here. Each state has a birth to three program and if you know of a little one who seems to be falling behind with their skills or just need peace of mind, you can get an evaluation for free. EI pays for Asa's therapy right now, after insurance. Asa has a home teacher who comes here to play with him each week too. I've been so happy with everything EI has done, we've had no problems at all. When Asa turns 3 in October he will no longer be covered under EI. That is why he will start school. Insurance doesn't pay for very much therapy at all so in October the school system will be in charge of Asa's therapy. He will go to school and get therapy there. He won't have his other therapist. The therapist who have been with him nearly his whole life! But that will be a post for another day...when I have more tissue!

So EI has a little ceremony for the kids who will turn 3 during the school year as well as those who go to the daycare they have. So Asa took a cap and gown picture a few weeks ago. He got a special graduation t-shirt. And this morning off we went to the ceremony. I was hesitant because this was just the situation he'd freak out about. But if he were to freak out then these were the people who'd understand the best! So off we went!

This is Asa trying to put on his graduation t-shirt. Obviously we need to work on his self dressing skills but he does love clothes!!!

Some kids from the daycare sang some songs. They had a little tap dance routine. There was lots of clapping and cheering. Asa was startled! But he didn't get sick!! He DID. NOT. GET. SICK!!! Maybe because I didn't feed him before we left and he had an empty tummy. I think though it was more due to the fact that he let all that excited energy out in other ways!

Have you ever held a frightened kitten? They claw and scratch and try to climb to the top of your head! That was Asa!!!! He would only stand in my lap, facing me. Each time there was clapping, he grabbed my ears, pulled my head into him and stepped all over me trying to climb onto my head! That is the only way I can describe it! He'd be fine, then there'd be clapping, then I was attacked! He yanked my glasses off 3 times and he has never taken my glasses off! Who knows what my hair looked like by the time his name was called. It was all really funny and I'd rather be climbed on than puked on any day!!!

Asa got his certificate and we got pictures with his therapists that were there. It was a fun morning.

And if each day was like this, I wouldn't be looking forward to school starting so much!

Gracie has been mothering Asa a lot lately. I did type "mothering" not "smothering" right?! There is a fine line with her! At least twice lately she has taken him to her room and tried to get him to take a nap. She has a whole system she goes through. It has never worked...until today!!! She laid him on her bottom bunk. She talked to him and rubbed him. She went and got a CD player and his bedtime CD. She sat it all up. And he went to sleep!! And then she covered him up. And then she switched blankets. And the she kissed him. And then we took pictures. Do you see were the smothering comes in yet! He did take a nap on her bed for about 20 minutes and then he rolled off the bed. YEP, off the bed. Head first. But don't worry he never hit the floor because his body was wedged between a little table and her bed! He dangled upside down for 10 seconds and he was fine! He never got sick!! I call that a pretty successful stressor filled day!!

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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!