Celebrating Inchstones: And so it begins!

Friday, May 14, 2010

And so it begins!

Asa and I had a big morning today. Well, it was a biggie for me, Asa seemed clueless! We had a meeting here at home with his early intervention coordinator, his home teacher and a psychologist from the school system!!!

It went pretty well. I got some good info and ideas to think about as we speed towards October and his transition into the school system. Our system is doing some reorganizing and they are considering changing from a half day program to a full day program. And a whole school will be devoted to 3 and 4 year olds, special needs and typical programs. I also found out he'll wear a uniform like the big kids! So I'll be clearance shopping for tiny white polos and khakis!

Maybe I need to back up and explain that right now Asa's therapy is funded by Tennessee Early Intervention. I love all of our people in this group! They work with babies, birth to 3, and then the kids transition to the school system at 3 to get the therapy they need. Insurance only has limited therapy coverage and you'd be surprised to learn we used up Asa's insurance PT before March this year! So in order for Asa to get therapy he'll have to start school in October when he turns 3!!

I have so many mixed feelings about school! Asa really doesn't like other kids too much. His sensory issues make fun, exciting environments scary and overwhelming. I think school will be great if he can be in a smaller class where they can monitor how he is handling things to avoid a huge crash and reboot! I'm also wary of the therapy at school. School therapy is educational therapy. They have to get him ready to learn. They will work on him being able to sit in the chair in his classroom but not really be too concerned about him being able to climb the jungle gym. I'm not sure this will be a big deal in Asa's situation right now, but I know some families have to really fight to get services covered at school. Some school systems are just so poorly funded that there isn't staff or resources to really push for the kids. I never got that vibe today at all but I feel I'll need to be on my toes and ready to advocate if things go that way. I'm not confrontational at all so I think I'd have a hard time doing this. Like I said though, I never got that vibe today. I was so pleased with the meeting!

In August, Asa and I will go to the school and kinda browse around. Then in September we will have another meeting with the teachers and therapist from the school to set goals and make a plan (IEP) for Asa. Right now I kinda depend on Asa's therapist to set the goals. I offer input but I feel like they are the professionals so I listen to them mostly. With the IEP, I'll be offering much more insight and ideas so this makes me nervous. What if I leave something out or make a big deal about nothing. BUT, I'll study up and tackle that issue closer to the date. No need to waste a worry on it now!

I also worry about the full day schedule. I can't even imagine how that will work for Asa. Especially 5 days a week! I have tried to picture it and just can't see it!!! Full days would be great for me though! Think of all the free time I'd have! I already asked about volunteering and they do have a PTO type organization. I'm giving my treasure position at Denmark this year so maybe that will open some volunteer time up for me. Or maybe I'll just take a seat in the corner for a while.

And ya'll know how much I hate change! I love, love, love all of Asa's therapist now! I can't even imagine a better team! I just love the happy, friendly vibe of the therapy center, even the therapist who don't see Asa are soooo nice! I don't want to leave this environment for a drop him off at school thing where I don't know what is going on! That makes me sound like a controlling parent doesn't it?! A helicopter mom! I don't think I am but maybe I am and just don't see it! I just really, really like being in the know! I don't have to run the show, I just want to be invited! What is so bad about that?!

I will, however, be so glad when Cade and Gracie get out of school this year! The last two weeks have been full of field days and picnics and water day. I don't know how our PTO president and vice president managed these last 2 weeks!! And I was really no help! I volunteered so much before Asa but now I just can't. He isn't the kind of kid you just drag around with you. Instead you bend to him! In that way I am looking forward to him starting school. Maybe I can do the field trips and fun days and lunches again. I really do get heartbroken to have to miss these days. It is so much fun and a lot of work, but mostly fun!

Tomorrow Cade has ball pictures at 8am and a game at 9am. Then Gracie has pictures at 9 and a game at 10! Cade will have another game at some point that day we just aren't sure of the time. And Barry's family is having a reunion at lunch. I think our weekends are busier than the week! Maybe we should reverse it all and only go to work and school on the weekends and have the whole week to play! I like that idea better!! :)

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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!