Celebrating Inchstones: Report card day!!

Tuesday, January 18, 2011

Report card day!!

Asa got his very first report card today!! Now if you are picturing a single page, folded with 4 or 5 grades on it you are wrong!! He doesn't get A,B,C,D or Fs. He doesn't even get the "satisfactory" or "needs improvement" marks. Nope, Asa's report card is....different!

It is 11 pages long! It has been compiled by no less than 5 people! Most of it is broken down into 2 sections, annual goal status and objective status. So he is graded on the smaller objectives that make up the bigger goal. It is very detailed! His grades are numbers not grades. A 4 means the goal is met. A 5 means the goal hasn't been met but will likely be met. A 6 means it isn't likely the goal will be met by the end of the IEP. That's the big goals. He can also get a 1a,1b,1c,1d,1e,2a,2b,2c,2d,2e,3 or 4. Fun, right!!! :-)

And keeping in mind that Asa has only been working on this goals since October, you can imagine his scores were low. I could go through each one for you but it's 11 pages long! If you want details just ask. It was a little hard to see the numbers broken down so much and lots of low scores. Kinda like how I felt when Cade had a C in spelling!! I know, you read my blog and see my typos, how much should I expect! Lol!! But back to Asa, it wasn't fun seeing those low grades.

But then I read closer! I saw the notes the teachers wrote about Asa. Not the scores, not the numbers but what they thought of my baby! Things like, "We love having Asa at school!", "Asa's working hard!", "He's precious!", "We have fallen in love with Asa.", "I expect great things from him." and more about how he socializes with others in the school and how he has many friends outside the classroom! Seriously can you tell the tears well up in my eyes!!!

In only 2 months he may not be checking off his goals at super speed but he is being cared for and taught by people who truly care about him!!! I really do love his school, his teachers and therapist! And so does he mostly!

Asa usually gets excited when we head to school. We talk about where we are going and we do the sign for school. When we pull onto the street and see the buses he gets squeally, kicks happily and starts signing! So cute! He had a different reaction today! He missed school all last week! As we turned onto the street he saw the buses and turned his head to look out his window! No kicking, no squealing! I was talking and signing school and he just stared out his window. I finally snapped my fingers so he'd turn his head towards the school. He looked and turned right back to his window!! The little booger was avoiding me and the school!!! It really cracked me up! He may not have words but he communicates just fine!!! Even after all of that he still dropped off fine and had a great day with no meltdowns!!! I love that little boy!

Oh and a funny lesson! One goal involved moving forward to get a toy while on his belly. Well Asa doesn't do this at all! He barely gets up on his arms, not hands, and doesn't pull his knees under him. Then tonight I watched as he kicked, rocked and pulled his knees in a little so that he could inch forward to get a toy!!! How exciting! An almost, sort of, booty shake army crawl for a toy!!! And he is only 3!!!

2 comments:

Unknown said...: He may not have the a+ scores you would like to see but he is an amazing kid and has touched so many lives. I'm so glad that he is so happy at school and enjoys going that means alot! And just when you think he can't do something he said I'll show you momma! :-) love y'all!; January 18, 2011 at 11:17 PM
Christina said...: I have to ditto what Lacy has said! There is no possible way to put on paper what all Asa, and you, have accomplished in his short life. I'm sure some people can't even find the words to tell you how much Asa has influenced their lives. You may never get the report card for Asa here on earth that you might want but I bet when you/he get to heaven it will be an awesome one!; January 19, 2011 at 8:24 AM

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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!