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Monday, December 10, 2012

The summer of Dr's appts-part 1

I have been such a distant blogger of late.
I so appreciated the feedback after my last post, and decided it was time for some lengthy updates on each of the children.
This post will be about Isaac.

Our little peanut, our little man, our baby, our walking 1 man destruction team, our non-stop, revved up, little terror on 2 short legs!!!
He is a one in a million.
He is energetic, playful, LOUD, loves to throw, Loud, loves to be outside, LOUD, and loves IPAD and any other technology he can get his little hands on, and did I mention he's LOUD??????
BOY, if those sounds ever get channeled into words, we are going to be in for trouble-the guy makes noise all day long-but due to his lack of language at the moment, most of it is just loud shreiks, screams, squeals, and babbles.
He loves his family, and has graduated from his crib to his sister Kendell's bed, and boy, does he feel like a big boy now. She, of course, adores him, and is a very good second mommy to him when mom #1 is running others to Dr's appointments or doing other mom duties.

Isaac is very little, and still only weighs 26 pounds. He is wearing size 24-2T clothes-FINALLY.
He will be 4 in February:)
He moves-FAST-and he moves all day long-he wears us out trying to keep him out of trouble.
He has decided he is bored with most of HIS toys now, and wants only the school toys-and protests, LOUDLY, whenever he can't have what he wants-about 20 times a day:)
Isaac underwent a 2 day neurodevelopmental assessment back in July.
They look at speech, physical and occupational therapy areas of concern, neurological, genetic, audiology, IQ, and nutrition, just about anything that a guy can have tested, Isaac has had lately.
He also underwent a sedated brain MRI in August as part of this clinic.
PRAISE the Lord, the MRI showed NO physical issues with his brain.
That just leaves us with more questions tho, as we seek to find out why his neurons aren't connecting the way they should be for a guy his age.

YES, this is a mud puddle-did I mention heLOVES water? Especially COLD water???
He also had lots of blood tests done, including a test called CGH-which analyzed the chromosomes in his body's chemistry.
Little Isaac has a chromosome disorder.
It leads to cognitive delays, speech delays, and short stature.
an answer-of sorts!!!
NOW, the fun really begins, as we try to put more pieces of the puzzle together, and try to figure out how best to help him achieve all he is meant to achieve in life.
Will he ever live independently?
We don't think so.
How far can he go?
We have no idea yet!
I have stumbled upon an organization in PA called
Family Hope Center that specializes in empowering parents to heal their children!!!
I love their philosophy of assessing the things a child is doing, and by that, determining what areas of the brain aren't working properly, and teaching parents how to help their children's brains work better.
It is on my wish list for early in 2013 to spend some money on their DVD program and work my way thru their coarse.
I have also found out there are 2 women in our state who have some training from this program-and one is only about 30 minutes away-NOW, THAT MAKES ME REALLY EXCITED!!!!
I can't wait to contact her, and see what advice, help she can give us.

Isaac receives weekly speech therapy at our local clinic-actually, he is one of 4 that I take once a week-it is a long morning of shuttling children to and fro-and Kendell is my helper at home, preparing the next to leave, and keeping things on an even keel while I am gone.
Nick helps out when he is around, but these days are usually Kendell's and mine to "make it happen"
I can't say Isaac is responding well to therapy so far.
He has a few signs--but his preferred mode of communication is screaming, grabbing, and crying.
We have seen a change lately-from his very happy-go-lucky little guy antics to a more frustrated, I'm not getting what I want attitude.
It is frustrating for all of us.
He just doesn't receive instruction well.
No just has never meant NO for Isaac.
It doesn't help that he's the baby-and LOOKS so baby yet, that it is hard to treat him like an almost 4 yr old.

(SHHH, his photographer sister doesn't know I know these are on my laptop! It's a birthday surprise for me-but it's just too cute to pass up)

He has no interest in potty training.
His table skills are minimal.
Some days he eats wonderfully, most days he is a trial to endure at most meals.
He can be hyper, does not sit still, SOME part of him has to be moving at all times, and the only rest we have is when he is napping, or sleeping at night.
He is just always on the go, and he really controls our household at the moment.
We really do love him to pieces, but it is time to reel in this monster, before he becomes totally uncontrollable.
I'm just not sure how to go about it!

did I also mention he loves bouncing things? Even things that aren't meant to be bounced:)
ANY advice is welcome, because public school is starting to look like a real option for him next year. I just can't get anything done, and he won't let you work with any of the others without pitching a first class fit if he's not included.
He definitely knows what he wants-unfortunately, it's usually not what we want at that particular moment:)

This has not been an easy assessment for Chuck and I.
We had such high hopes that his delays were simply due to orphanage life and a heart condition that left him malnourished and under-stimulated until we got him at 16 months old.
WE still have hopes, and we love the progress he has made, and is trying to make.
Sometimes, its just hard, hearing stuff about your kids!
I mean, really hard!!!
When you watch your child go thru these battery of tests, and come up lacking, and you don't know for sure what to do to really help him the best-it can bring some sleepless nights.
But I am certainly thankful for the Dr's that I have gotten to know quite well over the last 2 years, and especially this summer, with 3 going thru testing. They care, and that really helps.

we sure do love him, and he can be such a ray of sunshine.

There will be 2 more parts to this little series, as I address both Lili and Rose's evaluations-stay tuned:)
Chris for all 9 of us!!!!