Category Archives: preemie

honor roll for the remarkable

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What a school year it has been here under the Big Top!

Only four more days left in this school year then, oh for goodness sakes, my two youngest children will be a SENIOR and a FIFTH GRADER!!!

I’m so proud of both of these babies of mine. They both have worked hard managing more than their fair share of obstacles to persevere, grow (a lot) and accomplish much. For Daniel it is especially gratifying. Remember the beginning of this school year? How we fought so hard to keep him in the same school and found ourselves defending the special education the school district provides for him because the law demands it? Well, guess who made the honor roll?

Go ahead, guess….

I’ll wait…

Can I hear a loud “OH YEAH BABY!!!“?!

So dear Mr. Dennis Wyatt, to answer your question that you posed seven months ago: “The question that no one is asking given the budget crisis is whether we can continue to afford to support special education in K-12 at the current level. That may sound like borderline blasphemy just to ask the question, but it needs to be asked…” …

Can we afford it?

Is it really worth it?

Is it worth it spending all the money, time and energy on a child with obvious learning challenges and delays along with sensory processing dysfunctions that sometimes make it virtually impossible to focus and learn?

Oh hell yeah!!!

I can assure you that no one amongst his peers worked as hard as he did to EARN that 3.0. Truly remarkable is he, my amazing son. Again I am reminded how lucky my son is, How truly fortunate and amazing and remarkable. But today, this time I am reminded in a way that makes me so proud of him and the people who have come along side of him to support him and encourage him. This beyond the normal that we have learned to celebrate as parents of a child who was first presented little chance for survival or any kind of good quality of life. This is a feat worth celebrating…even for the normal.

OMG, my amazing baby boy made honor roll!!!!

Yeah, okay mom, enough with the pictures!

those hormones I warned y’all about

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Oh dear glob they are bubbling up…and they ain’t no female, pms-y kind of hormones either!

My sweet boy, my beautiful son is 11 years old and the hormones are starting to bubble up. No, they aren’t a raging, rolling boil…yet. But they are just at the boiling point and…

I’m not liking it.

Not.

One.

Bit.

I have survived four girls through the transition of child to stinky pre-teen to raging adolescence. This can not possibly be hard for me anymore.

No way!

I’ve got this.

Totally.

I believed that.

I truly did.

I thought wrong.

Oh my goodness! My sweet little boy suddenly is one big gloomy, grumpy, irritated, annoyed person and he is directing that flood of emotions at me…complete with heavy sighs and eye rolls.

WHAT?!?

What indeed, son. We both are wondering what right now. Although I have to confess that my “what” is actually a three word “what“.

Then this comes on.

Oh my darling boy! Not a day goes by where I am not reminded just how fortunate, how so damn lucky we are…

you are.

Yesterday was one of those days. My heart breaks for another family, another amazing, brave and strong one like you. So I close my eyes and cry hot tears while I offer up a quick thanks for you…and say a prayer for the other. Then I say thank you for these hormones that are just beginning to bubble up to a boil because I get to experience them…again…with you.

eleventh birthday done right

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When it has been evident since you were a tiny, premature baby in the NICU that you are indeed magical, there is only one way to start the day that is your 11th birthday.

OH MY GLOB, Daniel Quinn is ELEVEN YEARS OLD!!!

And being the wizened eleven year old that he is, he tells me the owl and the letter that was waiting for him outside his bedroom door early this morning is not for real.

Oh well!

I seriously can’t wait for him to come home from school because there is more wizarding magic to come to celebrate this wonderful, magical, miraculous boy of mine.

lazy, lazy hypothalamus and pituitary

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Look! My babies!!!

Oh my god…the cute that they are! That is my first thought when I look at this shot. Would you believe that they are five years apart in age…looking at this picture? That’s the second thought that crosses my mind. Jodie is currently the same height as I am; which is absolutely awesome because she is determined to be a Rockette someday and is now definitely tall enough.

SQUEEEEE!!!!!

Daniel is currently only 3 feet 9 inches tall. When Jodie and her sisters were around Daniel’s age, they were more than a foot taller than he is now! So I look at this picture and I find myself again stressing over the fact that my little boy is not…has not been growing normally….then I look at the picture on that link and really see that OH MY GOD MY BOY HAS HARDLY GROWN AT ALL IN THE LAST TWO AND A HALF YEARS!!! Of course I already know this because he hasn’t outgrown clothes and shoes and we are carefully tracking his height and weight and we see him standing next to his classmates and see just how small he is. Perhaps I think about this a lot…

all the time…

okay, not all the time but pretty often….

pretty much since he was a baby.

Seriously.

As an infant, it was clear that he was not growing the way that he should have been. True, he did start life out weighing only 1 pound 6 ounces, but most micro-preemies actually do catch up with their peers.

Most.

Not my son.

Of course he had some issues related to eating, or actually, not eating. But even once he had his gastrostomy tube placed and he was being stuffed and stuffed with more calories than the average healthy adult takes in, he was still not growing. There had to be another reason. So he was referred to an endocrinologist who drew his blood every three months and kept telling me that he might benefit from Human Growth Hormone therapy…maybe, maybe not. Frustrated with her indecisiveness, we stopped seeing her. But we never did stop obsessing and worrying and stressing over the fact that Daniel was not growing. Thankfully, neither did his current pediatrician, who insisted that we get another endocrinologist’s opinion. Two-plus years of trips down to Children’s Hospital Central California in Madera for exams, a growth hormone stimulation test and then, another, we have definitively proved that Daniel is not growing, has not been growing normally because of his lazy, lazy hypothalamus and pituitary gland….or as Daniel understands it to be because his hypothalamus and pituitary gland are busy playing video games instead of working.

Yes, my son said that.

He’s right.

So now we know.

And so do the insurance gods who wanted proof before they would approve human growth hormone therapy because that shit is expensive and does he, like, REALLY need this…REALLY??!!

YES, you dorky insurance gods, he DOES need human growth hormone therapy!!!

YES!!

Two more tests are needed checking his thyroid and his adrenals and are to be done in the next few weeks and then we are getting this growing adventure started.

YES!!!

I’m excited…I’m elated…I’m relieved. Oh and I’m feeling guilty…and frustrated…and a little angry. I think of how long it took to get to this point, this diagnosis and well…oh mommy-guilt.

At least I can now obsess about something other than why is Daniel not growing.

a new belt

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Our boy is growing! He has grown so much of late that it is time for a new belt.

After months of practice and a week of study and preparation, it is time for him to take his blue belt test. Anyone who might have seen him at Tae Kwon Do, oh say six months ago, would not recognize him as he practices now.

So determined.

So focused.

So…

Oh hey! Hi there dirty window!

Arrgghh!!

Seriously, don’t you hate that at kids’ sporting events, or dance recitals, or school plays or anywhere else people do THIS…without even a glance backwards to notice that there are people behind them who now can’t see a thing except their body? Honestly! What is wrong with people? She seemed genuinely surprised over the notion of her standing RIGHT IN FRONT OF ME AND SEVERAL OTHER PARENTS was blocking our view.

UGH!!!

Sorry. That is a major pet peeve of mine. Where was I? Oh yeah…So determined. So focused.

So strong.

Watching him say goodbye to his old belt and then hello to his new belt, I couldn’t help but recall how far he come in just three short years…three years to this very day!

From a white belt…

to earning his blue belt.

Way to go Tae Kwon Dan!