Category Archives: micropreemie

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!

the remarkable

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Not a day goes by where I don’t reflect on how remarkable all of my children are. In spite of me, I have some pretty amazing daughters and the most remarkable young man in my son, Daniel. Given the support and love (and Twitter following Daniel has cultivated) locally, across the country and even other parts of the globe, I KNOW what a remarkable boy he is. Still I can’t help but enjoy it when someone else tells me so.

Taking a break from skipping stones along the Delta near the Stockton Sailing Club last Saturday, Daniel sat down next to a couple and struck up a conversation.

Knowing how hard he struggles in most normal, every day social settings and interactions, it never ceases to amaze me how he is able to do this. I have a hard time doing this…striking up a conversation with a complete stranger. I struggle for things to talk about in polite social settings with people I scarcely know and I’m supposed to be the neurotypical one here. But this is where Daniel shines. Shine he did with his new-found sailing club friends who talked with him at length about sailing, skipping stones, math, Harry Potter, Superman and fourth grade homework. The lady turned to me and commented that I had the most charming, remarkable boy. I smiled and thanked her.

It was then that Daniel stood up and thanked the couple for talking with him. “It was really nice meeting you.”, he said as he shook both of their hands. He then paused for a moment then asked the lady, “Is it okay if I give you a hug?”

Could you turn that down? Would you?

The lady and Daniel hugged warmly and again Daniel thanked them both waving goodbye.

Oh my heart!

People, this is my child!

This is why I rush to fiercely defend him, to protect him, to fight for his right to access to that which his sisters have enjoyed…to that which his neurotypical peers enjoy. It’s why I fought so hard over the summer and I am sure annoyed quite a few people at the school district…sorry Mrs. Fang. But it is worth it.

Daniel is the amazing remarkable young man that he is today because of the care and services that he has had from the very day he was born…that day over ten years ago when his future outcome was definitely not so rosy. Those first few days in the NICU no one would imagine the boy that he is today nor would they dare imagine the lives he would touch, the hearts he would steal, the people he would inspire.

There is no doubt that the costs of saving, supporting, rehabilitating, nurturing and educating a child like Daniel is a HUGE financial burden. It’s a burden that we have not shouldered alone. But I would challenge anyone to sit down with this child and talk to him. Talk with him about things you like. Talk with him about the things that he loves.Then tell me and tell everyone else that spending over $15,000 a year to educate such a child like him (according to Manteca Bulletin editor Dennis Wyatt’s calculations) is so not worth it.

Like Wyatt, I too worry what will happen to education for my children in this state if Prop 30 does not pass this November…not just my remarkable child but also his sisters in high school and in college.

Wyatt writes: 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 especially if Proposition 30 fails in November.

Yes, something has to give but I refuse to think that what has to give is the funding for some of the more vulnerable children in this state…the children who, sorry, do need a little extra attention and time. I refuse to accept that because I have seen first hand just what a little extra time and attention can do for a child…a remarkable child who is most likely to grow up to be a most remarkable man. People like Dennis Wyatt should be so lucky to know remarkable people like him.

the new hunger games

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In this news this week…and pissing me off on so many different levels… is the K-E Diet for the blushing bride-to-be who desperately wants to lose 5, 10 or even 20 pounds in just 10 days…no exercise necessary. All you have to do is have a doctor insert a NG tube (naso-gastric tube) into your nose, down your throat, through your esophagus and into your stomach. The tube will be taped securely to your face and attached to a feeding pump that will slowly drip a unique 800 calories/day formula of protein, fats and water.

“It is a hunger-free, effective way of dieting,” Di Pietro said. “Within a few hours and your hunger and appetite go away completely, so patients are actually not hungry at all for the whole 10 days. That’s what is so amazing about this diet.”

Slipping into a wedding gown for a dream wedding is a moment of truth for most brides, but as many say that there is a real fear that it will not quite fit. That’s how Jessica Schnaider says she felt with a June wedding approaching and 10 pounds she says she couldn’t lose. She was desperate for a quick fix.

“I don’t have all of the time on the planet just to focus an hour and a half a day to exercise so I came to the doctor, I saw the diet, and I said, ‘You know what? Why not? Let me try it. So I decided to go ahead and give it a shot,” she said.

I watched this news report sitting next to my son, Daniel…you know, the kid who was fed by feeding tubes the first four years of his life. The kid who could not, would not take food by mouth for those years for so many different reasons…medical and otherwise. The kid who had to learn how to safely chew and swallow food protecting his airway because his left vocal cord is paralyzed. Yeah, THAT KID! He shook his head, while watching this report, and asked why would anyone do that to themselves on purpose…if they didn’t have to. “That is so dumb!”, he declared. And bad mommy that I am, I didn’t chide him for judging someone so harshly…because he is right. He is so very right. Yeah, Jessica Schnaider, my ten year old son thinks you are dumb.

I get the pressure some women put on themselves to achieve an impossible ideal…sort of…kind of. I get the desire for a quick fix that does not involve sensible dieting and exercising…god forbid a bride-to-be actually WORK AND SWEAT to be physically something she really isn’t…something that her fiance did not fall in love with. I do. Or at least I try to imagine what would drive a woman to do this for no other reason than to be skinnier. Okay, fine! I DON’T get it. Not. At. All.

My precious child was fed by an ng tube for most of the 132 days he spent in the NICU. It was only the last three weeks of his NICU stay that he was able, with great difficulty, to take infant formula by a bottle to satisfy his neonatologists who directed his care. But just two months after discharge he abruptly stopped and refused the bottle…completely. There was no other choice but to resume ng feedings…even if his pediatrician thought he was right: that in spite of his extreme premature birth, his chronic lung disease, his reflux and his paralyzed vocal cord there was no reason why an infant would not eat…would starve himself.

This was our reality.

Our life with our beautiful baby boy was all about feeding him by a tube that was placed in his nose that led down to his stomach and was taped securely to his soft cheek.

Strangers would stare, ask what was wrong with our baby and offer all kinds of unsolicited advice and solutions…because it couldn’t be possible that a baby simply would not eat, would starve himself.

Everything I ever believed, learned or did as a mother regarding nutrition and feeding my children I had to let go of with this experience with my child. I had to accept the scrutiny (and sometimes judgments) of professionals and lay-people alike. I had to be the one to re-insert his feeding tube if it was accidentally or purposely dislodged by my baby boy…sometimes daily…and I had to listen to him cry as I did it. Daniel was fed by ng tube until he was 9 months old when his pediatrician and GI specialist reluctantly agreed to our request for a gastrostomy feeding tube. They would only agree because I refused to give continuous 24 hour feedings by ng tube because of the potential for dislodging of the tube and aspiration of feeding into his lungs. It wasn’t until 4 years later that he was finally able to be tube feeding free. Feeding this child still remains a struggle and I imagine it will always be so for him. I hated the feeding tubes…I despised them…but I remain grateful for them because at one point in his life it was the only way to feed him. Having cared for, cried for, prayed for and supported Daniel on this journey I have to wonder like he did…Why? Why would anyone do this to themselves on purpose…just to be skinnier and prettier in a dress that they will wear for but one day?

ABC

Why?