Monday, September 13, 2010
In December, we thought Julius wasn't speaking because his throat was raw from reflux and he needed more meds, and he did improve and said a few things more clearly once he got more, but then....something happened. And he got quieter and quieter, and one day, Mr.C turns to me and says, I think he's deaf. And we realized that he never turned around for noise behind him, ever. If we clapped very loudly and close, the reverberations might make him turn, but nothing else. I thought maybe it was earwax or fluid clogging up his ears, but the pediatrician kept saying it wasn't possible.
Everyone actually, just kept saying it wasn't possible. The said that earwax and fluid could never ever clog up a kids ears, that I must just be ignoring him, not speaking to him, that he must have some sort of developmental delay and I was making it worse. Daycare and speech therapy was the answer. Definitely not being near me, because after all, if he wasn't developing perfectly, it had to be his mothers fault.
The 8 minutes or so with limited oxygen? The amount of time he spent with no oxygen, completely unresponsive, no pulse, no nothing? The long family history of language, learning, and speech problems? Nope, all irrelevant, in the face of what we all know, is always to blame, bad mothers.
No one blames fathers, or doctors, or genetics, or crappy non-existent medical research, or just plain, old, bad luck. Nope, it's all of us shitty moms. Some of us even start to believe it, and think it might be true, and that maybe it's divine justice, taking revenge on us for risking pregnancy and birth another baby with our really bad medical history.
I pressed on, in the face of all that guilt and blame. I got a hearing test, and a referral to an ENT, and I went to a psychologist, and a speech therapist, and I put up with more blame and more decrees that daycare would "cure" his obvious neglect. At the first hearing test the audiologist did a basic test, and declared him fine. But I have no idea what on earth she was measuring because by the time we went to the ENT, he had a giant wax plug in one ear. So large, and so awful that my husband had to hold him completely still while surgical implements were used to pull it out.
The 2 hearing tests in a row after that were still showing loads of fluid so his hearing was muffled, likely with gluey fluid that most Docs can't see on sight, but hearing tests can detect easily. Yet for some reason, the ENT did not tell us the truth. He told us to relax, just come back in 6 months.
I learned long ago that if a Doctor tells me to relax, and I do it, I end up burying a child, or deathly ill. Never ever relax is my motto. I insisted on one more hearing test referral.
So while I suffered more insults and paid more money to speech therapists and psychologists and listened to more discussions of how daycare would cure everything, we had a flood. A giant flood. And we called in the insurance company who wasn't going to cover anything, until I called in a contractor and started pulling up the now moldy subfloors, and gee whiz. There was an open overflowing drain under the subfloor. Our drains were blocked by tree roots and all sorts of strange items, and over the last many years, the water had spread mold. Black mold. Did you know that Black mold causes sinus problems, and glue ear and tinnitus, and allergies and sometimes, excessive earwax in dehydrated kids?
So, one insurance claim later and several thousand dollars later, we have a ripped up basement, clean flowing drains, and way less mold, but until mid-october, who knows if it's all gone? We're breathing easier for now.
And the finale? On our last hearing test, Julius' ears were free of fluid and all obstructions, all earwax. His left ear passed, but his right ear failed.
My son is deaf in one ear, and has possibly had limited hearing in the other, and every single Doctor from birth onwards missed it, and never bothered to properly check.
But they never missed a chance to blame me. Proving that nothing ever changes. Nice.
I need to get into a pediatric hospital that can do more advanced testing now, and make sure that he can hear someday, and communicate someday. I don't know just how serious or mild it is. I only know that he has about 10 words, and is getting increasingly frustrated, and is very very far behind. None of the speech therapy we've paid for has worked. And because we've fallen through the cracks, and he wasn't tested properly at birth, I don't know if or when we ever will get into the kind of specialized hospital program that we need.
I need another miracle.
Sunday, August 01, 2010
Except I am terrible at making decisions, and now I don't know if it looks weird, or awesome or whatever? I have no ability to do this computer stuff beyond typing and pressing obvious things like "post", although I have picked up a few minor things over the years. So thank God someone else is doing those bits.
Anyway. What do you think? We're going to keep fiddling. Any opinions? Ideas?
The reason I needed a new look, in case you are wondering, is because I am going to BlogHer again, and I want to be one of those fancy shmancy high end bloggers with business cards that match their blogs and their twitter backgrounds.
Words are good, but looks count in blogging. I guess. Who knew? I think in 4 years I have only seen one blog so ugly I had to click away. Most were lovely, but it didn't matter to me much. I've seen lots of professional company websites that were hideously ugly and non-functional, but really, only one blog. And that person changed their blog. So there.
So my boring blog will be getting tweaked. Continously. Keep clicking back and see if anything is different.
Wednesday, July 14, 2010
Not sure anyone is here anymore, reading this, but I thought I'd start writing something once in a while, or more often. I've been reading lots of your blogs, though I find that my blogroll is pretty out of date.....and my template could use some designing or tweaking or some damn thing.
Anyway, this is that post you write when your last post was too heavy and you don't know what to write next.....so you fill in with something.
And now we carry on, pretending nothing happened in the meantime.
Wednesday, February 03, 2010
But I am scary. Not normal.
A little over a year and half ago Julius was born. And it was not a good delivery. It was horrifying and terrifying and there is not one good memory I have of it. Nothing clear anyway.
My husband broke down crying and told me something about that delivery a while ago. The docs and nurses were there checking my IV and my epidural drugs, because I was screaming and it wasn't normal contractions, but there was no blood, nothing out of the ordinary. No one knew what was happening.
He said that I was screaming and begging to die. Then my head fell back silent.
And then I did.
No heart rate, no BP, no nothing, on me, and the baby too. Zip.
I thought I passed out, but when I looked on the hospital records, turns out, I was dead.
He says people starting pumping on my chest, and I have a vague sense of noise and chaos. I also remember feeling the cold scalpel across my skin. I thought I said, "May I have some painkiller?" Then nothing but blackness. It was probably a dream. The records say I was unresponsive, so I guess that means not talking.
I felt myself being moved, shaken, talked too. I know they got me breathing and said I had a placental abruption. I lost huge amounts of blood, almost all the blood in my body. They had no clue I had abrupted until they did the crash section.
The baby was born dead. They suctioned him and gave him oxygen and he was alive. Just like that. Dead. Alive. Like throwing a switch.
The OR looked like a crime scene afterwards, the senior resident looked like he had been punched, and my OB actually cried and begged me never to get pregnant again.
The placental pathology report? I stopped the heparin at 34 weeks, and delivered at 38. In that 4 weeks, my formerly "beautiful" placenta became half dead, shrunken, calcified, covered in clots and barely attached to my uterus. The pathologist said it was likely to have abrupted at any time. Or just stopped working completely. Maybe throwing a clot and killing me and Julius.
There is no white light by the way. In case you were wondering. It's not like in the movies. Since I've been dead and all I get to say that.
He's fine now. I'm fine. We're just fine.
But I'm really not. And I have no idea where to go from here.
Not a fucking clue.
Saturday, January 16, 2010
The laser eye surgery went well, and it's great to be able to see perfectly, beautifully. If I had to do it all over again, I'd still get surgery, but I'd get a new humidifier on my furnace first; dry eyes are not good while healing. And no, I haven't replaced it yet! I hired two different contractors, both refused to replace it, one because he wanted to save my husband money and he figures my husband could do it himself, (umm, no he wanted to pay you to work asshole) and the other because "humidifiers can never break". (Apparently the laws of rust and physics and mechanics don't apply to these magic items.)
I can't make this shit up people.
There is a long litany of horrible strange bizarre things that have happened since, but I can't get to my laptop, and I can't make hyperlinks on email posts, so I can't really make this a decent post to describe them all.
A few things? Julius was extremely cranky, and not really babbling, or talking, and I was getting mildly freaked out to say the least. Well, after many months, we discovered that his zantac/ranitidine dose hadn't been adjusted in months, and he had gained weight/height.
The stomach acid was burning his throat and vocal cords, so he was coughing and congested and pulling on his ears and head and not talking because not one Doctor thought to check it, until I asked about it. Instead all I got were bullshit lectures about him not needing antibiotics (I never asked for any!!) And more bullshit suggestions about how he must have "developmental issues" and it was ok, and I should sign up for speech therapy.
Except within 48 hours of upping the zantac and adding the prevacid, he was talking. And not crying. And not congested. And the more he takes, the happier he gets. And once again, every Doctor I had seen was completely wrong. I'm getting tired of this.
emedicine.com has a great discussion of pediatric GERD, and all these symptoms and treatment issues are listed, including a discussion of the connection between asthma symptoms (for ex. chronic cough) and acid reflux. Why don't Docs ever read this stuff? It's recently updated, and written by experts. GAHHH
Whole thing has me thinking about Kaz and his untreated baby reflux and his current to this day asthma. Did leaving it untreated burn his bronchial tissue and scar it? Does microscopic aerosol stomach acid get into his lungs even now? Is that what causes his nosebleeds? Is this a factor in his stuttering issues and reluctance to go back to speech therapy?
Sigh....how dare I, a mere mother, speculate. I can just hear the pediatric ENTs and pulmonologists now......
This stuff drives me crazy, but just trying to help my own family is hard enough without trying to fix the whole world. Like the boneheads who keep repeating that doubling folic acid will cause colorectal cancer? The media portrayals make me want to shoot someone! Motherisk and the SOGC both have told Health Canada that it is critical to do if we want to lower the rate of stillbirth and birth defects and miscarriage and pediatric cancers.
It is especially critical because we know that most Canadians are deficient in Vitamin D, and you can take prenatals until your eyeballs fall out, but if your D is already low, you can't absorb folic acid. And there isn't very much D in prenatals to lift your levels.
But Health Canada has said no to doubling folic acid, because of the anti-supplementation, anti-science, anti-evidence based medicine asses.
Do you know how much folic acid fortified bread the average Canadian would have to eat to induce one cancerous tumour?
233.3 loaves of bread or 150 litres of real orange juice PER DAY for six months, every.single.day *
Plus some azoxymethane, a chemical used to cause cancer. And if you just eat the bread or OJ and stop taking the chemical? The tumour growth stops, shrinks in fact.
I don't eat that much bread. Not sure anyone could. I definitely don't eat giant spoonfuls of that chemical. (Tastes crappy in OJ I bet.)
But I have had a baby die of birth defects and I have had miscarriages and I would like to know why some idiotic unscientific crap is being presented as a reason to let my kids die.
Oh yeah, I forgot, no one in government gives a shit about actually saving babies lives; they just like pretending to save them at photo ops.
I don't have the energy to fight a government this stupid right now. Feel free to take up the cause.....Kaz has to get into another school, I'm done, totally fed up with their crap. We've applied to some, hoping at least one takes us. And Mac? Needs some more attention. Like structured rule making attention.
And Mr.Cotta? Driving me up a wall because his business stress is spilling over into our personal lives.
I have to go to bed.....more later, as long as you don't care about links and you are kind. I'm feeling pretty damn fragile right now.
*2mg/kg/day of folic acid in a 70 kg person, equals 140mg/day. 15 slices of bread per loaf of Dempsters. Tropicana OJ Unfuckingreal, eh?