Big, adult decisions.

I took Owen to the eye specialist this afternoon to get his eyelids assessed.  When we went to the opthamologist a couple of weeks ago she mentioned that in addition to his optic nerve pressure there was also a possibility of his eyelids obscuring his vision.  His eyelids have never opened very far, known as a condition called Blepharophimosis; it's indicated by small eye openings horizontally as well as verically, a low nasal bridge and some other stuff.  Apparently it's quite rare.  How lucky for us to have won THAT lottery.

The surgery involves putting in a small piece of silicone tubing into each eyelid crease, then attching these to the muscle above the eyebrow which controls the opening and closing of the eyelid.  Apparently to do this in both eyes will take several hours and he'll have black and blue eyes when it's over.  Whooopie.  He'll also have to stay overnight at CHOW.

Now the big, adult decision we have to make is whether the major benefit to this surgery is going to outweigh the major drawback.  Owen will certainly be able to see better and he won't have to tip his head back all the time, but on the othe hand... he will no longer be able to close his eyes all the way.  Ever, unless we completely reverse the surgery.  So while he will still be able to sleep, whoever is looking after him will have to make sure they put ointment on his eyes during the night to stop them drying out.  Yes, it's inconvenient for us, but what isn't these days?  No, my concern is him having infections in eyes that can't blink properly and in his general appearance as he ages.  Can you imagine sleeping next to your boyfriend for the first time, only to discover his eyes don't close?  Freaky.  Apparently his eyes will be fully open immediately after surgery and will then learn how to close partially as time goes on.  They won't ever close all the way though.

It's at times like these I feel at a crossroads.  I want to ask Owen what HE wants, but that isn't possible.  When he was tiny we made the decision to place a G-tube, but I've regretted this ever since and have wondered if his oral aversion to bottle-feeding was a direct result of it, not in spite of it.  And now we have another decision to make that could affect his development.  We're being told it will help him, because the head-tipping is so acute it's preventing him from learning how to sit and stand, but how do we know this?  I mean, we were told the G-tube was a must-have, but now I'm not so sure... what if this is the same thing?

Even though Mike and I talk about this stuff, because he's not at these appointments with me I often feel very alone.  Very pressured, very alone and sometimes very unsure.  I can't wait for the day Owen is old enough to tell me what HE wants.

Tina.

So tired... so very, very tired...

Well, it seems as though life is out to bite me in my abundantly-sized buttocks, because we've had some more bad news about Owen's eyes and brain.

Ok, so here goes:

Owen's eyesight is actually okay. He's long-sighted but apparently that's common at this age and he'll outgrow it. No, the problem is a little more difficult than that. Firstly, his eyes only open a tiny amount because the muscles in his eyelids are underdeveloped. He's now learnt to compensate for this by tipping his chin up, which is very bad for his neck, back and shoulders, and if we don't sort out his eyelids he may develop a permanent disability because of it. He needs corrective surgery between now and May to insert silicone tubing into the upper eyelids to strengthen them and help open the eye up further.

In addition to this, the doctor carried out a refraction on his pupils and found something very, very scary. The optic nerves in both his eyes are so inflamed that if we ignore the problem it could become an emergency. Owen's skull is fusing prematurely, which means it has essentially stopped growing and expanding. His brain seems to still want to expand though, which is putting an extraordinary amount of pressure on the skull and the backs of his eyes (hence the inflamation of the optic nerves). Now, normally I would just sigh and think, "Oh, yet another hurdle to get over", but today the doctor frightened me by the stress and importance she was putting on his condition. She seemed frightened herself.

Owen will almost definitely need surgery to open up the spaces in the skull he's supposed to still have, but he may also need a shunt put in to the brain cavity itself to drain excess fluid and relieve pressure in between surgeries (he will need several over the course of his life, until his head is adult-szed). If we do nothing and the pressure continues to grow he could either lose his sight, experience brain damage, or in some severe cases, even lose his life.


So it was not a pleasant way to spend my morning and I got very upset about everything.  This poor little boy is experiencing headaches as a result of all this, which makes me want to just pull him into my arms and cuddle him very tightly forever.  I'm not even sure I'm allowed to give him any pain relievers as they don't routinely recommend giving them if there's no cause.  Sigh.  What on earth am I supposed to do?

Thankfully we have managed to get his CT scan moved up a week, so if they find anything on Tuesday that's serious enough to need action immediately, we'll be ahead a week.  Today I've been making phone calls left, right and centre to push appointments up, get reports faxed to new specialists and generally try to make life easier for Owen sooner.  I think it's going to be a bumpy road, folks...

Oh, and I think I'm anaemic again.  Booooooooo.


Tina.