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.