Today

.................What to say??............ Time to stop.

There's no brain signal for the left eye. We've lost it. Time to go home.

How do I feel, many asked. SAD, Truly sad, one of the saddest days of my life. If I could I would cry for hours.

I know this could happen, I tried to prepare myself, but deep inside I thought we could make it, no matter the odds. I was wrong. There's nothing we can do, and I have to accept it.

My baby girl can't see from her left eye.

I know she is fine but I need time to accept it and to adapt. It's very strange just to stop, not doing anything, just leave it as it is.

Once again I have to say that her eye doctor is amazing. He explained why stopping now. He doesn't want to keep operating and jeopardize what we've accomplish.

I know he's her doctor but I feel him as friend.

Eletrodiagnose

Done...Now we just have to wait until tomorrow's appointment to know if it's time to give up or not

Isabel took the feeding tube (the hospital made us)

After 3 months we took Isabel's feeding tube.

Even though she is fat, she still has the same problem, refuses food and doesn't eat.

We had to take it to go the the Moorfields Eye hospital and her pediatrician said to try to feed her.

Well....what can I say... She loves Creamy porridge after 9:45 a.m. .... And....

... nothing else.

Today, after almost 3 hours trying to give her a soup, stopping and giving another shot, bath in between, I had to give up. It has been 6 hours since her last meal, and she's already thinner.

Them she ate 180 ml of creamy porridge in 5 minutes. "She has a temper of her own", Mr. Nischal said :)

This is a picture of her is an yogurt fight. I've won. 100 ml in 45 minutes.

Yesterday's appointment and what to do next

Yesterday we had an appointment with Mr Nischal.

He, like us, is reluctant in giving up. But there's no point in keep doing surgeries and transplants if we not going to have results.

The first thing to do is an electrodiagnose to test the brain response to the left eye.

The last exam was very bad. But for my surprise he said that if the result is the same or better, he would give one last shot. I keep my hope. It's important.

But as he said, if it's worst we have to know when to stop, and is time. I'm preparing for this as the probability is huge. But she manage to reject one cornea and get another hazed is only 3 months, so??? We might beat the odds.

Wait and see, again.

Lot to say...

I have lots of things to tell you. But is late and the kids wake several times in the middle of the night, and I'm tired. So one thing at the time. I'll leave you the topics:

• (My) Grandpas visit;
• Isabel took the feeding tube (the hospital made us);
• Today's appointment and what to do next

Sorry, but I'll keep you posted.

Bad News from our 14th time in theatre

Isabel had her 14Th general anesthesia last Friday.

She was suppose to have a vitrectomy to make the eye bigger and to fix the detachment of the retina. We knew that the eye was in a bad shape and that there was a great probability of not doing anything. But we always seam to have an unpleasant surprise no matter (bad) the first impressions.

The retina wasn't so bad, but, as the cornea has an haze, the doctor can't see to operate.

So if we're doing anything, we have to have another transplant and the vitrectomy at the same time.

As the silicone oil of the vitrectomy will turn the cornea clouded, she'll need another transplant afterwards.

:O Confused, so am I.

5 years old

14Th of October

Happy birthday Spiderman...you're s big boy...

I hope you've liked your small party and your spider cake

Big kisses mum

Blue Eyes

This was how we knew....1st anesthesia with a day old

Before first tranplant ......2nd anesthesia, 7 weeks old

After 1st transplant (after a few hours she managed to take the shield off :) )

Every day life...

I've been alone in London with the kids since last wednesday and I have to tell you that we're really well. See????

Eating the my mobile phone

Us, almost

Even though I have to do everything by myself I feel must calmer. I was missing to live just us. OK, it's still missing dad. But we'll get there.

For those who don't know he is working back home. Someone has to work.

As My super active almost 5 years old boy needs something to do here's an example of our days.

• Friday: supermark and Farmacy (lots of big bags) in the morning. Lunch. Natural History Museum. Playground. Home. Bath and dinner. Bed between 8 and 9 p.m.
• Saturday: shopping for our weekly gift of good behaving (we're trying). Lunch out with the princesses. Home. Laundry. Shopping for milk and bread. Home. Bath and dinner. She fall aslepp in the floor at 7:30. Bed at 8:30 for him. I'm still here.

Isabel spends most of the time on the floor exploring

:)

Regrets

I’m really sad today.

Not that I had some more bad news. No, but when learning about her eye I realize that I might have prevented.

My daughter will most probably lose her left eye and I can’t stop feeling guilty. I should have known it better. I have been so careful until that day. And with the need of the nasogastric tube and the baptism I didn’t go to London when suppose.

L

Today I hate myself. But most of all I hate to have to decide.

I'm really sorry baby

Nothing seams easy these days

I want my life back.

It can be a different life. I really don't mine as long as it is my own.

And could someone send me my husband.

We still don't know if we're operating the retina of the left eye. The doctor says it might not be worthy.

I would do it. I really feel we don't have anything to lose.

We just have to wait and see