Lost.

I'm feeling quite lost again these last few days. Definitely like it's the beginning again. Even my mum said it feels like it. It must be the unknown. We haven't done this treatment before. We don't know what happens, what could happen, if he will lose his lashes or his eyebrows, or if it will even work. Jacobs consultant called from Great Ormond Street yesterday, and went through alot with us. The biggest bombshell was that he will be having an ECG and electrophysiology. We had no idea of this. It's standard procedure with this treatment. Another thing we didn't know. And apparently the electrophysiology can be painful. He will have those little pads put on his head and the electrical current will give them a detailed look at his eye and the vision in it. How it reacts. Another scary thing for Jacob to go through. Everyone keeps saying to me "it has to be done." Yes, it does, but until you have to watch your kid go through all of this, you have no idea how much you wish it didn't have to be done. How much you really wish you could take it away. How you would give up your eyes or your sight for them. How you'd be prodded and poked and put to sleep every other week instead of them. Parents would do anything for their children. I know every parent would. And the pain of having to watch your child go through something that you cannot take away is just incomprehensible. Every parent has been through it, I'm sure. But when it's your kid, you forget all the other parents and think of yours, how you would do it for them in a heartbeat. And you do feel like no one understands. And perhaps that's self centred. But I don't have the time to think of that. I am concentrating on keeping my kid happy. You block out your pain and upset and just try to act like everything is normal. Although I think it is normal to Jacob now. Every morning he wakes up and the first thing he says is "Can we go to the hospital?" I can't decide if it's cute or sad.

We went to Moorfields Eye Hospital on Thursday for Jacobs first appointment with his new prosthetist. My mum came with me as I was crazy enough to think taking Alba and the pram on the tube would be a piece of cake. The journey was absolutely vile and the way the TFL staff spoke to us was horrendous. When asking for help up the stairs after being told that we'd have to wait for a less busy train as we had a pram, we were told "It's not in our job description." Eventually someone helped us and we managed to get to street level and get a taxi. Still stressful. But we got to Jacobs appointment, even if we were 20 minutes late. His new prosthetist Nick was really lovely and he spent so much time perfecting Jacobs new eye. And really made effort with Jacob too which was great as he felt relaxed. He took a mould of Jacob's socket so hopefully the eye should be a perfect fit. He gets it in about 6 weeks. I'm so excited. The journey home wasn't half as bad, mainly because it wasn't very busy and we chose to get a taxi and go from Liverpool Street station which was much more pram friendly.

We are off to Great Ormond Street Hospital in the morning for Jacobs first appointment. Then back on Tuesday until Wednesday. It's going to be a very busy week. I am so worried about leaving Alba as she is such a mummy's girl and in all honestly, she's quite hard work so I always worry if she's left with someone. It's so much upheaval for both of the kids. And I am dreading staying overnight in GOSH on Tuesday night. Again, it's all the unknown. I'm sure I'll feel better when the first one is done and I know what to expect.

New eye day!

I have been so excited for today for ages, Jacobs appointment on the 7th was cancelled and moved to today and since he has been able to get his eye out himself where it's now too small, it couldn't come quick enough!

It's quite straightforward, we go in, they take out the old eye using this little plunger (see below!) and then Sylvia, his prosthetist has usually ordered in an eye that should be the right colour, then she uses the old eye to mark the rough shape and then uses this huge machine that reminds of me of wood tech classes at school to file it down and shape it. It usually takes a few attempts and putting it in and out to get it just right. At our first visit, it was quite scary because we'd never seen Jacob without an eye in and when she took it out, I got really upset because it validated that there really is nothing there. I don't think I really believed it until I saw it. It wasn't anywhere near as horrifying as I thought it was going to be. It just looks like the inside of your mouth. When the eye is removed, they put an implant into the socket and stitch muscle over the top, then the prosthetic eye is kind of like a big contact lense that just drops into the socket, held in by the eyelid. We've been quite lucky that we don't have to take it out to clean it too often, we will have to eventually, more so that Jacob gets used to it and can learn to do it himself. The Royal London Hospital hold "Eye Club" where all the older children with artificial eyes go to gain confidence and learn about how to deal with their eye. I'll defiantly be sending Jacob along when he's old enough. 

Jacobs eye that he got today is a much better colour match as it has been five months since his last one, and his own eye has changed so much since then! 

I thought I'd show a picture of how Jacob looks when he doesn't have an eye in as a lot of people ask me what it looks like! If you are squeamish, you might not want to look! To us, it doesn't look that bad, but we are used to it! It still makes my mum go a bit funny even after she's seen it a few times! 

We stopped off to feed the ducks on the way as we left a lot earlier than usual! This is one of my favourite outfits of Jacobs, he's wearing a Little Bird by Jools tshirt and Next Dungarees with his little Vans.

A better look at Jacobs outfit. 

Posing for a blog photo! 

Not for the squeamish! 

Trying to keep him entertained! 

The huge machine that makes the teeny little eyes! 

My big brave boy. 

This is the best before and after shot I could get as he isn't a fan of sitting still! But the colour is so much better and it's a better size. Hopefully he can't pop this one out!

Jacobs "eye kit". The eye is the one he had removed today and replaced with a new one and the little orange thing is the "sucker" that we have to use to take his artificial eye out. 

Hope this blog has answered any little wonders you had about artificial eyes! If you've got any questions, feel free to leave them in the comments below! x