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.

Sickness, Fevers & Food

So I caught the sickness bug...what a horrendous thing to have when pregnant. Lady Wright was obviously very hungry, and the idea of food was enough to have me hugging the toilet again. Thankfully I only felt really horrendous for about 36 hours and by the Saturday night I thought I was ready for food again. Hell no. To be honest, I ate possibly the worst thing, a fry up. I really, really craved it! My stomach was not ready for that amount of grease. So I spent the next two days in agony and unable to eat again. By Tuesday last week I was feeling so much better, so I went nuts with my Dettol and bleach. Whenever anyone is ill in our house, I become a bit of a germ freak. Everything gets stripped, washed, bleached, the lot. This did nothing for my sciatica. So I spent all Tuesday night crying about how uncomfortable I was. It was a tough few pregnancy days! Rich was a massive help though and Jacob was no trouble at all which is always a bonus.

We had a couple of play dates last week which was nice for Jacob. He is so funny with other children, although sharing is still a bit of a tricky spot. I did read that children don't understand the concept of sharing until they are four years old, so I'm guessing as long as we teach them now, they'll get it themselves eventually!

We also had a sleepover with Teddy and my sister at the weekend as Rich was going away for the night. It is such chaos when the boys get together, all toys come out, Teddy wants to play Play-Doh, Jacob likes to eat play-doh. But they get on really well which is lovely and its been nice for there to always have been someone else there for Jacob. And I think Jacob has learnt a few things from Teddy too. 

I've finally got everything for Lady Wright's hospital bag. Well, except the actual bag, but I'm ordering that next week I think. I just need to decide if it's definitely the one I want! I think I'm going for the double pocket Cath Kidston one, mainly because it looks pretty huge and I'll be carrying two children's worth of stuff around in it. I had a Cath Kidston one with Jacob and loved it. I was sad to stop using it but once they're not having a new nappy every two hours or bottles, you tend to just fill them up with junk. Much like a handbag!
I've started to get my hospital bag ready too, I don't know why but I feel much less prepared this time so doing all these things a bit early is making me feel a bit better. When Jacob was born, we were in hospital for nearly a week after as he had jaundice and required photo therapy and his bloods weren't quite what they needed to be, so Rich ended up having to bring me more pyjamas and clothes most days, he didn't do too badly but as we had just bought a new washing machine and he didn't know how to use it yet, I was quite mismatched by the end of the week. So part of me wants to over pack almost in anticipation of a long stay, but then at the same time, I don't want to jinx it as I really hope we are in and out pretty quickly. Especially as we will have Jacob at home too. We still haven't left him over night so I'm absolutely dreading it! Hopefully little lady will arrive in the middle of the night and then I'll be home that afternoon. Fingers crossed!

Jacob had a new eye last week, but to be honest I am so disappointed with it. He hasn't had one since October so I was really looking forward to it as his current one was looking really small. His prosthetist hadn't quite noticed how much he had grown, so she over trimmed it and it actually looks worse than the last one in my opinion. She has ordered another one and attempted to make a mould too so he should have another one in around six weeks. I was gutted when we left. But Rich said "they can't be perfect every time!" which I guess is true! I haven't got a very good photo of his new eye, mainly because it isnt very good! But here's a couple of photos since he had the new one. The only good thing about it is that it hasn't been as weepy. Silver lining I guess!!

Jacob has had a fever on and off for four days now, and a little rash to go with it. It looked viral to me but today it went a bit too red and sore looking for my liking, and being Good Friday, no doctors were open so it was off to A&E. We were seen really quickly, but as soon as we arrived and explained his symptoms, one of the nurses looked really concerned and asked if he'd always had a squint. Which he hasn't, obviously if you know him, you know its his artificial eye. It was really great that they'd picked up on it straight away though as she said with a fever for no apparent reason they'd want to get it checked quickly. My friend is also a health visitor and she says she is so much more in depth when asking parents about their children's vision now and any concerns with their eyes. I'm so glad how much more aware of Retinoblastoma everyone seems now. I had never ever heard of it but because of Jacob, so many people I know, now know about it. Anyways, the nurse said Jacob has just a viral rash and just to keep an eye on it. But you can never be too sure! And with it being chicken pox season and scarlet fever doing the rounds, I'd rather be safe that sorry! He advised Piriton for the rash, and when I told my sister this she just said "he will sleep well tonight!" Apparently it knocks them out. So we shall see! I would be excited for a full nights sleep if I didn't have a baby bouncing on my bladder causing countless nighttime trips to the bathroom!

Poorly pants flaked out on the sofa.

I feel like all I think about these days is food, especially since spending 3 days starving after getting sick. I have become OBSESSED with smoked salmon. My friend Fran made me a smoked salmon salad last week and since then it is all I've wanted to eat. I've had it about 3 times with scrambled egg and granary toast. I heard you're not supposed to eat more than two servings of oily fish a week, but I'm not a massive meat eater and I'm thinking it can just replace the however many servings of red meat you're supposed to have! At least that's what I'll tell myself. I have gone on a little bit of a health kick with food as I was eating just crisps and chocolate and cakes all day, no actual meals which is no good for anyone. So I did a healthy shop and have actually been really good. Rich doesn't really eat anything "healthy" so it has meant making separate dinners a lot, but I have felt so much better for it. Although, yesterday I went to Alec's Restaurant in Brentwood with a group of friends for lunch, and I can honestly tell you it was the best meal I've eaten in my whole life, naughty, but delicious. I had 3 courses, and I honestly couldn't eat anything else until today. They served canapés and bread when you arrived, then I had mussels to start, an unbelievable cod fillet in soy sauce and spring onion glaze with creamed spinach and dauphinoise potatoes for main and an amazing chocolate mousse for pudding. I'm actually dribbling thinking about it again...

Have a great Easter weekend! 

Catching up.

I haven't done a post for ages. Mostly because Jacob has been ill then I was ill, then Jacob was ill again and as a house we have been averaging about six hours sleep a night. Jacob still isn't a fan of staying in his own cot all night. He lasts until about 4am, and at the moment I am too tired to even fight with him. So I bring him into our bed where he messes around for about an hour until he eventually goes back to sleep. I read that toddlers and babies have poor sleep habits when they're going through a developmental spurt of some kind. Jacob has not stopped chatting away for about two weeks now. And he's started to say some actual words which is hilarious. Still no "mum" though, unless its mid meltdown. His new favourite is "socks." It all started when I asked him to come get his socks on one morning, and now his favourite thing to do is get his socks and run around shouting it. He also says "oh dear" which is just as funny. The best one has to be "no." I say the best one, it's a nightmare. Everything is "no" and a headshake. "Do you want to go for a nap?" "No." "Do you want you dinner?" "No" "do you want a million pounds?" "No" It's so scary seeing him grow into a little person.

He had a new eye fitted last week. It's actually a really good match. I don't really notice much difference anymore except for the size, but this time I can really see that its changed. When his prosthetist Sylvia first fitted the new one, it moved so well, but looked slightly inwards. We decided it would be best if it was looking more forward as opposed to moving more because with Jacobs nystagmus, he tends to look inwards with his left eye a lot so it was really noticeable. Overall, this is probably the most pleased we have been!

I've been arranging a Halloween fundraiser in aid of CHECT (another reason I've not posted). I originally planned to do a kids Halloween tea party at my house for just Jacob and his friends. But Laura suggested we turn it into a fundraiser. The response we got when asking for donations etc was absolutely amazing. A local dance school, "Makin' Steps" donated the use of their hall, a bouncy castle company loaned us a castle for the afternoon and my friends brother loaned us his DJ equipment. We also had Fiona from Jo Jingles come and do a session for all the kids. I enlisted all my friends and family to help with the food, and so many people baked cakes. It was so lovely. We had an events company called Events4All there and they brought their candyfloss and popcorn machines which proved a huge hit and they also had an Olaf mascot. I also know a girl who dresses up as Elsa as part of her company MP Little Treats too so halfway through the afternoon we had Elsa and Olaf come out to meet the children. It was brilliant. Jacob absolutely loved it. We held a raffle too, all prizes were donations from various companies and friends. I haven't got the exact total yet as we are waiting on a few donations but I think we raised about £1100 in total which is amazing! It was an absolutely exhausting afternoon but so worth it as I think all the kids had a brilliant time.

We've moved on from Frozen, which I'm kind of grateful for. The new favourite is Toy Story. He will sit there beginning to end and not move. Its nuts. As he is down to one nap a day, I've used Toy Story as the second nap substitute so I can still get things done. When he first dropped to one nap, it was so hard for me to get used to more than Jacob I think, as I'm sure any mum does, I really look forward to that hour or so of downtime. Not anymore! Thank god for Woody and Buzz!

We are at the hospital again next week for Jacobs next check up so fingers crossed he's still stable!

Below are a few pics from the last week or so. We went to Van Hages which is one of my favourite places ever, especially at christmas time!!

My little vampire on Halloween!

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