A tonne of bricks...

"I'm going to ride a motorbike when I'm bigger!" That was it, a huge tonne of bricks dropping onto my chest. Obviously I didn't tell him that he probably wont. Unless he's a passenger. But even then, I probably wouldn't let him anyway. With "big school" becoming imminent as opposed to next year, or a few years, it's in less than two months, I have started to realise how Jacobs vision is going to start affecting his life more and more. Last night we were talking about our friends little girl who'd been to her school disco, Jacob said "I want to go to a school disco!" I said "Do you? Do you think you'll like it?" And he said "no, it will be too dark and loud. I won't like it." That's 2 heartbreaking realisations in 12 hours. No school discos, no riding a motorbike. What next? Obviously I know none of this is set in stone, and who knows what will be available to Jacob in the future, but for now, they're a no. And it isn't fair. 

Part of me cannot wait for Jacob to start big school, I know he will love it. But the anxiety I feel over him starting makes me want to keep him at home forever. Or at his preschool. Because I love them for how they've treated my baby boy and can't imagine anywhere looking after him the way they do. He got into the school I really wanted which was amazing. He has a huge Education and Healthcare Plan (EHCP) that the school, preschool and Jacobs Visual Impairment teacher put together along with Rich and Me and it covers absolutely everything from starting the day, to coat peg positions to where he will sit in the classroom. So I know they know all they need to know. And once Jacob starts, they will see his isn't what he seems on paper. On paper, I think he can be absolutely daunting. It isn't until you meet him that you realise how he doesn't actually let his sight or lack of, affect him. 

I know it's been a LONG time since I last wrote, Jacob is still stable. Our hospital appointments are 3 monthly at the moment and hopefully will only get further apart. We've had some behaviour troubles with Jacob but I think it's down to all the change going on, leaving school, starting big school. Alba is a lot more "involved" now so he absolutely tortures her and has become very protective of all of his stuff. Another tricky phase in life with two toddlers I'm sure. They have brief moments where they're the best of friends and it's absolutely lovely. But they are few and far between. We've also had chicken pox since the last post, but they both coped really well with it. Thank goodness! I will write again soon! 

A few photos from recently; 

And the award for worst blogger ever goes to...

Me! So, two kids that don't stop moving from the second they wake up in the morning, (usually 6am, 5am lately.) until the second they go to bed at night, makes it very difficult to sit and write these blogs. And I'm not even exaggerating. They're both like little Duracell bunnies that get high on oxygen. It is EXHAUSTING. And to make it even more fun, if Alba even so much as blinks at Jacob, he totally loses his shit. I thought "Ah, 2 year age gap, they'll be the best of friends, they'll play together so lovely." Nope. I am an idiot. So, the blog gets neglected. Don't worry, it's not the only thing I've forgotten about. My hair, my eyebrows, I can't remember when I last cleaned my bathroom with something other than baby wipes. The dog probably hasn't had an affectionate cuddle or human contact that wasn't being shoved out of the way/tripped over/being rode by a small human for months. I'm not even sure Rich still lives here. I forget to speak to him lately too. Okay, that last one was a joke. He lives here, I just don't talk to him.

Anyways, besides all that, yesterday was 3 years since D-day. Or diagnosis day. Or the start of Jacobs fight. Whatever you prefer. It was also Rich's birthday, but I also forgot about that. Not really. He got a Colin the Caterpillar cake of course. This year is the first year it hasn't gotten me down. I thought about it of course and still remember it like it was yesterday. But  I didn't sit moping about it. I normally feel really anxious leading up to it, apparently it's quite normal. But it was lot less this time. Just seeing Jacob now, a crazy three year old is so different to what I thought he'd be like now. I really wish the me then could have come and met the me now. But then it wouldn't have been so much of a journey would it?! 

Jacobs had two check ups since the last blog. His vision is slowly improving. The IAC has left behind alot of damage and they've seen slight improvement each time. His retina has finally reattached but we are just playing the waiting game on the vision. He can see around two metres in front now which has dramatically improved from the 20 centimetres he could see 2 months ago. He does brilliantly at home and is slowly starting to be able to point things out in books again. He still doesn't manage depth or change in surface well. So steps, kerbs, shadows. He stops and panics alot. Steps, he tries to sit down and shimmy down them. He did this on the underground last week and I absolutely went into meltdown over the germs. He has to be carried alot in new or unfamiliar places too. It could improve, it could not. He's still not fussed over his iPad, and he only likes things on TV that he has seen a hundred times before. Which is Peppa Pig at the moment. I hate the spoilt little brat. I wish one of her little mates would give her a slap.
The good news is that Jacobs tumour is stable still. As tough as the vision thing is, if it means he is finally free of this nasty little disease, then it's worth it.

Jacob starts preschool in September, he will be going four mornings a week. He's moving up from the toddler room! I'm so excited as it will be great routine for him and I know he will love it. He's going to have a key worker all to himself which is brilliant, so I know he will be well looked after. They normally have around 8 children to one adult, but his nursery have got some additional funding for Jacob so he has the best care possible there. I was really upset at the thought of him having "extra help" at first, but at the end of the day, if it alleviates pressure on the nursery and makes Jacob more comfortable then that's fine with me. I wouldn't want him to go anywhere else and I love the girls there and know they'd come to me if they had any questions or there were any problems. I'm also looking forward to spending some time with Alba, just the girls! Jacob isn't really into baby groups anymore and all the ones Jacob was going to at Alba's age, he isn't interested in, so she kind of misses out. So I will definitely be taking her to a few groups. Although I'm sure she will just cling onto me for dear life when approached by a stranger!

We've had some glorious weather here too! Here's a few pics from recently, we've had a few little adventures to the seaside and the Natural History Museum too! Oh and to see Queenie! 

Last day at nursery! 

Hope you've enjoyed this little update. I'd say I'll try and keep these coming regularly, but I can't promise anything. Maybe my kids will start enjoying quiet, still activities soon...

Slowly getting better...

It's been two weeks since I last wrote, shortest gap in a while! Haha. Jacob finished his steroids a few days after my last post, and he was so unhappy for a fair few days afterwards. Luckily, it was half term so he didn't have to go to nursery, but I wouldn't have sent him in anyways to be honest. I managed to start putting his steroids into his porridge in the mornings which was great. And his appetite was still crazy for a fair few days afterwards. I really wanted to get him weighed but just never got round to it. And then last week he got a sickness bug so probably lost everything he'd gained anyway! The last three or four days, I can say he is finally back to himself. I didn't think it would ever come, the tears and screaming was so draining. I was wishing the days away. He's still a bit up and down with some people, if Rich picks him up from nursery, he's quite funny with me for a little while when he gets home. And he's still being mean to my sister but I think he secretly knows how much it's winding her up. Haha.

So, Alba turned one on the 4th! We bought her a wooden play kitchen for her birthday, it was obviously for Jacob too but we had no idea what to get her so went with that. And oh my goodness, I love it. Screw the kids, I've played with it more than anyone! I sit there arranging the fridge and counters, putting the casserole dish in the oven. The fun is endless! Evidently, I need to get a hobby. Its so cute though, and was only £65 from Asda. The wooden one I originally wanted was nearly £200 and I just couldn't justify it. Plus, I wouldn't have even let the kids touch it! Jacob was really good on Alba's birthday, I though he'd want to tear all of her presents open himself but he was so sweet, giving them to her and helping her open the kitchen. (Which I wrapped after spending 4 hours building the thing!) We spent the day at home and had everyone over for dinner in the evening. 

We all went swimming on Sunday for the first time, I've taken Jacob before and we went on holiday of course, but all four of us went for the first time and it was really good fun. I've decided I'm going to try to take Jacob every Sunday. He's so confident in the water which is great, and I want him to learn how to swim soon! I was quite alot older when I learnt and always said my kids would learn while they were young. I don't think actual lessons would be very good for him at the moment, especially while he has poor vision. So for now, we will take him and try to teach him the basics then look into it more when we know what's going on with his sight. He seems to be slowly improving. Or we are just getting used to it. Somedays he seems so much better, and others worse. It's so hard to tell. 

We are back at The Royal London next week to see if the swelling has gone down. I don't know what to think and to be honest am trying not to either as it is so easy to drive yourself crazy.

Look at this pudding. I couldn't get any photos of Jacob as he was like The Flash, running around like a loon.

We are finally back to calm nursery drop offs too, which is so nice. He hasn't cried this week and even went strolling in himself yesterday which was great. I requested that the Visual Impairment Teacher stopped going in to see him for the time being. It upset him so much and made him not want to go to nursery which has never been a problem. And while he is the way he is, I'd rather he felt calm and secure. And the nursery staff are just amazing with him. I know if there were any concerns, they wouldn't hesitate to tell me.

This sunshine does wonders for your kids mood too doesn't it!? Jacob just spends all day outside. Parenting is so much easier in the summer!! Although, Alba has started to climb and the girl is sending my anxiety through the roof!!! Jacob thinks it's brilliant. "Mummy look at Alba!!! She's such a brave girl!!!" No, Jacob, she's crazy!

Day 1.

Today was our first appointment at Great Ormond Street Hospital for Jacob's new treatment. My brother-in-law drove us today as we thought it was a quick consultation appointment, then he would wait and bring us home. That way we could also take Alba with us, meaning she had one less day of being looked after by someone. But, a quick appointment it was not! I didn't realise Jacob would be having bloods taken today so after his appointment being an hour late, we had to wait around for the numbing cream to take effect and then have his bloods taken. Over 3 hours in total. Add the two hours driving there and two hours home, well it was a very long day. Both kids did really well and it was quite a low stress day. I just felt awful for my poor brother-in-law waiting for us for all that time!

Rich said he felt alot more relaxed than he thought he would today, because we know the nurses on the ward and we know the hospital well. And I kind of see what he means, but I'm still so nervous about the procedure and keeping my little "twonado" still for four hours afterwards. I am armed with the iPad and Peppa Pig! I bought some colouring books and new pens to help keep Jacob occupied over the next couple of days, and I'll take some of his books and toys. And hope for the best!

I've climbed into bed early tonight as we have lots to do in the morning. We dont need to leave until around 11am so have plenty of time as the babies are normally up by 7am. I should do some of it tonight but all I can think about is sleep!