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!

Two kids is tough!

Like the title says...oh my goodness. My biggest fear when Alba was born was that she would get reflux. Jacob had it and it was absolutely horrendous. He ended up on lactose free milk and about four different medicines. I remember spending hours pacing the garden in a bid to get him to stop crying and to sleep. So, when Alba was born, I bought anti reflux bottles and a sleep positioner that keeps the baby at a slight angle. I also made sure I kept her upright when feeding and for a while after. But the reflux god had other plans. After what I originally thought was colic, a horrendous red rash, violent hiccups, sneezing like crazy after feeds and more sick than I have ever seen (out of her nose and everything!) set the alarm bells ringing. A little visit from the health visitor confirmed it all. Alba has reflux and a big fat milk allergy. Fancy bottles be damned. They don't prevent a thing! For the last two weeks, I've spent most evenings, actually most of the day alternating between crying and wanting to scream. Alba literally could not be put down until about two days ago. Literally, if I even motioned to put her down, she started this horrendous screaming like someone was yanking her limbs off. It took me hours to get ready, and I spent the best part of the morning jumping in and out of the shower, running around in my underwear or sitting on the bed crying because I literally couldn't stop holding/rocking her for more than 30 seconds. I actually started to get up before the kids woke so I could get ready for the day. Everyone would say "don't worry! Stay in your PJ's!" But I can't do that, I never have been able to. I have to get up and get ready for the day. And I have never been one to ask for help. But I definitely needed it the last two weeks. My sister has been brilliant. Coming over after dropping Teddy at school so I can get things done. Needless to say, my house looked like something off of Kim and Aggy for a while there. Alba was given a prescription for lactose free milk on Thursday and since then she has slowly gotten better. She even fell asleep in her Moses basket by herself yesterday afternoon! I had to take a photo and send it to my Mum who is on holiday because I was so excited. Hopefully the stinky lactose free milk is the answer to our troubles!
Needless to say, Jacob has had a lot of TV and iPad time during the last couple of weeks. I have honestly felt like the worst mother in the world to him. All he has heard between Alba's cries is "in a minute". During the odd time that Alba has slept for more than ten minutes, I have done my best to give him all of my attention. Everyone says "he won't remember!" which is fine, but I will. We are slowly getting back into a routine and Alba has started to sleep for longer stretches in the night. Jacob didn't sleep through and had a bottle in the night until he was about 14 months, so I'm seeing it as a bonus if she sleeps through anytime in the next 12 months!

Alba has started smiling which has been lovely! Not very much I might add, but it's crazy how one little gummy smile can make you feel better when you feel like hiding in the bathroom with the door locked! 

A few photos from the last few weeks...

We went fruit picking at a farm near my sisters house, it was so lovely! Definitely recommend it. I had never been which was mortifying to Rich as he used to always go as a kid.

Jacob had his six month oncology checkup at Great Ormond Street last month, he's doing really well and now doesn't have to go back for a year! We still have to go to The Royal London regularly and we are there this Wednesday. Jacob has now been stable for a year which is amazing! Obviously this can change at any time but hopefully not! We got the train for the first time, I thought Jacob would love it, but he clung to Rich and me for dear life. I HATE the tube, I just get so travel sick and hate the millions of people and shoving around. Basically, I'm a wimp. He was a bit braver on the way home and had a little look out of the window. As soon as we got off, he was asking to go back on. Typcal!

CHECT Members Weekend.

So the sleepless nights have continued, and I honestly haven't had the energy to write a blog until now. And to be honest, we haven't done much where Jacob has been so grouchy from lack of sleep, which has therefore made me grouchy. I tried the controlled crying to get Jacob to stay in his cot after coming into our bed for two weeks, on the first night, I gave in after half an hour of absolute blood curdling screams (our neighbours definitely hate us) and on the second night, he went back off on his own after about twenty minutes. But was up at 5.15am. And the next day was a ridiculous o'clock start again. I really don't know which I prefer! In our bed he will sleep until around 7.30am which is glorious, but I get hardly any sleep due to the little size 3 tootsies in my back/ribs/eye.

We went away to the CHECT members weekend this weekend gone and I knew there was no point in taking a travel cot as Jacob wouldn't sleep in one the last time we went away, so we just accepted that he would be sleeping in with us and hope that coming home would be a new start to him sleeping back in his own cot.
The weekend was at the Northamptonshire Billing Aquadrome holiday park. I have never stayed in a caravan in my life so didn't really know what to expect. Sophie, Ross, Teddy, Aaron and Lou came too so we had one of those huge static mobile home things. It was so cold in there! And I didn't really pack as well as I should have, I just launched loads of stuff into a bag and hoped that would do. What I didn't pack, and really wished I did, was socks. I had freezing cold feet both nights. Caravans should carry a cold warning label. Or I should just think about where I'm going and pack more appropriately. 
It was really lovely to see some of the families we've become familiar with over the last year or so. I met a lady at the Carrots Nightwalk last year who's little boy had an enucleation, and she made me feel so much better about the whole situation and I hadn't seen her since so it was really nice to catch up with her too. There was also a family who we last saw when they found out their little girl was to have her eye enucleated, which was obviously a huge day for them, and it turns out they were staying in the caravan next to us which was brilliant. I had asked about their little girl everytime we were at RLH but because of patient confidentiality, they wasn't allowed to tell me how she was doing. But she seemed absolutely amazing, and she really took a shine to Jacob which was adorable. 

The weekend was really overwhelming in a way. It was like everyone had this mutual respect for each other because you all know what the other has been through or is going through. Everyone was so friendly and you all had something to talk about together. 
On Saturday, CHECT arranged for everyone to have dinner together in the main venue and then it was followed by an open mic night. It was amazing. All of the girls, nicknamed the "CHECT Princesses" performed "Let it go" from Frozen, which Jacob was absolutely mesmerised by. They had most of the people in tears, including me obviously. I was sobbing by the end, I had to rush back over to our table to hide because I literally couldn't stop. It was so amazing to see such a brave group of girls. Most of them had an artificial eye, and it made me feel so positive for Jacob. They were so confident. Since Jacob had his eye removed, I constantly think about how he will grow up. Will he be confident? Will he let it hold him back? And if those girls are anything to go by, these kids are so brave, I have nothing to worry about with my little bulldozer. 
The CHECT staff also performed "Like A Prayer" which was brilliant! It wasn't until this weekend that I realised that the charity actually only have 9 members of staff. It is unbelievable how much difference such a small group of people can make to so many families. Lesley, our support worker is like a family member now, she is absolutely amazing and you could ring her up for any little thing and she will always have time for you. Jacob actually held his arms out to her this weekend too which was a big deal! He doesn't go to anybody, so I think she was really pleased! 

We left quite early on Sunday, just so we knew Jacob would sleep on the way home as he doesn't do well on long car journeys! He was really unsettled at bedtime last night too, which we half expected, but he did stay in his own cot until 5am, which wasn't too bad. I did bring him in with us, mainly because I knew after the late nights at the weekends, he needed more sleep, and he crashed straight out again until 8am, which was lovely!

There were so many lovely photos from this weekend so I apologise in advance if you get bored looking through them!

   

Seaside Saturday

We have had a busy weekend! We spent Saturday at Clacton-on-sea as my mums side of the family (which is huge) all hired caravans for the weekend, so we gatecrashed for the day on Saturday. Jacob slept absolutely terribly on Friday night, he was up at 3am and that was it. Awake for the day. The drive to Clacton was about an hour and a half so we'd arranged to leave at ten which is Jacobs nap time and hoped he would sleep the whole way. He managed to hold out until ten which really surprised me seeing as he was up at 3. Although he was extremely grumpy! He's totally gone off cereal for breakfast too and will only eat his toast or chocolate chip brioche. I bought some of those Innocent Kids smoothies on sunday so hopefully he will like those so I know he's at least getting something good in him in the mornings! I think he's still teething as he has been extra dribbly and the bibbles have come out again! They ruin all of his nice outfits as they don't really match and I don't want to buy loads more as he has so many. Just none seem to match!
We took Jacob to the seafront in Clacton. Its mostly a pebble beach but he absolutely loved it! He kept trying to go into the sea, and loved the water running up over his feet. He was so excited and actually managed to run around on the sand and pebbles. Not bad considering he's only been walking a few weeks! Although he does think he's some kind of Olympic sprinter now so we've had lots of bumps and bruises recently!
We spent most of the afternoon at my mums caravan with all the family and Jacob seemed to really enjoy himself, which was quite surprising with so many people there. He had quite a late night too by the time we left so was quite unsettled most of the night, but he stayed in his own bed all night which was brilliant.

Lou and Aaron asked if they could take Jacob out for a couple of hours on Sunday afternoon. They've looked after him before so I wasn't worried at all. And he loves them so was more than happy to go! Rich and me went to Tesco on our own which was really weird! Jacob came back all ready for a nap after Lou's dad played football with him and he was running around her garden but he decided sleep was not on the cards! He has been so funny with sleeping still and his naps are all over the place. Any tips would be greatly appreciated!!!