I have an 18 month old!!!

I cannot believe I have an 18 month old, I also cannot believe that he is going to be a big brother next summer.
Jacob has become more and more of a little character over the last few months, and although still not saying many words, he does not stop waffling away.
His favourite things to say and that we will understand is "no", " what's that?", "Lex" (our dog), and he makes "mmm" sounds for food he likes. Which is everything. After a wobbly beginning of not wanting any of my homemade purees, he has always been a brilliant eater, I took a really relaxed approach to weaning. I did a mixture of baby led and purées, although he totally refused my purees, he loved the Ella's Kitchen ones. I was so excited to start weaning so when he was about five months, I spent a whole Sunday in the kitchen making every puree you could think of. They all went in the bin eventually as he hated them all. But to be honest, why would anyone want just broccoli or cauliflower? (Although one of his favourite foods is actually broccoli now!) I tried some with apple, sweet potato, parsnip, you name it. He wasn't having any of it. So it was Ella's Kitchen to the rescue. And then at lunchtime, it was always finger foods. Sandwiches, pasta, fruit, veggie sticks, those Organix carrot wotsit things which he loved. And if he didn't eat it, we'd leave it a couple days and try again. He always had lots of variety. My sister used to say "there's too much choice, he won't eat anything!" But he would always clear his tray. We were really lucky through chemo as he never really went off food. I'm guessing he's going to be like me and shove anything away. I won the egg battle last week. I have been trying for weeks to get him to eat some scrambled eggs. And he did it. I was so excited, I put it all on Facebook and rang Rich all excited. So yes, in regards to food, Jacob is a little piglet. 

He has become quite the tantrum thrower. I'm hoping he's getting the terrible twos out of the way before his sibling arrives. He is currently chasing the dog around with his Henry Hoover and trying to hit him over the head. All fun and games!

Spaghetti Bolognese?

Since announcing that we are expecting baby number two, a lot of people have asked about Jacobs condition and what the chances are of this baby having it. Rich and me were both tested for the gene mutation which Jacob has and we are clear, so aren't carriers. So this baby has the same chance as any other baby of having Retinoblastoma. We will be having the cord blood tested when the baby is born, just to be sure. The chances are very small, but at the same time, they were with Jacob too.

The sickness has finally started to pass and I have actually had energy to do housework this week which has been nice. I'd been doing the absolute minimal I could get away with for the last two months and I'm a big believer in "clean house, clean mind!" More like "clean house, happy Char." We've started to go for a walk again most days too, and if not, Jacob has been getting wrapped up and playing in the garden. He just loves to be outside which isn't ideal in the British winter time!

 Showing off his little brother or sister!

Adventuring.

Rich and me have been trying to decide what to get Jacob for Christmas, (I've bought about 3 little things!) The only thing He's really into at the moment is cars, and balls (still!) And he likes Toy Story and Monsters Inc. Actually he likes anything on TV. Could be a cooking programme, documentary on paint drying, he'll watch it! I think we are going to go for a trainset of some kind and just books, puzzles and crafty stuff. I bought him (me) some play-doh last week which he (I) really enjoyed playing with. To be honest at this age, they're more interested in the wrapping paper than what's actually inside!!

Jacob has a birthday party at Wild & Wacky tomorrow evening, and I have my work Christmas party so Rich is taking him alone. Its his first proper birthday party at a play place so I'm a bit gutted not to be going but I'm sure Rich will take lots of photos and I can feel like I was there!!

One year later...

Today marks a year since Jacob had his eye removed. It was only our second time at The Royal London Hospital but definitely the scariest so far. Because Jacob was having an actual operation, it meant he was last on the morning list so wouldn't be going down to theatre until around 11am. Mr Reddy, the Rb consultant came to see us in the morning and explained what would happen, then they drew a smiley face over Jacobs right eye so they knew which one would be being removed. The smiley face was a bit ironic really because nothing about the day was worth smiling about. I had absolutely dreaded this since the week before when they told us it would be happening, I was convinced that it would be a different baby coming back and I just felt that it was my fault and I hadn't made him right. Like I'd made a faulty baby. I was so scared about how he'd look, which is awful, but I was so worried about what other people would say and the fact that he is too young to defend himself. I just didn't want him to feel any different to any other children as he grew up. When Jacob went down to theatre, after leaving him there, I felt this huge sense of relief come over me, it was so strange, but it was like I'd realised that a huge bit of the cancer would be gone. The nurses told us he would be gone a good hour and a half so we went down to the restaurant, which is where my crumble obsession started. The wait felt like forever, we sat in our room for what felt like hours. When they called for him to be collected from recovery, I was so scared. I just didn't know what to expect. He was really dosed up on morphine so wasn't awake, and they wheeled him round on a recovery bed. He looked so tiny laying on there. The bandage covered his whole right eye. It was huge. They took us to the ward upstairs as we were staying overnight, our first of many overnight stays! Jacob was so out of it all night, my mum popped to see us in the evening and just started crying as soon as she saw him. I don't think anybody was quite prepared for how big this operation really was. And he was so tiny at the time, it was quite scary. I slept in the cot with him all night, which was not comfortable but I didn't want to leave his side. He just held my finger all night and every few hours the nurses would come in and top up his pain relief. Rich wasn't supposed to stay, but the nurses didn't say anything so he camped out on a chair and stayed all night. The next morning Jacob was more with it, and when he woke up properly and looked straight at us, it was priceless. He'd never really looked at us before and looking back through photos from before his op, he was never ever looking at the camera. It was really amazing to finally have him see us properly. The doctors said we probably would have been out of focus before and he could never really fix on anything so I can't imagine how it must have felt for him too. 

We went down for breakfast, which was such a disaster, to begin with one of the chefs gasped at Jacob and his huge bandage and said "Oh what's happened to him!? Is he okay!?" I just looked straight at him and said "he's had his eye removed." He looked really uncomfortable and walked away. The first of many of these situations! Then after we sat down for breakfast, I went to shake up my orange juice, forgetting that I'd already taken the lid off. It was absolutely mortifying. I was covered head to toe in fresh orange juice, WITH BITS! Rich thought it was fantastic. Me, I was wearing a brand new white tshirt, I hadn't bought my shampoo and conditioner with me, let alone a hairbrush and I just wanted to cry. The walk back to our ward from the restaurant wasn't exactly a short one either. To say I got a few funny looks would be an understatement. 

All of my family came to see us that morning and my stepdad and mum was driving us home so everyone thought they'd just come up and wait as we were supposed to be going home at two after Jacob had his dressing removed. Laura and Tara, two of Jacobs nurses came round about midday to remove his dressing. I didn't want to look, I was expecting this big, swollen bruised mess where his eye used to be. But it wasn't too bad at all. The nurses said it actually looked really good compared to how some kids have looked after. Mr Reddy then checked to ensure that it was all as it should be, and then we were allowed home. We got sent home with Jacobs eye kit and a course of antibiotics which were a nightmare to get him to take. It was this bright pink, sticky as hell stuff that had to be kept in the fridge. His eye seemed to heal up quite quickly, it didn't look half as bad as I thought it would, and to be honest, any worries I had about how he'd look were totally wiped out by the fact that he could see. And everytime he looked at us, it was just so amazing that nothing else mattered. Now, the beady eyed little monster doesn't miss a thing!  

Jacob and his ironic smiley face. And the bear my mum had made for him for his operation, it's made of some of his first sleepsuits!

Back from the op, he is so tiny here.

A priceless moment.

Just after the dressing was removed. 

We are still struggling with sleep at the moment, we've managed to drop Jacobs second nap and put him to bed at 7pm but the last few mornings he's been waking again between 4 and 5 and not settling off unless he's in our bed. I'm really hoping it's just a phase and this nap transition is behind it. He has his ony nap from around 11-11.30 until around 1pm, then has lunch. But I'm hoping to push the nap back to more like 12.30pm so he can have lunch then go for a sleep, and that's more in the middle of his day too. I've read that if they're going through a developmental growth spurt, it can disrupt their sleep patterns. I'm not sure how true it is but this week Jacob has learnt how to build his stacking cups. We help a tiny bit, but he manages to put them all on and mostly in the right order! I was so pleased with this, because I was a little bit worried about how his hand eye coordination will develop with just the one eye, but I don't think there's any problem at all. Well I hope not! 

Smartie pants.

Check out the bed head!

We braved the rain again on Tuesday morning and went for a walk in the woods by our house. I didn't take Jacobs stroller and just let him walk, he picks up EVERYTHING! He has a particular obsession with pine cones. He was covered in mud by the time we got home so everything had to go in the wash. I don't mind a bit of dirt to be honest, as long as it can be washed, get muddy. We went again yesterday too, but to feed the ducks this time. He just loves being outside. On Monday when it absolutely chucked it down all day, he stood at the back door crying because he couldn't go outside. I think we are going to need to find a new hobby before the winter hits! 

My little adventurer...

Collecting whatever he can find.

Buds. 

The gruesome twosome on our way home from feeding the ducks. 

It's Whitechapel Wednesday again...

Today we had Jacobs first check up since the amazing news four weeks ago. He had a vision test yesterday to make sure he's still developing as he should be in regards to his sight in his left eye. He did really well, it's obviously difficult to judge at his age as he can't say what he can and can't see. The appointment only lasts ten minutes and it's quite a drag having to go all the way to Whitechapel for his eye test, but they are so fantastic and know all about Jacobs condition so it's the best place he could be. I didn't hardly sleep last night, I felt so sick and nervous at the thought of today and just thought that they're is no way he could go seven weeks without treatment without some regrowth. Everyone tells me to be positive but I just can't be because I don't want to be disappointed. We were on the morning list today which is so much better. And they were running nice and smooth so Jacob went down to theatre at 8.30. As usual we went down to the restaurant and they were still serving breakfast so there was no crumble for me today! I did eat a whole cooked breakfast though. By the time we got back, Jacob was ready to be collected from recovery. Like last time, it was really quick compared to usual so I started to think that it may be good news again but still didn't want to get excited. He was so distressed today which was really unusual for him. He normally has his bottle of milk and then goes back to sleep. But he refused the milk today and was so upset. It took me a good half an hour to calm him down and I managed to sneak in a little nap too. It is so so tiring hanging around there waiting for the results and we have to leave home at 6am too so by the time Jacob comes back from theatre we are normally so drained. It felt like hours until Mr Reddy, Jacobs consultant came round to give us the news. Jacobs tumours were still stable and he didn't need any treatment again! I burst into tears and thought it was a joke. I just couldn't believe it.

His nurses and consultants are so wonderful. Because Retinoblastoma is so rare, only the Royal London Hospital and Birmingham hospital can deal with it. The nurses love Jacob and they make us feel so at ease when we are there. Rich is 30 on Friday, and it will also be a year to the day when we found out Jacob was poorly. To say Rich had a rubbish birthday last year would be an understatement. The nurses all knew this so today they surprised him with a birthday cake and card. It was so lovely and I think Rich really appreciated it. It was such great news that Jacob was still stable too as I was so worried that if we'd had bad news, it would have really brought back all the pain we felt at this time last year. The pain of what Jacob is going through never goes away but you get used to it. The best thing we ever did was try to keep life as normal as possible for everybody. We aren't back at RLH for six weeks now! That's the longest break we've ever had so we are feeling very grateful today.

Sleepy boy after theatre.

Look at that pout. 

Birthday boy!

So Jacob is officially walking now! I cannot believe I have a toddler! He is still very unsteady but he's like a different child. He has really become more of a little character in the last few days. He doesn't stop shouting and talking and trying to play games with you. I have felt so unbelievably proud of him recently. More so than usual. Just because he has come along so much and really is becoming an amazing little boy. I may be being a little bit biased! My sister just tells me how much of a little rogue he is, but I blame Teddy for teaching him! Haha. Teddy and Jacob have really started to play together and I love it. I always hoped that they would be close after finding out we were having a boy. Teddy has started to share everything with Jacob too. Sweets, toys, play-doh! I love it. 

Sophie is looking after our friend Kirsty's guinea pigs while she is on holiday, and Jacob loves them! We went there for dinner tonight and the boys were giving them their food, although Jacob kept trying to eat it himself. I think we will get Jacob a little pet as he loves animals so much. Although I'm not sure our dog would cope very well! 

Hanging out with Margaret and Mabel. 

I had to share this photo as I thought he looked so cute in this outfit. It was Teddy's and he looked so cute in it too. 

Chief rogue Teddy.

Sleepovers and Strollers.

Jacob was supposed to get a new artifical eye on Thursday, but they called Wednesday to say his prosthetist (person who makes the artifical eyes) was off sick. I was gutted because I always look forward to him getting a new eye, although the process isn't very nice. Particularly this time as he hasn't had a new one since March and he's really outgrown it and the colour is wrong. Also, where it is too small now, he keeps moving it and turning it upside down, which doesn't make a difference to the pupil or iris shape, but the actual eye is a completely different shape on the top to the bottom so it can rub the socket. He's gotten so good at having it removed and put back. When he had his eye removed, they give you a little "eye kit" for removing, cleaning and taking care of the artifical eye. It comes with a little sucker plunger thing that you just stick to the artifical eye and then you just slide it out. It isn't as horrific as you might think, and to someone else it probably is awful, but to us, it's life. His eye appointment has been moved to the 22nd of this month. I can't wait.

Rich had a work night out at Newmarket on Friday night, he was staying out overnight so Soph and Teddy came to stay. I do normally stay on my own because I use it as an excuse to go to bed at 8pm and not feel bad! We were naughty and all had a McDonald's for dinner. It's only the second happy meal Jacob's ever had because I'm a bit of a monster when it comes to his eating and like him to have pretty good stuff. He inhaled a fish finger happy meal then started on my burger. He's such a little piggy. Although he's had a rough few nights again so I'm wondering if it may be a growth spurt! We obviously sat and watched "Frozen" again as Teddy loves it too, then Soph put me through the torture of Big Brother. I never get into any television because by the time I've put Jacob to bed and tidied up, I'm normally too tired and just go to bed myself. And then if I do start to watch something, I ask a million questions about what's happening and Soph gets annoyed with me. Teddy stayed up with us until 12.30am, he just did not want to sleep. And he thought it was hilarious that he was in bed with Soph and me. Real sleepover style! It was such a challenge to keep him quiet so he didn't wake Jacob up! But he was being so hilarious that Soph and me were just as loud laughing. Jacob woke up at 6am, to which Teddy jumped up and got over excited. So we spent the morning dealing with a very grumpy Teddy as he'd only had six hours sleep! We poured him 4 different cereals before he finally settled on Frosties and he is currently battling having a nap. All part of the fun!!! 

8pm...

Midnight...

6.30am... YAWN!!!

Brunch! This kid will eat anything.

I finally had to accept the fact that my pram/pushchair is no longer practical and change to a stroller. I was so gutted because I love my pram and it was so lovely to push and really comfy for Jacob. But it was bloody huge! I called it the monster truck. Soph took me to pick the new one up on Friday, but by the time we'd eaten dinner it was too late to go test it out. So I made up a reason to go to the shop this morning so I could take it on a test drive. It's nowhere near as nice as my pram to push as it doesn't have the monster truck off roading wheels. But Jacob really prefers it I think, he can look about. He spent the whole trip to the shop pointing and saying "sattt!!" which is "what's that?!"

He has started to make so many new sounds lately and really tries to copy you, it's hilarious. He's getting a lot braver with trying to walk too, he's had a few little stretches but then gives up and crawls as he can get there much quicker! Hopefully not long now, everyone tells me I'll be wishing he wasn't but I honestly cannot wait, he's so into everything anyway and can climb EVERYTHING and I can't leave him alone for five seconds now so I don't think it will be much different, well I hope not! 

Teddy testing out the new wheels.

Thanks for reading!

A Good Day!

Today we had Jacobs usual two weekly check up at the Royal London Hospital. We were switched to the afternoon list yesterday which was a bit last minute, and I always dread it more as Jacob is awake and nil by mouth for a lot longer than if he was on the morning list. He can't eat after 7.30am on the day when he's on the afternoon list, so when he point blank refused his breakfast this morning, I knew it was going to be a tough one. They always seem to run later in the afternoons, which means Jacob goes nearly 24hours without eating if he refuses his breakfast. Luckily, he went down to theatre around 2.35 today which was much better than usual. We've waited til nearly 5pm before. He went absolutely crazy this time while being put to sleep, 3 nurses had to help hold him down because he somehow gets the strength of an angry Dr Bruce Banner when he spies the gas mask. I thought we'd turned a corner at the last check up as he wasn't too bad, but nope. His little face just staring at me as if to say "Mummy, why are you doing this to me again?" Is absolutely heartbreaking. But as always, I just think "it's got to be done." While he's down in theatre we always go to the restaurant to kill time. And for me to eat whatever hot pudding they have with custard. It's like what you used to have at school! Absolutely delicious. The only perk of a normally stressful day and being a little food piggy, I actually look forward to it. And today, someone must have been doing some voodoo on me because they sold out. And it was apricot crumble. ANY kind of crumble is my favourite. I very nearly cried in the middle of the hospital restaurant. I settled with a disgusting chicken salad sandwich and a snickers. But by the time we got back to the ward, they were ready for me to collect Jacob from recovery so my food hardly got touched anyways! He'd only been gone 30 minutes which made me think that he hadn't had any treatment. He's normally gone around an hour. I daren't say anything to Rich though as I didn't want to jinx it. But I was right! Jacob didn't need any treatment and his tumour was stable. This hasn't happened since he was having chemo. I honestly feel like I've won the lottery. We've got a four week gap until we are there again, we've not had this for so long that I think I'm going to feel a bit lost in two weeks when we would normally be going. I'm not going to carry on like this is it and it is coming to an end because I am sure Jacob will need more treatment in the future. But for now I'm just enjoying today's news and a bigger break between appointments! We literally do take each appointment as it comes as we know it can be so different every time. But today was a good one!

Setup for the day, Frozen on the tablet and books in hand...

The only bottle he still has, post EUA. 

Inhaling his blueberries after he finally wakes up...

On a different note, Jacob has started to take steps! I was quite worried about this as I thought this may be where he fell behind in his development. We were told that he may have developmental delays due to the chemo, but he crawled at 7 months which I've heard is quite early and he's brilliant at climbing and playing with toys and he says quite a few words. So the only thing really left was walking. He's so unsteady still and to be honest I think a bit lazy too! Because he can crawl and has crawled for so long, he knows he can get around that way so just does that. But he is getting funnier and becoming his own little person more each day. Since our road trip last week, he's become obsessed with Frozen. He will sit there for the whole hour and a half staring at the screen. And then if I put it on again, he does it again. I'm going to have to start a "tv time" rule. 

Here comes trouble...

"Do you wanna build a snowman?"

Oh, and incase you were wondering, we are still teething at an alarming rate. I should have shares in Teetha granules and Calpol...