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. 

Monday movie day.

Jacob slept reasonably well last night, I tried the rousing him a few hours after he went to sleep as my friend Kayleigh said it can sometimes do the trick. So I tried at around 11pm, but there was no waking the little monster! He stirred a little bit but thought I'd just leave it at that as to be honest, I was petrified of him waking up and doing his 3am screaming session there and then. He woke up quite a few times after around 3.30am, but none of the screaming like usual. He woke up for the day around 6.30 which is earlier than when he's in our bed, but I'll take it if he is in his bed! We battled the naps in full force today, Jacob started to get grumpy at around 10am as usual, but we really wanted him to just hang it out until after lunch because as he is only having one nap, I don't want it to be too early! We decided to go for a rainy walk with the dog as he has never fallen asleep in his new stroller so I thought that and being outside would keep him entertained until lunch. How wrong was I... He fell asleep in his stroller. At 11.45! All I needed was another 45 minutes so he'd eaten lunch. Typical! I tried to wake him up but he wasn't having it so moved him into his cot. He slept until 1.30pm which actually worked out quite well because it was still kind of lunchtime, although he woke up so so grumpy where he was starving! We normally have lunch around 12-12.30 and he didn't have a morning snack so he must have been ravenous! 

A bit of a rubbish picture, but couldn't resist a little selfie on our walk. 

Nap battle fail.

As the bank holiday was such a wash out, as always in England, we had a total movie day. After a supermarket trip in which we let Jacob walk around for the first time, he went straight for the balls down the toy aisle, we spent the afternoon watching The Little Mermaid, Beauty & The Beast, Casper and The Lion King. And then before bed, we watched the vlog I follow on YouTube called The SacconeJolys. I absolutely love it, it's just a little daily vlog of an Irish family and their lives. They kind of gave me the idea to start this too. Check them out here if your a bit of a reality fiend. 

Jacob wore real skinny jeans today for the first time! He looks so grown up. He's wearing all Next today. Their clothes are definitely my favourite for Jacob. 

Jacobs gone to bed quite well at 7pm, so fingers crossed for a good night! Hope you've all had a great weekend, although I think most people have spent it getting soaked in icy water! 

More tantrums & Ice bucket challenges.

It's been a tiring couple of nights since Friday. We are still battling the transition from two to one nap and it's so hard! On Friday night, Jacob spent an hour screaming the house down at 2am before I gave in and brought him into our bed. He slept til 8.15 which was lovely, but it would have been much nicer if he was in his own bed! It was really nice for us all to wake up together and just relax in bed for a while, we don't normally get to do it because it's either too early so I come downstairs with Jacob, or we have somewhere to be. If it's a morning where we haven't got to be somewhere, I will normally bring Jacob into our room from his and we will watch tv and all have our cup of tea in bed, but it is so rare that this happens! Because Jacob woke up at 8.15, I thought he would skip his morning nap and have just the one after lunch, but bang on 10am, he wanted his morning nap. He slept for about half an hour, which seemed to be enough for the rest of the day, because despite extreme tantrums and crying and hanging off of me everywhere I went, the little boy did not want to sleep! We tried to put him down in his cot a few times after seeing the "tired" signs. This is normally the crankiness and he gets very whingey, and starts tugging at his ears and poking his artificial eye (which is just lovely.) We needed to pop out, and low and behold, Jacob fell asleep in the car at 5pm. I try really hard not to let him sleep past 4pm otherwise he is an absolute nightmare to get to bed because he's like a supercharged Duracell bunny if he sleeps past then. He had about 20 minutes in the car so was not a happy bunny when we woke him up for dinner. He's started to go to bed at 7pm too as his daytime sleeping has gone up the wall, and last night he just wasn't having any of it. He absolutely screamed the house down for an hour, it was so hard not to go up and sit with him, but we've done controlled crying with him before and it does work for us. So every ten minutes or so, I was going in, laying him back down and leaving again. My dad was visiting and after about five attempts he was like "it's a tantrum! He knows you'll go up, so just leave him!" I really hate it because he does get himself into such a state. I left it 15 minutes, and he went quiet, then five minutes later he was asleep. A crazy part of me thought that he'd sleep through as he'd wiped himself out throught his tantrum. But nope, 3am this morning and he was off again. I refused to give in this time as it would have been the 5th night this week he came into our bed. After 45 minutes of screaming and launching dummies across the hallway, I just stood next to his cot and he fell asleep. Probably another bad habit to get into, but one step at a time! He slept through until 7.15, so I can cope with that for today. My friend said it could be night terrors, as she had the same troubles with her little girl around this age. She said if you rouse them slightly around two hours after they go to sleep, it disturbs the sleep and therefore disturbs the pattern. So we are going to try that tonight! 

Jacob hasn't stopped toddling around now and everyone said how much harder it becomes once they're walking. But to be honest, I haven't found it much different, he is such a bulldozer anyway and climbs absolutely everything so I've had to have eyes in the back of my head for about 8 months now! The trouble now is that he actually wants to walk EVERYWHERE. In the supermarket, to the car, and if the front door opens, he's up on his feet and running for it! The neighbours must think I'm awful to live with because when I pick him up and close the door, the screams are like somebody is being murdered. We at currently battling the word "no." Jacob thinks it's the funniest word in the world because when I point and say "noooooo" in that voice that every parent seems to say it in, he just laughs at me. And then I laugh because I can't get over how cheeky he is. So it's going to be a tough one I think. Any tips!?

My little climber.

I could watch these two playing together for hours.

I did the "ALS Ice Bucket Challenge" tonight after being nominated by my sister. I think these things are such a brilliant idea, as long as people actually donate. I hated the "no make-up selfie" campaign to begin with as a lot of people were just using it as an excuse to post a picture and get likes, and not actually donate. After Cancer Research got onto it and people started donating, it was brilliant. So with the ALS challenge, I am all for it if people are donating, although watching people soak themselves with ice cold water is brilliant in itself. I did two buckets as I wanted to donate to CHECT too. They are such an amazing charity and I know it sounds silly, but I felt like I was cheating on them! Haha. Below is the video of me getting a soaking! It was SO cold. 

Good luck to anyone who gets nominated, and please make sure you donate! 

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 

WE NEED SLEEP!

So after the horrendous Saturday night with Jacob, I'd hoped that Sunday night might have seen him get back to his normal sleep habits. But apparently somebody thought it would be funny to leave me with the no sleeping, screaming infant as opposed to the sleeping (most of the time) quiet baby I'm used to. It was bang on the same time as Saturday night that he woke up. 11.30pm. After an hour, I gave in again and brought him into our bed. I knooooow it's bad! But I was so tired. Not that it made much difference because he fidgeted all night and then wanted to get up at 5.30. Talk about torture! I think the issue is that Jacob is ready to drop one of his daytime naps but it is so hard to try and work it out so that he doesn't go too early or too late. Yesterday we tried just the one nap after lunch. He only had around an hour which is a lot less than the 3 hours he would have over two naps but last night he went to bed earlier than usual, so 7pm instead of 8pm and slept through! So I had planned to stick to that today, but his second set of immunisations were today and apparently they give them sleeping drugs of some kind because as soon as we got in the car, he crashed out. At 10am!!! This was completely not part of my master plan!!! He's gone to bed okay, but I don't expect another sleep through! He has been quite grumpy today after his immunisations, and he got quite poorly last time after around 10 days so I'm hoping these ones don't go the same way. He did have the MMR on his first lot and I've heard that can be the one that wipes them out. He only had two today as opposed to five vaccines so fingers crossed he's okay this time!

Post imms snooze.

I got rid of Jacobs huge highchair today, it was a really lovely wooden one which also converted into a table and chairs but I really wanted him to have a booster seat that goes on our dining chairs so he can sit at the table with us. We try to all eat dinner together every night unless we are obviously having a late one. So I like for Jacob to sit at the table with us. I bought him a "Munchkin" travel booster seat. It was a right bargain at £14 and it folds up and looks like a bag so you can take it out with you. Obviously I'm not going to strut around the town centre with it, but it's handy to chuck in the car if we are going to my mums or something. He really loved it, but as always, most of his food made it's way to the floor. It was nice for him to actually be at the table with us too. 

Before the mess...

Oh dear...

Bathtime.

Im actually contemplating going to bed already and it's only 8pm. Wish me luck for tonight! 

More celebrating and a new trick...

We had a little birthday gathering for Rich on Saturday. Nothing big and fancy, just a BBQ at home with family and a few of Rich's friends. Rich got a new BBQ for his birthday so he couldn't wait to try it out. It was a really lovely day. I can't believe how much food everybody ate! We bought so much and everyone who came brought something too and nearly everything got eaten. Jacob enjoyed lots of birthday cake, and managed to make so much mess with his dinner. Jacob didn't nap all day because so much was going on and if he misses his naps we know we are in for a bad night usually. He kept waking up every hour or so after going to bed around 7pm, then once we went to bed around 11, he just would not settle back off so I gave in and brought him into our bed. I absolutely love having him in there because he can be so cuddly and I used to love just laying with him when he was tiny and didn't constantly want to run away from me. But on the other hand, I do really try not to do it unless it is a total last resort because I don't sleep well if he's in our bed and it can take a few days of controlled crying to get him to stay back in his own room. Which I hate doing!!! So many people have such different opinions on controlled crying, and I refused to ever do it for around a year. But when Jacob was still having a nighttime bottle out of habit and was waking at 4am screaming to get up, I thought we'd give it a go. And after two really horrendous nights and almost giving up because I felt like the worst mother in the world (and I was petrified my neighbours thought I was neglecting him!) he slept through on the third night. Which was amazing. He very rarely sleeps right through still as he normally wakes up and cries if he can't find his dummy. Which can sometimes be once or sometimes be five or six times. I'm sure he will sleep through one day...when he's 25 or something!

Enjoying dinner...

CAKE!

The dreaded moment when Jacob takes out his own eye happened yesterday. It is far too small now so has so much room to move around and if he rubs it, it can move so easily, and as we found yesterday, come out. He managed to get it out twice before we even left the house yesterday morning, but he was only on our bed so it was easy to find. We were on our way home from Tesco in the car when I turned round to say something to Jacob because he was in the back waffling away, to which I was greeted with a one eyed little monster. He was sitting there chuckling away, obviously because it doesn't make any difference to him whether he's got it in or not. So I was in the back of the car scrambling around for this tiny little prosthetic eye. It made me laugh because of all funny experiences with your children, I never thought one of mine would be searching for my sons little plastic eye because he had managed to take it out and launch it across the back seat of the car. I cannot wait until Friday so he has his new one! 

We ended up staying home today as yesterday was so chaotic for Jacob and after last nights horrendous nights sleep I thought we better try and have a more settled day. We had a family roast dinner and as always Jacob shovelled away everything on his plate. The boy eats anything which is so amazing as a lot of kids who've had chemo can tend to become fussy eaters. Rich is an unbelievably fussy eater and I'll eat anything so I was determined for Jacob to be the same and enjoy his food. Plus it's an excuse for me to make more fancy stuff for us! Like we do most Sundays, we went to feed the ducks in the pond just up the road from our house. Jacob always tries to climb over the edge into the pond, so you have to have eyes in the back of your head as he's so quick now! 

He's gone to bed quite good so let's hope tonight is a better night!!! 

Snuggling Ralph.

Today was Ralph's last day with us! I'm sad to see him go! 

My little piggy.

The boys at the duck pond.

My world. 

<3

A celebration.

So Rich's 30th birthday has arrived. Today has so much meaning to us, not only because it's his birthday, but it's also a year to the day that Jacob was diagnosed with cancer. It's been a very bittersweet day. I knew I'd have trouble dealing with it and last night I just felt this sense of sadness, it was 9pm and I remember so well where we were at 9pm on the 14th of August 2013. A&E in Harlow hospital. After finally giving in and googling the white reflection in Jacobs eye, and the only results coming up were "cancer." It was like the letters were written in size a thousand font and were flashing red. I just knew that's what my baby had. As it was so late, the doctors couldn't really give us any answers, but I knew by their faces and the way they were speaking that something wasn't right. When I asked the nurse if he should be following objects, she just looked at me in this way I'll never forget and nodded. We went home after being told we'd need to come back to the eye clinic in the morning. So after no sleep, we were there at 9am. We saw about 3 ophthalmologists who all said the same sort of thing; that he should be following and that his pupil wasn't very reactive in his right eye. We were then told to wait around for the paediatric ophthalmologist but it could be a while as he didn't have any appointments free and was going on holiday after that day. So we could either come back in two weeks or wait. So we waited. He squeezed us in around lunchtime, and performed an examination on Jacob's eyes. It was awful, I couldn't look but Rich helped hold him still. They clamped his eyes open with these hideous metal clamps and then used lights and other tools to look in his eyes. I just stood back crying, Rich said he still can't forget what it looked like. He said the only way to describe it was like his eyes had popped out of his sockets. The ophthalmologist called in another doctor for a second opinion and they were talking amongst themselves when he said "Yes, retinoblastoma." The room started to spin and I just fell to the floor. My 12 week old baby had cancer. Dr Vempali, the paediatric opthamologist was so wonderful. He was so shocked we knew what he was talking about. I explained that I'd googled it and he said there was no point in going over it all with us as we had a good idea about what it was and he said he wasn't going to sugar coat it for us. Jacob had Retinoblastoma. They don't do a biopsy as it is recognisable by appearance. He referred us straight to The Royal London Hospital and he was good friends with Mr Sagoo, who is one of Jacobs consultants so he faxed over Jacobs referral there and then. They called me within about half an hour to go through everything and gave us our appointment for the following Wednesday. It was six days away. The nurses at RLH were so brilliant at reassuring me that six days is okay, and that I don't need to panic. Obviously I spent the next six days in such a mess. All of our family and friends came over to see us, and see Jacob over the course of the week which was both amazing and awful at the same time. We just wanted to be normal, but all of the visitors reminded us that it wasn't a normal situation. We had to wait at the hospital for the afternoon of Rich's birthday for Jacob to have an ultrasound and MRI scan, this confirmed that there were indeed tumours in both eyes but thankfully his brain was clear. And all we had to do was wait until the following Wednesday. It was an absolutely awful experience, the first time we were to starve him and the first time we would have to watch him be put to sleep. We just sat in our cubicle with the curtain closed. When it was time for Jacob to go down to theatre, we'd agreed I would take him. It was truly one of the most awful things, I wouldn't wish it upon my worst enemy. He was already asleep when they put the gas over his mouth and nose so he didn't struggle, but I wasn't prepared for the dead weight he'd become. It felt like he had died in my arms. I fell to pieces and the nurses had to help me back to Jacobs bed. After the longest hour of our whole lives, he was ready to be collected from recovery. He was very distressed and obviously extremely hungry. We fed him and then just sat waiting for the doctors to come round. We said we would deal with whatever but hoped more than anything that he wouldn't lose an eye or need chemo. We never thought it was that bad. When the doctors and nurses and consultants took us into the parent room, we knew it wasn't good news. He confirmed that Jacob did have Rb, and the only treatment for his right eye would be enucleation. He was going to have his eye removed. I just sobbed into Jacob who was still asleep in my arms. This wasn't happening. Mr Sagoo explained to us that more than anything, this was to preserve his life. The pressure was so high in the eye that if it was left much longer, it would kill him. He then went on to explain that he would need six courses of chemotherapy to "mop up" any cells that may be left behind and to treat the tumours in the left eye. The two things we really didn't want Jacob to have to go through were going to happen. We were booked in for the following week for Jacobs operation. We left quite quickly afterwards. We didn't wait to have anything else explained to us, we just had to get out of there. The nurses said they'd call me the next day to go over some things after we'd had some time to process the day. And that was that. That was a year ago, and what a difference a year makes. We can't quite believe that it has only been a year. It feels like ten.

So today, Rich's 30th birthday, we are determined to pave over the pain of this day last year and celebrate. Not only Rich's birthday, but the fact that we didn't know if Jacob was going to be here today but that he is. And he is still so unbelievably strong and fighting this disease without so much as a whimper. 

We always start birthdays the same in this house, and we made time for our tradition last year too before setting off to the hospital. Whoevers birthday it is gets a lie in, and the other makes the tea, decorates the house and gets all the cards and presents that have been grabbed from the postman and hidden until the day. So this morning it was me. Jacob woke Rich up with a nice dive bomb to the head and Rich had his cup of tea and opened all his cards and presents in bed. We've spent the day at home, just us 3. But as we always do on someone's birthday, everyone came over in the evening for takeaway and birthday cake! After Jacob went to bed, Rich, Aaron, Lou and me all played Monopoly Empire. We are such little nerds. But it's actually really funny to play because everyone except me is so competitive so I just sit back and watch them all argue. 

It was a really lovely evening and compared to the place we were in this time last year, we are feeling so lucky. I hardly even thought about this day last year which is what I wanted for today. Rich had a really good day, and as he didn't want to celebrate at all, I'm glad he did and enjoyed himself. Oh, and we obviously had cake! 

You can't have a birthday without a Colin the Caterpillar cake. 

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!

Playing out.

Since Jacob was a few weeks old, Rich sometimes takes him out on a Saturday morning to meet his friends for breakfast. It's lovely for them to do that together and it also gives me time to get ready and wash my hair (which doesn't happen very often!!!). Jacob is petrified of the hairdryer so I have to either do it when Rich is at home to distract him or if they go out. Rich's friends from work are doing the challenge of a lifetime and canoeing from Fort William to Inverness to raise money for The Childhood Eye Cancer Trust on behalf of Jacob. The charity have done so so much for us as a family. They are really amazing and is wonderful that we have friends that recognise this too and want to give back. So Rich was meeting them on Saturday to see them off as they were leaving on Sunday. Rich and Jacob had a daddy and son day most of Saturday as I was a little worse for wear after meeting friends for drinks on Friday night. (By worse for wear, I mean totally incapacitated. It's shameful.) I felt so awful as I'd hardly seen Jacob all day but it was so lovely for him and Rich to spend the day together without me and have some quality time for just the two of them. I made a point of doing his bedtime routine which I look forward to and we obviously read Dear Zoo again. 

Sunday I felt much better, still a bit delicate but nowhere near as awful as Saturday! It was back to mummy mode. We were up at 6.30 which is good for Jacob! Better than the 5am starts we've been having some mornings. We were going to Aaron and Lou's for dinner which I was really looking forward to as we don't really get out for dinner very much. With Jacobs routine it can be quite difficult sometimes. I've gotten him into such a strict routine from when he was tiny that if we deviate from it at all, all hell breaks loose. It's my own fault but you learn! Jacob absolutely loved Lou's garden, it was huge so he had loads of room to roam around.

Jacob started to take lots more steps again yesterday! He seemed to have just given up, but my best friend Adele bought him a pair of Vans trainers for his birthday which have only just started to fit and they seem to really help with his walking, plus he looks so cute in them. 

LOST!

Such a poser. 

He's getting so grown up, it breaks my heart.

Dinner time. He LOVES corn!

Mondays is normally Jo Jingles day but it's finished for the summer holidays. So today we decided to go to Ashlyns Farm Park in North Weald which is just down the road from where we live. Laura and Jonah came along too. It is so lovely there. They have a little farm shop where they sell all fresh produce and jams and stuff. I was good and didn't buy anything, mainly because I always end up throwing fridge fulls of food away because I forget what I've bought and then it goes out of date. They have a little farm trail that you go round, with loads of little animals and Jacob is absolutely obsessed with animals. And then parks and soft play areas for the kids. We even managed to get a few photos of Jonah and Jacob together which is difficult because they are both so go go go all the time. We went for lunch afterwards, and Jacob doesn't normally eat well when we are out, another routine thing I think! But he ate all his lunch today and then started on Jonah's! We've got a busy week this week so today was the only day that we could really go out and do anything fun for Jacob. And it was a really nice day. 

Making friends.

Best pals. 

Picking up chicks at a bar...

If you would like to sponsor our friends for their canoe challenge, you can at justgiving.com/jacobscanoers. Obviously I don't expect you to but if you have a spare few pounds then feel free. CHECT are a truly amazing charity that have done so much for us and other families like us. Thankyou :)