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 :) 

Fevers and Frozen.

So the post immunisation fever has reared it's ugly head over the last few days, at least that's what I'm hoping it is! Jacob started to get really grumpy on Wednesday so I got out my old pal the thermometer. It was like another part of my body when Jacob was having chemo, I would take his temperature every few hours and if he ever had a fever, it would be a trip straight upto our local hospital to have Jacob put on antibiotics for 3-10 days depending on what kind of infection he had. Thankfully this only happened once, and we stayed in for three nights. So when he came up at 38.2 degrees on Wednesday afternoon, it was calpol time! Besides being super grumpy, he had no other symptoms. Although he actually slept through the night on Tuesday and Wednesday which is a rarity in this house so I should have realised something wasn't right! Thursday morning his temperature was still around 38 and calpol didn't seem to be making a difference, I had read that this can happen 7-10 days after the MMR jab, but I still panic that it could be something else. My brother and Lou were meant to be looking after Jacob while I worked as Rich had to work Thursday too, but I called and said I wouldn't be in just in case! Plus he was so grumpy, I wouldn't expect anyone else to have to look after him while he's like that. And he only ever wants mummy anyways when he's not feeling great! So we spent the day watching Frozen, shock! I'm starting to get a bit worried though as one; it's making me excited for winter and snow, and two; I am developing a crush on the chiseled jawed Kristoff. I wonder if Jacob would appreciate watching The Notebook instead? Jacob has started to respond to things in the film, such as when the big marshmallow snowman growls and shouts and Anna, Kristoff and Olaf, he growls at the tv and shouts back. And I realise I'm talking as though everyone has seen the film, so if you haven't seen it, watch it. I've seen it 12 million times and I actually still enjoy it.

Jacob must have either been feeling better or 100 times worse last night because he was up literally all night crying. No amount of cuddles or calpol made him any better. I even resorted to bringing him into our bed which I try not to do, ever. And that didn't work. I ended up having to sleep sitting up next to his cot as everytime I went out of sight, he woke up going crazy. It's like he has a mum radar!! So to say I'm tired today is an understatement. Jacob however, had a 3 hour nap so he's feeling just fabulous and is all up for a party now. I really need to start drinking coffee. 

Fever= nappy day! 

I had to share this photo as I bought Jacob a cap the other day and he actually doesn't mind wearing it. Plus I think he looks ridiculously cool. If I may say so myself. 

They're so pleased to be going to Tesco...

xo