4am is the new 7am.

Oh my gosh, I don't think I've been this tired since Jacob was first born. We've recently decided that afternoon naps are no longer necessary (again) and that its completely normal to get up for the day at 4am. He's just gone down for a nap and it's only 8.30, which is going to ruin his whole day now. Yes, I am a routine drill Sargent. Jacob has always had the same sort of routine so if anything changes, it just messes up his whole day. So the 8.30am nap means he will be an absolute grotbag by around 1pm. And if he skips his afternoon nap again, he will be a total sleep deprived monster by bedtime and then we can do it all over again. We have been very lucky with Jacob going down to bed. From around six weeks old, he had a bath, bottle then bed. At first, he went in his Moses basket in our room and we'd leave him to go off on his own, although for the first few nights, I would sit outside our room or peer round the door until he went to sleep. Then he went into his own room at 3 and a half months as he filled his Moses basket and we wanted him to be used to it before his chemo started as we didn't want an upheaval when he would be feeling rubbish anyway. The times obviously changed as he got older and settled more into a routine with feeding and daily naps and bedtime slowly dropped from 10pm to 7pm which it is now. Although last night he went to bed at 6pm as he was so tired. I wish babies understood when you explained to them that if they slept, they wouldn't feel so pooped. Jacob just looks at me like I'm mad when he's throwing a wobbly and I'm stood there going "well Jacob, if you'd have slept or gotten up at a normal time this would be happening right now would it." I just get another scream as a response.
So right now, with the first bit of quiet I've had since 4.45am, I am torn between having a nap, washing my hair or having a cup of tea (as I couldn't drink the first one I made due to my insane little monster refusing to allow me to sit still.)

...So, I opted for all three, and managed to squeeze them all in! Well I didn't really have a nap, just laid on the bed revelling in the silence. And I don't think I've ever enjoyed a cup of tea more in my life. Jacob slept for around two hours, and woke up in a reasonably good mood! We've started going for a walk after his morning nap, just to kill some time really because he normally is quite miserable between his morning nap and lunch. Plus it builds up his appetite a bit! We've had some trouble with him eating since we've been letting him sit at his little table and chairs to eat, he gets up and looses interest quite quickly. He still eats, but just takes a lot longer and then he gets bored. So I think we may go back to the booster seat at the table.
My dad and step mum came over with my little sister this afternoon, and for the first time, I saw Jacob being a bit of a monkey with sharing his toys. My little sister is nearly 3 so she's still learning about sharing too. But Jacob was trying to take everything Katie picked up. And he was not happy when I took it back to Katie. This age is definitely living up to its reputation as "the hard stage." My happy, independent boy has become a miserable clingbot. He woke up from his afternoon nap extremely unhappy and sat on my lap eating his rice cakes through groans and moans. Rich played some ball with him when he got home from work so I could cook dinner, which probably would have proved a mission with Jacob hanging off my leg! I feel like I constantly repeat myself, but I really hope he sleeps better tonight!

We went to Wild & Wacky as usual on Monday and to Jo Jingles. Jacob really enjoyed himself. He climbed around all of the soft play and went up to the slide all by himself which he never normally does. And he stood up and participated in most of Jo Jingles. He was hilarious, just wandering around like he owned the place. 

 The troublesome twosome...

 "Participate" also means "eat the instruments."

 Walking.

 We went to the park on Tuesday to try and burn some energy so Jacob had an afternoon nap. It failed.

 Jacob is obsessed with this tree stump in the woods behind our house. 

Cruising in Jacob's car.

I am arranging a fundraiser for The Childhood Eye Cancer Trust as I couldn't make the Carrots Night walk this year, which we did last year and raised an unbelievable £7000! In all honesty, I just totally forgot to sign up this year which is a bummer because I really wanted to do it as it was quite good fun and I met some amazing people last year. So, to ease my guilt for being useless and forgetting, I have decided to throw a children's Halloween Disco. Originally, I was going to just have a Halloween party at home for my friends and their children, but my friend suggested we turn it into a fundraiser. So since last week, I have been planning that! It's quite stressful but people have been so generous with raffle prizes and donations. Its so lovely to know there are people out there who want to help. I'm sure it will be worth all the stress and worry on the day! And I cannot wait to dress Jacob up in some crazy costume!

Jacob the eye removal expert.

The title says it all really. Jacob has become a pro at removing his eye. He's learnt that he can stick his finger in it and it doesn't hurt. Which is officially a nightmare. The best one so far was when we were at Lakeside Shopping Centre and people were looking at him a bit peculiar, and as a lot of people don't notice his eye unless we tell them, I knew he'd done something. So when I looked into the stroller, of course he'd gotten it out. He is so good when he has it taken out now, he just sits there so I just put it back there and then in the middle of the shopping centre. I can do it without Rich having to hold him still which has made me much less worried about him getting it out when Rich isn't home now. 

I'm sure it's the start of what will be some interesting stories to tell when he's older.

We haven't been to a big shopping centre like Lakeside since Jacob has been able to walk and gotten so demanding! He was really good and was quite happy to sit in his stroller. We did let him loose in the Disney store which was quite funny. He went straight for the Jake and the Neverland Pirates toys then became quite attached to a Minnie Mouse hoover. He went absolutely nuts when it was time to put it back and to leave the shop. Full blown tantrum central. We are really trying hard to ignore them because we have noticed that he checks if we are looking at him mid-tantrum. I think he must be getting to that extra clever, button pushing, what can I get away with phase. 

We had dinner in Wimpy just because it was easiest, and Rich is absolutely obsessed with Wimpy. I cannot remember the last time I had one, and I didn't really rate it to be honest. Jacob didn't seem like much of a fan either as most of his dinner ended up on the floor. The waitresses didn't seem to mind though as he gave them his "butter wouldn't melt" face. Definitely getting smart!

Jacob had a lunchdate with my friend Francesca's little boy Roman this week. They spent the day waffling away to each other in baby language while we sat catching up on grown up stuff. (Gossiping and moaning about being tired!)

Wimpy!

We had a wedding to go to on Sunday in Oxford and it's the first time I would ever be leaving Jacob for such a long period of time and being so far away. I have been so nervous about it, so much that I really considered not going. And since he's been able to remove his eye, it's really made me realise that he is a bit different to other children, and it isn't a case of someone just babysitting.  They need to know what to do if he moves or takes out his eye. If it gets lost, what one do they put in. So it does make me really nervous. Jacob spent the afternoon with my mum and stepdad, which he's never done before so I was a bit worried about if he'd behave. But mum said he was really good and she really enjoyed it. Although she was absolutely knackered afterwards. Then Soph had him for dinner and bedtime. She stayed at our house with him until we got home as we thought it would probably be best as he's never stayed away from us so may not have settled. We are going to try him staying out the night but only when we are round the corner. We had a really lovely time at the wedding, and it was really nice to go out just Rich and me as we still haven't really had a night out just us two. We got home at 2am and Jacob was awake at 4! I didn't really drink because I knew I'd be up early with Jacob. I was naughty and brought him into our bed at four, he went back to sleep until six but then it was party time. I've been at total zombie all day today. We had a little play date today with Jonah and Eva. Now Jacob's walking, it's so much funnier to watch them all together. Although, towards the end of the day, Jacob started to hit Jonah and kept laughing when told "no." I have no idea where he has learnt this from, I'm hoping it's a phase and that he doesn't realise that what he is doing isn't very nice. I know he is being very testing at the moment and trying to see what he can get away with, so we are trying to set boundaries. We are trying the distraction technique at the moment and just moving him away from the situation or whatever he may be doing that he shouldn't be. Any tips would be greatly appreciated!

Just us two. It was so strange to spend the whole day without Jacob. I love getting dressed up to go out, but my god, I hate wearing loads of make up! I couldn't wait to get home and scrub my face. A true sign of motherhood I'm told!

September is global Childhood Cancer Awareness Month, it is so important for people to know the signs of childhood cancer. I didn't and if I had, Jacob may not have lost his eye. So if you follow me on Facebook, Twitter or Instagram, you can expect lots of statuses and pictures so please share them if you can! 

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 :) 

Amazing friends.

As a family, we have been so lucky with the support we've recieved from family, friends and strangers. I honesty can't value peoples support enough. I have a group of friends that have all had babies around the same time so all of our kids have no more than a couple of months between them. It has been amazing to watch them grow up together and although they say not to compare, if it wasn't for my friends babies, I may have not realised there was something wrong with Jacob. My friend Laura had her little boy Jonah 11 days after Jacob. And since they were a few weeks old we've seen each other every week, sometimes twice. When Jacob was about 12 weeks old, so Jonah was about 10 weeks, Laura came over for a play date. Although at 10 and 12 weeks, it was more like a nap date and we would sit and drink tea and eat chocolate digestives by the packet. Jonah's eyes would follow me around the room, watch everything I was doing. And it was then I realised something really wasn't right with Jacob. He didn't watch or follow. He wasn't interested in anything. Jonah's eyes locked onto me. And Jacob just stared into space. It was this night after my sister noticed it too, that I finally decided to have a little look online and google the white reflection in Jacobs eye. To which all that came up was "Retinoblastoma." I just knew that was what he had. I'd spent the last six weeks telling everyone he was blind and to be told I was being crazy and perhaps he just hadn't developed as quickly as other kids. But as soon as it came up on google, I just knew it was that. We went straight to A & E, where they referred us to the eye clinic the next day. And it was then that they said they think that's what Jacob had. They can't "officially" diagnose as it is such a rare disease and only a few doctors in the country specialise in it. But I knew it was that. Mothers instinct they say. I thought that was a load of rubbish when I'd heard about it before. But now, if you're a mum, you know best. No matter what. You may be overreacting or panicking. But mothers instinct is powerful. I know. 

I can't even tell you how grateful I am that Laura came round that day. I still say to this day that if it wasn't for her and Jonah, I may have left it longer and Jacobs condition may have been a lot worse than it is.  

Since then, we have become so close. All of my friends have been so wonderful. Laura and Katherine were two of the first people I told when we found out about Jacob. Katherine has Eva, who is 11 days older than Jacob. She is hilarious. Has the boys wrapped round her little finger, much to her dads dismay! They never ever treated Jacob or me any different, no head tilts, no pity faces. We just carried on as normal. And it was so amazing. On bad days, I can explode onto them and they are so unbelievably honest with me. And sometimes that is exactly what I need. Laura can just say something and it's like a slap in the face and makes me realise that I'm being an idiot or talking rubbish. And normally I'd probably cry at someone being so brutally honest with me, but since Jacob got poorly, it is so appreciated. Because I can get wrapped up in me sometimes and it's so nice to have someone there to snap me out of it. But on the other hand, they remind me that it's okay to be upset and to be angry and to cry. I cannot value their friendship highly enough. And even though we've only been really close for a year, I honestly don't know how I would have gotten through the last year without them. As with all of my other friends with children, the friendship that you have together as mothers is so amazing. At the risk of sounding a bit hippy like, it really is an amazing bond you have. From talking about teething, to sleep troubles to explosive nappies, it is so amazing to know that, chances are, everyone is in the same boat. And you're not the only one awake at 3am scrambling under the cot for a dummy, or not the only one on the brink of a meltdown because you're so tired. I am very lucky to have the friends I have, especially when at times, I probably haven't been the best friend I could be because I've been too busy because of a blood transfusion or a line infection or another doctors trip. Jacob is so so lucky to have such wonderful people in his life.  When he was first diagnosed, we were overwhelmed with the generosity of people. Whether it was gifts, or money, or just the unbelievable support of people. Including strangers. It reminds you that there are still some amazing people in this world that also has so much negativity in it. And that is something worth remembering.

Eva and Jacob. 

 

Big J and little J. Joney and Jakey. 

The first official meeting of the troublesome trio. 

Playdates and immunisations.

My friend Kayleigh asked if I would look after her little girl Darcie for a few hours on Monday. I jumped at the chance as I absolutely love her and she loves Jacob. They are so cute together. She's two next month so there's about 9 months between them. She looks after Jacob when she's with him, the way she goes upto him and leans over and checks he's okay and offers him his drink is absolutely adorable. Jacob went for his afternoon nap not long after Darcie got here and the whole time she kept asking where he was. She just kept going "Jacob?". She associates him with slides as we go to Wild and Wacky together a lot and Jacob tends to climb up the slide while Darcie is trying to go down. 

My friend Laura was here with Jacobs BFF Jonah, and my sister was also here with Teddy so it was rather chaotic! Luckily the weather was good so they were all playing outside. My neighbours probably think I'm running some back alley crèche. 

Darcie is so well behaved, I knew I wouldn't have any trouble handling her and Jacob together. Makes me think another one of my own will be a piece of cake (yeah right.) I do keep threatening to kidnap Darcie, but her dad John didn't seem too keen on the idea...

Char Char's Nursery. 

Playing house.

Buddies.

Today, we had the first of Jacob's immunisations post chemo. He only had the 8 week ones first time round as he was diagnosed with Rb at 12 weeks and we actually had to cancel his 12 week lot due to his first appointment at the Royal London Hospital. It was then we found out he would be having chemotherapy so we were advised by his consultant not to continue with them. For a couple of reasons, one being that his bloods and immunity will probably be too low and it's too risky to inject him with live viruses. And the second was that the chemo would wipe out any immunity he had anyway so effectively would wipe out the vaccines. We've had to time his injections around his RLH visits too because if he was to get a fever in the week or so before going there, whether it be from teething or a vaccine or a cold, the anaesthetists can refuse to see him and to put him to sleep. And obviously his appointments at RLH are a priority to us so that always came first. Luckily, with the amazing news last week and our four week break, we've been able to fit them in.

He is due to have them all again, so the 8, 12 and 16 week ones and then the one year MMR. The nurse gave me the choice of him having all 5 injections today, then the boosters in a month, or we could spread them out a little bit. I opted for the latter as I didn't want him to have all of them and completely knock him for six. He had the MMR today too which I wasn't expecting. I know there are so many mixed feelings about this vaccine, and Rich and me have spoken about it, but at the end of the day, with everything Jacob has gone through and the fact that if he was to get any of the illnesses, his cancer treatment could be delayed, there was no doubt in my mind that I wanted him to have it. Yes, he could easily get over measles but if it delayed his cancer treatment, would it be worth it? Never. 

He was so, so brave. I was so nervous that I asked my sister to come with me. I went with her for Teddy's one year vaccinations and it was absolutely hideous. He was sat on Sophie's lap all happy and laughing at me and then the nurse stuck the needles in and his face absolutely dropped and it was the most heartbreaking little face ever. I can still see it now. So ever since then, I'd always said whenever I had a baby, Sophie could come with me and go through it herself. She'd offered to help pin him if he went mad, but to be honest, after pinning him every other week for when he's put to sleep, I knew I'd be okay. He was easy enough to keep still and the nurse was pretty speedy. He let out a little whimper after the last one but was fine after about ten seconds. I was honestly so shocked, but he's so used to being messed about with and prodded and poked that I don't know why I was surprised he wasn't bothered. So sad really. But he is so strong. Makes mummy look like a big wimp. The nurse at our GP surgery was so lovely, she said how wonderful it was to see Jacob and how well he's doing. He's a little bit of a celebrity down there. Everytime I ring, I get, "oh Jacob! The little boy with the poorly eye?" Yes, that's him. One time we went, and the doctor we saw grabbed some nurses going by and was introducing him to everyone. I've been going to the same surgery my whole life and it's pretty much all the same doctors so it's pretty crazy sometimes. They see so many people everyday, so it's quite touching they remember us. 

Jacob seemed happy enough after, I'd gotten the calpol at the ready just in case. He went down for his nap as normal, happy. But woke up like an angry little monster. Normally after a drink and a snack, he's back to himself. But he did not stop crying, following me around and hanging off my leg. Which was very difficult while I was trying to hang washing out. There was only one thing for it, the washing got left in the basket in a big wet pile and we watched Frozen. 

Rich brought him home a new castle tent for his room for being brave. And I'd only told the nurses earlier that he isn't spoilt. If any of you are reading this, I wasn't lying! Promise! 

I'm expecting a rough night with him, but hopefully he'll sleep well and there will be no fevers in this house! Calpol is like a little godsend to me now as we went so long with Jacob not being able to have it because of the chemo. (It can hide a fever which can be an infection in their Hickman line/port-a-cath) Through teething and colds and coughs, we just had to let him ride it out. It took me so long after his chemo had finished to even give him any calpol or nurofen through fear of a missed infection or something. But as silly as it sounds, I am so grateful for it now. Especially with the teething! 

As I'm finishing writing this, Rich and me are tag teaming trying to settle Jacob, looks like post immunisation grumpiness doesn't like to sleep...

The king of the castle. 

Mummy trying to get in on the action!

Thankyou for reading!x