Catching up.

I haven't done a post for ages. Mostly because Jacob has been ill then I was ill, then Jacob was ill again and as a house we have been averaging about six hours sleep a night. Jacob still isn't a fan of staying in his own cot all night. He lasts until about 4am, and at the moment I am too tired to even fight with him. So I bring him into our bed where he messes around for about an hour until he eventually goes back to sleep. I read that toddlers and babies have poor sleep habits when they're going through a developmental spurt of some kind. Jacob has not stopped chatting away for about two weeks now. And he's started to say some actual words which is hilarious. Still no "mum" though, unless its mid meltdown. His new favourite is "socks." It all started when I asked him to come get his socks on one morning, and now his favourite thing to do is get his socks and run around shouting it. He also says "oh dear" which is just as funny. The best one has to be "no." I say the best one, it's a nightmare. Everything is "no" and a headshake. "Do you want to go for a nap?" "No." "Do you want you dinner?" "No" "do you want a million pounds?" "No" It's so scary seeing him grow into a little person.

He had a new eye fitted last week. It's actually a really good match. I don't really notice much difference anymore except for the size, but this time I can really see that its changed. When his prosthetist Sylvia first fitted the new one, it moved so well, but looked slightly inwards. We decided it would be best if it was looking more forward as opposed to moving more because with Jacobs nystagmus, he tends to look inwards with his left eye a lot so it was really noticeable. Overall, this is probably the most pleased we have been!

I've been arranging a Halloween fundraiser in aid of CHECT (another reason I've not posted). I originally planned to do a kids Halloween tea party at my house for just Jacob and his friends. But Laura suggested we turn it into a fundraiser. The response we got when asking for donations etc was absolutely amazing. A local dance school, "Makin' Steps" donated the use of their hall, a bouncy castle company loaned us a castle for the afternoon and my friends brother loaned us his DJ equipment. We also had Fiona from Jo Jingles come and do a session for all the kids. I enlisted all my friends and family to help with the food, and so many people baked cakes. It was so lovely. We had an events company called Events4All there and they brought their candyfloss and popcorn machines which proved a huge hit and they also had an Olaf mascot. I also know a girl who dresses up as Elsa as part of her company MP Little Treats too so halfway through the afternoon we had Elsa and Olaf come out to meet the children. It was brilliant. Jacob absolutely loved it. We held a raffle too, all prizes were donations from various companies and friends. I haven't got the exact total yet as we are waiting on a few donations but I think we raised about £1100 in total which is amazing! It was an absolutely exhausting afternoon but so worth it as I think all the kids had a brilliant time.

We've moved on from Frozen, which I'm kind of grateful for. The new favourite is Toy Story. He will sit there beginning to end and not move. Its nuts. As he is down to one nap a day, I've used Toy Story as the second nap substitute so I can still get things done. When he first dropped to one nap, it was so hard for me to get used to more than Jacob I think, as I'm sure any mum does, I really look forward to that hour or so of downtime. Not anymore! Thank god for Woody and Buzz!

We are at the hospital again next week for Jacobs next check up so fingers crossed he's still stable!

Below are a few pics from the last week or so. We went to Van Hages which is one of my favourite places ever, especially at christmas time!!

My little vampire on Halloween!

CHECT Members Weekend.

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

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

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

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

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

   

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!

#ride4sight

Some photos from today. Thanks to Vision Express for some brilliant photos of Jacob!

Food nightmares and fundraising events.

We have had an absolute nightmare with food this week. Jacob hasn't wanted to eat hardly a thing, and he's redecorated our living room almost everyday with the food he's thrown up the walls. He's eaten his toast for breakfast most mornings, then won't touch hardly a thing the rest of the day unless it's a digestive from the biscuit tin or fruit, yoghurt or cucumber. Which is normally a tell tale sign of teething with him. And we've also continued with the horrendous nights and getting him into our bed just to get some sleep. So after checking today, there's a nice big molar on its way through! Hopefully it won't last too long. Why can't every single tooth come at once then it's all done and dusted?! 

We went to Wild & Wacky on Tuesday for the first time in ages, Jo Jingles doesn't run during the school holidays and we've just not ended up going there to be honest. Jo Jingles starts again on Monday so we will back to our weekly trips. It was the first time I'd taken Jacob since he has started walking too and he seemed to enjoy himself much more. A little boy got a bit heavy handed with him and was basically dragging Jacob around by the back of his tshirt and I went into full on crazy protective mum mode. I didn't enjoy it but I think my crazed glare at the little boy did the trick as he didn't go near him again. I know kids mean no harm most of the time but it's so easy to get all crazy lioness when you see your little ones taking a pasting from another kid. I am like it with Teddy too. When I was pregnant, this kid that was about 5 years older than Teddy, who wasn't even 2 at the time, shoved him out of one of those ride ons that every parent tries to avoid outside the supermarket. Teddy literally came out of it backwards and landed on his back. So I got up thinking I was all brave (pregnancy hormones trick you into thinking you're tough. And I am not tough.) and started shouting about how people should be watching their children, only to find the parents were sitting on the table next to me with far too many empty wine glasses on. Awkward. I thought I was going to be killed by a table of tanked up women. Anyways, other than the little boy carrying Jacob around like a ragdoll, it was quite good fun. He slept well in the afternoon! Somehow we are back to two naps a day, but I'm not complaining at the moment because with the sleepless nights, I quite appreciate the extra break.

Finally climbing things at Wild & Wacky.

Jacob is slowly starting to fit into some of his 9-12 months clothing. I love this outfit. The tshirt is from Next, the joggers are H&M, his bibble is from It's A Bibble and his trainers are Converse.

We were asked by CHECT if we would go to a fundraising event on Friday. It was to meet a group of 32 cyclists that are doing the Ride4Sight in order to raise money for The Childhood Eye Cancer Trust. Its a 150 mile bike ride from Stratford to Nottingham over two days. CHECT have done so much for us, so we were more than happy to go and talk to people and thank the cyclists for what they're doing for the charity. So far they've raised over £25k which is unbelievable. We met a few other families which was lovely as it is always nice to talk to other people going through what we are. The hotel where the meeting was was lovely. We had tea and cake and everyone knows I love some free food. We met Darren Harris who had Rb as a child and has been left with almost no sight at all and he is now a paralympian, playing football for Great Britain. Meeting him was such a pleasure and he is such an inspiration. It really made me see that Jacob will still be able to do almost anything he wants to. Jacob was a bit overwhelmed by all the new faces and everyone chatting to him but he did really well. We hadn't planned anything for dinner as we thought we'd just grab something on the way home, but not all the cyclists arrived at once and we didn't want to seem rude and leave but the charity arranged for the hotel to cook Jacob some dinner which was so kind of them. I was quite apprehensive about going to the event as I get so emotional at things like that but I am so glad we went. It was a really lovely afternoon and Jacob had a fab time running around like he owned the place! 

Strolling around like he owns the place.

Rocking his oversized CHECT tshirt.

Some of the cyclists arriving.

 Picnic! 

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! 

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 :)