#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! 

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! 

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