A tough few weeks.

I was no way prepared for how tough the last intra-arterial chemo aftermath was going to be. When we were discharged from hospital on the Wednesday, I thought "Yes! All done, my little beast can get back to normal." But I was wrong. Since the Thursday, so nearly 3 weeks ago, Jacob's vision has quickly deteriorated to almost nothing. We've had so many bumps to the head, I've lost count. The worst being Jacob riding full speed on his scuttlebug into a concrete post outside our house. He's got a lovely, big graze on his forehead as a souvenir for that one. He screamed nursery down when I dropped him off on the Monday after. And he has NEVER cried. Why is it you feel like the worst mother ever when that happens? Anyway, he woke up on the Tuesday even worse so I kept him home for the day. Rich took a days holiday from work to stay home and help me as Jacob needs constant supervision. He still thinks he can run around like usual. His vision was poor after the first cycle, not the second, so I thought this would be a breeze. Nope. It's just heartbreaking to watch him feeling his way around. His depth perception has gone, so he's missing steps and kerbs too. If I could give him my eyes, I would in a flash. I spoke to his nurses at The Royal London Hospital and they've said just to keep and eye on him and it should slowly return to normal but after it wasn't improving, they pulled his appointment forward a week to last Wednesday. I felt sick with nerves the whole time, he was back from theatre quite quickly and wasn't too distressed which is always good. The doctor finally came to see us about 3 hours later, and said that Jacob's optic nerve is extremely swollen and he has alot of blood spots in his eye. They injected him with yellow dye to see how the blood flowed and it was quite restricted in his eye which means there isn't alot of oxygen getting to the muscles, making his vision bad as the eye can't work how it's supposed to. Jacob was an interesting shade when he came back around, and it wasn't until the doctor told us that we realised that was why! So, again we were told we will just have to wait and see what happens with Jacob's eye. The good news is that the tumour has responded "beautifully" to the IAC! Which is amazing. Fingers crossed that'll be the end of the horrible, little thing!

Jacobs consultant decided that Jacob should have a course of steroids to hopefully help speed up recovery on his eye. He is meant to have them for a week after IAC but it was in liquid form and we couldn't get him to take it no matter how much bribing we did. So they prescribed pills which we could crush up and put into anything. So, Jacob's been having 3 fruit shoots a day. Not the best but if it helps his eye recover quickly, I can deal with the rotting teeth after! I have managed to start putting his morning dose into his cereal which is great. We were told he would probably behave a bit wacky and have a crazy appetite with the steroids. Well, wacky doesn't even cover it. He has become a completely different child. He has not stopped crying, wanting to be carried everywhere and only by Rich. If I even touch him, he goes absolutely bananas. I think we've had about two smiles out of him in the last two weeks. It's absolutely breaking my heart to see him this way, and I keep having moments where I just cry. There's nothing we can do to make him feel better. Rich is back to work tomorrow and I am so nervous for the week ahead. I hate that I can't comfort him, and I hate that he doesn't want me to either. All I hope is that he goes back to the happy, cheeky little boy I had before all of this.

Jacob was 3 last Sunday. THREE! I can't believe it. He had an okay day, not like he would have if his vision was 100% but it was still nice. He asked for a roast dinner for dinner, Rich was very pleased! So we had family over and all had dinner and cake together. He got totally spoilt. Him and Alba had a joint party yesterday as she is one on Saturday. (Don't even get me started on that one, I've been an emotional wreck about that too.) Jacob had an okay time, he was glad to see some of his friends and they all played on his new trampoline. He got a bit overwhelmed which I expected, and he was absolutely shattered after and flaked on the sofa.

Today has been really tough again. I feel awful for Rich as he has had to take Jacob absolutely everywhere with him, to get a drink, to the toilet! It's insane. It was so draining for me when Rich wasn't home last week, and he's even worse this week so I dread to think how he feels. We have tried to leave Jacob to cry it out a little bit, but he gets in such a state and then Alba gets really upset. So we are just doing everything we can to try and keep him calm. Another side effect is that his appetite has increased, ALOT. The food that boy is shovelling away is crazy! I had to go to Tesco today to stock up on pretty much everything as he just hasn't stopped eating! I shouldn't complain as getting food into him is such a challenge. He is on these tablets until Friday, and I cannot wait for them to be out of his system and hopefully get back to normal. I miss my happy boy.

It's been a while...

I've started writing about 20 blog posts and never get round to finishing them. So thought I'd better give it another go. New year and all!!

Soooo much has happened since I last wrote. The weather has gone from beautiful heat to bloody freezing! Alba is now an official crawling, jabbering, food throwing little person. Jacob is in nursery for 3 afternoons a week and has developed the attitude of a highly emotional teenager. And I've cut all of my hair off as loads of it fell out anyway. Oh post partum hair loss I love you. Oh, and I turned 30, but no need to talk about that.

Alba is now 7 and a half months old. She started crawling at the beginning of December and has been unstoppable since! I started weaning her quite early as her reflux was awful even with dairy free milk and medicines. It did reduce the amount of sick she was decorating the house and her clothes with so that was great. I changed her back to Aptamil follow on milk around a month ago as she was switched to the second stage dairy free milk and was projectile vomiting whole bottles so something in it didn't agree with her. I am absolutely loving weaning with her. I am a bit more carefree about what she eats compared to how I was with Jacob. Mostly because its sometimes easier for her and Jacob to have the same thing. So she has had nuggets and alphabites waaaaay before Jacob did! Oh and a few chocolate buttons here and there. *insert hands over eyes emoji here* She absolutely loves avocado and cheese which is great. Although I have noticed she's a bit of a lazy eater. I will offer her something and she will just hold her mouth open for me to hold it while she chews as opposed to holding it herself. She has her two bottom teeth already too.

Jacob started nursery in October and he loves it! I really thought I was going to have so much trouble with him going and settling in well. But his nursery are fantastic and he did about 4 weeks worth of settling in sessions which slowly increased in length until he started properly. He does 1-5 three afternoons a week. He is absolutely shattered by the time he gets home but that doesn't stop him waking up at crazy o clock and climbing into our bed! Both babies sleeping is very up and down but that's probably a whole other blog post. Ha. Jacobs speech has come along so much and you can have full conversations with him and there is very rarely something he says that I don't understand. AND...he is wearing PANTS!!! Only in the day and we are still having a fair few accidents but we are certainly getting there. He refused to use the potty at home but did at nursery to which I was obviously like "well we are doing this at home!!" It took a while but one day it just clicked. I did slow down over Christmas as it was obviously very chaotic but when the new year started he asked to wear pants and that was that. He's so tiny though, I had a nightmare finding some to fit him, but luckily Asda start their pants at 12-18 months which fit my little string bean fine.

Christmas was amazing, we stayed at home just us four, which was very calm but with Alba on the move too, I wanted to stay quite chilled out and not have to worry about chasing her around too much or her being trampled by the family. Haha. The kids got absolutely spoiled and I am still trying to find homes for the piles of toys. Very stressful when I hate clutter and mess.  

Two days before Christmas, Jacob had a check up at The Royal London Hospital, and unfortunately his tumour had relapsed again which was absolutely gutting. He had more cryotherapy and a nice sore eye in time for Christmas. He didn't let it hold him back though. He still had an amazing time and was so excited when he woke Christmas morning and "Father Pissmass" had been! We were back at RLH two weeks later and the tumour had responded well so no more treatment was required but the previous treatment had made his retina detach slightly so we are back on Wednesday to check that it's reattached and to hope the tumour has stayed stable. If not, he will be having a radioactive plaque as his next line of treatment as all of the cryotherapy has started damaging his eye and its too risky to carry on as he only has the one. I'll write more about that if it happens. But obviously fingers crossed it doesn't.

I could write and write with everything we've been upto the last six months but I'll be here forever. I plan on writing a bit more regularly again now. Plus Rich keeps shouting at me too as well. So keep popping back!

Here's a few pictures of what we've been upto recently... Although if you follow me on Instagram, you've probably already seen them!

So I thought I'd do this which actually shows how much of a crap blogger I am...the left is August, when I last wrote a blog and the right is now. Growing up so fast!

I say let's not talk about turning 30, but I actually had the most amazing birthday weekend and was thoroughly spoilt.

A few from Christmas: 

Jacob was given tickets for Disney on Ice at the O2. It was absolutely amazing! 

Seaside Saturday

We have had a busy weekend! We spent Saturday at Clacton-on-sea as my mums side of the family (which is huge) all hired caravans for the weekend, so we gatecrashed for the day on Saturday. Jacob slept absolutely terribly on Friday night, he was up at 3am and that was it. Awake for the day. The drive to Clacton was about an hour and a half so we'd arranged to leave at ten which is Jacobs nap time and hoped he would sleep the whole way. He managed to hold out until ten which really surprised me seeing as he was up at 3. Although he was extremely grumpy! He's totally gone off cereal for breakfast too and will only eat his toast or chocolate chip brioche. I bought some of those Innocent Kids smoothies on sunday so hopefully he will like those so I know he's at least getting something good in him in the mornings! I think he's still teething as he has been extra dribbly and the bibbles have come out again! They ruin all of his nice outfits as they don't really match and I don't want to buy loads more as he has so many. Just none seem to match!
We took Jacob to the seafront in Clacton. Its mostly a pebble beach but he absolutely loved it! He kept trying to go into the sea, and loved the water running up over his feet. He was so excited and actually managed to run around on the sand and pebbles. Not bad considering he's only been walking a few weeks! Although he does think he's some kind of Olympic sprinter now so we've had lots of bumps and bruises recently!
We spent most of the afternoon at my mums caravan with all the family and Jacob seemed to really enjoy himself, which was quite surprising with so many people there. He had quite a late night too by the time we left so was quite unsettled most of the night, but he stayed in his own bed all night which was brilliant.

Lou and Aaron asked if they could take Jacob out for a couple of hours on Sunday afternoon. They've looked after him before so I wasn't worried at all. And he loves them so was more than happy to go! Rich and me went to Tesco on our own which was really weird! Jacob came back all ready for a nap after Lou's dad played football with him and he was running around her garden but he decided sleep was not on the cards! He has been so funny with sleeping still and his naps are all over the place. Any tips would be greatly appreciated!!! 

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!