Round two.

Intra-arterial chemo number two is done. After being delayed by three weeks, Jacob finally had it this Wednesday. He had a throat infection three weeks ago which delayed his EUA by a week, then there wasn't a slot on the next week at GOSH, so it was pushed to this week. Lots of messing around and chopping and changing Rich's days off etc. But we got there in the end. Not without some drama along the way... Jacob got a nasty fever at the beginning of last week and it didn't want to come down, so we were admitted to our local hospital. They wanted to make sure he was well for Wednesday so started IV antibiotics as a precaution. We ended up staying for three nights, then Jacob was sent home with his cannulla still in and we had to go back for IV antibiotics for the next two mornings. The worst thing now is that Jacob is so traumatised from a blood test he had done at our local hospital that was not done how he is used to, and by an extremely "not child friendly" doctor, he becomes a screaming, squirming mess. We haven't seen the same doctor since but I was so rude to her that I think she would probably avoid me anyway. Don't get me wrong, we are extremely lucky to have the NHS, but when you have been going through this with your kid for nearly three years, you know what's going to work for him and what isn't. And pinning him down and telling a poor student nurse to squeeze his hand until it turns purple isn't going to work. It was awful. And when Jacob screams "please mummy, no bloods! Please!" like he is being tortured, well, you are going to have a few things to say. Other than the needles, Jacob was brilliant and actually thought he was on a bit of a holiday. All he wanted to do was go down to the hospital restaurant! The doctors couldn't actually find a cause for his fever as all of his bloods came back clear but at least he was well for his hospital appointment.

                  

They have a sensory room at our local hospital which is fab and it kept Alba happy for ages!

At Jacob's EUA two weeks ago, we got the news that the tumour has responded really well to the first round of treatment which is amazing! And after the first lot, we knew what to expect so went in Wednesday morning feeling a bit more prepared. With the intra-arterial chemotherapy, the children can sometimes has a reaction to the drug on the second course of treatment, the doctors do not know why or why it is the second one when it usually happens but their blood pressure can drop very quickly and they need adrenaline. It happens to around 40% of children. And of course Jacob was in that 40%. It is so so scary when you think of what could actually happen, but the doctors are so prepared for it now that they can see the signs before the blood pressure starts to drop and react quickly. He was so spaced out when he came round, no tears, no screaming, just very drowsy. It absolutely breaks my heart to see him like it, mainly because he just looks so cute and relaxed, and also because it shows what he's been through. How exhausting it must be for him. How rubbish he must feel when he wakes from his "special sleeps." After his 4 hour bedrest, we made our way home. Which again, was rush hour on the tube. We had to wait 45 minutes for a train that we could even fit on. Commuters are animals! I got trampled on and shoved so much. It honestly baffles me how people do it every single day. I don't think there is enough money in the world to make me do that everyday.

Jacob was sick again today, which confirms that the last time definatly wasn't a coincidence. It's so unusual apparently but I will definatly be giving his nurses a call on Monday.

Jacob finally got his new eye from Moorfields last week too. And oh my goodness, it is amazing. I am so impressed with them. I actually cried when it was put in. It looks so real!!! 

Not the best photo, but getting a toddler to pose for a picture isn't the easiest of tasks!

Since I last wrote, I've also gone back to work at Topshop! I'm only working four hours on a Saturday morning, but it's a lovely little break for me and I get my staff discount again which I can't complain about! I absolutely loved my job as Visual Merchandiser before I left to have Jacob and would absolutely love to return to it one day.

Oh, one more thing, Alba has started to take steps! My life is about to get alot more stressful, like I need that!!!

Lost.

I'm feeling quite lost again these last few days. Definitely like it's the beginning again. Even my mum said it feels like it. It must be the unknown. We haven't done this treatment before. We don't know what happens, what could happen, if he will lose his lashes or his eyebrows, or if it will even work. Jacobs consultant called from Great Ormond Street yesterday, and went through alot with us. The biggest bombshell was that he will be having an ECG and electrophysiology. We had no idea of this. It's standard procedure with this treatment. Another thing we didn't know. And apparently the electrophysiology can be painful. He will have those little pads put on his head and the electrical current will give them a detailed look at his eye and the vision in it. How it reacts. Another scary thing for Jacob to go through. Everyone keeps saying to me "it has to be done." Yes, it does, but until you have to watch your kid go through all of this, you have no idea how much you wish it didn't have to be done. How much you really wish you could take it away. How you would give up your eyes or your sight for them. How you'd be prodded and poked and put to sleep every other week instead of them. Parents would do anything for their children. I know every parent would. And the pain of having to watch your child go through something that you cannot take away is just incomprehensible. Every parent has been through it, I'm sure. But when it's your kid, you forget all the other parents and think of yours, how you would do it for them in a heartbeat. And you do feel like no one understands. And perhaps that's self centred. But I don't have the time to think of that. I am concentrating on keeping my kid happy. You block out your pain and upset and just try to act like everything is normal. Although I think it is normal to Jacob now. Every morning he wakes up and the first thing he says is "Can we go to the hospital?" I can't decide if it's cute or sad.

We went to Moorfields Eye Hospital on Thursday for Jacobs first appointment with his new prosthetist. My mum came with me as I was crazy enough to think taking Alba and the pram on the tube would be a piece of cake. The journey was absolutely vile and the way the TFL staff spoke to us was horrendous. When asking for help up the stairs after being told that we'd have to wait for a less busy train as we had a pram, we were told "It's not in our job description." Eventually someone helped us and we managed to get to street level and get a taxi. Still stressful. But we got to Jacobs appointment, even if we were 20 minutes late. His new prosthetist Nick was really lovely and he spent so much time perfecting Jacobs new eye. And really made effort with Jacob too which was great as he felt relaxed. He took a mould of Jacob's socket so hopefully the eye should be a perfect fit. He gets it in about 6 weeks. I'm so excited. The journey home wasn't half as bad, mainly because it wasn't very busy and we chose to get a taxi and go from Liverpool Street station which was much more pram friendly.

We are off to Great Ormond Street Hospital in the morning for Jacobs first appointment. Then back on Tuesday until Wednesday. It's going to be a very busy week. I am so worried about leaving Alba as she is such a mummy's girl and in all honestly, she's quite hard work so I always worry if she's left with someone. It's so much upheaval for both of the kids. And I am dreading staying overnight in GOSH on Tuesday night. Again, it's all the unknown. I'm sure I'll feel better when the first one is done and I know what to expect.

The naughty step.

We have hit the terrible twos. I'm sure of it. Tantrums galore. We originally started the naughty step around a month ago, but Jacob seemed to enjoy it and purposely do things he shouldn't so he could sit on it. Novelty?! Well that wore off after a week. And I hear that the offending child should sit there for same amount of minutes as their age. So we've been doing around 1 and a half to two minutes. Well I sincerely hope he learns quickly because those two minutes feel like two years. We've gone with the stopping crying before being allowed to come off also, but normally after the two minutes and telling Jacob to stop crying, he's normally pretty good. He does seem to be learning slowly. If I say "do you want to go on the naughty step?" He shouts "No!" And tends to stop whatever roguish thing he's doing. Obviously this isnt the case every time. Especially after some chocolate buttons or something nice and e number filled.
A few people have said to me that Jacob can probably sense the changes happening which explains the sudden change in naughty behaviour. To be honest, I'm sure all kids go through this trying phase and I'm just going to deal with it the best I can and my way. And if that doesn't work, then I'll just be a ragged mum of two constantly shouting at my toddler to no avail. But let's hope not!

Jacobs eating has gone a bit up the wall too, he's decided he no longer likes bread or any of its friends. So wraps, crackers, bagels, rolls, none of it is suitable for lunch anymore. He's taken to grazing most of the day but I try to stop him from eating anything from about 3pm so that he eats a full meal at dinner time. He's never been a fan of what I call "oven" dinners, so chicken nuggets, fish fingers etc but he will eat most other things. And the other day he ate a real sausage! Not one of the processed mushy ones in beans or spaghetti, a real sausage! Haha. I was so pleased because he's never really eaten real meat on its own. So ham, roast chicken, mince etc. If it's in something such as a cottage pie, pasta dish or a chilli for example, he will eat it but not a chicken breast or ham sandwich, but that could also be the current bread avoidance too! I hear this I quite common around Jacob's age so let's hope it's a phase.

Jacob seems to be coming along so much with his his speech, it is so funny listening to him ramble on. He says "yeah" now but in a little American accent and it is so cute. And he has finally started to call me Mummy!!! I have been "Char" for forever and I hated it! Now he calls my sister Char Char, which is what my nephew calls me. I cannot believe he will be two in less than three weeks. It's gone so so fast!

The weather has been lovely here for the last couple of weeks, so we've spent most days outside. We also went to feed the lambs at "Pets Corner" which is a little petting zoo near our house. It was lovely, although Jacob did try to kick the little lamb in the head. Everything is "goaaaaall!" at the moment. He is so into football already, Rich is very pleased!!

We went to a new playgroup last week at a church in our town. It was recommended by my friend Fran, so we went along. It was 10-11.30 which is perfect for us as Jacob normally naps around 12.30ish now. They have an hours playtime, then "tidy up time" which Jacob actually participated in, then they have snacks and then finish with singing. It was honestly the nicest playgroup we've been to so will definitely go again.

I have noticed Jacob has developed a bit of a nervous "thing" I guess is what to call it. When people are making a fuss of him, he tends to cover his right (artificial) eye. Its only been the last couple of weeks and he's even doing it to my mum who he sees all the time. We've not made a deal of it as I'm hoping it's just a little thing he is going through, but I am worried that it's because he knows it is different. Rich said he doesn't think so as he is so young, but I'm not sure! We will see how it goes!

I'm going to do a separate pregnancy post I think as its taken me nearly a month to write this one so I'll never get done otherwise. Worst blogger ever!!!!

Sickness, Fevers & Food

So I caught the sickness bug...what a horrendous thing to have when pregnant. Lady Wright was obviously very hungry, and the idea of food was enough to have me hugging the toilet again. Thankfully I only felt really horrendous for about 36 hours and by the Saturday night I thought I was ready for food again. Hell no. To be honest, I ate possibly the worst thing, a fry up. I really, really craved it! My stomach was not ready for that amount of grease. So I spent the next two days in agony and unable to eat again. By Tuesday last week I was feeling so much better, so I went nuts with my Dettol and bleach. Whenever anyone is ill in our house, I become a bit of a germ freak. Everything gets stripped, washed, bleached, the lot. This did nothing for my sciatica. So I spent all Tuesday night crying about how uncomfortable I was. It was a tough few pregnancy days! Rich was a massive help though and Jacob was no trouble at all which is always a bonus.

We had a couple of play dates last week which was nice for Jacob. He is so funny with other children, although sharing is still a bit of a tricky spot. I did read that children don't understand the concept of sharing until they are four years old, so I'm guessing as long as we teach them now, they'll get it themselves eventually!

We also had a sleepover with Teddy and my sister at the weekend as Rich was going away for the night. It is such chaos when the boys get together, all toys come out, Teddy wants to play Play-Doh, Jacob likes to eat play-doh. But they get on really well which is lovely and its been nice for there to always have been someone else there for Jacob. And I think Jacob has learnt a few things from Teddy too. 

I've finally got everything for Lady Wright's hospital bag. Well, except the actual bag, but I'm ordering that next week I think. I just need to decide if it's definitely the one I want! I think I'm going for the double pocket Cath Kidston one, mainly because it looks pretty huge and I'll be carrying two children's worth of stuff around in it. I had a Cath Kidston one with Jacob and loved it. I was sad to stop using it but once they're not having a new nappy every two hours or bottles, you tend to just fill them up with junk. Much like a handbag!
I've started to get my hospital bag ready too, I don't know why but I feel much less prepared this time so doing all these things a bit early is making me feel a bit better. When Jacob was born, we were in hospital for nearly a week after as he had jaundice and required photo therapy and his bloods weren't quite what they needed to be, so Rich ended up having to bring me more pyjamas and clothes most days, he didn't do too badly but as we had just bought a new washing machine and he didn't know how to use it yet, I was quite mismatched by the end of the week. So part of me wants to over pack almost in anticipation of a long stay, but then at the same time, I don't want to jinx it as I really hope we are in and out pretty quickly. Especially as we will have Jacob at home too. We still haven't left him over night so I'm absolutely dreading it! Hopefully little lady will arrive in the middle of the night and then I'll be home that afternoon. Fingers crossed!

Jacob had a new eye last week, but to be honest I am so disappointed with it. He hasn't had one since October so I was really looking forward to it as his current one was looking really small. His prosthetist hadn't quite noticed how much he had grown, so she over trimmed it and it actually looks worse than the last one in my opinion. She has ordered another one and attempted to make a mould too so he should have another one in around six weeks. I was gutted when we left. But Rich said "they can't be perfect every time!" which I guess is true! I haven't got a very good photo of his new eye, mainly because it isnt very good! But here's a couple of photos since he had the new one. The only good thing about it is that it hasn't been as weepy. Silver lining I guess!!

Jacob has had a fever on and off for four days now, and a little rash to go with it. It looked viral to me but today it went a bit too red and sore looking for my liking, and being Good Friday, no doctors were open so it was off to A&E. We were seen really quickly, but as soon as we arrived and explained his symptoms, one of the nurses looked really concerned and asked if he'd always had a squint. Which he hasn't, obviously if you know him, you know its his artificial eye. It was really great that they'd picked up on it straight away though as she said with a fever for no apparent reason they'd want to get it checked quickly. My friend is also a health visitor and she says she is so much more in depth when asking parents about their children's vision now and any concerns with their eyes. I'm so glad how much more aware of Retinoblastoma everyone seems now. I had never ever heard of it but because of Jacob, so many people I know, now know about it. Anyways, the nurse said Jacob has just a viral rash and just to keep an eye on it. But you can never be too sure! And with it being chicken pox season and scarlet fever doing the rounds, I'd rather be safe that sorry! He advised Piriton for the rash, and when I told my sister this she just said "he will sleep well tonight!" Apparently it knocks them out. So we shall see! I would be excited for a full nights sleep if I didn't have a baby bouncing on my bladder causing countless nighttime trips to the bathroom!

Poorly pants flaked out on the sofa.

I feel like all I think about these days is food, especially since spending 3 days starving after getting sick. I have become OBSESSED with smoked salmon. My friend Fran made me a smoked salmon salad last week and since then it is all I've wanted to eat. I've had it about 3 times with scrambled egg and granary toast. I heard you're not supposed to eat more than two servings of oily fish a week, but I'm not a massive meat eater and I'm thinking it can just replace the however many servings of red meat you're supposed to have! At least that's what I'll tell myself. I have gone on a little bit of a health kick with food as I was eating just crisps and chocolate and cakes all day, no actual meals which is no good for anyone. So I did a healthy shop and have actually been really good. Rich doesn't really eat anything "healthy" so it has meant making separate dinners a lot, but I have felt so much better for it. Although, yesterday I went to Alec's Restaurant in Brentwood with a group of friends for lunch, and I can honestly tell you it was the best meal I've eaten in my whole life, naughty, but delicious. I had 3 courses, and I honestly couldn't eat anything else until today. They served canapés and bread when you arrived, then I had mussels to start, an unbelievable cod fillet in soy sauce and spring onion glaze with creamed spinach and dauphinoise potatoes for main and an amazing chocolate mousse for pudding. I'm actually dribbling thinking about it again...

Have a great Easter weekend! 

Our first sickness bug!

It's been a busy few weeks, not with anything in particular, just those times when every day seems to fly by! Jacob had a check up at the Royal London Hospital last week, and he was stable again! I'd had a really bad feeling (like always) that he'd need treatment but he's still fighting those nasty cancer cells off! He was so good again after coming round from theatre. He just inhales a whole bottle of water and a punnet of blueberries every time. Then continues to eat everything in sight for about an hour. The nurses find him hilarious as a lot of the children are very grumpy when they come round, understandably of course. But he just sits there eating. We took the iPad with us too so he was well set up for the morning! Although his new favourite is Finding Nemo, and we haven't put that onto the iPad yet! We are still waiting for Jacobs new artificial eye, which seems like its been forever. They finally called yesterday and he is getting it next week! His current one is so small, he keeps turning it round and it has been so weepy where its building up gunk. Lovely I know! I'll post a before and after pic next week. Hopefully he sits well and let's Sylvia take it in and out this time. He was not happy with being messed about with last time.

Jacob has started to say so many new words, in the last month or so his speech really seems to have come along. And he understands pretty much everything you say to him now. Especially the word "sweets." He says "seets?!" I wouldn't mind but I don't let him have chocolate too often and is usually after dinner if he does get anything. Although I've managed to make him think that raisins and these organic real fruit jelly things are sweets, so that's good! He also thinks Soreen malt loaf is cake. He looks like he's won the lottery when he gets real cake. The kid doesn't need sugar to give him energy, he's like a little Duracell bunny! The most impressive new thing he has been saying is "I wanna go in the car" and "I wanna go outside" He knows what car is and says that a lot on its own, but the "I wanna go" part is more of a sound I think. But it is hilarious because the second he opens his eyes in the morning or after a nap, it's all he says.

We've also had to start doing "The Naughty Step". I really like this as I am totally against punishing a child through smacking. And most of Jacobs naughty behaviour involves him smacking or hitting someone he shouldn't. Mostly, its the dog getting a pasting. So I don't see how punishing smacking with the same thing would ever work. Everyone is different obviously but I remember getting a good few sore backsides when I was younger and it never stopped me, it just made me misbehave, then run with my legs about ten feet in front of my body with my bum tucked underneath me as far as I could get it. Jacob however, also thinks the naughty step is fun. The first time he went on it he got up straight away, I didn't put him back, but when he went back to whatever mischief he was doing, then he went back to it. This only happened twice before he lost interest in being a rogue. The next time, after hitting the dog over the head with his Henry Hoover, he sat there for about 30 seconds maybe, I asked "are you going to be nice?" To which he said yes, so I said "come say sorry to Lex, (the dog)" so he came over, gave Lex a cuddle and kiss and I felt like I'd won. Until he slapped me round the face, laughed, and went and sat himself back on the naughty step. I couldn't help but laugh behind a pillow. I think it's going to take some practice.

We went to one of our friends little girls birthday party on Saturday, it was in Eastbourne and we'd planned on spending the whole day there and going to the seaside, but it was so cold that we avoided that! Jacob slept nearly the whole way there which was great as he was full of beans when we arrived. I'd expected him to be really clingy and not go off and run around with the other children. But after about ten minutes, he was off! It was so lovely to see him just toddling around, kicking balloons and having fun. He sometimes stands there just watching everyone and you can see he is just taking it all in. He must have been exhausted from all the running around as he fell asleep as soon as we got into the car to drive home with his hands in his Happy Meal box clinging onto a chicken nugget! We just grabbed him one as it was easy for him to eat in the car and he'd been picking at food all afternoon anyway. He isn't a huge happy meal fan and I've gone off McDonalds since the beginning of my pregnancy, so they are a rarity in our house these days. He fell asleep around six and we managed to get him in, changed and into bed without him waking up and he slept until 7.45 the next day. Not uninterrupted of course, but that was a good stretch for him!

He wasn't quite himself all day Sunday, and the same on Monday. Off his food and very clingy. And cuddly. And I rarely get cuddles from this boy so I knew something was up. And at 5pm on Monday, that "up" was projectile vomit. Now, if you know me, you know I do not cope well with sick. I can't even talk about it without heaving (which I'm currently doing). But apparently, when its your child, you block out that fear. Don't get me wrong, I was still a state and wanted to heave my insides out, but the fear in Jacobs face was so much worse. He honestly looked petrified and didn't have a clue what was happening. I was absolutely covered in a lovely grape and rusk concoction but the quivering little wreck that was hanging on to me for dear life was way more important. I went into germ killer overdrive, Jacob was stripped and washed, the bed was stripped and put on the hottest wash I could get it on, and all dummies and drink cups were sterilised and I had the Dettol out and ready for any more explosions. Except there wasn't any, that night anyways, Jacob didn't want to eat anything and climbed into bed without a bedtime story which is very unlike him. He slept surprisingly well, I laid there awake nearly all night waiting for the next lot. He woke up asking for breakfast so I gave him some porridge which he practically inhaled where he must have been starving, but within ten minutes, it all came back up. Now this time, because Rich took Jacob and was dealing with him, it was just me and the reversed porridge. I didn't do well. That blocking out didn't happen. My eyes were hanging out of my head by the end of it.
This all happened at the worst possible time too as one of my friends was getting married yesterday and Jacob was spending the day with my brother and his girlfriend. I didn't want to leave him but he managed to keep down some plain biscotti and ready salted crisps (that's what he wanted?!) and seemed to perk up, so Rich missed the ceremony and came for the evening as by then Jacob seemed pretty much back to normal. He slept so well last night too which was great because I was exhausted from the no sleep the night before, to spending the whole day in heels, (my toes are like little swollen cocktail sausages today.) He woke up this morning pretty much his usual self and ate 3 bowls of dry cheerios. So fingers crossed the bug has left the building! It was so horrible seeing him so subdued. Quiet, but horrible! It made me really miss the chaos!

On the pregnancy front, I have been nesting like crazy. Everything is organised, rubbish thrown out, garden cleared and all the toys and trampoline all cleaned. I am starting to feel a bit more prepared now. However, at my 28 week midwife appointment, she said that Lady Wright is growing nicely and "isn't a tiddler". She said don't worry she isn't big! But this has still terrified me. So many people have said how big the bump is too! I am definitely carrying a lot higher up this time, so it may just " look" bigger. I hope so!

Oh, the last thing, Rich has caught Jacobs bug. In fact, it's actually wiped out my brother, his girlfriend and half of her family too! Not good. I am so hoping I don't catch it. I am pathetic when I'm sick. We (I) had planned a little trip to Mothercare today but I don't think that will be happening! I think Rich planned it that way... ;)

A few other pics from the last few weeks...

The big boy bed...

I have started writing a blog post everyday for about a week, and keep getting distracted by one thing or another. And as I started to write this one, I somehow managed to delete the whole thing. So I'm starting again. Although what I wanted to do was throw my phone at the wall...

Anyways, we have had a busy week this week. Play dates, lunches, work and eye fittings is just the start. Jacobs eye fitting on Friday the 13th (I'm the most superstitious person ever by the way) was a disaster. We went to Wild & Wacky beforehand as his appointment was 11.30 so he would most likely have his nap afterwards. But he absolutely wiped himself out at soft play and was almost asleep when we got to the hospital. Jacobs prostesthist suggested trying to make a mould of Jacobs eye this time as he normally sits so nicely for his appointments. However, he wasn't having any of it. So we had to go for the usual colour match, which means he will have a new eye in a few weeks. Then we will try again with the mould. Apparently moulded eyes have much better movement so I'm quite excited for him to get one.

We bought Jacob's toddler bed his week, he has a cot bed, but as the little lady will be needing one too, we thought it would be better (and cheaper!) to buy a toddler bed as opposed to another cot bed. I sat basically crying while Rich (and Jacob) dismantled the cot and built the bed. Jacob was so excited to get into it. Bedtime went so smoothly, I expected constant trips up and down the stairs putting him back into bed, but he went off like usual and didn't wake up until 7am, when he was at the baby gate shouting for us. I could not believe it. Nap time is proving a whole different matter... He has been upstairs an hour and still not asleep. I've been up and laid him down a few times, but to be honest I'm not really sure how to tackle this one!? Help?!
...an hour and a half later. He's finally asleep. I really hope this doesn't make him hate the bed at bedtime.

On the bump front, we officially have our friend "heartburn" staying with us. My god, I forgot how horrible it is. And absolutely everything seems to be setting it off this time. My sisters best friend is a midwife, so whenever I used to see her when I was pregnant with Jacob, I'd be like "where's the baby lying?!" And I saw her on Thursday and she had a feel, and as I suspected, lady Wright likes to hang out right up near my ribs. Which explains why I can't hardly breathe. I had breathless moments with Jacob, but I honestly feel like I am constantly gasping for air with this one. I have become obsessed with checking my heart rate too as my phone has a monitor on it. Obviously not as medically accurate as a proper one I'd have thought, but it still seems quite close. Your heart works so much harder when you're pregnant and I am positive mine is screaming for help when I'm having these breathing difficulties! I am so uncomfortable already, I have no idea how I'm going to get through the next 3 months if I'm moaning already! Although she doesn't stop moving around. Particularly in the bath. Jacob never used to move when I was in the bath and I always felt sick afterwards so went for showers instead. But it is so funny laying there watching my belly go nuts. Although I honestly can't say the baths will last. This shifted centre of gravity business is no joke. I tried to do a yoga pose at work on Thursday, and just toppled forward like a weeble. Pretty tragic.

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!