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!

4am is the new 7am.

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

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

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

 The troublesome twosome...

 "Participate" also means "eat the instruments."

 Walking.

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

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

Cruising in Jacob's car.

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

Where has my son gone?!

Since Sunday, it is like Jacob has been replaced with a different child. He has been so grumpy and clingy and totally of his food (still). He is normally always so happy, but since Sunday afternoon we have had tears and tantrums aplenty. And I am exhausted. He has just gone down for a nap after a slightly better morning than the last 3. We've been up at 5am, throwing milk across the living room, screaming blue murder at the front door because he wants to go out. Bringing me his shoes because he wants to go out and dragging me to the back door because he wants to go out. The only thing I have taken from all of this is that he obviously hates me and wants to move out. He now knows to take my hand and take me to where he wants to go. And if it isn't the front or back door, it's to the cupboard under the stairs where the hoover lives. Because he is totally obsessed with our Hetty the Hoover. But if I turn it on, all hell breaks loose. It has been very hard the last few days, and by no means am I complaining, but we have been quite lucky to have a happy, sociable boy pretty much all of the time. So to have Jacob clinging to my legs and hanging off my tshirt has been quite difficult. I can normally do the washing up or make a cup of tea or clean up after lunch, but the last few days, this has been totally impossible. So my house looks like a bomb has gone off, there is porridge all over the walls, Wotsit dust all over the sofa and juice all over the floor. By the time Rich gets home from work, I am climbing the walls. I haven't even bothered to turn off cbeebies when Jacob finally settles for a nap. I actually went back to sleep yesterday for half an hour because I think I may have cried had I not caught up on a few winks. A few of my friends are having similar troubles with their little ones at the moment and they are all very close in age. So it may be a phase, or it may be a coincidence! Originally I thought it was teething and he had the nice big molar through at the end of last week, and it might still be, but it has certainly been a testing few days. We went to Jo Jingles on Monday as it has now started up again after the school holidays. I was very close to not going as Jacob was so miserable but I thought a change of scenery and some socialising might do him some good. We met my friend John there with Darcie as they are little Jo Jingle's buddies. He was still quite clingy and didn't really go off to play on his own like he normally would, so I spent my time being pulled around by my finger and in the ball pit with him. And let me tell you, there is no glamorous way to climb into the ball pit at Wild & Wacky. Jacob didn't really participate in Jo Jingles except for when the maracas came out. Otherwise he was trying to escape through the door. He did eat all of his lunch though which was the first time he has finished a meal for about a week. He has been totally off his food again, only eating his fruit still. The Innocent smoothies for kids have proven a good buy though, as he has been inhaling them. So that's something! 

 Possibly one of the only (half) smiles from Monday...

Ball pit buddies.

 Grumpy guts in his awesome hoody from Next.

Smoothie monster

We had quite alot of laughs and smiles this morning and he even ate all of his porridge, by himself with a spoon! So I'm hoping Jacob is feeling a bit better now. I did start to panic a bit as he wanted his hand held everytime he walked, that his vision in his left eye may have changed and the tumour has started to grow again and affect it. I'm pretty sure that's just my mind going into overdrive. But when he's normally so happy, I do really worry when he is so unsettled. Everyone just says it's kids and he's just coming into himself and seeing what he can get away with. So I am really hoping that's the case. At 15 months, this is definitely the hardest but also the most fun age so far. He is so so funny at the moment, and doing new things everyday. This morning, he actually drove his Toot Toot Drivers cars around the track and he has also started to try to build his Mega Bloks. I've also started to let him use crayons and we have managed to keep it on the paper so far! Oh, and in his mouth obviously. I freaked out but Rich assured me they are non-toxic. So all I can expect is some multi-coloured nappy contents! 

Another new trick he's learned recently...dunking!

Ball play.

We go to soft play and Jo Jingles every Monday. Jo Jingles is a singing and movement class for 6 months to around 5 years. Jacob absolutely loves it and at home he will do the actions to Wind The Bobbin Up and a few other songs. However when we are there, he just sits there smiling like a lunatic, doesn't do any of the actions and then claps to the sleeping bunnies song, to which he's supposed to be quiet.

I absolutely love going and watching him clamber around the soft play and try to keep balance in the ball pit. And he loves to sit watching other kids. You would never ever think he was going through what he does. 

It's quite nerve wracking when other mums talk to Jacob or older kids look at him and talk to him as I just panic they're going to ask about his eye. Most people don't even notice, even my family have to ask which eye is artificial sometimes. (Although I don't know if they're just being polite!) The worst part is when you get chatting to other mums and they ask how old Jacob is, and when I say "13 months." I just know what's coming next... "Isn't he little!!!!" Most of the time I just laugh it off and say "yeah he's a little squirt." But sometimes I feel like screaming at them "YES HE IS! He's got bloody cancer, that's why he's small!" Sometimes I really have to bite my tongue. And I know no mums mean anything by it, I'm sure I've said it to someone else before. But when you have a child that you know will be slightly different to other children, (how many kids are going to be able to take their eye out to show their friends!?) you can't help but feel defensive. 

Sometimes it's easy to joke about it, like when he's going crazy and diving around in the ball pit, I joke and think what the staff would think when I ask them to empty the ball pit because my sons eye is in there somewhere. And as with everyone else, I'd either make them cry, or they'd just look ridiculously uncomfortable and oblige. Jacob just sits there smiling at the "head tilters" because he doesn't know or care less what anyone thinks of him. And that's the way I hope it stays.  

Ballpit beast.

Jo Jingling.

I really recommend Jo Jingles to anyone with kids under about 4. Go to their website to find a class near you. www.jojingles.com