I have an 18 month old!!!

I cannot believe I have an 18 month old, I also cannot believe that he is going to be a big brother next summer.
Jacob has become more and more of a little character over the last few months, and although still not saying many words, he does not stop waffling away.
His favourite things to say and that we will understand is "no", " what's that?", "Lex" (our dog), and he makes "mmm" sounds for food he likes. Which is everything. After a wobbly beginning of not wanting any of my homemade purees, he has always been a brilliant eater, I took a really relaxed approach to weaning. I did a mixture of baby led and purées, although he totally refused my purees, he loved the Ella's Kitchen ones. I was so excited to start weaning so when he was about five months, I spent a whole Sunday in the kitchen making every puree you could think of. They all went in the bin eventually as he hated them all. But to be honest, why would anyone want just broccoli or cauliflower? (Although one of his favourite foods is actually broccoli now!) I tried some with apple, sweet potato, parsnip, you name it. He wasn't having any of it. So it was Ella's Kitchen to the rescue. And then at lunchtime, it was always finger foods. Sandwiches, pasta, fruit, veggie sticks, those Organix carrot wotsit things which he loved. And if he didn't eat it, we'd leave it a couple days and try again. He always had lots of variety. My sister used to say "there's too much choice, he won't eat anything!" But he would always clear his tray. We were really lucky through chemo as he never really went off food. I'm guessing he's going to be like me and shove anything away. I won the egg battle last week. I have been trying for weeks to get him to eat some scrambled eggs. And he did it. I was so excited, I put it all on Facebook and rang Rich all excited. So yes, in regards to food, Jacob is a little piglet. 

He has become quite the tantrum thrower. I'm hoping he's getting the terrible twos out of the way before his sibling arrives. He is currently chasing the dog around with his Henry Hoover and trying to hit him over the head. All fun and games!

Spaghetti Bolognese?

Since announcing that we are expecting baby number two, a lot of people have asked about Jacobs condition and what the chances are of this baby having it. Rich and me were both tested for the gene mutation which Jacob has and we are clear, so aren't carriers. So this baby has the same chance as any other baby of having Retinoblastoma. We will be having the cord blood tested when the baby is born, just to be sure. The chances are very small, but at the same time, they were with Jacob too.

The sickness has finally started to pass and I have actually had energy to do housework this week which has been nice. I'd been doing the absolute minimal I could get away with for the last two months and I'm a big believer in "clean house, clean mind!" More like "clean house, happy Char." We've started to go for a walk again most days too, and if not, Jacob has been getting wrapped up and playing in the garden. He just loves to be outside which isn't ideal in the British winter time!

 Showing off his little brother or sister!

Adventuring.

Rich and me have been trying to decide what to get Jacob for Christmas, (I've bought about 3 little things!) The only thing He's really into at the moment is cars, and balls (still!) And he likes Toy Story and Monsters Inc. Actually he likes anything on TV. Could be a cooking programme, documentary on paint drying, he'll watch it! I think we are going to go for a trainset of some kind and just books, puzzles and crafty stuff. I bought him (me) some play-doh last week which he (I) really enjoyed playing with. To be honest at this age, they're more interested in the wrapping paper than what's actually inside!!

Jacob has a birthday party at Wild & Wacky tomorrow evening, and I have my work Christmas party so Rich is taking him alone. Its his first proper birthday party at a play place so I'm a bit gutted not to be going but I'm sure Rich will take lots of photos and I can feel like I was there!!

A Wonderful Wednesday.

I never thought I would call Wednesdays wonderful. But yesterday was. Jacob is still stable. He's fighting this little tumour and we have never felt so lucky. Last time we were at RLH, Mr Sagoo. One of Jacobs consultants did say that they can slow down and a lot of children will become stable. But we never, ever go thinking that it will still be the case. It just isn't worth the disappointment. Luckily, we've not had the disappointment yet, but that's not to say we won't. Jacob didn't go down to theatre until around 3pm and as usual we went down to the canteen to grab something to eat as we also don't really eat while Jacob can't. Maxine, one of Jacobs nurses knows how much I love the puddings down there so she specifically went back to check for me when she got her lunch. And it was gooseberry and apple crumble, one of the best. So I obviously salivated my way to the canteen, only to be distraught when they had sold out. I was gutted. I had to settle for some awful chicken sandwich on brown bread, and I hate brown bread. But by this point, I was so hungry that I just needed any food.

Jacob was back quite quickly again from theatre, and when I went to collect him from recovery, I couldn't hear him crying. He normally always screams the place down after coming round from the anaesthetic. But he was just laying on his bed, wide awake, waffling away to the nurse. It was so funny. We got back to his bed, and he just sat there stuffing his face, no wobbly throwing, no tears. It was really nice. Normally the hour or so afterwards is a bit chaotic with tears and trying different food and drink. But he just sat eating his yogurts and a whole packet of blueberries. Then made his way through rice cakes, malt loaf and Jaffa cakes, the new favourite. Oh and 3 bottles of water.

It felt like hours until Mr Reddy came round with the results, Jacob was only second on the list, sometimes they will come up in between to give you the results but depending on how busy they are and how many kids they've got in that day, it can sometimes be at the end. And they were busy on Wednesday so it was the end. But it was so worth the wait. Mr Reddy is so to the point, he just said "Jacob is doing fine!" No technical terms, nothing. To which I just said "He's still stable?!" Yep, and that he is to be seen again in 8 weeks. 8 weeks! Its getting longer in between appointments which is amazing, but so scary too! We know what to look out for though so if we were worried at all, the RB team are pretty amazing at getting you fitted in if needed. Luckily, we've never had that yet and fingers crossed it will stay that way!

After getting 8 weeks off, we thought we'd have a nice break from hospitals, but this morning Jacob decided that was not to be the case. He climbed up on to the dining chair while I was out of the room.and before I knew it, he'd come off it backwards and landed on his head. He is always bashing his head and will normally just brush it off and get on with it. But when I picked him up he was doing that holding his breath thing babies do when they're shocked. And he was quite floppy. Not holding his head up. I went into total panic mode, Rich had just left for work so I rang him and got him to come back although I have no idea how he worked out what I said on the phone in between my panic and Jacobs screaming. He's quite tough really so when he didn't stop crying after a few minutes and his head was quite floppy, I knew he needed checking out. So we spent our Friday morning in A & E. Luckily he is fine, but it was so scary. He has never gone drowsy like that and its the only time he's bashed his head when I've really panicked. One of the nurses asked if he had a lazy eye, to which I obviously said that its artificial. Which led to a discussion about Rb and how did we find out. It seems so many more people know about it now than when we found out. But I think its probably where we are just more aware. Its nice that people know what it's about now though, and that hopefully Jacob's story has made at least people we know more aware of the disease.

A full nights sleep...

Before I even started writing this, I thought "Char, you're jinxing it, you're jinxing it, don't do it!!!" But I think we may have turned a corner with sleep. Jacob hasn't been in our bed for around two weeks now. And He's started to sleep to a more normal time. He woke up at 8.15 on Sunday morning. It was amazing. He did have a wobble at around 5.30, I'm not 100% on the time but it was dark so there was no way we were getting up. Does he not know that Sunday is a day of rest?! I left him to have a little moan, and then it went silent. Next thing I know, it was 8.15. Rich sleeps through absolutely anything (so he says, I bet all your baby daddy's do the same too don't they? Must be a magical gene men are blessed with) so when I decided enough was enough with him coming into our room in the night, I knew the battle was for me to fight alone. We've always tried to use controlled crying as is the the only thing that's ever really worked for us. Jacob has been so much happier too, and me! He wakes up and sits talking and laughing to himself and his toys, as opposed to waking up crying. And He's down to the one big nap a day. This varies from before lunch around 11.30 or he will go after lunch around one. It all depends on what time he was awake. Which recently hasn't been earlier than 6.30. I'm jinxing it again aren't I...

We have Jacobs check up at the Royal London Hospital tomorrow, it was pushed back a week as they had an emergency last week. Its happened a few times and every time I panic like crazy. A week will never make too much difference in tumour growth, but because he's gone so long without treatment, it is very nerve wracking. He's on the afternoon list too which is even more stressful than the morning. It tends to always run a bit later and sometimes Jacob won't go down to theatre until 4. And when he hasn't eaten since 7.30 that morning, he is not a happy boy. And I'm pretty sure he's going through a bit of a growth spurt at the moment too as he doesn't stop eating and all of his trousers seem to have turned into ankle biters. He's finally making his way into 9-12 month clothing, so after a year of wearing 3-6 and 6-9, He's finally mixing it up a bit! It does however mean he needs so many new clothes, he managed to build up an entire years worth of wardrobe in 3-6 month clothing. So summer or winter, if you need some 3-6 months boys clothes, give me a shout!!!

Due to the size change, I went through all of Jacobs clothes to sort out what I want to keep and what I'll probably donate. I thought about doing a boot sale and selling it on but its just all too much hassle. I managed to part with about a quarter of the items. And even that was a ridiculous amount. How do you get rid of it all?! I think I'm going to need to get about 200 of those memory quilts made. My mum got Jacob a bear made with 5 of his first sleep suits which was lovely. I'm sure I'll get realistic and part with them one day.

We avoided Jo Jingles this week, purely because Jacob always has a habit of picking up a cold or some sort of snotty disease right before hospital, and as he was already delayed, I didn't want to risk him catching anything. Instead, we spent the morning grabbing some shopping and then Sophie and Teddy came over for lunch.
We changed Jacobs routine a little bit last night, as he normally gets changed and ready for bed upstairs, then goes to bed after a story. We tried changing him into his pyjamas a bit earlier last night and letting him stay downstairs for a bit. It can end up a bit chaotic when he gets changed right before bed and can make him over excited and then he throws a bit of a wobbly when he's put into his cot. He went to bed really well, and alot calmer than usual. I still had to read the same book four times though. That's his new thing. The same book over and over again. He would let me read it sixty times if he could.

A bit of before bed relaxation.

I finally managed to get some wellies in Jacobs size yesterday. Everywhere is sold out of little size 4's! But they have posed a problem, he wants to wear them ALL THE TIME. And be outside ALL THE TIME. And it isn't very warm at the moment! We've just spent an hour in the garden. I swear kids don't get cold. 

I'll let you know how we get on tomorrow. Fingers crossed!

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!

This is hard work!

I just haven't had the energy to write a blog post this week. And the only reason I'm writing this one is purely so I can moan to someone else about how hideous I feel because I think my family and the few close friends who already know, might just kill me if I moan to them anymore. We found out 3 weeks ago that we are expecting baby number two. While I was absolutely shocked, we hadn't officially started trying and Jacob took a year to conceive, Rich was over the moon. Dont get me wrong, I am so pleased. I always wanted about a two year age gap between Jacob and his sibling, and it probably would have been less if Jacob wasn't poorly. But while being shocked and pleased, all I could think was that I didn't want to feel as sick as I did with Jacob. And silly me, I thought I would get away with the feeling like a sack of crap for 3 months, "every pregnancy is different" and all that! But my god, this time it has been SO much worse. I was quite sick with Jacob, actually throwing up every morning without fail until about 14 weeks in. But by lunchtime, I felt myself again. This time round, it is lasting ALL DAY but I'm not actually being sick. Now, ask anyone who knows me, I am a pathetic ill person. For brief moments I will just get on with it, but since having Jacob, I am truly pathetic. A shame to those mums on the Boots advert that are running around after a sick family while battling the plague themselves. Whether work distracted me last time, or it just wasn't as bad, I honestly don't know how I'm going to get through another possibly 7 weeks of this. I have tried absolutely everything to help, ginger beer, ginger tea, fresh root ginger tea, ginger biscuits, dry crackers, polos, dry toast. Nothing has worked. And the only thing I want to eat is McDonalds fries. Good pregnancy diet. Running around after Jacob has been so hard too, and I have had so many days where I have felt like the worst mother in the world because I've vegetated on the sofa all day. My house is a mess and Jacob is just wreaking havoc. I've spent almost every night crying to Rich about how Jacob must hate me for missing Jo Jingles last week because I felt so ropey, I couldn't face going. Or how he had spaghetti on toast for dinner last night because I felt so sick, I couldn't face cooking anything else. Evidently, Jacob doesn't care because he still smacks me in the face or is my best pal when he gets some chocolate buttons, which has been a lot more often recently!!
Rich has been brilliant the last week or so, before that he just told me to get on with it. It took a full blown crying meltdown for him to realise how rubbish I felt. This is probably my fault for being a pathetic ill person anyway so he probably thought it was nothing different. Except it is, it is like the hangover from hell that lasts for weeks. Everyone says "but it will be worth it." Yes it will, but right now I want to smack you in the face and go cry into my pillow about how tired I am and how all I want to do is enjoy a meal without fear of seeing it in reverse. I honestly think women are amazing for going through this time and time again. I've said a few times that this is the last one now. My mum said if it isn't a girl, I have to keep going until she gets a grandaughter. If they can give her my morning sickness, I'll have ten more! I absolutely loved being pregnant after the sickness passed with Jacob, I really hope this time is the same. I'm worried Jacob is going to start reporting me for neglecting him. We went to Jo Jingles this week, which I'm glad we did because he really seemed to enjoy it this time and toddled off around the soft play after all by himself. He managed to find his way to the huge slide in the middle and went skidding down it on his own. I obviously panicked and was trying to navigate my way through Wild 'n' Wacky at lightening speed, which did nothing but give me a nice bruise on my back where I forgot I am way too big to crawl under one of the gaps to the slide. But turns out there was no need to panic. My little beast didn't even need me. Another reason I cried yesterday. While I have absolutely no intention of publishing this post until after our scan. Its felt good to write it out somewhere else!

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!

   

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