2 years.

Wow the last year has gone quick. Jacob had only just started walking this time last year. I was about to become pregnant. And Jacob was stable. So much has happened and although Jacob is back to having treatment, I know in another year from now things will probably be completely different again. Jacobs check up last week was a tough one again. He was an absolute sobbing wreck when I collected him from recovery after his EUA. The one good thing that happened this time was Jacob had fallen asleep before his turn to go down to theatre as he was second to last this time. He has never been that far down the list so I knew it was going to be hard. As soon as we got in the car in the morning, he was asking for a banana. He has a banana as soon as he gets up every single morning. Then when we got to the hospital, he was asking for juice. We managed to keep him entertained most of the morning with a ball, and we got to see Skylah again, who we met during chemotherapy. So they played together all morning, which was lovely. Jacob dosed off just before he was called to theatre so I carried him down as carefully as I could so he didn't wake. He jumped when they put the mask on him but then went straight back off to sleep. It was so much nicer than the crazed animal climbing all over me session we usually have. Jacobs consultant came to see pretty quick afterwards and explained he needed to give Jacob alot more cryotherapy as there is a little bulge on the tumour and it hadn't responded as well as they'd hoped. Absolutely gutted again, but it's just another bump in our road. It's so awful seeing Jacob in pain. He's older now and just cries so much more and is so much more aware of everything. The nurses could see he was clearly struggling to manage, so they gave him some oralmorph. Which totally wiped him out. He slept for about three hours and we aren't allowed to take him home until he is awake and has eaten and drank something. We ended up getting home around 4.30pm. My sister looked after Alba which was brilliant so Jacob had Rich and me all to himself at the hospital. And it was definitely a two person job this time, I was incapacitated under a sleeping toddler so Rich was my slave haha. I really missed Alba though, I've never left her for that long but she was in good hands! Plus, my nephew adores her so I knew she'd be okay. He constantly says "hello baby girl!" to her. He was devastated when he first met her and she wasn't Spiderman. We'd told him I was having a Spiderman baby and when he saw her he said "Char Char, I thought you were having a Spiderman baby?" I've never felt worse for lying to a child.
The distraction of Teddy meant Jacob wasn't quite so emotional that night or the next day as they came over to keep him entertained. I'm not good enough anymore. Jacob just says "I want to see Teddy!"

 Jacob and Skylah-Mae sightseeing.

Sleepy boy. 

Last week also marked the two year "anniversary" of Jacob's diagnosis. I absolutely dread it. It's also Rich's birthday on the same day, so I spent more time trying to think about that. We made birthday cards for him and I managed to get a painted footprint from Alba! Although Jacob saw this as a pass to paint her himself. I managed to stop him before any paint made it onto her, but stopping him from running around covered head to toe in paint and wielding a pot of red paint proved impossible. So I gave up and let him get on with it. It's washable paint, so I'd deal with it later! Jacob refused to wear clothes for the rest of the day. Another thing I dealt with later.

I've been trying to teach Jacob how to count for a while now but he just is not interested. I've always counted when carrying him down the stairs or if we are out and about, he just does not care for it. He says "1, 2, 6, 6, 6, 6, 6." I'm sure he will get it eventually. I remember helping teach Teddy to count using those foam number mats. But Jacob would rather throw the mats around than count. Any tips?! He has really come along with his speech though which is brilliant. He can say so many things now, asks for his lunch, tells me what he wants, tells me when something's wrong. It makes this parenting thing so much easier! He's due his two year check soon which I'm looking forward to. Our health visitor Claire is amazing and has given me some brilliant advice over the last two years. And she was there on the phone straight away when Alba was born and came round to see us. I rang her so many times in Alba's first few weeks when we were dealing with the reflux/colic issues and she was always one step ahead of me, ready with the prescription for her milk or booking a doctors appointment for her. Alba is due to be weighed this week, I'm so intrigued as to what she weighs now as she was 12lbs5oz 4 weeks ago and she has definitely grown a lot since then. She's officially in 0-3 month clothing which Jacob didn't wear until he was around 6 months. And size 3 nappies! Jacobs only in size 5's! It amazes me how different babies they both are. Both in looks and how they are. Obviously I know it was a different situation with Jacob as he was poorly and had trouble gaining weight but I think he would have been little anyway. I was a total bag of bones until I was about 12. Then the carbs found me. Haha. I've noticed how different Alba is with holding herself and her head up. It must be that extra chunk helping her out! Another big difference, actually HUGE, is Alba sleeps through the night! She has her last bottle normally between 8pm & 9pm and then sleeps until around 6. Not every night is like this and she has had a few where she's woken up and wanted feeding, but this is absolutely amazing regardless. I think every mum will agree that you don't ever feel like you will get a full nights sleep again when you've had a baby, but hopefully soon these nighttime wake up calls will be a thing of the past!

A few pics of what we've been up to recently...

We went to a couple of fun days in our local park with Jacobs friend Darcie. (Her mum is actually one of my friends but I don't think that counts after the kids are friends...haha.) 

 Not a great photo, but this was the red paint fiasco...

 Big girl napping in her cot. (Which Rich finally built after me nagging for 3 weeks!)

 Chalk and Cheese. How cool is Jacob's T-shirt?! Its from Next.

Cheeky chops.

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!!!!

Toys R Us Takeover & Happy Birthday Tommy!

After the horrendous start to the week, Jacob seemed back to himself on Wednesday, thank god! He was so good all day, and really funny. He has become such a little character now. It's nuts. It's so hard to believe that he's nearly 16 months and so independent. He's started to say a few more words this week too, a favourite being "touch" as he points to trees and flowers. When we walk Lex, our dog, he just spends his time shouting "touch!" And reaching out for the trees. It does make the dog walk take a little bit longer than usual, but his face when he grabs the leaves is hilarious, so I don't mind!

In December last year, a guy named Alan did a sponsored swim for Jacob. We thought the money would be going to CHECT, but he actually raised the money for Jacob personally which was amazing. So on Thursday, we raided Toys R Us! Jacob ran around like a crazy little toddler, exactly what he should be like in a toy shop! Ever since we found out we were having a boy when I was pregnant, Rich was obsessed with getting our son the Audi R8 battery powered car they've had in Toys R Us for ages. Originally, he wanted to get Jacob an iPad, but I really didn't want him to have one, at least not yet. Or for a couple of years at least! He enjoys being outside and playing with his non-tech toys so much, that I don't want that to stop. Not yet!
So we got him the car, which was for age 3 and up but Rich is determined that he'll have him driving it by the end of next week, (yeah right!) the parking tower to go with his Toot Toot Drivers set, a Henry Hoover so hopefully he doesn't care for mine anymore and a My First Thomas the Tank Engine as he has taken a bit of a shine to Thomas and friends recently! We also got him a plastic table and chairs as he has gotten a bit stressy about being strapped into his booster seat and won't eat much, but now he can sit there and get up and move around as he pleases, he's eaten much better!

Jacobs friend Tommy turned one on the 11th September, so we went to his birthday party on Saturday. It was lovely for all the kids to get together as its quite hard with everyone's schedules. Chloe, Tommy's mum, hired soft play equipment for the kids and it was brilliant! They had this little ride on rollercoaster thing and all the kids loved it. Although Jacob preferred climbing up the slopes as opposed to sitting on the cars. Because of the party time, Jacob missed his afternoon nap but did really well! He totally flaked in the car on the way home but because it was already 5.30, I didn't really want him to nap as he goes to bed at 7pm. NEVER WAKE UP A NAPPING BABY. He was so grumpy! Didn't want his dinner, but ate nearly a whole punnet of strawberries! He went to bed at around 6.45 as he was so grumpy, and woke up at 7.45am this morning! (Obviously a few dummy wake ups!) So he's been super happy this morning, so far! I'm having a dinner date with some of the work girls tonight, so hopefully he's a good boy for Rich! 

 They look like a little bunch of old men! The birthday boy in the middle! 

Jacob and Roman having their party food picnic. 

Amazing friends.

As a family, we have been so lucky with the support we've recieved from family, friends and strangers. I honesty can't value peoples support enough. I have a group of friends that have all had babies around the same time so all of our kids have no more than a couple of months between them. It has been amazing to watch them grow up together and although they say not to compare, if it wasn't for my friends babies, I may have not realised there was something wrong with Jacob. My friend Laura had her little boy Jonah 11 days after Jacob. And since they were a few weeks old we've seen each other every week, sometimes twice. When Jacob was about 12 weeks old, so Jonah was about 10 weeks, Laura came over for a play date. Although at 10 and 12 weeks, it was more like a nap date and we would sit and drink tea and eat chocolate digestives by the packet. Jonah's eyes would follow me around the room, watch everything I was doing. And it was then I realised something really wasn't right with Jacob. He didn't watch or follow. He wasn't interested in anything. Jonah's eyes locked onto me. And Jacob just stared into space. It was this night after my sister noticed it too, that I finally decided to have a little look online and google the white reflection in Jacobs eye. To which all that came up was "Retinoblastoma." I just knew that was what he had. I'd spent the last six weeks telling everyone he was blind and to be told I was being crazy and perhaps he just hadn't developed as quickly as other kids. But as soon as it came up on google, I just knew it was that. We went straight to A & E, where they referred us to the eye clinic the next day. And it was then that they said they think that's what Jacob had. They can't "officially" diagnose as it is such a rare disease and only a few doctors in the country specialise in it. But I knew it was that. Mothers instinct they say. I thought that was a load of rubbish when I'd heard about it before. But now, if you're a mum, you know best. No matter what. You may be overreacting or panicking. But mothers instinct is powerful. I know. 

I can't even tell you how grateful I am that Laura came round that day. I still say to this day that if it wasn't for her and Jonah, I may have left it longer and Jacobs condition may have been a lot worse than it is.  

Since then, we have become so close. All of my friends have been so wonderful. Laura and Katherine were two of the first people I told when we found out about Jacob. Katherine has Eva, who is 11 days older than Jacob. She is hilarious. Has the boys wrapped round her little finger, much to her dads dismay! They never ever treated Jacob or me any different, no head tilts, no pity faces. We just carried on as normal. And it was so amazing. On bad days, I can explode onto them and they are so unbelievably honest with me. And sometimes that is exactly what I need. Laura can just say something and it's like a slap in the face and makes me realise that I'm being an idiot or talking rubbish. And normally I'd probably cry at someone being so brutally honest with me, but since Jacob got poorly, it is so appreciated. Because I can get wrapped up in me sometimes and it's so nice to have someone there to snap me out of it. But on the other hand, they remind me that it's okay to be upset and to be angry and to cry. I cannot value their friendship highly enough. And even though we've only been really close for a year, I honestly don't know how I would have gotten through the last year without them. As with all of my other friends with children, the friendship that you have together as mothers is so amazing. At the risk of sounding a bit hippy like, it really is an amazing bond you have. From talking about teething, to sleep troubles to explosive nappies, it is so amazing to know that, chances are, everyone is in the same boat. And you're not the only one awake at 3am scrambling under the cot for a dummy, or not the only one on the brink of a meltdown because you're so tired. I am very lucky to have the friends I have, especially when at times, I probably haven't been the best friend I could be because I've been too busy because of a blood transfusion or a line infection or another doctors trip. Jacob is so so lucky to have such wonderful people in his life.  When he was first diagnosed, we were overwhelmed with the generosity of people. Whether it was gifts, or money, or just the unbelievable support of people. Including strangers. It reminds you that there are still some amazing people in this world that also has so much negativity in it. And that is something worth remembering.

Eva and Jacob. 

 

Big J and little J. Joney and Jakey. 

The first official meeting of the troublesome trio.