Halloween

Tony and Katie carved a pumpkin tonight. She wasn't particularly impressed with the guts, but she loved the finished product (above). Jack just liked the candles.

Yes, I have got to 30 years of age on this planet and have never ever had pumpkin before. We made soup (it was ok) with potato skins (delicious!!). She wouldn't even have one taste of the soup though.

Will post pics later, Blogger is acting up for me.

She's wearing a gel eye mask around her neck. She's mad, she kept trying to get Jack's glasses (she's already broken them), so I put the eye mask on her for a few minutes.

If you click on the picture, you'll see the little grass head she made at her group. She kept calling the cress "little trees".

Katie

Katie is loving her toddler groups. We only go twice a week at the moment, but she is having so much fun. Her vocabulary is expanding all the time, I'm amazed at the words she has, along with her comprehension. She is very funny at the moment with lots of pretend play.

Halloween isn't a huge thing in the UK, though it is becoming that way. "When I was a kid", can't believe I said that, costumes were home made, but there are now huge aisles in the store with ready made costumes and elaborate decorations for the home. We were passing some houses on the way to her group which had some decorations in the window and I would frequently hear from her "Oooh, *LOOK*, Mammy". Then "very scary!" (pretend).

She notices every little thing. She'll be commenting on something or other and I'll not know where she's got that from, but then will see what she's referring to. I guess that must be part of being a child, they really take in their surroundings and find wonder in everything, where as adults tend to just wander with blinkers and filter things out. We were driving the other day and she kept getting very excited about a kite, I couldn't see anything, then eventually we approached the junction and I noticed there was a kite stuck in a tree at the park. When she first said it though, we were pretty far back!

Anyway, the pretending. She's getting all of her little stuffed toys and lining them all up, or sitting them in a circle and talking to them or for them. She'll say one of them is crying, or tired, then hug it, or put it to "bed", or feed them. It's so cute.

She's quite a polite little child, for a two year old. When she coughs, she'll say "excuse me", does something else "pardon me" ;-), if someone sneezes "bless you", she says please and thank you. The funniest though is she is obviously picking up things Tony & I are saying as she'll address Jack and Ben "hi sweetheart, good day school?" or "hi darling, nice sleep?". When I'm making her lunch, she tries to push me into the living room "come on, love" (she literally tries to pick my legs up, lol). When I'm getting dressed upstairs, she'll stand at the gate and the bottom and shout "Mammy, darling..." to get my attention, and she's so sweet, if you accidentally bump into her she'll apologise "sorry, mammy".

Take away the tantrums and crying and poor impulse control (and...and...), this is such a great age! She can be quite demanding, but really she is a lovely little girl.

8 months old

This year has just flown by, it is crazy!

Ben is so darned cute. He seems pretty attached to me, which is lovely, but I need to get things done sometimes too. Neither of the big kids ever really had separation anxiety or were particularly snuggly with us, but Ben does love me to hold him and he has big smiles for me.

He's still growing up too quickly though. I'm glad he's kind of little as he feels like my baby for longer. He's certainly going to grow fast in the next few months.

He is doing well, though a little delayed in his milestones. He's only rolled a handful of times and has just started to get more stable when I sit him up. He's not crazy on food, but is getting there. I'm still doing a breastfed/formula fed combo for his milk. The boy refuses to hold his bottle though! He does like to stand if I hold his hands, but his little ankles are very weak due to the problems with his feet. We see the consultant again next week as his feet are still turning in and when he stands he just goes over on his ankles all the time. I still have him in his brace for the most part, but he's also starting to get blisters on his heels :(. No crawling or anything yet or going up on all fours, but I think he's doing well all things considered.

I stood him up at his play gym to snap this picture. I knew I shouldn't have. As soon as I snapped it, he fell forward. He needs to get a bit stronger before we try unassisted again!

I am LOVING his cardigan. It has a hood with a fur trim and he just looks adorable. He's even extra soft and cuddly, if that it possible :)

My boy is sick

I just don't know how to help him any more.

Jack is on antibiotics for an infection in his g-tube and we've got him back on reflux meds, but it's not helping him so far. He is sick and crying with every feed now. His ped is away until next week, so I'll be calling her first thing on Monday morning.

He had reflux BADLY in his first couple of few years, tried many medications and none seemed to really help him, just take the edge off things. We finally switched his milk to a hypoallergenic, predigested formula and that seemed to "cure him" within days. He was stable for well over 6 months, but for a long time now, it has just gotten worse and worse - to crisis point this week.

I feel awful for him, yet at the same time it is very hard to deal with his crying and not being able to help. He doesn't want to be cuddled (not just the reflux, he's always been like that to a degree I think due to everything that has been done to him medically), shouts if you try to touch him, I can't get fluids into him as he takes no food or drink orally and is just sick if he has too much into his stomach. He's woken up crying in the early hours every night for a while, which is difficult with Ben sharing the same room now. We're both tired, I'm snappy with the other kids.

He was on the verge of Nissen fundoplication surgery last year before they switched his milk. If so, he may need the open surgery due to his previous heart surgery, having the g-tube and he has a catheter from his vp shunt in his head for the hydrocephalus that drains internally to the peritoneum, so I don't know if there is too much obstruction to do it keyhole. He's tried antacids, tried gastric emptying meds, I fear this may be his only option. Of course, if it helps and is advised, we'll have to do it, I just hate this for him. He's been through too many surgeries already. Please let him just have some break from it all. He already has another big surgery on his foot/leg next month and will have metal pins in his leg for 2 months and a cast for I think 3-4 months. I don't know how much more we can take.

I know it's blurry (I'm going to launch my camera into outer space soon!), but here is he with Katie at his school assembly we went to last month. Tony's company raised £1500 for Jack's school and there was a little presentation of the cheque. He was just in his element and it was lovely to observe him from a distance, then he noticed us and waved :)

Click to enlarge if needed.

A fine old mess

No thank you, Ben Ben... please, you have it!

Number 1 toy of all time?

The good old cardboard box.

Feeding update

I haven't pumped for 9 days. Man, that feels good!

I still can't quite bring myself to stop feeding him completely though. If anything though, things have actually gotten better with breastfeeding. I could only feed him once per day in the past due to his latch and pain, but since supplementing him and quitting the pump, I feed him 2-3 times per day. It's not for very long as I don't think my supply is very high, but at least we still have something and I think because he's quick and he sees it as a "top up", it's not hurting me too bad.

When I pumped I never quite felt empty and I think that's what brought on all the clogged ducts and mastitis. Now I feel totally normal and like I said, I doubt I have much milk left (even though I hear him swallowing) so when we come to stop for good, I don't think I'll get the engorgement issues.

It's just handy to fall back on when he needs comfort - fast - and it's a nicer experience when he's all sleepy. Not so much when he is super distracted and reacts to any sound by yanking his head while still attached. I've been bitten, scratched, kicked, slapped... the things we do for kids! This has been an odd 8 months. I'm glad he's gotten the benefits, but if I'd known at the beginning of the problems that would come, I'm not sure I would have started. Knowing me? Probably. I'm too stubborn for my own good.

I don't know how much longer we'll go on. Depends on my supply and the teeth! I doubt I'd ever make it to 12 months, but if we did, that would be my limit so I'm still wait and see what happens.

My husband is going to love me!

He loves fruit scones.

I tried to make him some yesterday, but didn't have an ingredient - baking powder - and skipped it thinking "how important can 1 tsp be". Well, turns out, it was very important ;-)

Um, more like rock cakes.

So, while shopping yesterday, I bought all the proper stuff and tried again today. I don't like scones so I can't taste test them, but they sure do look good! Here's hoping he likes them.

Yes, I am sad, I cut a couple into heart shapes for him!

JACK!

So, this week is "half term" from school and I have to admit I was dreading it a bit. What an awful thing to say, I should be loving that I get to see him all day. I hate that his behaviour affects me in that way.

Anyway, I thought we'd brave it and go grocery shopping when Tony came home from college. Usually it is a crying match (often feel like it myself many times) from start to finish, but he did AWESOME!!!!!!!!!!!!! I think that's my new favourite word ;-)

We took his new PECS cards to try so he had the pictures on a little card in front of him of things we were looking to buy and we'd ask "where is...?", he'd point to it on the card, then we'd look in the aisles. Katie also helped, but trying to take the cards off (velcro) so we got a bit muddled sometimes. Medical physics have also provided us with an adaption to put on the side of the trolley, really it's just a little shopping bag for him to put a few things in and he loved it - except when he went to put the butter in and dropped it so it squidged everywhere, lol. It was just amazing though. I can't think of one time he shouted, not even at the checkout, which is usually a trigger for him.

We even got to go to the cafe and he was just so smiley and tried some of Katie's jelly and loved it. It was quite late so we were pretty much the only ones there so she was running up and down - something I need to follow up asap because I've noticed her lips and mouth are going a bit dusky after she's been exerting herself, but sometimes even when she hasn't been doing anything. They checked her heart via fetal echo when she was in-utero and after birth because of Jack's heart problems and she was always fine, but she is concerning me a bit lately.

On the way home, it was so uplifting. The difference in mood for us all from a pleasant outing was amazing. On one hand I'd like to be optimistic, but realistically I doubt he will be permanently different overnight. It was probably a fluke and it will be a crash if he acts as usual the next time. We'll definitely take the cards again and get a few more pictures of things to fill the gaps a bit. Please, please, please. Life would be easy if he could be like that even half the time. It's hard not to build my hopes up.

Today is the day

Ben is moving into Jack's room. Well, it is now *their* room. It looks awesome.
We only need to get the carpet. It has been a long time coming so we took the plunge and moved his cot in.

I'll take pictures later, but Tony has really outdone himself this time. Blue wallpaper at the top for sky, green at the bottom for grass (shaped as hills), giant jungle animal stickers and glow in the dark stars on the ceiling. Jack was absolutely super excited.

Since I'm backdating the post, it is going really well. I was worried. Yesterday was a bit iffy with them trying to nap in the same room, kept waking each other, but Ben is probably going to sleep better at night. He'd always cry in our room before going to sleep, but so far has been pretty much out like a light. It was a very bad night with Jack last night, he was sick a lot and crying, but Ben slept through!

It has been strange as Jack and Katie were only in our room 6-8 weeks, so 8 months has been a long time (poor Jack has had half his room as storage as we've been decorating other rooms). In a way I miss him, but it is better for him to be on his own - and we have reclaimed space. No more getting up in the middle of the night and tripping over goodness knows what or stubbing my toe on his crib trying to navigate in the dark!