New Year's Eve

We had (another) quiet evening. We took the christmas tree and decorations down yesterday as there are just so many new toys cluttering the room. We must convert the garage to a playroom this year! Once the kids were in bed, we played Super Mario Party 8 on the Wii (I won), then watched Children of Men on HD-DVD. We paused a few minutes before midnight to switch to TV and watch the Big Ben chimes and London fireworks. I always feel a bit emotional "ding dong, ding dong, ding dong, ding done......silence....wait for it.....chime. Happy New Year!" (sorry I'm back and forwards in my tense, I'm writing it on the 1st, but back dating it).

2007. Where has it gone? It just seems to have passed in the blink of an eye.

Ben. The highlight was obviously the birth of our last baby, Ben. It was just a wonderful event and experience. Will I always remember it so vividly? I hope so. I hate the thought that one day I might not recall all of the details or feelings as I do now, it was just so amazing. He was the first baby we didn't find out the gender for, so I think that extra surprise just put the icing on the cake. I'm trying to enjoy everything I can since we'll never have these baby milestones again. He is just so lovely. Cute little face and his emerging personality is pulling me in. He's my most clingy baby but is constantly wanting to explore and sings himself little tunes. His smile, yes, that's what it is all about.

Katie. She has changed so much over this last year. She has gone from just a little baby to a walking, talking, funny character. She did everything late, didn't walk until 20 months old (February) and hasn't stopped since! She is always on the go, she has to touch everything. She certainly only does what she wants to do, very strong willed, but she is so lovely. She cracks me up every day by the things she says and does. She's my little buddy and I think she's really going to enjoy when she goes to playgroup and nursery in 2008. And... when she doesn't think I'm watching, she is very sweet to Jack and helps him a lot. I just don't think she wants to admit to liking her annoying brothers!

Jack. Lots of new things for Jack this year. He started school, how on earth did he get that old? Part time in January, then full time in September. I can't say enough how wonderful I think it is for him. His teachers are lovely and very skilled and patient in all they do. He has come on so much this year. We've had lots of ups and downs. Surgeries, illness, lot's of things haven't changed. He's still tube fed, still can't walk, but the things he can now do? We've had first words, then a whole vocabulary! Some words are very clear, some only we can understand, but he is trying very hard and is dropping some signs in favour of speech. He can count to ten!! He knows some colours. He can now move where ever he wants, shuffling himself across the floor. And something he has never likes - physical contact - he now actively seeks out. He'll get right to your feet and motion with both arms outstretched and wiggling his fingers to be picked up and cuddled :). I think 2008 is going to be a great year for him!

Tony. We get stressed, we get irritated, but I love him more than I ever have. He is my rock. He is a wonderful provider and comforter. He works very hard and never asks for much. He gets very little free/relaxation time, between work, college, DIY, kids, etc. 2007 has been professionally rewarding to him and I'm glad he is getting recognition. He is on the verge of a promotion in January and he deserves it. I want him to be happy in his job. Sometimes he has to travel and I do find it difficult as even though it may only be one day, it's still hard for me, but I know he needs to do it for his own self worth and to allow me to stay home ;-). I might not always say it, but I have a lot of respect for him. He is a real man. Despite what he might think, I am proud to be with him and to share my life with him. We're coming up to 7 years in February, we've had MANY hard times, much heartache, but we are stronger than ever and I love him.

Me. Truth be told, I feel like I've lost myself a little over the years. Whilst I think my job as a mother is extremely important and necessary - I wouldn't change staying home or anything - it has consumed me. I feel like that is my only identity. With Jack being at school, that has provided a huge amount of respite, but we still have many pressing issues with him and it carries through to how I act and react in other areas. I feel like I've been too miserable this year. I have everything I want and really do count my blessings, but it's tough sometimes. My "mistakes" have been that I haven't looked after myself properly in body and spirit. BUT, I am happy and healthy (not today, but mostly ;-) ), I have a wonderful husband who I love and who loves me back, and 3 gorgeous little beings who I would not change for the world. Life is good!

In a way, the end of the year kind of makes me feel a tiiiiiiny bit sad as yes, I can reflect on all the positive and nice things that have happened, but on the other have to actively "think" about the not so nice things to put closure on them - and what if I don't want to say goodbye to the good things either?! It is like we're pressurised into resolving to do *better*, no matter what you might have achieved. On the other hand though, clean slate and a fresh outlook and time to dust the old cobwebs!

Birthday dinner

Every year, we go to my dad's for a christmas dinner/my birthday celebration.

My stepmother does all the cooking and it's nice to just be waited on for a change. It's good to get together as my brother, sister and their respective partner's are all there too. I was very tired this year though, I wasn't completely in the mood, but luckily the kids always provide good entertainment so I don't have to participate too much.

10 months

It was also Ben's "birthday". Double digits. How did he get to be 10 months old already?
He hasn't made any physical progress in the last month. He's still trying hard to crawl, but ends up spinning in circles or swimming backwards. He's got his new brace so hopefully that will help his feet as he still goes over on his ankles if I stand him up.

Regardless of that he can or can't do, he's still my lovely little guy!

Happy Birthday to me

I'm getting too old ;-)

Tony was off work sick yesterday, so still was not feeling well today. I got some headphones for my new Ipod and an SD card for my camera :).

I had a low key day since none of us were very well. We went to a couple of shops, but weren't overly impressed with the sales. I bought a case for Ipod and that's it. We usually like post christmas shopping.

We stopped by Paul and Cheryl's (my brother & his girlfriend) on the way home and he had bought me Scene It? for the Xbox. I was just looking at that a while ago. It was a lot of fun. Paul totally beat us.

Jack, Jack, Jack... so, he can't crawl, stand or walk but that doesn't mean he can't get into trouble. He loves doors! Is fascinated with them. He loves to shuffle in and out and just have a look around. We were playing the quiz and heard Katie say "Oh, Jack, no. Yuck!" He'd just left the room and was only 5 metres away, but thought it would be a good idea to mix their cats' (Toggles, Kuma and Neko) milk, cat food and biscuits all together. Lovely mess, lol.

When we got home and the kids were in bed, Tony & I played again and I won :). I think we decided to do my birthday "properly" when we're feeling better.

Just go away

Stupid illness.

Tony is sicker today. He's only been up for 5 minutes and it's 4pm now. It's a horrible exploding head/burning lungs/painful cough/aching joints/muscle feeling that just will not go away. He only had yesterday and today off work for Christmas and has spent all of it (today) in bed. I know if he's sick tomorrow he'll try to go to work, I might have to chain him up. Poor guy, it must be bad as he would never stay down for no reason.

It's my birthday on Friday, so looks like we'll all be staying in.

Kids have run me ragged too. Sigh, Katie's crying for me again and Jack is too quiet in the other room - he had better not have ruined my laundry pile...! ;-)

Merry Christmas

This is what it is all about, the ability to just spend time together.

The kids were super excited, more so Katie. Jack was overwhelmed by all the gifts and chaos so he didn't have a very good time opening his presents. He did have some fun though. He was happy initially, but started crying after a few gifts. Katie just dived in, she was really cute. Ben played with the paper and boxes, as anticipated!

We had a nice time during lunch, well, tea since it was around 4pm by the time we got to eat. Even though Jack is tube fed, we sat him at the table with us and he seemed to like that and trying to "pull" the christmas crackers. Ben wouldn't keep his hat on ;-).

Bit stressful at times, but overall a good day. All over for another year. Isn't it weird how much anticipation builds up and it is all over in a flash.

December hasn't been a great month, we're all still sick so don't have much energy to really get in the spirit. The amount of tissue we've been through is unreal. If I have to wipe one more nose...!

Santa was good to me. VERY good! I've been complaining about my camera for months and was over the moon to have received a Nikon D40X!!! And an Ipod! Hubby did good :)

I know it's shadowy, but I love how the light catches her face, excuse the nose!

Aw, poor Jack -
Me and my boys -

But, hey

Look at this face and tell me there is not something to smile about (click to enlarge to see just how gorgeous he is!)

I usually do my christmas cards with how ever many kids I have that year, but Jack and Katie wanted nothing to do with it this year... too sick and tired.

I still think Katie's first xmas picture is a classic -

And now

Food poisoning for me. Just kill me now. Ugh.

Stay tuned

We've all been very sick so I haven't felt like blogging.

Highlights since Friday have been Jack's Christmas party hosted by Down Syndrome North East (good fun!!), his paediatrician review yesterday - had a very good chat with his lovely teacher - and Katie's toddler group Christmas party this afternoon (poor baby didn't understand the concept of PASS the parcel).

Will try to catch up soon.

The answer

If ever I was to ask the question "why?", today I got my answer.

Who am I kidding, I ask "why?" quite a lot. Not as in "poor me, I'm so badly done to, let's get the violins out", but more introspective like why was I given to these kids, am I doing a good job, surely they deserve more than me and my feelings when I find it difficult to cope. What is the meaning of it all, what message am I supposed to be learning?

Today was Jack's school Christmas concert. He goes to a fantastic special needs school with kids aged between 3 and 11. It lasted for two hours and I have never been so humbled in my life. I know every parent is very proud on occasions like this, no matter what their child's age or ability, but it just felt different. Extra special.

It started with the older classes doing various singing and dancing from shows like Grease, Mary Poppins, Singing in the Rain, etc. There are some profoundly disabled children there and even though not all can walk or talk, every single child had a role to play and every child went on stage. One of the songs was Over the Rainbow and that really brought the tears to my eyes! To see the innocence and joy on their faces and how special they felt in the spotlight.

Ben and Katie were rather tired as they've both been sick so it was difficult to keep them quiet and I had to go to the back of the hall with Ben at one point, but it was eye opening to watch everyone and just observe.

Jack's foundation class and the younger kids did the nativity story. I kept looking and looking to see him and couldn't find him - and then - there he was. He was wheeled on stage to be one of the innkeepers who said no room at the inn. Well, they knocked on his tray and he waved at them, lol, and signed (Makaton) no. He was beaming! He was moved to the back, but I could still see him and he sat throughout. No getting upset or being bored, just taking it all in. He then came back in the middle of the stage until the end and he just looked so happy.

He of course had no idea we were there. When it was all over, the kids were going for lunch so we went to see him in the corridor and when he saw us he did a double take and was like "woah, HI!!!!" He was very excited to see us. He's never been very touchy feely until recently and was sitting in his chair and waving his fingers for a kiss and cuddle!!

I got lots of pictures and video. I don't know what the quality is like, but I'll sift through them later to see if there is anything to upload.

I was very proud of him. So. For those times I'm pulling my hair out when he is acting up, or feeling frustrated that yet another person wants to make an appointment to complicate my day, I'll remember back to this moment, to seeing him up there, to seeing how hard these kids work and the obstacles they have to face every single day of their lives just to get by... and appreciate that every achievement however small and insignificant it may seem is the reason, or answer to, "why?"!

Sick kids

Poor Katie was pretty ill today, another bad cold. She gets very clingy and emotional when she's sick. She's also teething her bottom molars. She's woken up crying at least 4 times tonight already and her throat seems really sore. We were supposed to be going to a christmas party at her toddler group tomorrow, so looks like that won't happen, she was really looking forward to it! Ben has also been coughing and his nose is constantly running. Jack is ok for now, touch wood. I think it is just a matter of time for him. Looks like he has another infection of his g-tube site though. He has his review with his ped on Monday and the gastroenterologist next Thursday.

Ben...what a sweetheart. He is trying so so hard to move. He's just spinning in circles or going backwards, but I'm hoping he'll crack it in the next couple of weeks. He's up on his arms and looks like he's trying to get up on one knee, but at the last minute ends up flat again. He does seem to be more determined to roll lately, he's done it a few times today :)

Bullies

I know kids are kids, but I was so annoyed at Katie's toddler group today. Same little (older) brat that has hit her in other sessions, whacked her with a toy at snack time and jammed her fingers in the play kitchen. Then later, tried to take away her drum while singing. The mother was nowhere to be seen, he just runs riot. He is a terror and won't be going near her again!! I was right there, but had a hold of Ben at the time and couldn't reach out quick enough. Poor thing, she's coming down with something I think so was really upset, usually she just brushes these things off.

Down in the dumps

I've been feeling out of sorts since Jack's op was cancelled and I tend to withdraw when that happens. Almost seems to be a permanent feeling these days. Sorry my blog has been very quiet!! I've backdated as much as I can remember since then so will hopefully keep up to date from now on.

Thank you Lisa for checking on me, I'm fine. Time to put my big girl pants on and get on with things.

Playgroup

Or pre-school as they are tending to call it lately. I called in today to sign Katie up. We can't really afford more than two mornings a week, so from January she will be going from 9-12 on Mondays and Fridays. I'll stay with her for the first week, then she's on her own! My girl is growing up. I think she'll do alright. It's the first time she'll have been anywhere without family. We go to a toddler group on Tuesday and Thursday afternoons, but those are where the parent stays. This is completely children and staff. It's just around the corner from home so that is good too. She already has a place lined up in September for nursery school (funded), which will be every afternoon Mon-Fri, so hopefully by then she'll be used to that environment.

I'll not know what to do. Jack is in full time school, Katie will be gone a couple of mornings, it'll be just me and the little boy - who really is a good baby, so he better not give me any trouble :)

Christmas evening

Jack's school had a little Christmas event tonight. A raffle, music, Santa etc. We thought we'd take the kids to see how it went. Not well! Jack didn't like it at all, too loud, too dark, too many people. Katie was disappointed as I'd accidentally told her it was a party so she was expecting balloons, food, presents (remembering Jack's birthday). Ben was fine!

I thought to heck with it, we'd wait to see Santa anyway, so we endured the queue and tried to keep him occupied as much as possible. When he got to the front he was really starting to object, but when we went in, it was through a silvery, shiny door way thing which he thought was cool! Katie was *very* standoffish when she saw "Santa" as he made his way to the grotto, so I thought she'd not like it, but they both enjoyed it when they got in and talked to him as it was all decorated and had lights.

Santa to Katie "and what would you like for Christmas?"
Katie "an owl".

Um, ok, lol.

She was particularly happy when she received a little bag of sweets and Jack and Ben some bubbles!

We left after that and though I wanted to give up, I faked it with them when we got to the car and tried to keep things very upbeat and they had a great journey home. Katie was constantly "Ooooooh! Look at the lights, LOOK!!!!" as we drove past decorated houses.

They all enjoyed the bubbles at home :)

Ben's feet

I took him to get measured for a different type of shoe on Monday as he keeps escaping the current ones and hurting his feet. They look very cool, like little spaceman boots. Hopefully they'll be ready soon. He finally saw the consultant today and says his feet are "coming along". I was feeling a bit down and disappointed though as in the waiting room, there was another boy Ben's age who had surgery on the same day as him back in June and his feet are perfect now. We go back in another 3 months where I guess he'll decide whether Ben needs another operation.

He told me the date of Jack's new surgery while I was there. Great news, it's not too much of a delay. Bad news, it's on 16th January - Tony's birthday!!!!!! Something like this always happens, we can never celebrate anything on time. Miscarriage on our anniversary in 2004, surgery for Jack two days before christmas in 2005, surgery for him the day before his birthday 2006. Sigh. Ignore me, I'm in a fed up mood.

Bowling

We finally got round to taking my brother and his girlfriend - that was supposed to be for her birthday in August! Every time we've tried to arrange it between then and now, something has come up on either end.

My mam came to mine so the kids could be at home, then Tony & I went to Paul's and watched Mission Impossible III on HD DVD. Very impressive quality. The movie was good and action packed, but a little cheesy in parts.

We then went bowling and I got absolutely thrashed! I won the last time we went and was 33 weeks pregnant at the time! Nothing went right tonight, I couldn't find the right ball - that's my excuse, lol. We went back to theirs when we were finished and they treated us to kebab and chips. Yum.

It was a nice few hours break, much needed after this weekend.

My little doggy

We went to the library this morning and happened upon a christmas activity morning. It was going great, Jack was even being good - until the puppet in the show he was watching let go of a half filled balloon and he went THROUGH THE ROOF! We couldn't get him to stop crying no matter what we did or where we moved him so we had to cut it short.

Katie was able to write a letter to Santa, decorate a xmas stocking and get her face painted though. It was a little smudged by the time I could take a picture as she was crying when we had to leave :(

Goodbye my breast friend

I stuck to my word and Ben was breastfed for the last time yesterday. Today is the first time he has never had breast milk. It has been very, very difficult (for me). It was the right time though. He was only feeding once a day and getting very little volume. If that was the only problem, I'd have just continued until he stopped himself, but his latch is crazy so it hurts bad and the pain/blisters weren't worth what he was getting.

I have been so tempted to try just "one last time", but I'm going to be a big girl and resist. Who would have thought. I was never keen to even try breastfeeding, but letting go has been weird. I am not this type of person at all, I didn't think I would ever be this bothered!

Still, our last feeding experience was everything I had wished it to be so we are finishing on a high.

9 Months

Happy 9 months to Ben!!

I find it absolutely staggering that 9 months have passed, it's crazy. He is growing up so quickly. Luckily, he's just a little thing, so he doesn't seem too old ;-)

We're still making slow progress on mobility, but he's now spinning and going backwards in his attempts to move around. Poor thing doesn't have much opportunity with his brace so I'm not sure how he would get to crawl, but he is healthy and happy and just gorgeous.

Jack's surgery cancelled

Will write more later. I'm pretty disappointed, it won't be until after christmas now. It sets any physical development back months now. If only they had done it last month when they were supposed to - the doctor went on holiday. He only developed a blister in the last few days, which turned to a scab, but it is an infection risk so a no go.

Gruesome

I forgot to mention yesterday. There were reports on the radio in the morning of a woman's body being found a couple of miles from us. We were dropping off a piece of furniture for my brother's girlfriend's mother and on the way home drove RIGHT PAST the scene.

You know you see on the news the police tapes/cordon and the white tent? I guess you get a bit desensitised to seeing things like that, but actually seeing it in real life made me feel a bit weird. I mean, not 20 meters away was some poor murdered woman, I could see the forensics guys in the white suits. I don't know how old she was or the circumstances, but it was "real", wondering what happened to her, what her last moments were like, if she had family.

Don't really wish to see anything like that again!

Vacancy

Tonight Tony & I made Parmesan Chicken that I got from J05 a while back.

OMG, it was delicious!! Very tasty. I will definitely, definitely be making it again sometime. We had buttered linguine, the meal was to die for. Complemented by a rather nice bottle of wine. We really don't drink so after one bottle between us (at 11% volume) we were both a little tipsy. I forgot to take the Lemon Meringue out of the freezer though, boo hoo.

We settled down to watch Vacancy. It started ok, I was definitely jumping when people just popped up from nowhere, but the end was a bit disappointing, it just seemed to stop and I was thinking "eh?". I still didn't want to go into the garage by myself to get our ice cream though ;-). We had popcorn and it was just a nice evening. We should do that more often.

Jack's birthday party

Was today. He had a lovely time. The picture of us all in his birthday post was actually from today. Can you tell Katie was very excited? She sang Happy Birthday many times and was just in love with the presents, balloons, CAKE!!! Jack did very well with the wrapping paper and doing his signs for "thank you".

It was a little awkward. Only my side of the family were there. My parents are divorced, my dad is remarried. My mother "still loves" my dad after all of these years so there was a little atmosphere and didn't look very happy. She was a totally different person when it was all over. This is the only time they see each other and having 3 kids now, there are obviously more birthdays and it kind of makes me want to just do separate things, but that is a pain. I did think my dad was a bit silly to have my step-nephew (2) sing "Sandy" to Jack. He wouldn't have done it deliberately, but I was cringing a bit when my dad is singing with him when she was in the room -

"Sandy can't you see, I'm in misery
we made a start, now we're apart,
there's nothing left for me
love has flown, all alone
I sit and wonder whyyy oh why
you left me oh Sandy".

!

Jack has also done very, very well in the car this weekend. Since he is more motivated by praise from his teachers than us, we're introducing a reward system whereby if he is good at home and doesn't cry in the car, getting dressed, shops etc, he gets a star that he takes to school and they really go to town with congratulating him. I don't think it will be long before he makes the connection so hopefully we will see some improvement. I haven't tested it in the shops yet, but the car was definitely a much more pleasant experience. We were even stuck in traffic and had to wait quite a long time to pick up a delivery and he was ok!

Scammed!

Oh boy.

We just "bought" a new TV. What a great deal because yes, it doesn't exist! The website for the company is down, emails and calls unanswered, many people on a forum I got the tip off from haven't received deliveries. Not good news. This is the first time in all the years I've been buying online that something has gone wrong.

I have some protection as I paid by my credit card, so I'm just waiting to see if they'll do a charge back. I guess this will take some time though and since my credit card bill is due for payment on Tuesday we're still going to be out of pocket. Happy Christmas, eh.

My poor girl

She fell over at toddler group and split her lip open. LOTS of blood. I felt awful for her, she was very brave though.

Ben had his appointment for his foot. Another huge waste of time. I thought it was to see the doctor, but it was just the physio. Nothing happened so I didn't see any purpose for why we were there.

He's back on the 3rd December to get measured for a different type of brace to hopefully help him stop pushing his way out of the shoes and getting awful blisters.

Happy Birthday Jack!!!

Happy Birthday to you
Happy Birthday to you
Happy Birthday dear Jack
Happy Birthday to you!

4 years old. Wow. Time flies.

No sweets!

Man, this has been hard. How long has it been now, 2-3 weeks? Jelly sweets (Haribo) were my main addiction. Yum, the sour ones, my mouth is watering while typing... Tangfastics, Starmix, boo hoo. I just love them and they were easy to eat since I don't eat properly during the day. I haven't had any since the last time I said I was going to quit/cut back.

Of course, yes, I do still have the odd chocolate and biscuit, but at least it's not chocolate, biscuits *and* jellies. I could seriously eat a whole pack in a few days. I miss them like mad, but I'm holding out. Once I get my treadmill back, I'm going to start running again too. I've noticed my pants are a little looser, but I REALLY need to get rid of some flab and get toned up.

I guess we'll be done with breast feeding next week - I don't even want to post about that yet as I feel like crying every time - so I can really work on my diet and exercise.

Aren't people funny

As in strange, weird, bizarre... I don't think anything really surprises me any more.

Got to love the internet.

That is all.

Busy, busy.

I can't even remember what I've been doing to excuse the poor upkeep of my blog.

Friday night Jack and Katie stayed overnight with my mam, so it was lovely to recharge the batteries. Tony & I went food shopping (exciting stuff ;-) ) and on a whim ordered a new all singing, all dancing TV for christmas. If it comes to fruition, it was a VERY good bargain, saved around £600.

Saturday morning was lovely. I feel awful saying that. Ben was so pleasant and we were all up, dressed and out the house by 9.15 to run a few errands. That doesn't usually happen in our house, lol! Tony fitted the carpet in the boys' room. Once I tidy it up - after the hurricane called Katie - I'll finally take some pictures.

Sunday was a bit harder. Jack was in a stinking mood. Tony laid the tiles in the bathroom floor so things are progressing nicely to hopefully get a few rooms finally done for christmas. I hope that doesn't pressure him if he reads this. I don't expect them to be done, he's pretty tired and needs to start revising for his next exam in January, but from what I can tell, the main hard work is done.

I'm breathing a peaceful sigh for school today :)

It's Jack's birthday on Wednesday. He doesn't really understand that yet, though does love singing happy birthday so he should enjoy that part. I'm think his class will throw him a little tea party. I don't know if we're doing anything for him (as in take him out when he's home from school) on the day, to be honest I don't think he would enjoy anything, but we'll see. We're having his party on Saturday. He is getting a giant talking Pooh bear, it's nearly bigger than him, and some pop up/lift up flap books that he is going to love!

Potty training

Don't you just love it! Not.

I started to introduce her to it in September and it was a disaster.

We have actually had some success so far today at her initiation. Katie asked to go back to bed very early, around 10am and although I didn't believe her, I took her upstairs. When we got up, she said she needed the toilet! She has never wanted to sit on the toilet, the few times she has gone have been on the potty downstairs, so I sat her on it. She didn't do anything and then said "no more baby nappies", I was amazed. I thought it couldn't suddenly be this easy, but was very positive with her about bye bye nappies, just for little babies like Ben, big girls have knickers and she readily put underwear on.

Fingers crossed we headed back downstairs - no, she really didn't want to go back to bed! I reminded her every so often she had no nappy and to tell me if she needed the potty/toilet, but tried to leave it to her. Very tiny accident when she was having lunch, but luckily she was sitting on a towel so it didn't even soak through. I told her it was alright and went to get her some more underwear. When I came back she had sat herself on the potty so I just left her while I went to do Ben's dinner. When I stood her up, I saw she had gone on the potty by herself, woo hoo. Singing, dancing, chocolate, cuddles, back into underwear, so far so good, almost 2pm now so she's off to bed in a minute.

It will probably be a different matter entirely when she gets up, but for now, I'll take any progress I can get :)

Hospital - this is going to be long, sorry.

So, you know that Radioactive guy from Heroes? That was me today. Have you ever been so ANGRY that you wanted to explode?

I get to the hospital with the kids at 11. Try for ages to find a parking space and can get nothing. I had to come back in 3 times and finally went for a disabled space (Jack has a permit) away from the hospital, same grounds, just not main area. I didn't want to use the carrier, so had Jack and Ben in the buggy and let Katie walk, fun.

Finally get the the ward and they direct me to the playroom. Small room, 3 kids myself, two other families there for pre-admission. Wait, and wait, and wait, and wait. Nurse comes, takes a history, weighs him, SATS, temperature, BP, wait and wait and wait and wait. Lunch has been and gone. As Jack is tube fed he didn't get a hot meal and Katie was drooling at the other kids eating (in the playroom!) so I had to occupy her with a chicken sandwich, crisps, juice and yoghurt, set Jack up with his tube feed, feed Ben in the buggy.

Wait some more. One kid gets sent home as he has a cold so his surgery is put back, I'm left with the other family. Outgoing lady, talking non-stop, not always to me, just herself, singing at the radio. I'm beginning to get frustrated. Becomes clear we're there for the afternoon and won't be going to playgroup. Mr Bliss' SHO (junior?) stops by "I don't have your son's notes, why don't you start at the beginning, tell me all about him, why he's here".... KABOOM!!!!!!!!! Seriously! Where the f do you want me to start?? 4 years of his history, everything is relevant? I think she regretted asking due to all her writing. He's up to 3 files now in his notes, I am SICK TO DEATH OF "STARTING FROM THE BEGINNING" EVERY TIME HE GOES TO HOSPITAL - A LOT!!! I *just* gave the summary to the nurse with his current medication, I don't want to tell it to you again. I think I did very well to keep that reaction internal ;-).

Wait.
Wait.
Wait.

Katie is hyper by now, Ben has not slept a wink since 10.45, it's around 4pm at this point, he's screaming. 4.20, still haven't seen the doctor, I don't know whether to laugh, cry, throw something, beg for mercy. It wouldn't even be so bad if he had been given a bed on the ward - it was a small playroom!

Finally get to see the consultant. His surgery will be the 28th, on the basis his g-tube infection is cleared. He was due to be admitted on the 27th, but would literally be sitting in a bed doing nothing all day so persuaded him to let us come in early on the 28th. Yipee. One less night in hospital and Jack gets to make his school trip to see the christmas lights at the garden centre on the 27th.

He explains what is going to happen. He will open up Jack's leg and foot. Move some muscle, switch some tendons (don't know about the bone, Katie was tearing paper towels at this point) and put pins in his leg and cast him. He said it will be an extensive operation, almost seemed apologetic. He's a nice guy though so I am confident in him. He explained the risk of infection is high so he will not close the skin. As Jack's foot is not formed correctly, his skin is sort of fleshy and he said with the trauma it would not knit together at that stage, so he will recover in hospital maybe 3-4 days, come home and go back two weeks later. This second stage, he will manipulate the leg and foot further and can then stitch him up as the skin will be healed and cast him again. 4 weeks after this, he'll come back again (all of these are under general anaesthetic), another revision and remove the pins and he'll get the "final" cast? This one for 3 months. He says this is as much as he can do at this point. He does not think it will necessarily help Jack to walk or stand, but he'll have everything in place for if he does. He suspects more surgery in the future (I guess years down the line), but this is as good as he will get. Once he is healed, Jack will go into AFO's (ankle/leg supports).

I didn't get to ask about Ben, though he knows I will see him again next week. By this time it was almost 5pm and I had to leave to get Tony from work.

I was furious. Not at the doctor, just at the situation. Why did I have to be there almost 6 hours? I could have gone home and the kids could have had a 3 hour (yeah right, but in theory ;-) ) nap with the gap I was sat doing nothing. But of course "he'll be here soon". It is always one thing or another, the bureaucracy is crippling.

As I recounted this tale to Tony on the drive home he said "I'm kind of surprised you're in such a good mood". I wasn't in a good mood ;-). At this point though, it was either put the afternoon down to a bad experience and let it go, or I think I may have cracked up. Yes, I should have listened when he suggested last night I ask my mam to come to the hospital when she was finished work to take Katie and Ben home, but the past 3 times, we've been out by 1-1.30. I really wanted to take him to the toddler group. When it became obvious we were there for the long haul, it was too late. She has no car and would have had to get 2 buses to get there.

Aaaaaaaaarrrrrrrrggggggggggggggghhhhhhhhhhhhhh!!!!!!!!!!!

Breathe.

Nothing else to do but hope the infection gets cleared (6 days of antibiotics left), ring the hospital the night before his op to see what the nil by mouth (ha, nil by tube) instructions are and what time we need to go in for on the 28th.

I am really trying to have a positive attitude for all of this, but am failing miserably. I'm just on autopilot. I need to *live*. I don't know how may times I have sat and looked within myself and hated what I am seeing, what I am becoming, promising to do better tomorrow. My kids deserve a better mother, my husband a happier wife, I am so thankful for what I do have, why can't I show that? So, tomorrow....I will make it a better day.

PMS?

Are my monthly cycles returning? Is that why I feel so "depressed"/unable to cope with things? Hormones? I haven't had a period since Ben was born, so 17 months now? I'm still breastfeeding twice a day, but compared to when I was pumping, my output is probably way down. I've felt very crampy for the past few days, I bet it will be any time now. Shame, it has been fantastic not having to worry about periods! Of course the fertility bit is a moot point - Tony will be going for his first post vasectomy tests soon!

Speaking of breastfeeding... last week I said I was going to wean down over the next couple of weeks and stop at 9 months. Given all of our problems, it's a miracle we made it this far. When it comes to the crunch though, I don't know if it's the right choice. The pain is not too bad for twice a day and he may not be getting much volume in breast milk and has adjusted fine (with the exception of constipation) to the introduction of formula, but he still seems to enjoy it, even if it is only for a few minutes. Particularly in the morning, we're in bed, kinda sleepy, not yet thrust into the chaos of the big kids, it's just a nice few minutes of bonding. I know we could bond in other ways though. What to do, what to do...

Pre-op tests for Jack

I'm at the hospital with him tomorrow for all of the tests. Nothing major, meet with the doctor again to finalise things, probably do his SATS, weight, meet the anaesthetist etc, basically clear him for surgery. I don't know why they do it so far in advance. His surgery is on the 27th, but he has a bit of a stuffy nose right now. Of course I would never put him in any danger, but I hope it doesn't get put off again. It was supposed to be a month ago but the doctor was on holiday. This is getting into iffy territory as he always gets a cold during winter and it stays with him a long time. Hopefully he'll be good to go.

Ben's appointment was supposed to be on Thursday, but again it has been rescheduled for next week. What is it with this department??!! I really needed to see him about Ben's brace. He's getting bad blisters on his heels, but if I take the shoes off his feet are turning in. I'm going to ask him quickly if he'll advise. Don't know if he will without his notes, but can't hurt to ask.

Technically, we have to be at hospital from 11-4, yikes! He'll not go to school tomorrow. In the past it has never took that long, so if we get out by lunch, I'm going to attempt to take Jack to Katie and Ben's group. This could go very badly. I don't have any help so I am really worried about having all 3 kids at the hospital. Ben is a pretty good boy these days, but Jack and Katie are hard work. I would love for the people to meet him though, that is if he is good and doesn't scream at me!

In a funk

I was in a completely bad mood tonight. Don't know why, just couldn't shift out of it.

Maybe something to do with having spent 1.5-2 hours this afternoon with Jack's occupational therapist answering questions about him for his sensory profile.

They'll probably say that he is fine. Not sure if that is good (as he certainly doesn't need anything else to deal with) or bad (I'm just so desperate for a reason or answer and if there was something, maybe he could get some help or treatment).

I don't like myself on days like these.

Christmas shopping

I love it, I love Christmas!!! Granted, most of my shopping is online these days, but it is great when they arrive at the doorstep.

It is so hard when I have presents hidden to not just give them now. I've gotten a few bargains this year so had to buy early to get them and it's killing me to wait. Maybe I should wrap them up now so I'm not as tempted. I'm really only talking about Tony's presents here - if you're reading, nice try, I'm not revealing anything here!

Bonfire Night

Tonight is Bonfire Night so we went to see the fireworks. Unfortunately we had to leave Jack behind with my mam as he could not have coped with it, so we trekked out with Katie and Ben. It was the perfect night for fireworks - clear skies - but that means cold, so we wrapped up warm. Katie had been really looking forward to the fireworks. We took her for her first two years, but she was too young to notice so it was a bit of a surprise that she was frightened. I felt bad. She loved the quiet ones but she got a bit of a shock at the very big loud ones. Still, I cuddled her and she was ok by the end. Ben didn't flinch at any of them, he just chilled back and watched all the sparkles. I wish Jack could have been there (his OT is coming on Wednesday to do a sensory profile on him as the next step is to explore a sensory integration disorder for the behaviour), but he had a good time with nana.

We came home to baked jacket potatoes. Yum!


Preparing to come home, tired afterwards (Britax car seats in the UK don't have the chest straps I've seen on other pics. They are a 5 point harness, but the additional buckle joining the two shoulder straps looks a lot more secure, I wish they did have them).

The Lion King

I know, lots of tv and movie posts here.

Am I the only sap who feels a bit tearful/moved when he lifts the little cub up at the beginning and end? I've watched this cartoon many, many times and it still gets me.

I had to keep Katie occupied while I finally tackled some ironing (yes, I used the ironing board, not the little table, lol, and I never did get that drink!) so thought I'd put a DVD on.
It's the first time she's really seen a cartoon movie. I wanted to watch Finding Nemo (um, erm, I mean, for Katie), but the DVD player wouldn't recognise the disc. I'll be bummed if it's damaged. I'll try cleaning it later, Jack may have licked it the last time it was out.

She loved it. I thought she might have been a little scared at the fighting and chasing, but she was fine. She did her usual "*Look*! Animals!" and then commented throughout at just about every scene.

I suppose what is sadder is I've had all these Disney movies since before having kids, or before they have been old enough to watch. They are all kind of horrible really if you think about it, themes of abandonment or death, etc. I wasn't sure what I was going to say if she said anything about Mustafah dying, but she just said he was sleeping, phew. I do love a good singalong cartoon though. I might put The Jungle Book on for the next rainy day :)

Grey's Anatomy

Ok, I finally watched the season 4 opener.

WTH is wrong with Meredith??!! Is she nuts? I know the whole "will they, won't they" thing is what continues the drama, but she needs a slap.

I thought the episode was so-so, I know they needed to introduce some new characters and ease back into things with the old ones. Looking forward to catching up to date.

We also watched the finale of House season 3, can't wait to see what happens there (as fast as my download speed will go).

30 Days of Night

I think the creepiest vampires I've ever seen in a movie.

Tony & I went to see this movie tonight. I really wanted to see Saw 4, but we haven't seen 3 yet - that was a bit of a mouthful!

I couldn't imagine living in a place that was permanently dark for a month.

Anyway, gruesome movie!! I kinda like horror and gore though so it was fine. The film was good and it was nice to get out for a few hours :)

Delirious!

I think I'm losing my mind. I'm so tired for some reason I literally cannot think straight -

• I tried to put the milk in the cupboard.
• Tony was talking away tonight and I was nodding away, then he said "oh, you think I'm a wimp?" (lighthearted), me - "hm?", him - "I just said I was a wimp and you nodded", me - "sorry, I was totally not listening".
• We didn't get to eat until nearly 9 so just ate in front of the TV and Tony has this little fold away table thing from the kitchen to put the bread, margarine etc on...well, I brought in the ironing board!

I don't know what the heck is wrong with me, I just ended up laughing hysterically. Oh man, it's been a long week. I think I need a Smirnoff Ice tonight!

Medication update

Jack is doing better, thank goodness!

I managed to email his ped on Monday so I didn't forget to mention anything and she's referred us back to talk to the consultants and sent an additional prescription for Domperidone.

He is still not 100%, but MUCH better.

I also think he tried to tell me he was hungry tonight! He came home from school and things were a bit hectic and I was dashing between things so hadn't done his feed straight away. Tony came home (he demands instant cuddles from Tony) and started to get upset and kept lifting his t-shirt and rubbing his tube. Ok, he may have just been itchy, but I asked "Are you hungry, Jack? Should we get your tube? Do you want this?" and he signed yes - though he does say yes to pretty much anything you ask ;-), however, when I started his feed, he was then fairly happy!

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!

Tooth number 2

My boy is growing up.
Feeding is getting scary!

Tony & I got to go to town without any children today. I feel awful saying it, but it was marvellous to have a little adult time. To be able to eat without holding a bottle in one hand, or Katie taking a big bite out of your dinner. We did lots of shopping and got many household bargains and a couple of christmas presents.

Feeling recharged :)

Unlike Ben...