Drama!!

So today Amber decided to free fall out of her cot! She has learnt to pull herself to stand  up. We hadn't had chance to do her cot, and then today she went for a sleep, I was in the bedroom sorting some washing out and stuff, and heard and almighty thud and she screamed, I thought she had just banged her head hard on the cot sides...so I ran into the room and almost tripped over her!! :/

Poor little Pud!! :'( Bad bad mummy!

Needless to say the cot has been lowered!

www.willswish.com Every Penny Helps!!!

WOW!

We're on our way to St Louis' Children's Hospital!! We decided that we wanted to go for the operation, and are now actively fundraising to get us there. The lovely Sarah from here has done the website for us and despite my constant emails and facebook messages, she hasn't got cross with me! Haha! we're so pleased with it. Its fab!

My whole life has been taken over by Will's wish. I have had more mails to answer in the last few weeks than I have had in the last few years! It will be worth all the stress though.

I haven't had time to update my blog for an age, I miss it!!

In other news...It was my birthday yesterday and I have had the most fabulous time!! I love my little family, Dave even had the weekend off!We went to the Trafford Centre and I was spoiled rotten, which was nice, as all my money goes on the kids! I have to say though, they didn't miss out either, as they both had build a bear dog/owl teddy each :) Will loves doing that.

Today we went out for Sunday lunch with my mother in law and then for a wander down the canal.

Busy week this week, Breastfeeding peer support training on Tuesday, last one in this block, so I can start going to Will's riding again, which will be lovely, I miss that, and feel rubbish when I cant be there :( Nothing like a mother's guilt hey? :'(

I think I ought to go to bed now. Dave's garage has bought a new Recovery Truck and so he is up at 4am to go pick it up. I am sure he told me where it was from, but I don't think I was listening :/ Oops! Will is off to his daddy's house tomorrow (we swapped for the weekend) and then its just me and Pud til Wednesday morning...If I'm lucky I might catch 10mins or so with Dave...Maybe.

Night all! :)

#SilentSunday

Silent Sunday

Lazy Lazy Lazy!

Wow, its been 2 weeks since my last blog entry! It doesn't seem that long ago...

Having said that, loads going on here...time flies when you're having fun I guess.

Since making the decision that Will is going to have the SDR operation, its been a bit stressful, trying to sort out bank account, a charity that will help us with a number (in case companies want to donate and avoid the tax). I do feel quite positive about it all though, and my friends have been amazing! really helpful with the fundraising ideas!

Tomorrow when I get a minute, I will blog about the fundraising situation and all the things we have planned..but for tonight, I just wanted to quickly update this :)

I guess I should go to bed since Amber has decided she no longer needs to sleep past about 4am. Nightmare.

The Gallery:A Happy Memory

The Gallery this week is a showcase of happy memories...

Well here is mine.

The 1st cuddle Will had with his tiny baby sister Amber. After a very stressful week where my little man was staying with his daddy, and Amber was very poorly in the NICU. My heart melted, for the first time, I had both of my babies in the same place at the same time! :D

your choice, my choice.

I am a breastfeeding mummy. A very pro breastfeeding mummy. But recently there have been a few occasions where I have been made to feel uncomfortable about it. Amber is 7 months now. and I plan to continue feeding her well beyond 12 months. That is MY CHOICE!!

A friend of mine recently put a comment on facebook about Aptimil's Toddler milk, and its lack of obvious reasons for existence. A reply popped up and basically it descended into a breastfeeding V formula feeding debate.

I often find that I am unable to be proud of the fact I successfully fed both of my children, as its misinterpreted as formula bashing.

I read so much about the breastfeeding mafia. But I come across the formula feeding defensive more often!! It really irritates me that its deemed acceptable to stick your oar in and tell someone that they shouldn't breastfeed, that the baby wont sleep through, that its 'gross' to do it in public. 'You wouldn't have a poo in public...' etc. Along with all the other stupid comments I have received in the last few years.

But, if I were to even *hint* that formula wasn't as good as breast milk, then I am judgemental and condescending?

I have given up feeling bad no. The fact is, breast milk is superior to formula. You cant get away from that. I am not naive enough to think that there is no call for formula at all, but I think it should be the norm to Breastfeed. and less frowned upon!

I am fed up of being made to feel bad for being bloody proud of myself, it is hard work to breastfeed, and there is no 'sharing the night feeds'. BUT once its all established, it is SO much easier.
Long may Amber continue to feed. Bring on the 'Are you still Breastfeeding...?' ;)

Christmas is coming...Bah Humbug.

Since Amber is growing a ridiculous rate, yesterday I nipped into Boots to buy yet MORE new babygrows, and came across this...

Seriously?? It's not even mid-way through September yet!!

I am so glad I now-longer work in retail, that was one of the things I hated, knowing that my Christmas would start months ahead of schedule. Now, I have to admit to having started my shopping, but that's purely to spread the cost out, especially now we have 2 children, and the SDR on the horizon.

But I couldn't help bur feel sad that when I saw this display, I will be fed up of Christmas by the time it even gets here!

Anyone else feel the same? :/

LEGO is the bane of my life!

Today we have had a PJ day (Will is in school alternate days this week and next). He loves Lego, but now that Amber is mobile, he's only allowed to play with it when she is in bed, and it has to go away before anything else comes out. Its been out just over an hour, in the lounge. and already I have found a piece in the kitchen. Or rather my foot found it as it embedded itself into the sole of my poor, poor foot! *cry*

Along with the Lego, there are a few toys that drive me barmy. The next being the Marble Run, you see this toy and I have a love/hate relationship. Once its finally built, its great, both Will and I love it. But its not something he can build by himself, so I have to do it, but the always wants to 'help' which generally leads to it falling over! So we start again...and on and on it goes.

I spend a fortune on toys which I later regret as they never seems to be things he can play with independently, and whilst I love playing with him, sometimes, I just have to get other jobs done! :(

The Gallery:Shoes

This week's Gallery topic is Shoes. Ok, so my picture isnt strictly Shoes. HOWEVER...It is shoe related, in our house anyways! Will wears Splints inside his shoes, and this is the process of making them. 1st of all, they make a plaster cast mould, to make sure they are the right size etc. and then they send them off to an orthopaedic hospital for the manufacturing process.

Listography...Things I Did This Summer

Kate has put up the new listography...Things I did this summer. I've racked my brains to think of the best things and was really struggling, until I looked through all the pictures I have taken! Maybe it wasn't such a rubbish Summer after all! :) After reading this, pop on over toe Kate's page and read some more (no doubt more interesting things!)

#1

We went to Eastbourne to stay with my brother in law, Jack and his boyfriend, Anthony.

We went to Drusilla's park, Will loved it! His favourite bit was the ride on Thomas :)

#2

We went to Legoland.

#3

We built dens at Chirk Castle

 #4

On Dave's birthday, we went to the Marco Pierre White Restaurant in Chester, and Will was so well behaved, I am so proud of him!

#5

We did the Flintshire Mummys Calender shoot, this is me getting my hair done. watch this space for the real pictures! :)

So, that's our Summer...Take yourself off to Kate's page and link yourself in so I can be nosy! ;)

My Poor, Neglected Blog!

Wow, its been AGEEEESSSS since I got a chance to write here. It's been a shitty week or so. But I think we're finally back on track.

Will had his X-rays yesterday for the SDR, £125 later...We had to go privately for them, which is annoying. But it is done now.

William also had his 1st day in reception yesterday. He loved it, but he was knackered when he finished (at 1.30pm) and wanted to go home for a sleep! He is off today and back in tomorrow, then next week alternate days until they got FT the following week. I think its great they do the settling in period, but it takes forever. Not that I'm complaining, its nice to have him home!

I suppose I best get used to him being gone tho, and find something to fill my time! Yesterday I took Amber to toddler group..and She was that child who everyone moves their kids away from!!! :/ She pulled a little boy's hair so hard he screamed the place down! Monster!

I need to nip that in the bud!

Its almost the day!

FLINTSHIRE MUMMYS CALENDER

W're nearly there. It's all planned, booked, meticulously arranged, we've had some brilliant donations of help, and all 12 months are sponsored now.

I am nervously excited about it, thought I know it will go well, since I have had already had my pictures taken.

All my best laid plans have gone belly up tho...I havent had my nails done, nor my eyebrows waxed, I have PMT-spotty skin and my hair desperately needs cutting!!

BUT I am hoping Holly is a pro with photoshop!! And if nothing else, my disorganisation and crap-ness will make veryone else look even more AMAZING!

Wish us all luck!!!

Back to reality!

Contrary to popular belief, there are other things going on here, other than the SDR stuff! It half only almost taken over my life. But I have started a Blog for Will to try and keep the two things separate.

So, aside of SDR...whats going on? Well, I have somehow, sort of managed to get on top of the housework. Just about. I found loads of stuff I'd forgotten I had! I love it when that happens, though it is irritating, as I always think, I'd forgotten about that, stuff it, it can go in the bin/charity bag/etc but I cant bear to part with whatever it is. I am a hoarder!

Also, Will starts back at school next week. He is going to be in the Reception class! and going full-time! I am gutted. Totally gutted.

I am definitely one of those mums who lives for the holidays. I cant wait for October half-term already!

Last week we went shopping for his shoes. What a faff it is trying to find shoes to go over splints! Nightmare. If you think Clarks is crap for choice....Try shopping with Will. Eventually we found some that he was happy with though. Better still, when we got to the till, they were half price. Bargain!

Here he is, showing them off...

We're done now, that's everything bought, I just have to put labels on everything, and then off I go, next Tuesday, to drop my little man off for his 1st full day. I suspect there will be lots of tears!

Just as I get into bed,....

Gahhh. This whole fundraising thing is driving me mad. I sit here staring at the laptop screen all evening, brain gone to mush, unable to make an plans or think up new ideas for Will's fundraising.

But then...BAM, I get into bed and 83261723601293801239 ideas whizz through my head!

I really ought to take a pen and paper to bed with me!!

So far on our list we have got

• Walk up Snowdon
• Leg-wax for the guys!
• Football match
• Raffle night at local pub
• Band night at local pub with a collection
• Family Fun Day at local leisure centre
• School non-uniform days
• My uncle is hoping to do a sponsored Run for it too!

 We're going to get in touch with the local paper, radio stations etc too. Also set up a Just Giving page.

Its a HUGE amount of planning and I am freaking out a bit, that we won't be able to do it :/

#SilentSunday

SDR. Again.

I have previously blogged about the possibility of Will having the SDR operation. I am finding the whole thing very emotional, this probably sounds really strange, but  I feel as though we've grieved for the fact that Will would never walk, and that was fine. But now there is a tiny glimmer of hope, and I am trying so so hard not to get too hung up on it, in case we're disappointed!

I don't want to promise will that he will walk one day, and it not happen. For him to be disappointed, or feel like he has let us down!

I'm struggling with it, just like when we got that 1st diagnosis. Its very nearly 3 years ago (1st October), and I can still remember every second of it. But at the same time, it blurs into insignificance. Will has achieved so much more than we ever thought possible.

He has proven them all wrong with so many things, and I am so proud of him. It just sort of feels like he hit a brick wall and hasn't done 'anything new' for a while. and its VERY unlikely that he will walk without an aid, if he doesn't have the operation.

I am pretty sure that we're going to go ahead with the procedure. If nothing else but to keep a hold of the mobility he has. Cerebral Palsy causes deformity. This means that any mobility he has now, as a child, will be ruined as an adult, especially with the growth spurts that come with puberty!

We have recorded the video application we need and his Physio said something yesterday when she was doing it. She told Will's dad and I that she sees will once a week at the moment as she feels his CP is responsive, and she feels like she is making a difference, where as in a year or two, it wont be like that, it wont respond so well, so she will only see him every 3 weeks instead.

This struck a cord with me. Surely if its responsive at the moment, then NOW is the time to have the operation?! Right?

I have been speaking to a lovely lady called Debbie. Her grandson Leo has had the SDR. I think its fair to say he hasn't had the easiest time, but my god has he come on! The progress he has made is amazing! I have seen the video application the made for the SDR and also videos of him walking UNAIDED afterwards and the difference is immense!

I cant express how nice it is, to finally speak to someone who has felt all the things I am feeling right now, to know that its normal and to have a rant to!

"I have sat where you are wondering if its possible to raise the money, If the operation will cause more issues than it will solve, that all the English medics cant be wrong, If you can deal with the stress of raising money or the guilt if you don't"

This puts all my rambling and muttering into one eloquent sentence. I do feel like that. But I also feel like it is worth it all.
 
Huge thanks to Debbie for answering some of my 93,889,638,989,347,189,303 questions, and just for making feel better!

Read more about Leo here. :) he is very cute!

Welcome to Holland..Life with a child like Will

I have read this poem so many times, and still it has the same effect. A soggy keyboard.

I wouldn't swap Will for the world. Sometimes though, its so very hard not to feel cheated, for him to not be able to do all the things he should be able to do!

I am so, so proud of everything he has achieved, and know he will grow up into a delightful man. But this is a bit of an explanation of how it feels, when your special little person has Cerebral Palsy.

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 

by Emily Perl Kingsley. All rights reserved

The Gallery:Animals

This week the Gallery topic is Animals. 

If I'm honest, I'm not a great animal lover. We have had hamsters, Guinea pigs, fish etc. but they all died, and no-one seemed bothered. They were not replaced.

Having worked on a farm throughout my teenage years, there are few animals that frighten me, apart from, that is, Spiders. and rats. Spiders in particular. I cant cope with any bigger than a 10pence piece. It stresses me out if there is one in the bedroom, I cant go to sleep with it there. Nor would I walk under one that's on the ceiling.

Dave isn't a fan either, so between us we squeal like school girls and argue over whose turn it is to remove the critter and put it outside. This is on Dave found when he was putting the wheelie bin out for rubbish collection. it had the longest legs I have ever seen and made me shiver at the thought of it coming in the house!

Bleuurghhh!

For more critter pics, follow the link to Sticky Fingers and add your own whilst you're there :D

What happens when you leave your 4 year old alone with a camera!

I can't for Will to grow up so I can embarrass him with all the pics I have taken of him...Including one of him wearing a bra! :) 

I was preoccupied on the phone, Will had the camera, and this was the result. They made me laugh a lot, he is so funny! :)

 

 

 

 

 

Funky Giraffe Bibs

The lovely people at Funky Giraffe Bibs sent Amber and I some to try out. Just something else for my poor postman to have to deliver...(I have a fluffy nappy addiction!) They arrived alongside some gorgeous smellies..more about those later...

We tried them on for size..Perfect!!















Amber felt the need to share a biscuit with one....

And her new trick, holding her own cup...we're yet to master the actual drinking part tho..more spilling at the moment! :/

But...When we took off the bib, her top was perfectly dry underneath! Brilliant!

Funky Giraffe Bibs are a fab shape, they secure at the back with nickel free fastenings, there are couple of poppers to allow for growth, which is always a bonus!

Lined with Fleece, they stop the dribble getting through to the clothes, and I also found they because of the cut of the fabric, they sit quite close to the chin, without being too tight, but it means that Amber isn't getting red and rash-y from her chin and neck being wet all the time!

When we took the bib off, it was very soggy on the outside, but her clothes were fine, totally dry!

I would 100% recommend Funky Giraffe bibs, we love them!


Also in the box was some Bubble & Balm Luxury Anti-Bacterial Hand wash, and some citrus soap.

I am wary of using anything fragrance on Amber, as she has very sensitive skin. normally we bather her in just water. But I thought I'd give the soap a try. It smells amazing and feels lovely to wash with, and best of all, no dry-ness or red-ness for Amber!

The anti-bac hand wash is now in the bathroom, it even worked a treat on Dave's 'post-work' greasy hands!

I love the smell, the fact its fair trade, and that it does what its meant to! lovely product! :)

Ahhh, 1 less appointment to fit in!

Today I had to take Amber to a Consultant appointment. She has been regularly since she was born as she was early, also, she had an enlarged kidney.

Well today she was weighed, and at 29weeks and 2 days, shes is a tiny 6.3kg, 13lb15 :)

She has finally grown into her kidney (lol) and there are no further concerns, so she has been discharged with a full bill of good health.

I am so pleased. I have no concerns, other than her Uber-Sensitive skin, but we have a referral to dermatology for that already. She is doing all the age-appropriate things, and more!

Just perfect!

Best of all, its one less set of appointments I have to cram into my busy schedule...Who says its easy being a stay at home mum?? :)

Selective Dorsal Rhizotomy

I posted yesterday about the SDR operation that we are contemplating for William.

Its such a huge choice, but...

Will's dad and I have sent the online application. We talked about it for ages, a few hours and then we decided that we could sit and wait and HOPE they change the rules about the American version of the SDR being done in this country on a wider scale, or we could get our arses in gear and get ourselves to the states.

So as long as Will is accepted, we're hoping to raise the money to go mid Feb/March. We have worked out finances, and we think we need to raise £45,000/50,000. We want to have money to come home with, to make sure we can have a private physio to hammer the intense physiotherapy for Will. We already know that the NHS is crap from that POV, there just isnt the funding to get enough physio! Also, no doubt we will need more equipment that the NHS wont/cant fund or will take years to do it. In addition, another family that we have been speaking to had an extra unplanned operation, which left them with more medical bills to find the money for after they came home. We need to be prepared for that financially.

This is quite possibly the biggest decision I have ever made. I am sat here like a lemon, I feel like I should be doing something, not sure what though! :/ Its playing on my mind loads now, I am really fidget-y.

After sending the application, we got an email that said to expect a reply within the next 48 hours, with a list of information they need, MRI scan results, X-Rays, medical notes, and the like.

Once thats all been sorted, we can start fundraising. It is going to be a long, hard slog to get every penny we need together.

Watch this space and wish us luck!

Listography...A week in pictures...

This week, Kate Takes 5's listography is a lazy one. Nothing at all to do with the fact that she was hungover for the majority of the weekend. At all. :D

Here is my week...

 

Will and Dave panning for 'gold'

 

Amber stealing Daddy's coffee ice-cream :)

 

We bought a new Didymos wrap, and have now mastered getting Amber on my back! Happy days.

 

Showing off my excellent parenting..giving my 6mo daughter a jammy dodger...

 

Both of my children are TV addicts! Look at them sat in front of Horrid Henry. For the millionth time!

Now you have looked at mine, go here and add yourself to the linky :)

How do you make a decision like this?

As I have mentioned millions of times, William has Cerebral Palsy. If you are reading this and don't know much about it, there is a tab ^^^ up there :)

Currently his treatment is basic, well for us anyways! He wears these splints he has a walking frame. Walking far isn't really an option, so he also has a chair which he push for him. He has been referred for an Active User chair, this is one where basically the wheels are further forward on the frame, and its easier for him to push himself independently. He gets tired quickly, tho I find its quicker if hes bored ;)

Alongside the splints and frame, Will also has a standing frame, which basically supports his legs and holds him in a standing position whilst his hands are free to play or do whatever. He uses this daily at school, but since its the holidays, we have it at home now.

Everyday we have to carryout 3 lots of stretching exercises, it takes about 20mins. Now that he is at school part-time, we find that we only get to do them twice a day. Hes not a great fan of doing them, but needs must! We find the more he does, the stiffer his legs get,and the stretches are meant to undo the stiffness.

Ages and ages ago, we found out about an operation called Selective Dorsal Rhizotomy (SDR). We mentioned it to Wills then Orthopaedic Consultant Mr Bass, he works out of Alder Hey, but he said it wasn't an option. Fast forward a few months and Will's Orthopaedic Consultant changed over to Dr Kiely, based at Gobowen, this was because he goes to a Welsh school, has a Welsh NHS physio etc, and it meant everyone was singing off the same page.

The last appointment we had was with a registrar in place of Dr Kiely and he mentioned something about the SDR, and Will being a suitable candidate, but the chances of getting it on the NHS are slim to none in the current economic situation.

Will's dad and I have been looking into self-funding it. It is done in the states, in St. Louis Children's Hospital.

I have borrowed the below from the Scope website:

What does the surgery involve?

Selective Dorsal Rhizotomy describes a surgical procedure carried out to the lower vertebrae usually between L2 – S2 (lumbar and sacral area). The vertebrae are opened to reveal the spinal cord which contain the neurones of the central nervous system. These neurones (bundles of nerve fibres) channel messages between the brain and different areas of the body.
Electrical stimulation is used to identify and sub-divide sensory and motor nerves. This process continues until the specific nerves and nerve roots affecting the spastic muscles and which may not be “transmitting” properly are identified and cut. Due to the size of the nerves and rootlets, this is a very precise procedure and therefore the surgery can last several hours and requires a general anaesthetic.

and more importantly the risks, according to British sites are as followed, again from Scope.

Risks and possible problems

It is important to remember that this procedure is irreversible and involves major surgery so we would strongly advise parents to consider very carefully whether or not this is suitable for their child and talk to the medical professionals involved in your child’s care. Not all patients with spastic cerebral palsy will benefit from SDR and some patients will see no benefit or even deterioration in their condition following surgery.
Side-effects can include:

• severe pain after surgery (58%)
• unpleasant feelings in the skin (40%)
• constipation (20%) and urine retention
• experiencing increased spasticity during times of stress months or years after surgery (40%)
• weakness in legs
• dislocation of joints.

% figures based on study of 250 children who underwent SDR (2)
Discouragement in the patient, due to the long follow-on process, has also been reported.
SDR can highlight weaknesses elsewhere, for example, where muscles working alongside the spastic muscles have adapted to compensate for the increase in muscle tone.

However, St. Louis Hospital basically says it is a 100% success rate with no complications.

Now, as a mummy, how do I make that choice? I cant help but be cynical and think that the American site (st. Louis) ultimately out to make money, so are going to play the positive card. We (Will's dad and I) have both joined a Facebook group where people who have either had the procedure, or had children have the procedure post. They are all singing the praises, one woman even said she didn't look at the risks!

It is so so hard to know what to do. As it stands Will is a happy, chatty little boy who is, albeit unconventionally, mobile. If things were to go well, it could improve his life, no end! If it were to go wrong, it could substantially decrease his quality of life!

I would appreciate comments on this, positive or negative. Just to get an other peoples views please :)

#Silent Sunday