21st February 2011 - Cake a Difference Tea Party

21st February 2011 - Cake a Difference Tea Party, originally uploaded by sparklingbizzy.

Today was our cake a difference tea party.

Oh and boy did we cake a difference. I have never ever seen so much cake in my house. I have so many talented friends who bake such amazing cake and my neighbours boy can then cook too! I've moved to a great street!

Eleanor loved it sampled a lot of cake and Lucy couldn't believe her eyes to see all these people passing through our house and enjoying cake. She did eventually get some with her tea.

We have so far raised £326.50 between online just giving donations and money I collected today. Not bad for a bit of baking for one of our favourite charities. Bliss.

www.bliss.org.uk

Thank you so much everyone to help Bliss to continue supporting families like us. It means a hell of a lot to us.

www.cakeadifference.org

www.justgiving.com/eleanorscakeday

Things to do in half term

I'm dreading next week what am I going to do with 2 small children all day every day for a whole week.
Monday we're caking the difference but then there's tuesday, wednesdsay, thursday and friday to fill.
our usual groups don't run in half term.

Next week could be the end of me.
Ideas on a postcard please I don't want to do anything that encourages more drawing on the walls btw!

16th February 2011 All about Eleanor Hearing Update

16th February 2011 All about Eleanor, originally uploaded by sparklingbizzy.

We've had the results of the genetic testing no surprises there are no genetic reasons for her deafness. The cause remains as we suspected prematurity and some of the antibiotics she was given whilst in hospital. Gentamicin has a lot to answer for. We don't regret her having the drug because if she hadn't she wouldn't be here but still we're left with a less than ideal situation.

Still waiting for our referal letter.

It's also still cake a difference week for Bliss (www.cakeadifference.org) so there'll be more Eleanor and cake to come over the next few days.

Go ahead Bake my day

Cake the Difference Week 14th to 20th February 2011, originally uploaded by sparklingbizzy.

The text in the photo says it all here it is again

Cake the Difference Week 14th to 20th February 2011

Imagine if you were unable to touch or kiss your newborn baby. This is an ordeal thousands of families, whose child arrives too soon, too small or too sick, are forced to go through each year. But you can help. By baking and selling cupcakes, you’ll be raising funds to help support families during what can be a very lonely and frightening time, and to provide a brighter future for their babies.

Eleanor pictured behind the cake was 12 weeks premature. She weighed 1lb 4oz at birth and had an exceptionally rocky 5 month road to home. Bliss provided us as a family invaluable support. They still do today over 3 years later. With the very premature, sick babies the consequences live with you day in day out. Eleanor is deaf the cause of her deafness is her prematurity. She's small another characteristic of her prematurity, she has a weak chest and is very vulnerable to chest infections, viruses etc and frequently requires hospital stays. All of this because she was premature. We have come a long way in the last 3 years and I can honestly say without the support of Bliss I might not have got the care I needed to be able to carry Lucy to term. They got me into a fantastic network of people. I'm pleased that I can repay the favour by supporting this cause and providing parent views on neonatal issues.


Some facts and figures:

• There is a shortage of 1,150 nurses to care for the 70,000 babies in need of specialist hospital care in England. Less than a third of units have enough nurses to meet minimum standards.
• Neonatal units are working way above recommended occupancy levels meaning there is no safety net for peaks in the number of babies being admitted to units.
• Families of babies admitted to specialist hospital care face a crippling financial strain on top of the normal costs of having a new baby.
• Over half of parents face the prospect of not being able to stay near their baby in hospital due to a shortage of overnight rooms for families.

Cake A Difference is the annual fundraising initiative from Bliss, the special care baby charity. Bliss offers guidance and information at a critical time in families' lives, funds ground-breaking research and campaigns for babies to receive the best possible level of care regardless of when and where they are born. Cake A Difference 2011 takes place from 14-20 February 2011. For more ideas on how you can support Bliss contact katiaw@bliss.org.uk

we're baking a difference on Monday 21st February 2011 so if you're local to me please come and join us the details are on the cake a difference map!

finally if you want to help make a difference my just giving page is

www.justgiving.com/eleanorscakeday

Go ahead, bake my day!

Cake a Difference for Bliss Week 14 - 20th February 2011

A charity very very close to my heart.  Without Bliss I think I would have cracked up approximately 6 weeks after Eleanor was born.  Bliss's helpline introduced me to Sarah who had a similar tale to tell she was great.  She didn't tell me everything was going to be alright and not to worry she listened and that's what I needed someone to listen.

Eleanor's arrival on 14th November 2007 was traumatic.  On the 7th November I was admitted to York District Hospital as I didn't feel well and had high blood pressure and protein in my urine.  Indicators for what I later discovered was a condition called pre - eclampsia.  I was monitored in hospital for days then they did a scan and found that the baby was small and not coping well this happened on Tuesday 13th November.  I was Blue Light transferred to the Jessop Wing at the Royal Hallamshire in Sheffield miles from home.

Further monitoring and scanning on the morning of the 14th led to arranging a C Section that afternoon at 2pm.  I had to call my husband of course to make sure 2pm was going to be okay - like it wouldn't be!  Anyway Eleanor Ruth Thompson was born at 14.44 on the 14th November 2007 weighing 1lb 4oz.  I'm quite obsessed with 14 as a result of this.

Eleanor was immediately taken away by the neonatal team to be ventilated and transferred to neonatal intensive care.  A scary scary time.  The prognosis wasn't good and her consultant clearly told us the first 24 hours were critical we could then look at the next 24 after that.  Amazingly she survived the first 24 hours without any major drama.

The next 5 months are a blur.  I kept a diary I'm glad I did there are some real heart breaking entries in there.  I don't remember some of it but it hurts too much to read lots of it.  I hope Eleanor finds it useful when she's older.

4 weeks later we were moved to St James University Hospital in Leeds and Eleanor just didn't seem to improve at all we were really taking one step forwards 3 steps back until finally we consented to steroids to help get her off the ventilator and breathing for herself.  Her prognosis still wasn't great at times and she was resucitated more than once. Then once she was stable on low flow oxygen she finally made it back to York District Hospital on her due date 8th February 2008.

Being a York was such a milestone to us.  The care was different the attitude was different and it was clear Eleanor was there to feed and grow and was really on the journey home.  Her time at York whilst lengthy was a more pleasant less fraught experience.

Then at the end of March just before we were discharged home we had the newborn hearing screening and then we found out that Eleanor was Deaf.

We then trundled off into a new adventure which mainly this blog follows.

3 years later Eleanor is a gorgeous 3 year old still defying the odds.  SHe's just warded off her first respiratory virus without the need for a hospital stay.  A massive leap forwards.


Bliss have been good to us as a family.  In return I've helped them out on many occassions with the Neonatal Task Force and I'm involved in some work in Yorkshire and the Humber on their behalf.  So this week please if you can cake a difference. Help more premature babies and their families have a better start in life.


We're having our cake day next monday due to yesterdays' in the street antics!  If you'd like to donate to bliss here's our just giving page.


www.justgiving.com/eleanorscakeday

thanks very much

Photos will follow later the cake is still cooling down!

I miss my job

New Road part 1, originally uploaded by sparklingbizzy.

today because they've black topped the street I've realised that I miss my job.

I loved the construction side of things I'm also quite partial to the smell and feel of a spot of black top. I'm a true Highway Engineer.

One day the country will start building roads again and I can go back to work and get back to the smell of black top.

For now I'll just look on wishing I was part of the action rather than an onlooker.

Entering into the unknown

Eleanor is poorly.

She has a cold it's day 4.

She's not needing oxygen.
She's not flopped in a blue heap on the floor, she's climbing the trofast toy unit.
This is great but so in uncharted territory.  I just hope touching lots of wood she continues to fight it like this.
May be the light is round the corner and she really is toughening up.

In other news I've been chasing the cochlear implant referral as someone else in audiology gave me some alarming information. Basically told me she wouldn't get the referal as she hasn't been consistently at the right level for cochlear implants.  Well I held it together for 12 hours then felt I had to say something so I emailed the chief audiologist who is chasing up what is going on.  It's in the hands of the ENT consultant so she's going to jolly him along as time is against us.  If it is a no I'll be gutted.  However I've made it clear that I do want a second opinion and I'd like it at the cochlear implant centre so we will get to the right place via the right or back door channels and I will make sure of it believe me!

Oh and I'm semi set up as a Maths Tutor.  The CRB check which parents seem to want as reassurance seems to be prooving tricky to obtain as a self employed individual.  Any ideas gratefully received.  I've spoken to CRB direct and the words chocolate teapot spring to mind.

I think I've found the lurve

Streetlife Challenge, originally uploaded by sparklingbizzy.

of the lensbaby that is.

I took several streetlife shots in Selby today. There's a challenge in my Flickr group to do this. So I bravely strode into town and snapped away trying to be discrete but not easy with 2 kids and a buggy in tow. A lensbaby also seems to attract some attention too.

I've learnt that corridors seem to make good lensbaby photos so a road is a good place to start a man made corridor.

I need to learn more about the aperture and exposure time but I'm getting there I'm more content with my lot. I may have found a bit of lurve.

However I'm not having the lurve about being the parent of a prem today. She's coughing. There's been an evil cough at nursery since she started so to get to week 5 before picking it up is pretty good going. However I don't know which way this one is going. I don't know if i should be worried about her nose diving off a cliff and ending up on the ward in litres of oxygen or if I should be relieved that 48 hours in she seems to be showing signs of coping with it. She's in bed asleep sats monitor on and doing fine. I suspect she'll be at nursery tomorrow and really be showing me how much stronger she is these days.

Doesn't stop me worrying though does it.

And then there's the little one who's been exposed to Chicken Pox. So I'm on spot watch with her. The big one has had the vaccine so should be okay.

There's always something....

February 3rd 2011 - Not feeling the love

February 3rd 2011 - Not feeling the lensbaby love, originally uploaded by sparklingbizzy.

lensbaby or otherwise.

I think I'm having February blues.

ELeanor is driving me to distraction I had to leave a toddler group today because of her behaviour as she didn't get her own way well putting black paint into all the other paint colours to make them all sludge isn't really fair on others and totally unmanageable when you have a Lucy to deal with too. Saying NO to painting just didn't work and sparked the most humiliating show ever. In the end I just had to remove her.

I know she was tired as she put herself to bed at about 3.30. However that isn't an excuse to then go on a sudocream rampage when she got home.

I don't know what I'm going to do her behaviour is difficult to deal with some of it is because she's 3 some of it is because she's deaf however where is the line between the 2?

I want to go to Church tomorrow afternoon I just hope she behaves then.

I'm really feeling the need for this assessment today.

2nd February so how's nursery going?

So this blog was supposed to be our route to Cochlear Implants but I got side tracked with other stuff along the way.

The current Cochlear Implant situation is we're waiting for the appointment at Bradford.  We've had the letter from York but need one from Bradford now with a nice shiny appointment date in it.  As soon as we have one I'll let you know.

Eleanor is now into week 4 at nursery and she's only missed a week which isn't bad going really.  She's loving it.  I think she's getting lots oout of it.  Her support is excellent and has been doing lots of work with signs and getting her to stick to task.  A very much needed thing to do.  The parents are starting to realise that Eleanor has a special need.  One has even noticed her hearing aids (well the zebras do stand out a bit) and basically gave me her condolences that I had a deaf child.  I think she was quite shocked when I said there's nothing to be sad or sorry about it's just how Eleanor is.

I had another incident in the playground as well one morning a fellow Mum said to me they're all as deaf as posts at this age aren't they.  Her son was deliberatly ignoring her at that moment.  I think I'd had a bit of an Eleanor get here now moment which had been ignored too.  Anyway I digress my response was yes I know but mine really is as deaf as a post so she has an excuse.  This mum again was horrified she thought she'd said something to offend me I assured her she hadn't and to be honest I'd have been more shocked if Eleanor had actually followed every instruction I'd just given her! 

It's interesting that the parents know Eleanor is deaf they sort of look at me in a poor you kind of a way that I thought had gone away since I wasn't carting a baby on oxygen about.  The children though haven't realised.  There are so many adults in class anyway that they probably don't realise that Eleanor is having extra special attention.  They probably know it's odd that Eleanor doesn't speak but at the same time kids get round it in their own way don't they!  Eleanor is making friends or is starting to play along side the other children.  She smiles at one girl in particular.

I think I need to work on preparing myself more for explaining Eleanor is deaf and I'm not sad about it without having to give her total life history.

Most of all I worry about how having a deaf big sister will affect Lucy when she gets to school however that's a long way away she's not even one yet.

So if you meet me in real life please don't be sorry about Eleanor being deaf and on the verge of profound and needing cochlear implant assessment.  Please enjoy the fact she's here and a total little character that we cherish and adore.  She really is a total total sweetie pie.

1st February 2011 - lensbaby day 1

1st February 2011 - lensbaby day 1, originally uploaded by sparklingbizzy.

So a bit of a change whilst we get that Cochlear Implant Assessment Referral.

It's day 1 of learn to use the lensbaby!

So this is my effort. I'm undecided if this is a good photo or an epic fail.

Comments welcome tell me what you think.

There are 27 more days of this ahead of me!