Cochlear Implants have been ruling our lives here.
Eleanor had her implantation surgery on 18th October so 5 weeks ago.
We've been busy head protecting and learning to live with no sound since.
Today is our 1st monumental step forwards - Switch on 1.
I'm not sure to expect it could be the most amazing moment ever it could also be the biggest anti climax I've ever witnessed.
However we keep solidering on but no longer fighting the system now we are in to rehab and lets see what happens!
Wednesday, 23 November 2011
Monday, 23 May 2011
Monday 23rd May - Can you guess who it is yet?
Stripyzebra tagged me on a meme that is going around just now. It’s not a frivolous meme, it’s an important one for Save The Children’s No Child Born To Die campaign. The charity want people to sign their petition to put pressure on world leaders attending the World Economic Forum in June to fund vaccinations for all children. To protect, save 4 million children from diseases like measles that are preventable.
Three bloggers are visiting Mozambique and following a box of vaccines from arriving in the country to reaching their destined children. And lots of other bloggers are raising awareness by asking their children to draw a picture of what they’d like to be when they grow up.
Eleanor's picture is of Upsy Daisy. As she's deaf it was hard to explain to her that I wanted her to draw a picture of herself. I showed her a picture of herself but she just went and got an ITNG comic and started to copy Upsy Daisy. Now I don't know if that's how she sees herself now or in the future you can draw you're own conclusions but her art has come on so much recently that this is only the second time she's drawn something which shares a bit of resemblence for the object she's copying. This is a massive developmental step forwards for us.
Linda aka stripyzebra tagged me in this meme and I’m now asking some mummy blogger friends to Pass It On and raise awareness of this petition.
The rules are:
1) Get your child to either draw or craft a self portrait of themselves now or in the future, perhaps imagining what they will look like or what they might do. Check out Red Ted Art (who is now running a blog hop) post on self portrait to get started!
2) Sign the Save the Children petition and share news of it with your friends.
3) Write a blog post about it as soon as possible, featuring your children’s pictures and perhaps how you made them together, and including info about Save the Children and the petition. We want as many people linked up AND signed up the petition by Sunday 29th May 2011
4) Tag 8 blogging friends to do the same – #passiton! If you want to join in and I’ve not tagged you, please do!
5) Come back and link up your posts, either at Sleep is for the Weak or over at Red Ted Art, so we can all see each other’s posts and if you have time, go and leave some comment love on each others posts! It’s a blog-hop link-up so you can even publish the list of entries on your blog (like I have below).
My eight lovely bloggers:
1. It's all about the photos
2. Booby and the beads
3. Muddling along mummy
4. Clare's Diary
5.
6.
7.
8.
okay 4 are to follow but I'm working on finding more bloggers!
Three bloggers are visiting Mozambique and following a box of vaccines from arriving in the country to reaching their destined children. And lots of other bloggers are raising awareness by asking their children to draw a picture of what they’d like to be when they grow up.
Eleanor's picture is of Upsy Daisy. As she's deaf it was hard to explain to her that I wanted her to draw a picture of herself. I showed her a picture of herself but she just went and got an ITNG comic and started to copy Upsy Daisy. Now I don't know if that's how she sees herself now or in the future you can draw you're own conclusions but her art has come on so much recently that this is only the second time she's drawn something which shares a bit of resemblence for the object she's copying. This is a massive developmental step forwards for us.
Linda aka stripyzebra tagged me in this meme and I’m now asking some mummy blogger friends to Pass It On and raise awareness of this petition.
The rules are:
1) Get your child to either draw or craft a self portrait of themselves now or in the future, perhaps imagining what they will look like or what they might do. Check out Red Ted Art (who is now running a blog hop) post on self portrait to get started!
2) Sign the Save the Children petition and share news of it with your friends.
3) Write a blog post about it as soon as possible, featuring your children’s pictures and perhaps how you made them together, and including info about Save the Children and the petition. We want as many people linked up AND signed up the petition by Sunday 29th May 2011
4) Tag 8 blogging friends to do the same – #passiton! If you want to join in and I’ve not tagged you, please do!
5) Come back and link up your posts, either at Sleep is for the Weak or over at Red Ted Art, so we can all see each other’s posts and if you have time, go and leave some comment love on each others posts! It’s a blog-hop link-up so you can even publish the list of entries on your blog (like I have below).
My eight lovely bloggers:
1. It's all about the photos
2. Booby and the beads
3. Muddling along mummy
4. Clare's Diary
5.
6.
7.
8.
okay 4 are to follow but I'm working on finding more bloggers!
Wednesday, 11 May 2011
11th May 2011 - The Cochlear Implant Centre
I haven't blogged for a while as time has gotten the better of me again.
Since I last wrote we've been to the Yorkshire Cochlear Implant Centre 3 times. We've now had 2 hearing tests and a consultation with the consultant.
we are no nearer to a decision as Eleanor isn't interested in doing more hearing tests but the clock yes the NHS timeline clock is ticking and hopefully soon she will allow them to have all the data that they need and then we'll move on to decision time.
We're awaiting a date for a CT or MRI scan depending on which they decide to go with and we're going for another hearing test in June.
So we continue on our mission and will get to a decision at some point soon I hope.
In the meantime we continue to practice how to do a hearing test and hope that she gets the hang of it soon.
Next week is all change for me as I'm going back to work on Monday!
Since I last wrote we've been to the Yorkshire Cochlear Implant Centre 3 times. We've now had 2 hearing tests and a consultation with the consultant.
we are no nearer to a decision as Eleanor isn't interested in doing more hearing tests but the clock yes the NHS timeline clock is ticking and hopefully soon she will allow them to have all the data that they need and then we'll move on to decision time.
We're awaiting a date for a CT or MRI scan depending on which they decide to go with and we're going for another hearing test in June.
So we continue on our mission and will get to a decision at some point soon I hope.
In the meantime we continue to practice how to do a hearing test and hope that she gets the hang of it soon.
Next week is all change for me as I'm going back to work on Monday!
Tuesday, 19 April 2011
21st March 2011 Get me and my headline!
Eleanor was on the front page of the York Press, Selby Post and in the Yorkshire Post, Evening News and Selby times after her award winning moment.
Here she is with her headline that made me stop the car and dash in to buy one so we were late for nursery oooooppppsss
LInks to the best articles for you
york press http://www.yorkpress.co.uk/news/8921623.Two_courageous_young_girls_show_they_are_little_fighters/
Yorkshire Post http://www.yorkshirepost.co.uk/lifestyle/health-and-family/health_little_fighter_eleanor_s_tough_start_1_3210994
Here she is with her headline that made me stop the car and dash in to buy one so we were late for nursery oooooppppsss
LInks to the best articles for you
york press http://www.yorkpress.co.uk/news/8921623.Two_courageous_young_girls_show_they_are_little_fighters/
Yorkshire Post http://www.yorkshirepost.co.uk/lifestyle/health-and-family/health_little_fighter_eleanor_s_tough_start_1_3210994
18th March 2011 - Tommy's Lets Get Baby Friendly Awards
Eleanor won a childrens Champion Award from Tommy's the baby charity. She was nominated by a friend of ours because of everything she has over come since she was born. She received her award from Lee Mead and we're immensly proud of her and everything she's achieved todate.
She was a bit of a local press sensation too more will follow on that.
read more about it here
http://www.tommys.org/Page.aspx?pid=803
19th April 2011 It's been a while here's an update
Between my last post and now we've finally had progress.
I'm going to do a few catch up posts to get you all up to date.
I'm going to do a few catch up posts to get you all up to date.
Monday, 21 February 2011
21st February 2011 - Cake a Difference Tea Party
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
Friday, 18 February 2011
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!
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!
Wednesday, 16 February 2011
16th February 2011 All about Eleanor Hearing Update
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.
Tuesday, 15 February 2011
Go ahead Bake my day
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!
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!
Monday, 14 February 2011
I miss my job
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.
Wednesday, 9 February 2011
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.
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.
Monday, 7 February 2011
I think I've found the lurve
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....
Thursday, 3 February 2011
February 3rd 2011 - Not feeling the love
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.
Wednesday, 2 February 2011
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.
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.
Tuesday, 1 February 2011
1st February 2011 - lensbaby day 1
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!
Monday, 31 January 2011
January 2011 Finished
Yes that's right January complete.
31 days and a lot has happened in that time. Today's picture is my mosaic of my 31 photos for January.
A great representation of what has happened I think. Nice little reminders and I'm delighted that I've completed the whole 31.
I'm really pleased with the quality of the photos too.
February from a photo point of view is going to be experimental I'm going to be using the lensbaby every day to take a photo in the hope I might get to grips with it!
Also February should see us hearing from the Yorkshire Cochlear Implant Centre.
I also am going to complete another full month. Blogging it helps it gives me the motivation to not have to explain the gaps.
Thursday, 27 January 2011
27th January 2011 The reality of having a premature baby
It's times like this when the reality of having a prem baby really hits you. They're not just cute and small and put you through 5 months of hell when they first arrived. Their prematurity in some cases sticks with you for longer than that. It's the Bliss awareness week in February "cake a difference" so over the next few weeks I will be writing some things about the reality of a prem baby. Starting with this week.
Eleanor has been ill since the early hours of sunday morning. Turned out she'd caught a bug probably at nursery. We didn't know it was a bug until Sunday night when Lucy, her auntie and uncle, Mummy and finally daddy were all struck down with it too. Anyway Monday i took her to the GPs as I was concerned she couldn't keep water down and was asleep most of the day and night not her normal self. Way out of my Eleanor is poorly comfort zone as I'm used to dealing with lack of oxygen etc. Anyway GP said she'd be fine in 24 hours and not to worry about her and give her milk that'd settle her stomach. Anyway Milk had the opposite effect so bad that by tuesday lunchtime I was sufficiently worried to seek advice from the hospital. She was still being sick, still couldn't keep water down and had terrible dark circles under her eyes. The ward wanted to see her so despite feeling rough myself off we went with our over night bag and hoped we'd feel better within a few hours of arrival. A course of electrolates was prescribed we got as much into her as we could and we were sent home (phew!) with more to get down her over the next few days. The difference this simple little over the counter med made was incredible and she has finally today bounced back. I felt our GP could have helped us out better than they did. I phoned them on the tuesday before we trundled off to the hospital but they didn't really have any advice other than to take her to the hospital.
So a vomitting bug which for most kids would have them on the floor for 24 - 48 hours will have had eleanor off nursery for a week. She won't be going anywhere this weekend as she's still not on form and is very susceptible to other bugs and things. A shame as she has a birthday party to go to on Sunday at soft play but we know that she's too susceptible to go because of the bugs that will be there. Then there's the question of nursery should she go on monday or not? There will be bugs there too I know there will but I can't keep her off for another week can I? SHe'll never be there if this is what I have to do for a tummy bug.
I've been challenged by friends before because we tend not to do soft play or similar in the winter months. It's too risky for us Eleanor might catch something. She might get a chest infection. She might end up in hospital. We know she needs to get these bugs at some point but at the same time it's a pain in the butt when she's in hospital at the moment. It's a logistical nightmare. I can't just dump Lucy and become Eleanor's Mummy only. People don't think about how it works. It's torture 7 - 10 days of existing and not doing what you need to do.
Lucy however has shrugged this off and if she was aged 3 and at nursery she'd have been back today no question of it.
Eleanor also has had confirmation that ENT have been asked to refer her to the Yorkshire Cochlar Implant Service for assessment. She's officially in the category severe/ profound for her hearing loss and her hearing aid on the graph make very little difference. She certainly isn't accessing what she should be doing.
Tomorrow is a more positive day a new bed a new car but I'll tell you all about those tomorrow!
Eleanor has been ill since the early hours of sunday morning. Turned out she'd caught a bug probably at nursery. We didn't know it was a bug until Sunday night when Lucy, her auntie and uncle, Mummy and finally daddy were all struck down with it too. Anyway Monday i took her to the GPs as I was concerned she couldn't keep water down and was asleep most of the day and night not her normal self. Way out of my Eleanor is poorly comfort zone as I'm used to dealing with lack of oxygen etc. Anyway GP said she'd be fine in 24 hours and not to worry about her and give her milk that'd settle her stomach. Anyway Milk had the opposite effect so bad that by tuesday lunchtime I was sufficiently worried to seek advice from the hospital. She was still being sick, still couldn't keep water down and had terrible dark circles under her eyes. The ward wanted to see her so despite feeling rough myself off we went with our over night bag and hoped we'd feel better within a few hours of arrival. A course of electrolates was prescribed we got as much into her as we could and we were sent home (phew!) with more to get down her over the next few days. The difference this simple little over the counter med made was incredible and she has finally today bounced back. I felt our GP could have helped us out better than they did. I phoned them on the tuesday before we trundled off to the hospital but they didn't really have any advice other than to take her to the hospital.
So a vomitting bug which for most kids would have them on the floor for 24 - 48 hours will have had eleanor off nursery for a week. She won't be going anywhere this weekend as she's still not on form and is very susceptible to other bugs and things. A shame as she has a birthday party to go to on Sunday at soft play but we know that she's too susceptible to go because of the bugs that will be there. Then there's the question of nursery should she go on monday or not? There will be bugs there too I know there will but I can't keep her off for another week can I? SHe'll never be there if this is what I have to do for a tummy bug.
I've been challenged by friends before because we tend not to do soft play or similar in the winter months. It's too risky for us Eleanor might catch something. She might get a chest infection. She might end up in hospital. We know she needs to get these bugs at some point but at the same time it's a pain in the butt when she's in hospital at the moment. It's a logistical nightmare. I can't just dump Lucy and become Eleanor's Mummy only. People don't think about how it works. It's torture 7 - 10 days of existing and not doing what you need to do.
Lucy however has shrugged this off and if she was aged 3 and at nursery she'd have been back today no question of it.
Eleanor also has had confirmation that ENT have been asked to refer her to the Yorkshire Cochlar Implant Service for assessment. She's officially in the category severe/ profound for her hearing loss and her hearing aid on the graph make very little difference. She certainly isn't accessing what she should be doing.
Tomorrow is a more positive day a new bed a new car but I'll tell you all about those tomorrow!
26th January 2011 Resolution 3 learn how to use the lensbaby
We've all been really poorly in the Sparkling household. We've had a D&V bug. Eleanor of course has been exceptionally poorly and ended with a brief assessment in hospital on tuesday afternoon as she was a bit dehydrated to say the least! Anyway from 4 down I think we're back to 4 back on track again now.
However I digress Resolution 3 is a photography one. I was bought a lensbaby (www.lensbaby.com) for my birthday last year and I'm still not at one with it. I'm trying to get into it as i've seen some fantastic results with them from others. I'll share some later.
Anyway I feel like I'm totally out of my depth with it. Manual mode is becoming more familiar but I'm not completely down with it yet.
So above is another feeble attempt can you tell it's been taken with a lensbaby? Does it have that tell tale plastic edge? have I got a good sweet spot and bent it appropriately? Do I need to go back to the drawing board?
My resolution for this year is to crack it and get a lensbaby photo into Flickr Explore. I have 11 months to complete this challenge!
There are many people on my Flickr group that are at one with their lensbaby and I particularly admire Spudballoo as she really has it gripped. there are some ace shots in her blog!
However I digress Resolution 3 is a photography one. I was bought a lensbaby (www.lensbaby.com) for my birthday last year and I'm still not at one with it. I'm trying to get into it as i've seen some fantastic results with them from others. I'll share some later.
Anyway I feel like I'm totally out of my depth with it. Manual mode is becoming more familiar but I'm not completely down with it yet.
So above is another feeble attempt can you tell it's been taken with a lensbaby? Does it have that tell tale plastic edge? have I got a good sweet spot and bent it appropriately? Do I need to go back to the drawing board?
My resolution for this year is to crack it and get a lensbaby photo into Flickr Explore. I have 11 months to complete this challenge!
There are many people on my Flickr group that are at one with their lensbaby and I particularly admire Spudballoo as she really has it gripped. there are some ace shots in her blog!
Saturday, 22 January 2011
22nd January 2011 Resolution 2 - to cook more
This year I'm going to cook more from scratch. Less chucking in a jar of sauce and more using proper ingredients. I ought to make sure I know what my kids are eating and keep the salt down.
However in with this I can safely say that I get to do more of my cooking passion. Baking cake.
The husband very kindly bought me the Hummingbird Bakery Cookbook for Christmas. Oh it's a good book you can taste the cake as you turn the pages. You're not sure where to start. I can confirm the vanilla cupcakes are divine, the red velveteens truly irresistable and the New York Cheesecake truly splendid.
Today I branched out this is a Black Bottomed cake. It's a dark chocolate muffin mix interlaced with a chocolate chip cheesecake mix topped with cream cheese frosting and a dusting of cocoa.
I swear I spent just as much time photographing this cake as I did making it in the first place. Anyway more about photography another day and you'll understand why I took so many photos of it to get the perfect one.
Looking forwards to tucking in tomorrow for lunch.
Yum
Thursday, 20 January 2011
20th January 2011 - 7 things you don't know about me
Inspired by Booby and the beads.
Here are my 7 things you didn't know about me.
1) I am a Viola Player. I have my grade 8 ABRSM examination. I used to play in the Northamptonshire County Youth Orchestra but decided there wasn't a career in music and they were too poncy about it at University so I haven't really played much in the past decade. Shame really it's a lovely instrument.
2) In 2004 I got an award for being the youngest Chartered Civil Engineer in Yorkshire. I got a lovely outing to MAGNA in Rotherham for a presentation as part of the president of the ICE's annual address that year. Colin was the youngest ever ICE president so was seeking out the youngest corporate members in each region. I was the lucky one. I got a book, a certificate and to do a load of hand shaking and smiling.
3) I am a fussy eater. Yes I am. I have food issues I can't eat cream as in single, double, ice, extra thick, jersey which is a real pain. Therefore I'm obsessed with reading food labels. I have to be really careful. Eating cream in soup really makes me quite sick. I can't drink full fat milk as it has the same effect. Having a desert out and about is usually impossible and I don't like fruit salad as it usually has pineapple in it and many many years of being offered this make me just feel queasy at the thought of it. Whilst we're on the subject of food I don't like chicken. I don't know why I'm working on that one as I feed the girls it, Mr S eats it whilst we're out as I never cook it for grown ups. I need to get over that one but I just don't like it it makes me gag when I try and eat it.
4) I passed my driving test first time. The problem was it took 5 goes to get to the test centre as it kept getting cancelled on me.
5) Despite being an engineer I knit a lot and sew a lot too. I made all but 2 of the sets of curtains in our house. As for knitting you probably knew that there's photos of my knitting everywhere.
6) i am scared of flying. I might have been to Malaysia, Vietnam, Cambodia, Thailand, Australia etc but the thought of getting on a plane scares me and as for take off I'm really not good at that. Landing is a relief. How I'm going to take 2 little people on a plane with me in the future I don't know. I hope Mr S can handle 2 on take off and landing.
7) I've registered as a Maths Tutor. I need to do something being a SAHM all the time is driving me a bit potty. I mean quite a lot potty. Eleanor's appointment schedule is a nightmare and Lucy is a very clingy baby I need to do something on my own for me sometimes this is something i hope will fit that category. I am waiting for the phone to ring though... I hope that works out otherwise I will be classifying January 2011 as an enterprising fail.
Monday, 17 January 2011
and another post for the 17th January 2011
I came joint 3rd with 2 of my photos in the HPAD 2010 awards this is one of the.
Apparently it's a really good photo. I took some persuading but there's something allegedly really cool about the reflections, the rule of 3rds and the atmosphere. It made Flickr's explore front page.
I'm really pleased with it and I just need to decide how big to print it to stick it on my wall somewhere in my home.
The other photo was this one. Taken on the Beach in St Andrews in September a few days before the one above
so I'm pleased they made the cut and may be I should be less paranoid about the photos I take and realise that if i do apply myself I can take a decent photo. Speaking of which I need to take one for today whilst the small folk sleep!
Apparently it's a really good photo. I took some persuading but there's something allegedly really cool about the reflections, the rule of 3rds and the atmosphere. It made Flickr's explore front page.
I'm really pleased with it and I just need to decide how big to print it to stick it on my wall somewhere in my home.
The other photo was this one. Taken on the Beach in St Andrews in September a few days before the one above
so I'm pleased they made the cut and may be I should be less paranoid about the photos I take and realise that if i do apply myself I can take a decent photo. Speaking of which I need to take one for today whilst the small folk sleep!
Monday 17th January 2011 - A new activity
Still imensly frustrated after the sign language at Selby debacle. I really don't think they totally understand how much of a pain in the arse them cancelling that course is to me. I guess it's the last time I try and do something on my doorstep and support my local college. What I really don't understand is why Selby college are cancelling courses when everywhere else is full and has a waiting list! Actually I do understand because of how they've treated me. Really if you're not going to run a course don't leave it until people turn up to get in touch. Tell me so I have time to find somewhere else to do it. I'm trying to write a complaint to the college without turning into a ranting loon but it's not easy believe me.
So as it was Week 2 of nursery for Eleanor I thought it was about time I did something with Lucy on her own. Lucy and I trundled off to do under 5s swimming at the Abbey Leisure Centre in Selby. It was great and free courtesy of the childrens centres. Lucy naturally loved it so I'll certainly be doing it again with her next week and for several more weeks.
I guess it's now back to trying to find a sign language course whilst the little ones sleep oh and finding an electrician. Why ohy why do they just not phone back? I have quite a bit of work for one but I've left messages for 3 now and none of them have called back.
My to do list continues to get longer so I'd better get back on it.
So as it was Week 2 of nursery for Eleanor I thought it was about time I did something with Lucy on her own. Lucy and I trundled off to do under 5s swimming at the Abbey Leisure Centre in Selby. It was great and free courtesy of the childrens centres. Lucy naturally loved it so I'll certainly be doing it again with her next week and for several more weeks.
I guess it's now back to trying to find a sign language course whilst the little ones sleep oh and finding an electrician. Why ohy why do they just not phone back? I have quite a bit of work for one but I've left messages for 3 now and none of them have called back.
My to do list continues to get longer so I'd better get back on it.
Saturday, 15 January 2011
15th January 2011 - I am absolutely certain you do it like this Mummy
15th January 2011 - I am absolutely certain you do it like this Mummy, originally uploaded by sparklingbizzy.
which nicely brings me to today.
Here also is Lucy. 8 and a half months old and considering being on the move. I'm not sure I'm ready for that but hey nevermind. She's not actually moved yet but she's definitely got the idea and it won't be long before I have 2 to chase.
I've also been shopping this morning and finally bought myself some new tops. Much needed and I can finally throw out some of the more suspect and child ruined elements of my wardrobe.
Eleanor is still well despite having had a week at nursery. No bugs caught yet but there is still time! She's also absolutely shattered and pretending not to sleep on the sofa as I write.
14th January 2011 I need a BSL course and fast.
and then it was the 14th. The text with the photo says it all but aaaarrrrgggghhhhhhh
my college course has been cancelled to do sign language.
I'm gutted no scrub that really quite upset. I didn't find out until I got to college last night and was informed on arrival. Mr S duly arrived home on time ready to deal with bath time only for me to arrive back 20 minutes after I'd gone to say it's been cancelled.
The worst bit is having been back to college they made the decision to cancel it before christmas. just didn't tell anyone until they turned up. If i had known before christmas I could have got on another course somewhere else.
I've spent my day with a cup of tea and a bar of chocolate for comfort phoning round all the local colleges looking for an alternative. I thank the people that have given me suggestions but I have tried everywhere and everywhere is full or started in September.
I have to say college administrators don't help. I'm not disorganised I've been let down badly. I'm desperately trying to make alternative arrangements not easy part way through a year I know. Also if you don't phone and ask you won't get anywhere. I apologise for wasting your time but you've really not helped the situation.
13th January 2011 - Colour and Order Tribute to Evelina
Then came the 13th and for my photo group with my internet wierdie friends I did this lovely tribute to Evelina. Someone I've known a long time and amazingly it made explore.
A really simple idea and a much needed boost to my photography to start the year.
lets get up to speed 1st to 12th January 2011
so it was a quiet first week then on the 10th January Eleanor started nursery complete with statement and 100% one to one support. I was told uniform wasn't compulsary but as every other kid in the class was wearing it I got her a sweatshirt the smallest one they did which was age 3 to 4 years. It was a bit big to say the least. here she is modelling it!
Then on the 11th we had a hearing test and here's what I wrote on Flickr that day to go with the photo
"A big day out. Some of you know I had a bit of what could be described as a "pushy parent" moment before Christmas over Eleanor's lack of language, speech, listening and someone listened! Today we went to audiology for more rigorous testing and result her hearing isn't as good as we thought it was. Sounds like bad news far from it. Eleanor is being recommended for assessment at the cochlear implant centre to see if she's suitable for bi lateral implants. Much relief all round that she performed well and I hope that the referer to the CI centre doens't hang around and gets on it. I have momemtum lets keep it going....
Pictured are a new pair of hearing aids. She lost one so we had an odd pair and they didn't have any giraffes so this time we have zebra print. They should be easier to spot when they fall out."
Then on the 11th we had a hearing test and here's what I wrote on Flickr that day to go with the photo
"A big day out. Some of you know I had a bit of what could be described as a "pushy parent" moment before Christmas over Eleanor's lack of language, speech, listening and someone listened! Today we went to audiology for more rigorous testing and result her hearing isn't as good as we thought it was. Sounds like bad news far from it. Eleanor is being recommended for assessment at the cochlear implant centre to see if she's suitable for bi lateral implants. Much relief all round that she performed well and I hope that the referer to the CI centre doens't hang around and gets on it. I have momemtum lets keep it going....
Pictured are a new pair of hearing aids. She lost one so we had an odd pair and they didn't have any giraffes so this time we have zebra print. They should be easier to spot when they fall out."
January 2011 - Somewhere to let it all out and welcome
I've contemplated a blog many many times. A few of my internet wierdie friends have persuaded me that may be I should have a blog to just let it out. Apparently it can be quite therapeutic and cathartic so here I'm giving it a go.
May be I should have started on the 1st January as it's been a busy old month already. The truth is I should have started a blog on the 14th November 2007 when my world was turned upside down by the premature arrival of my eldest daughter. Eleanor.
She will be a big feature here so lets start with a bit of background...
Eleanor was born at 28 weeks gestation by c - section as we were both quite poorly. Eleanor was very small and fighting to survive inutero it was time to deliver. She was a teeeny weeny 580g at birth that's 1lb4oz and on the limits of survival.
She was admitted immediately to the Neonatal Intensive Care unit and from there 5 months and 3 hospitals later with several touch and go bumpy moments she eventually came home on Oxygen. Eleanor came off the oxygen at the end of December 2009.
She has what would have been deemed in the olden days as a "weak chest" and bilaterally severe/ profoundly deaf as a result of her early arrival. My blog starts really as we embark on a new and exciting chapter of the route to cochlear implant assessment.
Fast forward to now she's a lively 3 year old who certainly puts us through our paces. Apart from the fact she doesn't speak you wouldn't know she was deaf. You wouldn't guess she's 3 either as she's still tiny.
Last year I went through the trauma of being pregnant again. I call it a trauma as I don't do pregnant very well at all! Lucy was born weighing 6lb 5oz at 39 weeks gestation and is the big little sister round here. She'll crop up too I'm sure.
Last year also saw me become a full time Mummy as I was made redundant from the world of Civil Engineering in the summer.
So this is us. Welcome along. It's going to be a bumpy ride hang on!
May be I should have started on the 1st January as it's been a busy old month already. The truth is I should have started a blog on the 14th November 2007 when my world was turned upside down by the premature arrival of my eldest daughter. Eleanor.
She will be a big feature here so lets start with a bit of background...
Eleanor was born at 28 weeks gestation by c - section as we were both quite poorly. Eleanor was very small and fighting to survive inutero it was time to deliver. She was a teeeny weeny 580g at birth that's 1lb4oz and on the limits of survival.
She was admitted immediately to the Neonatal Intensive Care unit and from there 5 months and 3 hospitals later with several touch and go bumpy moments she eventually came home on Oxygen. Eleanor came off the oxygen at the end of December 2009.
She has what would have been deemed in the olden days as a "weak chest" and bilaterally severe/ profoundly deaf as a result of her early arrival. My blog starts really as we embark on a new and exciting chapter of the route to cochlear implant assessment.
Fast forward to now she's a lively 3 year old who certainly puts us through our paces. Apart from the fact she doesn't speak you wouldn't know she was deaf. You wouldn't guess she's 3 either as she's still tiny.
Last year I went through the trauma of being pregnant again. I call it a trauma as I don't do pregnant very well at all! Lucy was born weighing 6lb 5oz at 39 weeks gestation and is the big little sister round here. She'll crop up too I'm sure.
Last year also saw me become a full time Mummy as I was made redundant from the world of Civil Engineering in the summer.
So this is us. Welcome along. It's going to be a bumpy ride hang on!
Subscribe to:
Posts (Atom)