Living with Cerebral Palsy 🍋🍋

Wednesday, 30 December 2009

Christmas

Elin had a good few days over Christmas, particularly Christmas Eve, Day and Boxing day!! She must have known ;-) As usual, people spoiled her rotten and not only did she have some wonderful clothes but we were really touched that people considered her needs when buying toys and she got some great ones which we have already managed to play with- a favourite at the moment is the glockenspiel, which never fails to make her smile. I put the beater in her hand and help her to play too, maybe one day she will left the beater and whack the keys herself- imagine that ;-) Sadly the last few days have not been so good, the day after boxing day she had a long fit early evening and so I had to administer the rescue medicine, Medazolam, myself for the first time. It was easy actually and she relaxed out of the fit strait away then slept for two hours. Paul was pragmatic as ever and I was as emotional as ever. He says we just have to get used to it but Im not sure I ever will. I called the hospital and we didn't have to take her in this time which was good- being on the ward over Christmas would have been too depressing for words so thank heavens for small mercys!
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Saturday, 12 December 2009

Here we go..

..Another fit today. Not as bad as last time. I waited 10 minutes as there were short breaks and luckily it subsided so I didn't have to administer the rescue med and take her to hosp. Paul was out but Caitlin was here and I didn't tell her what was happening, it would have upset her too much, but I was terrified. It's the responsibility of doing the right thing- I was just so scared I didn't know whether to give the medicine or not, thank god she stopped fitting so I didn't have to make the choice. God it's just so hard sometimes. We had just finished putting the tree up, it should have been a lovely day and instead I spent it scared and upset. I will never get over having to watch her have a seizure, it kills me. I can't get my head around what she has done to deserve this and I would swap places with her in a heartbeat if I could.
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Monday, 7 December 2009

Elin turns to find a rattle...

video
This is Elin listening to a rattle and turning to look towards where the sound is coming from. Such a tiny, tiny, thing. Newborns can do it. But Elin has only just been able to do it and I notice on the timer it takes her 42 seconds for her brain to process the sound and tell her neck and head muscles to move in that direction. What I love about this video is the fascination with the noise in Elin's face and they way her eyes are trying to follow the sound. Maybe if they keep trying, then one day they will be able to focus on the sound and we will be another step further ahead, but for the time being, this will do me ;-)
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Monday, 30 November 2009

Cherish...

Went to the CHERISH Christmas party yesterday (Cherish being the charity for the Wrexham Special Care Baby Unit of which I am on the committee)- Really great to see a room full of kids that were once on special care- all different ages - mad to think that all those lovely children in their party outfits were once in ICU at birth, with anxious mums and dads praying, wishing, crying and hoping their way through cot-side vigils. Every single one of those parents at the party knew exactly what it meant to be able to enjoy Christmas with their child and there was a real sense of celebration in the air from people who are grateful for every move their child makes. Some kids had spent the first 6 months of their lives on special care - I cannot imagine how hard that is- four weeks was long enough for us! Cherish is such an apt name for the charity because each child is genuinely cherished by parents who have looked over to the dark side, faced possibilities within hours of a child's birth that most mothers could not even comprehend. When you have stared the chance of your child's death in the face soon after giving birth and then battled through the doctors predictions, battled through the life support machines and the medication and the drips and the feeding lines and the SATS monitors, then find yourself months or years later at a Christmas party with your child, Cherish only really begins to explain how you feel about them ;-)
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Sunday, 22 November 2009

Tricky week...

It's been quite a tough week or two since Elin's hospital stay. She is actually doing well, the consultant put her Epilim up to 6.0mls twice a day from 4.5mls. It seems to have done the trick in keeping the seizures mainly at bay, though she is still a little too twitchy/jerky for my liking- having said that she has been less so in the past couple of days. She is also teething, has a monster razor tooth come through at the back of her gums which Im sure can affect the seizure situation. It's me that's not doing as well- I seem to have turned into an emotional wreck! It's very hard to put what happened out of my head and I can't get rid of the sick feeling in the pitt of my stomach every time Im not with her- wondering if she is ok, if something is brewing or not etc. I frequently burst into tears and I feel nervous and panicky all the time. I suppose that's what you call stress. I wish I could just stop worrying and being so teary. But then in stronger moments I think Im not going to give into this and this monstrous condition that affects Elin and all of us. I cant let it ruin the life we have with her, which we try to keep as normal as possible.I can't be by her side 24/7. But, it's easy to say that and very hard to actually carry it out.
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Wednesday, 18 November 2009

Interesting article.....

http://www.independent.co.uk/life-style/health-and-families/features/life-and-death-decisions-with-a-disabled-child-1817674.html
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Monday, 9 November 2009

A bad weekend...


..This is a hard post to write because I like my blog to try and focus on the positive and stay upbeat wherever possible. But it also has to be a real blog and update everyone on Elin's progress, which took a bit of a de-tour this weekend. After months of fairly good seizure control with her epilepsy med combination, Elin had what we had been dreading and hoping would never happen- a grand mal seizure. This is a big one, and much more typical of what you think of when you imagine an epileptic fit. We prayed they would be kept at bay, but out of nowhere on Saturday she started having a seizure that she didn't come out of. I took her to hospital where they gave her a dose of medazolam and put her in HDU. At first it didn't seem to be working and just as they got a canular into her hand for a stronger, introrvenus drug, she came out of it. After an hour of sleep she was right as rain and back to her old self. They could not find a trigger for it and don't know if it will ever happen again or not. We were devestated as she had been doing so well lately and her seizures had been fine. It felt like we were being punished for believing things were improving for her. We spent the night on the ward so they could watch her and were discharged yesterday with the promise of a phone call from Elin's consultant, who was off yesterday, to discuss upping her current meds. I will also need to keep the medazolam at home to administer myself if it happens again. They call it 'rescue' medicine. Today I feel like I need to be rescued too.
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Monday, 2 November 2009

Alder Hey....

Alder Hey have sorted in the space of 40 minutes something we have been waiting for for weeks- Elin's eczema. No wonder they were recently voted the top children's hospital in the country. I am in awe of the place. We had to keep her bandaged all weekend after a greasing up with moisturiser and now I have to apply the cream 4-6 times daily and she has to sleep in a special bandage-type suit for a bit. It's soooo much better and the Dermatologist says it's not related to her condition, it's just bad luck that she has the eczema too. Bad luck? Too bloody right- how much bad luck can one baby girl have??? P.S Included above photo of Elin on her holidays just cos it's cute :-)
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Wednesday, 28 October 2009

Blue Badge in all senses of the word....


We have been granted a Blue Badge for Elin. I am excited about this, as it will make our life that bit easier when out and about, especially as Elin hates travelling so much. I went to the council offices today to pick it up- in the middle of a sneaky bit of half term Christmas shopping lol- spoke to the lady who was great and had sorted it out for us (kids aren't supposed to have them until they are two) and had a nice chat with her. She said Elin was gorgeous. I told her I really appreciated her help and how much easier it would make things when we are out and about with Elin. I left to continue my shopping and had a little look at my lovely helpful badge. It was all shiny and new. Good, I was thinking, we really need this it will be a big help we were lucky to get it. I turned it over and there was Elin's photograph ( a close up of her beautiful face) staring out at me with the words 'Parking card for people with disabilities' and 'Wrexham County Council' next to it. I burst into tears and cried into my scarf all the way back to the shops. You never know when it's going to hit you, but when it does you have no chance. You just have to cry, dry your eyes ...and then go and spend some money (or maybe that's just me ;-) )
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Tuesday, 27 October 2009

A Jolly Holiday....

We have been away for a couple of days and Elin was SUCH a good girl! Going anywhere can be stressful with Elin as i have previously mentioned- but going away from home is even more stressful. Before we went i had a list as long as my arm- and a sick feeling all the way there that i had forgotten something- happily i hadn't and we had an amazing time in Llandudno seaside town. The best thing by far was that Elin sat in her pram for a good 80% of the time without screaming- this meant we could walk around the town, stroll up and down the pier and even take a tram ride to the top of the great orme mountain without having to get ourselves stressed or break our backs carrying her- huurah- could this be progress??!! We have also recently noticed that when out in bright light and wind up the mountain -even though it wasn't that sunny-she kept her eyes tight shut- her brain cannot signal to her pupils to dilate properly to accomodate the light so she literally cannot open then against the bright light. Whenever we went inside her little eyes would ping open as if to say 'ahhhh thats better'. Very cute bless her .She was also full of smiles and slept on cue in her pram when we went to the hotel restaraunt for dinner and breakfast! Good girl! I was so proud of her this holiday and what a treat to have such lovely family time together.
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Thursday, 22 October 2009

Babies babies everywhere...

Recently there are babies everywhere, pregnancies amongst friends , newborns smiling out at me from Facebook. It makes me feel weird. I love baby news, I know how precious a healthy happy baby is and Im genuinely happy for everyone. But if I really look inside and am honest, every single piece of news like this is tinged for me ever so slightly. Because I will never, ever be able to get my head around how EVERYBODY but me can fall pregnant (without 4 years of trying and horrendous, expensive IVF that is) and 9 months later go home with their baby safe and well. There is a column in the local paper written by a new dad on the joys of fatherhood. I can't even read it- once I read it and he was talking about how he watched his baby pull himself up to standing for the first time in his cot and then smile with joy at his own little achievement. It made me feel sick with jealousy. And believe me, I hate myself for that, it's not something I like about myself or I like feeling AT ALL . But it's there. I can't deny to myself it's there. It's there in photo's of other people's babies. It's there when there are babies on the telly younger than Elin doing things I can only dream of for her. It's there when I watch my friends babies develop and change at lightning speed. It's there when the other babies say 'Mum' (or say anything at all). It's there alright and it's bloody hard work to make yourself immune to it, when your heart is still broken and you're wonderig if it will ever feel fixed again.
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Saturday, 17 October 2009

More positive.......


Just read my last post, it seems so negative- but then sometimes that's how I feel. I am especially badly affected when Elin is ill and I didn't particularly relish spending the day on children's ward last week after our GP made us go in because he thought she wasn't breathing properly (Elin never breathes properly, lol). Happily the antibiotics we got sent home with seemed to have done the trick, and we met a lovely new Indian doctor on children's ward to add to our list! He was really thorough in his examination, which was good and expressed delight when Elin batted his hand away with BOTH of her hands when he tried to look down her throat. He said it was really good, it showed she can move her arms with intent. I am just praying now that Elin doesn't break out in my chicken pox! Though if she avoids it, it will be a miracle! She looks so cute today (see above!) sometimes I can't believe there is anything wrong with her perfect little being. Bless you Mummy's baby.
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Thursday, 15 October 2009

;-(

I feel like shite tonight. I hate Cerebral Palsy for what it does to Elin, I hate Wrexham Labor Ward for doing this to us with their lazy care and I hate God, or whoever the hell it is up there, for taking the piss out of me. I just wanted to be a Mum like everyone else, not dealing with heartbreak every single day. Sometimes I swear my heart actually hurts. Sometimes, it's just too much. But what else is there to do but to keep going??
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Tuesday, 13 October 2009

News story...

Just saw a story on the news about a woman whose son suffered fatal brain damage at birth after a lack of oxygen when two doctors and midwives refused to act on the fact that her baby was in distress during labor. DESPITE the fact that the CTG was clearly showing foetal distress, and the woman was only 32 weeks pregnant, doctors kept her in labor so long that when he was eventually born he was taken strait to intensive care (like Elin) but his brain damage was so severe that 10 days later she had to turn off his life support. My heart goes out to this lady, it was her first and much-longed for baby. She says she simply could not understand why they weren't doing anything to help. The first doctor even disputed she was in labor, suggesting she may be constipated. She should have been given a c-section hours earlier (sounds familiar). The lady has been awarded £160,000 compensation but would trade it in a heartbeat for her son's life back. This is happening ALL TOO OFTEN it makes me feel physically sick that so many women across Wales are putting their trust in labor wards full of staff who are too lazy or inexperienced to do their job properly. No one can ever imagine what it is like to give birth and not hear that cry you have been dreaming about for months (or in my case years) and to go through months and months of hellish news only to discover after an inquest that things could've been different, this was not meant for your baby- you just happened to go into labor at a time when there were a handful of staff on who didn't read your notes, didn't monitor your baby, didn't look after you. This woman will never get over that lack of care, and neither will we- though our outcome, happily, was that we at least got to bring our baby home.
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Friday, 9 October 2009

Passport......

I think Im going to get Elin a 'medical passport'. It's a little thing she can carry around with her, it says 'Hello, my name is Elin and I have cerebral palsy' etc etc with her likes and dislikes, then it goes on to explain her condition in non-medical jargon terms- like that she has a feeding button in her tummy etc. We were out in the car the other day and I suddenly had this morbid thought that what if we crashed, or actually, what if anything happened to me when I was out with Elin. People might not realise what was wrong with her and what if they tried to give her a drink? They would be choking her without even knowing it. Apparently you can get these passports from Cerebra. I won't even think about the fact that it's probably the only passport she will ever need ;-( I am also in the process of applying for a blue badge so we can park in disabled car parking spaces- might make life a bit easier. God, the things you have to think of......
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Tuesday, 6 October 2009

Vocal..


In our 3-monthly consultation today with Elin's doctor there was nothing much to report. Except, as we were leaving we mentioned that she is starting to babble a bit. He then told us, conspiratorially , that when we first went in he had written down 'Vocal!' in his notes and stressed it was with an exclamation mark because he was surprised to hear her making baby noises. I am so happy- could it be that there is a ray of light in her predicted world of silence?
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Sunday, 4 October 2009

Shopping trouble..

Why doesn't anyone manufacture special seats for trolly's for disabled children? I recently saw in the Cerebra newsletter a mother had written to them asking them to design something she could take to the supermarket to put on the generic trolly seats that would support and restrain safely her daughter who was 3 and had C.P. They came up with a fantastic easily trasportable foam and velcro add-on for a trolly seat- why cant something like that be available widely for all disabled children? Elin is far too big now for the baby seats attached to the trolly's and cannot sit in the plastic fold-out toddler seats in the trolly's as she is completely unable to support herself. This means I can only ever go shopping when Paul is at home as I cant take her with me. Really frustrating! I know the supermarkets do online deliveries and thats great for us but sometimes I just want to get in the car and nip out for a few bits. I think i will e mail cerebra and suggest mass production of their trolly seats..i cant be the only one with this problem.....
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Thursday, 1 October 2009

Bradley....

Bradley was the son of the first Mum I ever contacted on the internet after having Elin. He was born after a horrendous labor, where he got stuck in the birth canal and suffered profound brain damage, giving him massive and complex problems like Elin such as C.P . He also had a particularly nasty form of infantile epilepsy called Lennox Gastaut Syndrome as a result of the brain damage. When I contacted Suzanne, his Mum, through a forum about kids with C.P she was amazingly strong and gave great advice. She became my friend on facebook and we shared birth stories, anger at the hospitals following the shocking mis-management of our labor's, photo's of our babies etc. etc. A few months after I found Suzanne, Bradley passed away in Derian House, a children's Hospice after battling several infections and constant fits. He was three years old. Tomorrow would have been his fourth birthday and I have just read Suzanne's memorial page to him. It is, needless to say, incredibly moving and I wish this did not happen to people, I wish everyone who ever got pregnant could have their baby, just as they had dreamed . I wish a lot of stuff, but just for today, I wish I could help Suzanne in her grief over her beautiful boy, but nothing I could ever say seems appropriate. I do know I will never forget Bradley. He was the first baby I saw who was like my baby and he made me feel like I wasn't alone. God bless you, Bradley.
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Wednesday, 30 September 2009

Cerebral Palsy sucks. That is all I have to say today. Not very profound, but true.
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Monday, 28 September 2009

A call to the Neuro....

Neuro says the spasms Elin has been having are probably seizures. She goes extremely stiff, throws her head back and her limbs shake a little. Sounds worse than it is, but is still upsetting to watch. He doesn't want to put up her meds though cos it's not happening often enough. He said he wasn't worried about them-sSo I guess we shouldn't be. But Im still going to film one to show him at our next appointment. I want to know what kind of seizure it is, if it is a seizure. As severe CP can cause muscle spasms it's difficult to see sometimes what is caused by the C.P and what is the infantile epilepsy (which is a secondary condition to the CP). Ho-hum. In better news, Elin has been making 'babbling' noises when we mess around with her, really happy little baby noises. The first pre-cursor to speech, would usually happen at around 3/4 months. Of everything, I will never give up hope that she may say a few words one day. If I let myself believe I was never going to hear her voice I probably wouldn't get up in the morning, so I just refuse to believe it. Simples.
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Sunday, 27 September 2009

Elin slept at her Nanny and Grampy's last night for the first time ever!! Had to take a lot of stuff around, epilepsy meds, milk pump, syringes, special mattress etc but am really glad she went, so nice for my Mum and Dad and good for us to get a night's sleep!! I was starting to worry that if anything ever happened to me and Paul and we couldn't be at home for whatever reason, then nobody else would know how to look after her overnight- manage the feeding pump etc- so it great that Mum and Dad are getting a bit of practice in! Another little niggle that was bothering me. and now one less thing to worry about. If you had told me when I was pregnant that it would be 14 months before my baby went to my Mum's for the night I wouldn't have believed it! I figured we would probably have our first night off when the baby was about 6 weeks. Ha!! I suppose it's a good job we don't have a crystal ball....
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Friday, 25 September 2009

Recently someone told me they thought it was great that Elin mixed with healthy, 'normal children' at her childminders etc. I completely agreed. They went on to say it was great for the other kids, because it would help them to understand disability. But then they said it would also help teach the kids how 'lucky they are'. Well, I think mixing with other kids is great for Elin's development. I certainly think its great that the other kids may grow up understanding disability more. But ...guess what..... I don't really give a shit about other kids learning to know how lucky they are by using Elin as a baseline! How am I supposed to react to that? 'Oh well, as long as my profoundly disabled daughter is helping other people's perfect kids to know how lucky they are then I guess that makes me feel better about it all'!!!! Rahhhhhh of course I realise it was not meant in this way but you would think people would have a bit more bloody sensitivity- or, as Im learning sometimes, maybe not.
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Thursday, 24 September 2009

Photo booth frolicks!

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Today I am wondering if Elin's seizures have come back as she keeps having the odd jerky moment again. Neuro said to expect it and they would probably never be completely controlled but it doesn't make it any easier. As if having severe C.P wasn't bad enough, Elin is also one of the unlucky few who have infantile epilepsy too. It would break your heart, if you let it .
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Sunday, 20 September 2009

C.P or not C.P?

Poor Elin's eczema on her arms terrible today and I wonder if that too, is part of her condition somehow? I wonder this about every little thing she has- is it because of the C.P or would she have had it anyway?? Don't see how it could be, but either way it is horrendous so a trip to the G.P's is in order methinks. As if she hasn't got enough problems! Poor baby. A tooth painfully poking through today, which makes 6. Another irony of C.P is that she cannot use her hands to help her with her teething, no biting or sucking them and definitely not holding anything to chew on ;-( so when you consider that she copes really well with teething, brave little soldier. I recently noticed a groove under her tongue where it has been running over her two bottom teeth. Apparently, because she doesn't eat anything orally, her sharp little teeth are never given the chance to 'blunt' themselves so they will need to be filed down before they make a hole in her tongue. We are on the waiting list for the hospital dentist. Yuck.
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Saturday, 19 September 2009

Elin on her holli-jollies!! Aug 09

video
Elin in her wetsuit in the sea with Daddy and sister Caitlin ;-) ;-)
Who says North Wales can't be fun? ;-)
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Friday, 18 September 2009

Happiness is...

Walked into Childminders at lunch time and for the second day on the trot, and for the second time ever, I call Elin and she turns slowly and her eyes dart around and she slowly and purposefully smiles. Big, wide and toothy. She knows me. She knows I am back. Shes pleased! I cry all the way home.
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Thursday, 17 September 2009

Hospital playgroup

...Found Playgroup hard today at the hospital. Elin and four beautiful boys who all had downs syndrome. Our c.p partner in crime wasn't there. Felt very isolated as the other Mum's discussed how the downs had affected their babies, I could not join in. All the babies were similar in age to Elin. I watched them pick up toys, laugh, sit up, look at things properly , gurgle, chew things. I feel jealous as I watch Elin on the mat, not focusing and swiping her limbs around and choking on her feed not understanding. Hate myself for feeling like this, it's a crap way to feel. It's defeatist. Watched as the other Mum's wondered what was wrong with Elin, not being able to put their finger on it, until one asks. So I tell her and she dosen't know how I cope, she says. It's meant kindly but it makes me feel worse. Crap, crap, crap. The therapists are jolly as ever and I want to pick Elin up and come back to the bubble of our house where Elin is just Elin and nobody pities her or see's how she is 'handling today'. So I do. I don't think hospital playgroup is for us.
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Wednesday, 16 September 2009

With a little help from my friends..


Last June the school where I teach organised a sponsored climb up Snowdon, to raise money for Elin. 17 staff completed the climb.We chose Hope House Children's Hospice, where terminally ill or extremely disabled children go for respite care, to donate the money to. The grand total raised was £2, 797 which is awesome. Tomorrow we will present the cheque to a representative from Hope House in a special assembly at my school. There is nothing more humbling than seeing people you love, people you care about, family and friends and even people you have never met in your life raising money because they have been moved by your story, and the life of Elin. I am eternally grateful to all who donated but especially to my work colleagues who organised it all of their own accord, just because they wanted to do something. It showed me that people have a greater capacity for kindness than i ever could have imagined and I wish everyone who had a child like Elin could have this amount of support, because without it Im not sure where we would be.
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Tuesday, 15 September 2009

Farm fun...

One of the many, many ironic things about having a child with C.P is that it's not just the big, obvious things that you have to deal with like the mobility and vision problems. It's the little things. Like the fact that due to excessive involuntary contorting and muscle spasms, Elin cannot actually sit in anything. This renders her car seat and buggy practically useless, meaning every necessary trip out is a stressful experience at best and at worst an I'm-never-coming-out-ever-again kind of experience. As for trips out that are not necessary, they are extremely few and far between, with us having to psyche ourselves up beforehand for the juddering and screaming from Elin, which ceases immediately once human contact (i.e cuddles!) is restored. Frustrating is not the word, we have tried everything. Anyway, at lunch I picked Elin up from the childminder, and they had been to a farm. As I gazed with awe and wonder at the bravery of my childminder (who is amazing, but more on that another time) for actually taking Elin out voluntarily, I noticed Elin had a pink smily-face sticker on her t-shirt. It was given, said the childminder, for being good in the car, and even better in the buggy at the farm. I immediately developed a little lump in my throat and puffed up with happiness, that little sticker could have been a Nobel Prize as far as I am concerned. Achievement where Elin is concerned comes in tiny steps, but when it does come, my pride is as fierce as it is overwhelming :-).
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Monday, 14 September 2009

How good is this..? ;-)


The Independent, 30th June 2007
By Jeremy Laurance, Health Editor

Sorrow and pity are natural responses to disability in children - but they are misplaced, researchers say.

There is no need to feel sad about youngsters with cerebral palsy because they experience life much as other children do - with all its joys and sadnesses, successes and failures.Able-bodied adults tend to view such children in terms of the struggle they face and their lost potential for a full and active life. But that is not how the children see themselves, according to researchers from Newcastle University.A study of 500 children with cerebral palsy in seven European countries has found that across a range of measures, including psychological wellbeing, self-perception and social support, their levels of satisfaction are as high as in other children.Though disadvantaged, in some cases seriously, their impairment is incorporated into their sense of themselves from birth and they embrace life and all it has to offer with the same excitement as other children.Professor Allan Colver of Newcastle University, who led the study, published in The Lancet, said it contained an important message for parents. “Parents can be upset when their child is diagnosed with cerebral palsy but they can now be reassured that most children with the condition who are capable of providing information at the age of eight to 12 have a similar quality of life to other children.”

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Sunday, 13 September 2009

When you're smiling....


Have just read my last blog and realised although it gives our history, nowhere do I pojnt out the pure, unconditional and all consuming love we have for Elin. When she was first diagnosed , the prognosis was full of negative's - never walk, never talk, never eat orally (she is tube fed), never see properly, never understand life as we know it (the Neuro said she would never be a 'thinking person') and never stop having fits. This is not how we see Elin. We see her in terms of positives and 'can do's'. One thing I was obsessed with in the early months of her life were smiles, because she never did. We tried everything, toys, songs, games, kisses, cuddles. I thought despite everything, if I could just get her to smile it would be unlocking a form of communication and I would know she was happy at least for that moment in time. I was desperate. I saw babies less than 6 weeks old out and about who were smiling beautiful, perfect gummy smiles. It felt like a knife in my heart. Then one day, when she was 10 months old my sister brought her a squeaky chick toy. When she heard it, she smiled. Then again. And again. It changed everything for me and proved that despite the odds you can never give up. This photo is the first smile we managed to catch on camera and I will treasure it and what it means forever.
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A Brief History of Our Universe......


So how did I get here?
Sometimes Im not sure. It all seems so unreal. But here I am and here I'll stay so I'll fill you in on the story.
Elin was conceived after successful IVF treatment (unbelievably and almost unheard-of first time success!) because I cannot have children naturally following fallopian tube surgery when I was younger. After a completely straightforward and healthy pregnancy she was born at 6:28 a.m on the 22nd July 2008. She did not cry, the midwife turned a nice shade of ashen and my husband was screamed at to 'pull the cord' to call the emergency crash team of doctors. In a nutshell this is what happened next.............
1 month on S.C.B.U...touch and go....brain scans, testing etc etc....then eventually home with a nasal feeding tube. Home for 2 weeks then back to children's ward for 3 weeks due to excessive vomiting and may I point out, excessive screaming (which turned out to be acid reflux and not, as the trainee Health Visitor had assured us it was, colic). Cerebral Palsy given as a diagnosis but apparently 'impossible to tell' the extent of the brain damage incurred at birth. Home again, more tests then off to Alder Hey at 4 months old for a fundoplication, vagotomy, gastrostomy and pyroplasty. 3 hours in surgery and all goes well. Elin more comfortable and stops vomiting. BUT this is where a Neurologist points out that Elin is not just twisting and having muscle spasms, she is fitting. She has West Syndrome- a form of epilepsy synonymous with her severity of brain damage which he describes as H.I.E grade 3 which I learn about from google later on ( I also learn not to look up anything on the internet again.) Neurologist lays out a very poor prognosis for Elin (think as bad as it gets in terms of brain damage and you're halfway there) and we go home for the holidays with a present of strong epilepsy drugs. Merry Bloody Christmas.
The months that follow consist of Elin having up too 100 fits a day and not developing any skills as far as we can tell. There are tears, depression, disbelief, anger and Paul and I digging deep into our psyche's to find something we didn't know we had- the strength to deal with this impossible fate that has been laid at our unwelcoming door. We do this with an incredible amount of help from friends, family and work colleagues. The sort of kindness that would restore your faith in humanity and for which we are eternally grateful. Fast Forward to Summer 2009-Elin's 1st birthday and things are better. Elin is a lot better, having found finally the right cocktail of drugs to control her fits. We are a lot better. I am even back at work, part time and feeling much more like 'me'. But neither of us are in denial about the road we have embarked upon with Elin and the difficulty of the journey ahead.
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Blogging Virgin ;-)


Well......my first 'blog' after realising whilst I was driving home from Asda that I needed some sort of outlet for the thoughts that my poor head is crammed full of since I had Elin. I wish I had started this when she first came home from hospital, but back then I could barely look after myself and my new, freshly diagnosed, crying, twisting, vomiting poor, poor baby let alone switch on my laptop and start being coherent. Now, of course, things are better. Now, my husband and I know what we are dealing with. We know all there is to know about Cerebral Palsy and Epilepsy (but wish we didn't). More importantly we know Elin and we know that the black and white hit-you-in-the-face-with-a-sledgehammer prognosis we received from the Neurologist last year is not ALL she is. In fact, it's not even close to describing how Elin is, or what she means to us.
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