Living with Cerebral Palsy 🍋🍋

Sunday, 12 December 2010

That was quite an absence!

Hi all! Wow I knew I hadn't updated in a while but had no idea it was so long! This is mainly because I guess I haven't felt the need to, that is, I am always drawn to my blog to vent my fears and frustrations to do with Elin. Thankfully, things have been going amazingly well lately and of course I am wary of saying that, but it's true! Elin has been a superstar. We feel since she turned two in July that things have really settled down for her. She travels better and her seizures are more infrequent. She is such a happy little soul and has been so calm for such a long time now. We even managed to get to London this weekend with her..unthinkable twelve months ago! I have read that children with severe brain damage can take over two years to even start making sense of the world in any way. This is what we feel is happening with Elin. She is beginning to understand her special and unique world. We have started the statementing process for school and I am so looking forward to Elin going, where the teachers are experts in her condition and she will be able to grow and develop even more as well as being around other children. We are also well underway with the process of adapting the house for her. She will need wheelchair access, ceiling hoists, a lower floor bedroom, a special hydraulic bath to name but a few things. It means we will need an extension of course. It's a lot to get your head around, it fairly easy to carry around a two year old...but what happens in ten years time when she is a teenager and still unable to move? I don't like thinking about that too much, but clearly we need everything in place well before she gets too heavy to lift. We are lucky we live in a day and age where these things are available to us. Fifty years ago Elin would probably have had to live in a hospice ( she definitely would not have her Mickey button for feeding! ) so we have to thank God for that, that she was born now and not in a time when we could not have looked after her. That would have broken any parent's heart. I got reminded today of a saying I love and I think it sums up mine and Paul's feelings towards Elin's condition brilliantly: When life gives you lemons, make lemonade :-). Elin is definitely my lemonade.
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Sunday, 26 September 2010

Go away seizure monster!

Increased seizure activity in my little snopple chops this past week :-( Culminated in two fits requiring buccal, one on Wednesday afternoon and one on Thursday morning. Don't think she recovered properly from the seizure on Wednesday afternoon to be honest, which may be why Thursday's fit happened. A perkier girl Friday, then back to being floppy and uninterested in anything on Saturday. This prompted a little visit to the local Children's Ward, to which we have open access (meaning I don't have to go through A and E , I just call up, say we're coming and we turn up. It's an absolute godsend). Luckily the ward was quiet and the lovely Nurse and Doc saw us strait away. I just wanted to get her checked. It's not as though I am a fussy Mum, when you consider her problems. I usually know when something is wrong and we not been to the ward since May, so I felt ok about taking her in and asking them to check her over. They found nothing untoward. I concluded with the agreement of doc that the most likely explanation is teething, which dogs poor Elin to death as she cannot chew anything or put anything in her mouth to relieve it. Lots of tears and crying at bedtime, which hardly ever happens. The sound of Elin crying rips my heart out. So its a good job we had a stockpile of calpol and nurofen!! I felt so bad for her and so frustrated that she cant tell us or show us what's wrong. Lo and behold this morning, in a regular inspection of her gums with my fingers ( a dangerous business) I discovered a tiny bit of a back tooth poking through which hadn't been there before. I knew it!!! Lets hope that explains the increase in seizures, as it so often does, and lets hope the rest of the pesky teeth cut soon! I hope the seizure monster leaves us alone for a bit and goes to visit someone else now!!
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Wednesday, 8 September 2010

I'll be your dentiiiist!

First trip to the dentist today! I think Elin must have been excited because she sat brilliantly in her chair all the way there are for a good while in the waiting room before I got her out for a cuddle. She was doing her laugh which is extra loud and can sometimes sound like she is in some kind of pain....I noticed some people doing the 'look everywhere except at the noisy child in the wheelchair' eyes, but I didn't care at all, except I wish they had a good look cos they would have seen that she was laughing and how cute she looked. Anyway, enter dentist call in Elin's name...woah! Hang on a second! He appears to be some sort of cross between George lamb and George clooney! Well ok maybe not quite but he certainly had an air about him and I don't get out much, ha! Elin must have agreed because she flirted her way through the appointment. She noticeably looked around at the halogen lighting and the bright shiny white walls. Super-dentist was amazing. He spoke to her and even stroked her nose -her favourite thing!- without me telling him to. She did one of her best ever flashy massive smiles and opened wide like the best of them and he had a good look. He said her little gnashes were fine and as I worry about aspiration I should brush them without toothpaste, twice a day. Even though she doesn't eat anything orally, her teeth will still collect bacteria and produce plaque, so you have to 'disturb it'. Good job she had a fab new flashy toothbrush for her birthday! I was so proud of her today. Next time I am going to ask if she can have a sticker :-) :-)
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Monday, 23 August 2010

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The great divide!

Well, the website is up and running for my ex- university flatmate and good friend Laura Doddington's boyfriend, the awesome Dave's cycle across the great divide in order to raise funds for Elin. I cannot express how humbling this is and what it means to us as a family that somebody would take on such a challenge in Elin's name. To say it restores your faith in humanity would not be too great an accolade. Not only this, but the fact that so many people you don't know have read Elin's story on the website and donated has already caused us to have gigantic lumps in our throats! The site went live this morning and has already raised our beautiful girl 200 pounds. Simply incredible. The funds will be spent on varying forms of sensory equipment, to kit out a sensory room for Elin. Please visit the website to find out more..
www.davidridesthegreatdivide.com
X
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Saturday, 21 August 2010

Walker hope....

Bit of a weird thing happened the other day. I had a dream that Elin was walking, and it was lovely because I could feel her walking right by me and holding my hand like all the other kids instead of being draped over my shoulder. I felt ten feet tall. Waking up from that was pretty tough but I soon forgot about my wonderful fantasy until the physio arrived and mentioned that there is a rep coming to the health centre with a special walker and she wants to try Elin in it. It would be to see if Elin could move her legs independently at all in it, cos if she could it would basically 'walk' her around! Very slowly I imagine, but still. They are hopeful because she will kick her legs when lying flat on the floor and it could be a skill that translates to this especial walker. They warned me not to get my hopes up, that she may be too little yet. I am trying not to think about the possibility that Elin could achieve a tiny, minuscule thing like that by herself, because forget fame and fortune, these little steps, that will be so difficult for Elin to manage and yet are what every other parent takes completely for granted, are the things that our dreams are made of now. So I will try not to think about it because I dare not hope that our dreams will come true, I am way too scared of the fall.
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Tuesday, 27 July 2010

Beat the birthday blues....

Quick update: Elin had the most amazing birthday, she had two parties, 60+ cards, £150, 38 guests at her birthday BBQ and countless presents. She was happy, smily and relaxed and a good time was had by all. What a way to beat the birthday blues!! She is *touch wood* havin a good week and we hope will continue to do so! Life feels pretty good right now- I'm sure the fact that Paul and I have 6 weeks off is helping a great deal...not having to rush here and there, hardly any hospital appointments, it's alllllllllllll good my friends!! Yeeeee Haaaaaaaaaaaaaa !!!!!!!!!!!
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Wednesday, 21 July 2010

Birthday Blues?

Elin is 2 tomorrow. Huge cause for celebration, obviously (and believe me there will be celebrations she's having two parties for goodness sake!) but I would be lying if I didn't say I had mixed emotions. Extremely bittersweet memories. The sounds and smells of the maternity ward, the labor, the pain of course!, the expectation, the excitement. Then, she was there. And it wasn't right and nobody was smiling and they took her strait to the resus table and the midwife's face. God, her face, it was white as a sheet. When the doctors ran in like something off the television. I knew she had gone, my baby who I hadn't even seen. I knew she was hovering between life and death. And they worked and worked like ants until a triumphant exclamation "we have a heartbeat". And they lifted her to whisk her to intensive care and the life support machine and they said take a look, take a quick look, Mum. And I couldn't. I couldn't look at her I was terrified, petrified to see her. And words kept coming out of my mouth and I could hear myself but it wasn't me speaking. Then she was gone and so were they and the midwife had taken her hands away from her face and it was over. My baby had been born, I didn't see her or touch her, she was gone to a room of wires and beeps and we were left alone. I told Paul to call my Mum and that's the last I remember. Whole thing no more than 6 or 7 minutes. And in that 6 or 7 minutes, a lifetime worth of change, irreversible and complete.
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Thursday, 8 July 2010

My little sweet pea has a pod!

Well, today the P-Pod arrived, it was in the back garden when I got home like some kind of mother-ship waiting to be boarded! Elin has been in it now for well over an hour, even fell asleep in it! But I confess I feel this is more to do with the fact that she seems to not be herself today, is completely listless and twitching constantly (so different to yesterday:-() and therefore cannot really be bothered to fight against being put in a chair for once (Elin believes all chairs are evil, which she proved by christening said P-Pod within 5 minutes of being put in it, praise the lord for vanish stain remover!). It is bigger than I remember but she certainly looks comfy in it, I hope she grows to like it. It could not have arrived at a better time, as she has been chokig continuously today and I would have struggled to leave her lying down for even a second. All hail the P-Pod!! (For now. Updates will follow) x
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Monday, 28 June 2010

Things are lookin up..

Since my last post we went to Alder Hey and saw the Neuro. Not anywhere near as scary as I had thought. He was reasonably relaxed about the increase in fits of late and seemed to think it was still related to the infection Elin had at half term. He doesn't want to change her medicine as that could cause further problems. He said if they continue to increase he would get us back to have a re-think. Went home feeling more confidant and slightly more chilled. Until Sunday. Being Father's Day and having a meal out planned, Elin decided it would be a good time to shatter my new found chilled attitude and have yet another fit. Despite what the Neuro had said, the negative worries and stresses crept back in and I found it hard to focus all day. As the Neuro had advised we wait another 3/4 weeks before calling him, to see how the pattern of fits developed, there was nothing to do but get up on Monday and just pray we had a better week. The good news is, we did! What a difference in Elin this week, I kept waiting for another fit, but it never came. An amazing weekend with a friend of mine who was visiting, Elin was just on top form and my friend got to see her at her very, very, best. Just had to be careful to keep her out of the heat poor thing, it really disagrees with her. Not so relaxed and happy today, but then I think she had used up all her smiles at the weekend! Just hoping, as always (my life is made up of hoping and wishing) that the good spell continues .............
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Thursday, 17 June 2010

Quick update...

Hi Elin fans. The antibiotics DID work and worked well, within two days we had our girl back. We only had to breathe on her and she was laughing. Great stuff. A whole week of bliss.Then Saturday, which historically is not a good day for Elin. Paul uttered the immortal line 'we should do something together and leave Elin with your Mum' which can only really mean one thing: Yup, Elin decided to have a fit exactly half an hour after we dropped her off and just as we were in a particularly lovely Mexican restaurant settling down for lunch. Luckily I had taught Mum how to administer rescue meds and give Mum her due she didn't interrupt our rare break together, I actually phoned her to 'check' on Elin but in reality I think I knew a fit was brewing. As is the custom, Elin went strait to sleep and Mum encouraged us to stay out and about for a bit. Cue Paul and I wandering aimlessly around shops trying to enjoy ourselves when really we just wanted to be back home. Ho-hum. Back to normal on Sunday and again a very good week for our little monster, then came today. When I got her home after work I knew something wasn't right as I couldn't get her to smile and she wasn't with us. I guessed a fit was coming and it did at about four this afternoon :-( :-( :-( I can no longer put these down to her being poorly, or hot, or out of routine. She is having too many. Luckily we are booked for a visit to the Neurologist at Alder Hey tomorrow.....I am looking forward to what will probably involve a change of medicine, as it might help, but as always am irrationally terrified that he will hear what we have to say and somehow wash his hands of her, tell us there is nothing to be done. Of course this is unlikely ever to happen given the fact that there is still a list of meds he hasn't tried, let alone the ketogenic diet. But knowing the fear is irrational does not always make it any less horrifying a thought.
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Friday, 4 June 2010

The rise of the machine!!

The good news is I am back, ready to fight another battle. I am beginning to feel so much more normal and like me and much less 'wallowy' and feeling sorry for myself. The bad news is, the next battle arrived immediately, so it's a good job I was in full Sarah Connor mode...
Elin has cried all week. Can't decide if it's a good or bad thing that Paul and I were both on holiday from work this week! Anyway, it's most unusual as despite her complex issues she is a placid, happy little thing (obviously qualities inherited from her mother). We were convinced it was her teeth, as she has some especially razor-like ones beginning to poke through near the back and little bleeding bits on her juicy gums. She has been gagging constantly, had a poorly bottom and diarreah and the snuffles which all kind of points to teething too. Last night and this morning she perked up. We took a risk. We went to the seaside for the day. Bad idea! We got stuck in bumper to bumper traffic on the way. When we arrived, we managed to get as far as the busiest part of the lengthy promenade and Elin decided to have a fit. A nasty-rescue med-requiring-fit. So, in full view of all she was laid unceremoniously on her changing mat and I administered the wonderful candy-floss smelling medazolam. The fit stopped, Elin went to sleep and we continued onto the pier, albeit a little fraught and sweaty. This is where I noticed just how many people were staring at Elin. Not just looking, realising that yes, she was a special little girl in a special chair, and looking away. Properly staring at her. This pissed me off. I don't mind you having a look but you don't have to physically track us with your rubber neck until you can look no more. Anyway, down the pier we went. Had a dink, came back and Elin began to stir. It soon became apparent that she was still stressed. We had had to park miles out cos of the amount of cars so we began to walk back. I relented and took her out of her chair at which pint she began to fit again. We hugged her hard, sat down, got up but she wasn't having any of it. We raced back to the car, laid her in the empty boot and I gave her a second dose of the medazolam (unheard of, she usually has one dose a moth roughly) with the epilepsy nurse's warning ringing in my ear 'don't give her a second dose, take her strait to hospital' well, we were an hour at least from the nearest hospital so it wasn't an option and Elin's consultant had said he was happy if we needed to ever giver her a second dose. I then sat illegally with her on my knee, pretending to scratch my nose every time we passed a police car. Mercifully the fit subsided in the alloted ten mintes (ten minutes before complete and utter panic, presumably) and we went strait to our local hospital which in a tiny twisted way was nice cos we got to see some of the Nurses who are champions of the Elin fan club. We were there a few hours as the ward was very busy, but the blue angels brought me tea and sympathy so we can't complain. She was diagnosed with an ear infection which more than likely set off the fits and despite the doc wanting us to stay to keep an eye on her we brought her home (I am an old pro at this now) with antibiotics. If she has another fit in 24 hours we have to go back. God, I hope they work.
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Saturday, 29 May 2010

;-(

WARNING: This post contains extreme 'feeling sorry for yourself' sentiment and may cause nausea in those of a more positive disposition.
At the moment I am not 'living with cerebral palsy' as the title of my blog suggests, merely existing with it. Things are tough, on many levels. I feel completely and utterly defeated. Somebody up there is sure taking the mick out of me and having a bloody good laugh at my expense. What's up big guy? Was there nothing on the telly tonight? Did you think you would hurl a few more problems at me and watch how I react for your own amusement? Actually, what I feel like-not to martyr myself in any way you understand- is the Terminator. He of the first film, who kept getting shot in the chest and getting back up again and taking more shots. I have been taking hits for two years- longer than two years actually if you chuck the IVF into the equation- with nothing to do but get myself back on my feet again. In an out-of-body experience way, I wonder how much of this one person can take, how many upsets and how many stresses. At what point does the Terminator stay on the ground?
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Monday, 24 May 2010

Hair today.....

RARRRGHHHH! Tough day on Saturday. Elin had been a little twitchy all week but nothing major to report. She was grand on Saturday morning- albeit a little sweaty on the hottest day of the year bless her! However, then came the time where Paul had to go off to visit his Dad out in Runcorn and as I had a much-needed hair appointment Nanny and Grampy once again stepped up to have some quality Elin time. I had arrived in town a little early for my appointment and so was happily browsing the New Look shelves when my phone went, my heart dropped into my stomach when the word 'Mum' flashed up on the screen. Apparently Elin had decided she didn't want me to have my hair cut and had responded by having a big fit. I can't tell you how scary it was to leg it back to the car and burn home in order to give her the rescue medicine- very aptly named I feel. Luckily she did respond to the meds and so a trip into childrens ward was not necessary, but there were a few minutes when I thought the fit was not going to subside as it was quite violent. Pretty scary for my poor Mum and Dad, who would have needed to call an ambulance had I not answered my phone in time, as you only really have a certain timescale to treat her when she goes into a big fit like that. Lesson learned- train Mum and Dad up in using the rescue medicine. Also and perhaps a more important lesson- don't leave it until the last minute to get your hair done!!!!
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Thursday, 6 May 2010

Elin responds to light..!

video
Elin doing what impressed the opthalmologist so much- i.e clearly seeing the light (and inexplicably finding it hilarious!)
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Saturday, 1 May 2010

Wheels on fire.....


Today we took Elin to town in her brand spanking new NHS buggy/wheelchair. Yup, that's right, we chanced it because the sign up to that point had been good. Guess what? We weren't disappointed!! Woweeeeee she sat in that chair all the way around the shops without so much as a sniffle. Now Im not saying this was just the chair. Mornings are always better for Elin, because she has her medicines in the morning which can take the 'edge' of things a little....but, staying positive, I think we're onto a winner. I could get used to this, I told her, wheeling her around like everybody else, taking my time, actually stopping to look at things. A joyous occasion which I hope can be repeated! One other thing has changed. The chair is fairly obviously a specially made chair for a very special little person. This meant LOTS of 'looks' from other shoppers. Far more than I expected (and I had expected some). But I wasn't bothered at all, at the end of the day people are only looking out of curiosity, it's not often you see such a little person in such a special chair. I cannot believe anyone would ever look out of malice and so I am happy for people to look and to see that not all children are the same, and some children do need special equipment just to get around. Maybe I won't always feel that way, maybe some day when Im rushing and tired and cross I will be sick of other people's stares, but not today. Today nothing can touch me because I took my daughter shopping and ENJOYED it and that's 22 long months waiting to do that. If patience is a virtue I think I should be cannonised by now!!
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Tuesday, 27 April 2010

The first time..ever I saw your face....

The news from Opthalmology is good. We went to Alder Hey yesterday and the consultant is very pleased with her vision developments, however small. She can now follow a light for a period of time and look toward a light. She also responds to lights being turned on and off in the room and to me putting my hand in front of her eyes then taking it away again (she LOVES it, it makes her laugh her head off). He admitted that when he first met us last June he thought Elin was completely cortically blind (where the brain damage is so severe that it cannot recognise what the eye is seeing and therefore the child is, for all intents and purposes, blind). He was surprised to discover, after electronic testing, that Elin's brain was indeed responding to some of the eye tests they carry out, and that some images were being transmitted through the pathways in her brain to the cortex (which is the receiver at the back of the brain). He was sooo pleased with her it was infectious ;-) He gave us some more 'eye training' tips, which was handy. He also said Elin's eyesight will continue to develop, however slowly, until she is about eight years old. This means then, that there is a chance for her. Though presently she can only see shapes, light/shadow, colours and the outlines of things, there is a chance that one day she will be able to see a little more. Then came the cherry on the cake...one day, Elin may be able to see my face. He has seen it happen in children like Elin before. They become able to visibly recognise their parents, where they respond entirely differently to a face they don't know e.g a Nurse. I hope he is right, I hope one day Elin can see my face because there is no face in the world that loves her more and I think she deserves to see it with her own eyes. What a miracle my daughter is ;-)
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Sunday, 25 April 2010

Another day another.......seizure ;-(

Baaaaad day today. Feeling very upset as Elin had another fit today- exactly a week since the last one, which is weird since prior to that we had gone 3 months without one. I suppose there is no rhyme or reason to it. Unfortunately this time, we were out in Llangollen. Ended up administering Medazolam in the middle of a pub lunch.great. Kept very calm as Caitlin was with us and I never want her to feel frightened by Elin's condition, I could see her turning away so she wouldn't have to see her sister fitting. It broke my heart to see, she's only 12 it's such a lot to deal with. Found it very hard to relax after that, we had to basically just come home. As soon as we dropped Caitlin off I burst into tears- had been holding it in. Feel like screaming we can't even go out for the afternoon with the girls. It's so hard. Elin still not right, but better now. Hopefully fine after a nice long sleep. The cherry on top of the cake is that this coming week Elin has four hospital appointments- one in Alder Hey on monday, Wrexham Maelor on tuesday and then TWO appointments in the same department on wednesday, one at 11:00 and one at 3:30. Arghhhhhh!!!!! That's seven appointments in a fortnight!!! That's about six appointments too many for my liking ;-(
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Tuesday, 20 April 2010

Don't do it!!!

Have come on here to distract myself from messaging a pregnant barely-know-you-facebook 'friend' who has just announced they want a home birth. DON'T DO IT!!!! It makes me feel like vomiting with fear. I went through a whole labour being told that Elin was fine, her heartbeat was fine. Five minutes before she was born everything was 'fine' according to two midwives in a room full of equipment. But everything was not fine, Elin was unexpectedly stillborn and only here today because she was able to be instantly resuscitated by on-hand doctors and immediately ventilated on life support. Yes, I know it's rare. 1 in 1,000 births end that way. But what if that 1 is you, like me?? All the midwives kept saying after they had taken Elin away to save her life were 'thank god you didn't have a home birth' There is simply no way she would have survived. I can see the appeal of home births and people may not be aware of the dangers- I certainly wasn't before it happened to me. But seriously, how could you live with that decision if something did go wrong and you couldn't get to the hospital in time??? I just don't understand why anyone would put their baby at risk that way. DON'T DO IT !!!!!!!!!!! Not for the sake of having to spend a night or two in hospital!!! I would never say this to anyone wanting a home birth, it's not my place. But I can say what I want on my own blog so there, I've ranted (again) and I feel better for it. ;-)
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Monday, 12 April 2010

A letter to Cerebral Palsy

Dear Cerebral Palsy
ARGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I just want to take my daughter out in her pram!!!
I don't want to get halfway through a walk in the sunshine and then have to balance her over my shoulder whilst pushing the pram back home because she has discovered a way to work herself into a seizure as soon as her bum hits the pram seat!! This MUST be a behavioural issue surely?? But how is it possible for her to make herself have a seizure, which stops when she is picked up??? How is it possible that she is nearly two and I still can't so much as take her to the flippin shop or go for a pleasant stroll???
ARGHHHHHHHHHHHHHHHHHHHH I HATE you Cerebral Palsy. Screw you Cerebral Palsy with all your intricate, difficult, hateful nuances that no other parent could even begin to imagine! Sod off and leave us in peace you evil idiot!!
Yours sincerely a very frustrated Mummy.
P.S Ah, that's better ;-)
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Thursday, 25 March 2010

Orthapeadic + X-Ray

Hi Elin fans just a quick update ...yesterday I took her for her 6 monthly x ray of her pelvis. She needs these to ensure that her hips have not popped out of their sockets, which is a common problem in children with little or no mobility. If they do pop out, it may require an operation to fix them. Apparently, no amount of physio can prevent this from occurring, it just happens. Luckily for us they are exactly where they should be (phew...big sigh of relief). Also, I saw the consultant for him to assess her back- we have to ensure she is not developing curvature of the spine, again owing to her lack of mobility. Lucky again, everything seems fine. He doesn't want to see us for 12 months! Hurray! Good job it was good news as I was inexplicably on the brink of tears today . HATE going to the hospital - so many painful memories- which is ironic given the amount of time I have to go there. Luckily most of Elin's appointments are in the child health centre which is fine, it's the main hospital I just can't stomach- the smell's and the long corridors, just takes me back to the weeks we spent there after she was born. Also, x -ray is right next to ultrasound and I saw at least three happy couples bent over scan pictures as they were leaving- prompts very bittersweet memories for me cos I remember it so well. Elin was safe then. She was perfect in fact- the sonographer said so. I find it so difficult to deal with. Also not helping was manouvering a large buggy with a mind of it's own piled high with mine and Elin's coats, two bags and Elin's sepcial boots between the orthapaedic and X ray departments, whilst simultaneously propping Elin over my shoulder ( as usual, Elin had decided that actually riding IN the buggy was not an option she was willing to take) and trying not to drop her. The hospital was boiling hot and we had to wait 40 minutes for the appointment, during which time Elin decided to play to an audience in the cramped waiting room and do her best choking impression followed by at least 20 minutes of squeking- ensuring many sympathetic gazes from the other Mum's (but also inquisitive eyebrow raises and 'Awwwww' faces to each other when they thought I wasn't looking) so by the time we left, despite the good news, I was feeling a little frazzled. Thank heaven for the fab blue badge, which meant that I could park practically right outside the hospital door, worth it's weight in gold. We were home before we knew it (second big sigh of relief of the morning) had an hour's break before our next appointment- thankfully a home visit with the speech therapist (feeding expert)..but that, ladies and gentlemen, is another story.....
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Wednesday, 17 March 2010

Another hospital visit...

A terrible night last night. I cannot describe to all you lucky people out there who have healthy children what it is like to wake up in the night and discover your baby having seizures in their cot. Last night Elin had a raging temperature. She was burning. It was gone midnight and I had awoken thinking it was just her usual middle-of-the-night wake up. But she practically sizzled when I touched her and though we administered the trusty old calpol immediately, stripped her of her pyjama bottoms and socks/blankets etc and mopped her poor, fevered brow, her temp was still reading 39 after an hour. Added to that was the constant spasming, twitching and seizing which invariably accompanies such a high temperature with Elin's condition. To watch her wide eyed, confused expression while her body writhed and twitched was an absolute horror. I will just never, ever get used to it. Fortunately after a few hours and some Nurofen, she was able to relax enough to sleep. I, of course lay there in the consuming darkness waiting for something bad to happen. It didn't. My alarm clock set of a seizure in her sleep, so I knew we were still in a bad position this morning. Luckily the ward were as welcoming as ever and had her diagnosed with an ear infection and back home again with antibiotics in good time (and we got to see our friends the Nurses who are wonderful and treat Elin like a celebrity) She slept practically all morning and all the way home. I put her in her cot without removing her coat or shoes, thinking she needed and frankly, deserved, a rest. She seemed a little brighter this afternoon, which was lucky as we had yet another appointment- thankfully a home visit- but still very grumpy and twitchy. I seriously cannot believe this sometimes, that this is my life, that it is her life. I tried to pray for her again tonight but I couldn't-again. Because I prayed every single night that I was pregnant that my baby would be healthy. I haven't prayed since the day she was born. I can't. I don't think there's anyone there.
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Sunday, 7 March 2010

Latest visit to the neuro...

Hi all Elin fans out there this will be a quick update and probably rather boring but on Friday we went to Alder Hey (again-over 20 trips now at 100 miles each time- wonder if the nhs will cough up for the petrol??) and met with Elin's neurologist. I had called them on monday and they fitted us in strait away which was really good of them, as I had a letter saying our next appointment was September!! Errrrr...I don't think so!! Anyway it was a fairly worthwhile visit- apart from a ridiculous Nurse who weighed Elin and should have had a sign on the door saying 'Sense of humour not welcome here' but that's another story- he was pleased with her progress...yay...he actually used the word thrilled but he never even see's her at her best- she won't perform to him lol she is a monkey, it's so frustrating but nonetheless he was pleased so that was good news. We then raised the issue of her constantly 'rotating' or as I call it, 'twisting' unless she is on your knee...which makes travel almost impossible as journeys of any kind become unbearable as she thrashes around against the restraint of the cars seat or pram and basically just screams and sweats. He decided to up her dose of baclofen- a medicine she is already on designed to combat these rotations and apparently very effective when you find the correct dosage. I have to call him in 14 days if she is still no better and he may change the medication altogether then. Fingers crossed it works, changing medications makes me very nervous. So that's where we are. Her first wheelchair (which is actually much more like a super-posh buggy called the Jazz Easy) is on order too, lets hope when it arrives she can sit in it without getting stressed! As the weather improves I would love to take her for a stroll up and down the lane and-shock horror-maybe even further afield...but I won't count my chickens just yet- I have learned not to! As usual I will merely keep my fingers crossed and hope for the best.....
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Saturday, 27 February 2010

24 little hours

Feel like deleting my last post reading it back it seems so negative! But no point in censoring a blog really is there- it's supposed to be a true reflection of life after all! Great day today, Elin really well- helps when we don't have to leave the house I think she is a home-bird! And no need for any car/buggy related stress. Just me and her most of the day as Paul at his Dad's. Lots of fun and snuggles. Elin not in any pain or uncomfortable- If only all days were like this!!! Feeling very blessed today. Gorgeous day, gorgeous girl. ;-)
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Wednesday, 24 February 2010

Today I am mostly thinking...

...That it never gets easier really, you just get more used to it never getting easier. We watched Eastenders last night and desperately tried not to get upset when the baby was born not breathing, but both failed miserably!!. It was the Mum's cries that got me and took me back to a place I never want to think of again. Stupid really, it's only a soap, they're only fictitious characters. I wish I could erase Elin's birth from my memory though, the horror of it- like in 'Eternal sunshine of the spotless mind' I wish I could choose to have that whole memory wiped because sometimes the pain of it is too much to bear. Happy ending for the Eastenders characters of course, no soap would ever dare run a storyline depicting what happened to Elin. People simply don't want to know about it. How many stillbirths/poorly babies/children are there in soaps? Exactly. Bad things happening to children /babies just doesn't make good viewing does it. Emmerdale was brave once in running the 'cot death' storyline and it was brilliantly done. But they ruined it by magically solving the mum's problem when she discovered the baby had been swopped at birth and her baby was still alive and living in the same village (ha!). Pisses me off. Its about time they started thinking outside the box and reflecting a wider society. Imagine how much better people would understand disabilities like Elin's if it was shown in a soap like Eastenders which can get 16 million viewers!! But I digress. I suppose this tirade is really owing to the fact that I heard more news today about another birth in my family group, lovely news once again but very hard to swallow. How come everyone else in the world can give birth to a healthy baby, enjoying the feeling, the excitement, the wonder, the pride???? I can only imagine what it's like to hold your newborn in your arms, feel the relief that things are ok and see the limitless future stretch before you. Why did this have to happen to us??? Nope. It doesn't matter how much of a 'good' day I'm having. It never gets any easier.
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Friday, 12 February 2010

Better and worse....

Just a quick update for all you lovely people who follow the story of my beautiful girl :-)
After another hospital visit last sunday due to her erratic breathing and high temp, she has had a fantastic week breathing wise! I think her nose is FINALLY healing after the operation and the antibiotics the hospital prescribed cleared up the little infection that must've been lingering somewhere and making her feel rotten :-( For the first time in months she is breathing clearly! Cant tell you how happy this has made us. She is also sleeping more normally and back to only waking twice a night (yay!)
However her seizures are not so good, in fact she is having loads of little ones but touch wood no big ones to speak of . The little ones are hard to watch though, her chin wobbles unnaturally or she'll fling out her arm for no reason or her head will shake. I can cope with them when its a few times a day but lately its been every couple of minutes or so :-( Tonight we found a possible cause- a new molar poking through her gum on the left side- new teeth always upset her and this one is a monster. Because she can't eat anything or lift her hand to her mouth, her teeth cut really slowly- god it must hurt her. Anyway Im hoping once the tooth of doom has broken through that her seizures will calm down, then we will be back on an even keel- it feels like we sort one thing out and another problem arises- I feel like shouting 'Give her a break!!' but I wouldn't know who I was shouting at. Tonight I read of a girl like Elin who is 10 years old. She can say 7 words. This sounds like a miracle to me. I would settle for one word. It would be 'Mum'.
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Wednesday, 3 February 2010

Recovery

Well the two weeks since Elin's operation have been pretty hard! Her breathing did not improve and so for the last two weeks we have been watching her really struggle to get any air in through her little nose :-( She has not seemed to have worked out that she can breathe through her mouth, so a blocked nose is pretty bad news for her. Nights have been the worst, with her being up for hours at a time (usually starting around 2am) because she is simply snorting instead of breathing and cannot get any rest. Suffice to say we have been exhausted. She would then go to sleep early morning and sometimes sleep through until nearly noon. The first morning I was back in work after her op the childminder text to say Elin was still asleep and it was so unusual I was convinced she had somehow slipped into some sort of delayed post-operative coma!! Luckily Heather was on hand with some saucepans and spoons to rouse her! Stressful. Anyway the day before yesterday, after 11 days of listening to her snuffle and snort and being up with Elin practically all night, I took her to the hospital to get her checked out. convinced something dreadful must have happened for her still to be in such a mess all this time after her operation. They were really thorough on children's ward and even got an ENT doctor to come and listen to her. He agreed she was noisy, but said it was to be expected really after such an op, cos of the nasal swelling etc. He advised to keep her nose moist and carry on with the nurofen to reduce swelling. *touch wood* today is the first day we have seen improvement. Please god let this be the end of the breathing issue- she has so much to deal with already :-(
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Saturday, 23 January 2010

Operation Alder Hey...

This photo was taken 30 minutes after surgery!!! As usual I fell apart after taking her down for anaesthetic- it never gets any easier, especially as she was so happy this time then they put the mask over her face and she fought it with her hands and even her little feet were shaking OMG it was horrible. It seemed to take forever, then they removed the mask and said 'Give her a kiss Mum' and ushered me out- ARGHHH horrible!! Luckily all went well, they widened her left nasal passage and took out her adanoids. Hopefully this will help her breather more easily but up until now we have seen no imrovement- in fact she is struggling even more but the doc says it will take a couple of weeks for the swelling to reduce, so it may be better then. When I went to the recovery room she looked like she had done ten rounds with Mike Tyson- crying with blood all over her face- I suppose surgeons aren't concerned with cleaning them up afterwards! They kept us in overnight to be safe, so I slept on the old familiar NHS camp bed by her cot and she was really well through the night. We are home now and she is VERY blocked up and snuffly- god I really hope it's just the swelling. Watching her struggle to breathe is awful :-( I also went to her Neurology appointment while I was there, as her fits have been a little out of control lately. He has added another drug into the mix of epilepsy drugs and hopes this will work for her- so do I!!!! Suppose I will as always, just have to cross my fingers and wait.
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Monday, 11 January 2010

Alder Hey....

Awful visit. Took 2 hours to get there, so Elin was in a right state by the time we did. Hyperventilating and lathered in sweat. She barely had time to recover before we saw the ENT specialist who was very lovely, but shocked at the state of her breathing (it was particularly bad, I have to say, on account of the panic-stricken long car journey ). Had to go through the birth story again (never fun) and then he had a quick look at her. He said it must be very 'worrying' for us that her breathing is so bad. We pointed out its funny what you get used to. I am only aware of it now in public places when I see other people staring. Anyway, he listened to her chest and thankfully- a little positivity- says that despite sounding awful, she is actually getting a lot of air into her lungs. He is going to make another appointment for us where he will put her under a general and take a good look, probably remove her adanoids if they are enlarged. He says he has seen kids like Elin before and sometimes there's nothing you can do to help. Sometimes the brain damage is so severe that the brain simply isn't sending clear enough signals to the passageways to enable her to breathe correctly. He fears she may also suffer from sleep apnea. This is when you stop breathing in your sleep for small periods, then it wakes you up. He thinks this is why she wakes up at least twice a night. Great. Not at all worrying, then. Im sure that little nugget of information will help my insomnia. In the car on the way home, despite us trying some sedation to avoid a repeat of the journey there, Elin does not go to sleep, gets extremely stressed and starts fitting. Try going down the busy carriageways between Liverpool and wrexham in bad weather and watch your baby strapped into her car seat having fits. Do you take her out and hold her despite the heavy traffic? Or stick to safety first and leave her in her seat??? I did a bit of both, feeling sick with guilt, worry and frustration. The minute we take her out of the car at home and I am preparing to medicate her, she relaxes, like a wet rag doll and sleeps on the sofa for two hours where she still is now. Sometimes I feel like I just can't take any more and today is one of those days.I hate this, I hate it. I hate it.
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Sunday, 10 January 2010

ENT

Taking Elin to Alder Hey tomorrow for her ENT appointment. I really hope they can come up with some solution as she just can't seem to breathe through her nose. I am convinced this is what wakes her up 2-3 times a night, plus it bothers her and it sounds awful bless her. I really wish she didn't have all these extra little problems to worry about. I think she has enough to deal with!.Not such good news on the seizure front, she has had to have her medication upped as she is seizing every five minutes and has been for couple of weeks. They are only little ones and manifest themselves in small twitches of her head and arms, but still not good and distressing to watch. We back at Alder Hey later this month to see the Neurologist, I think he may change her medicine completely, which worries me as changing medicine has it's own implications- we'll see. Feels like I live in constant fear of what the future holds, it's a hard way to live your life! On the plus side Elin seems extremely alert right now, despite the seizures and is incredibly smily. Twice this weekend I have popped out and when I have returned she has broke into a massive smile when she hears my voice. I really hope it wasn't a coincidence! I dont think it was :-)
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