Wednesday, 30 September 2009
Monday, 28 September 2009
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.
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....
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.
Thursday, 24 September 2009
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 .
Sunday, 20 September 2009
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.
Saturday, 19 September 2009
Friday, 18 September 2009
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.
Thursday, 17 September 2009
...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.
Wednesday, 16 September 2009
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.
Tuesday, 15 September 2009
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 :-).
Sunday, 13 September 2009
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.
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.
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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