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!

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.

Elin turns to find a rattle...

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 ;-)

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 ;-)

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.

Interesting article.....

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

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.