Wednesday, 30 December 2009
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!
Saturday, 12 December 2009
..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.
Monday, 7 December 2009
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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