Bloody hell this has been quite a hard week!
Thank god we had such a lovely couple of days at the start so we were a bit topped up before Rosa got poorly.
It started on Wednesday when she was out of sorts in the morning and mostly didn't have her nap which is never a good thing. By lunchtime she was absolutely exhausted, not really up for food and very hot and floppy although the weather was really hot so I mostly put it down to that and lack of nap. We went to music therapy in the afternoon and she literally couldn't keep her eyes open, which was a shame as usually she loves it and this was the last session of the term so Simon capered alone! She didn't even raise her hand to the chimes so after about 15 minutes of Simon basically noodling away to a sleeping baby we decided to call it a day and go home. She did absolutely conk out when we got home, she slept without a peep for nearly 3 hours which she never normally does in the afternoon. When she woke up we tried to give her some dinner but more importantly fluids as it has been ridiculously hot and she was really sick twice. This was very alarming, she went so incredibly pale and floppy and distant. We managed to get her to drink some water before bed and she slept a very long time. In the morning she was just so distant and weak and that carried on for about 24 hours. Our rational minds kept telling us it was a bug and it was her way of dealing with it but the fearful side wondered if this is how it will be? We couldn't reach her at all, it ws like we were behind frosted glass or something, she knew we were there but that was about it. Really hard and really scary. Obviously constant monitering, temperature taking and checks all through the night ensued as well as perpetual discussions about whether to go to the Dr or not. So yesterday when she started to come back to us we were so relieved, I hope next time she is poorly it won't be so frightening as I think her response to trauma of any kind is to scream or close down and illness is no different. She didn't have the energy for screaming so she really did shut down, more than we'd ever seen before.
So as I said we were really relieved to see her back and fiesty but the poor lamb immediately went into probably the worst bout of teething she has ever had. I guess she wasn't properly fit anyway and it really knocked her for six, and us I have to say. At least she got her strength back but it all went into loads of hysterical screaming on and off through the night too which she never does. Needless to say all of this is horrid in normal babies but as usual we are always thinking about the extra dimension that is Canavans disease and we really don't want to think about that at 1,2 and certainly not 3am! She has also developed a mystery rash (oh joy!) she is blotchy all over her face and has little spots on her neck and all over her torso, I've googled far too much but am sure it isn't meningitus which is the main thing, also not measles or chicken pox
Thank goodness I think (hope!) we are through the worst today. She had an epic nap this morning and dear sweet Rosa was back if only for a few hours this afternoon, I even got a couple of smiles Hooray! However as i write G has just gone into see her as she has woken up (again) she must be so tired but things hurt! We'll see what tonight brings......Just a quick post as I must have a bath!