So today I got to see Hallie’s consultant. She has a twitch that she has had since birth. It’s more of a tremor to be honest and is actually really beginning to worry me as its getting worse and worse. It is really juddery, almost fit like, and is in her arms and legs and pretty much her whole body. She started off just doing it in her sleep but now she is doing it when crying too.
So I was expecting to be a little fobbed off to be honest, was not expecting much from this appointment. How wrong was I! The lovely consultant took a lot of time to talk it through, and seemed genuinely interested, which is always reassuring. I showed her the videos I had taken, which kind of captured the ends of the episodes, funnily enough I do not have my phone poised to film at all times. She said they did not look like normal sleep twitches, which is what was suggested it was originally, so they need to be investigated. The word seizure was used a fair bit and that terrifies me.
So in the next couple of weeks we have to have blood tests, an EEG (looking at brain activity) and an MRI. She is only five weeks old, it all seems so wrong and not something a tiny person should be dealing with. Well actually nobody should be going through it, but a baby, it just seems so scary.
Just when I thought we were done with all the hospital time, looks like we are back again. Praying my baby girl is ok, whatever it is we will get through it, however we need to. She is lying in my arms as I type this, and is looking up at me with her knowing, trusting, beautiful eyes. I won’t let her down, I won’t leave her side. However worrying this is, we will get through it together.