Today Auntie Trisha came down to Swindon so that we could finalise the details of the party. I am so excited. It really is going to be a fab day. Auntie Trisha kindly offered to host the after baptism party at her house, which is huge, has loadsa space for the kids to run around, and a lovely pool. So everything crossed the weather will be good. We're having a tea party because there are going to be lots of children there. A great excuse for eating lots of yummy cakes :O)
We discussed the cakes, the guests, and also the music we're going to have-All Honkey special songs. When I read my list to Trish, Mum and Nan, Mum and Trish got all choked up then upset. I'm starting to wonder why I'm not upset. I suppose I should be more upset? Perhaps I'm numb? In denial? ~But I don't really think so. I guess maybe because I have been through worse, or maybe it's because Hope does make me so happy, yes I do worry for her...Sometimes I wonder what the future holds for Hope, but also for us as a family. But then I quickly put away those thoughts and focus on today. I want to enjoy her. I don't want to be missing out on all that is good by worrying about a future that may not be so bright. We'll cross those bridges if and when we need to.
Hope is on 3mls of vigabatrin twice daily now. It's making her more sleepy than normal, but the seizures are increasing. 60 today :O( I wonder if we'll ever get to have a seizure free day. I hope so! I suppose one of the main things I've noticed since she's been on the meds is that she's alert again. Though she is far from where a 'normal' 5 month old baby might be (playing with toys), she does seem to like her new toy; A Lamaze Noisy dog that is more affectionately known as 'Plonky puppy Waaa'( Max got Hope to name it, she said WAAA') . I like it too- It smells delicious. Hope smiles and does her funny laugh at it when you make it make noises. She really looks at it too. Not many things get her attention.
Hope is just having a 4oz bottle of infatrini with Papa. It's the first bottle she's had all day and I'm quite glad of the break. But it's nice that now she has finally made the 0.4th centile we can stop giving her top-ups. I'm pretty convinced that the infatrini high cal made no difference to her weight gain anyway, all it meant is she fed less from me. So it's 11pm and I am thinking early night tonight, though I may end up paying for it. Generally we stay up till midnight with her, then she sleeps for 4 hours. Occasionally, especially since we started the meds, she'll sleep longer. It's funny what you get used to. 4 hours would never have been enough in the past.
Perhaps I am supermum-lol Jordan seems to think so. And Max thinks H is superbaby- he's right there!