Today I have taken to recording the times of all his fits and he's had 7 since 9am this morning. I called the hospital and spoke to his consultant. If they get much more frequent we shall need to go in for another loading dose of phenobarb. He had several together this morning but they are about every 1-2 hours now. If they get to one an hour or more we will need to go in. His consultant has prescribed him an additional epilepsy medicine called epilim. I don't know much about it but he will start taking it today and it can take a while for it to start having an affect.
It's a rubbish time, just waiting for things to get bad enough to go to hopsital. And of course, a hopsital stay is not something we want, because it means we'll all be apart again and it will be a bit difficult sorting the dogs out. It's hard to make any plans knowing at any point we'll have to change them.
He's quite a wriggly baby when he's not sleeping and it's starting to make me think more about his future. As he's getting bigger he's getting more uncomfortable to hold when he wriggles. It's hard to know which of his movements are typical baby movements that he will grow out of and which are more associated with him in specific. It all seems very daunting thinking about handling him as he grows considering the strength he can have now. It's not helping that he's been relatively grumpy the last couple of days so we're not getting many william smiles.
He's still coughing a lot with his feeds. We're still unsure what the best thing is to do. He's been having his medicine orally but often coughs on it and yesterday threw it back up. He'll now be having medicine three times a day so we're thinking we'll resort back to the tube for that to give it a better chance of staying down. This will of course mean the tube is going nowhere fast.
We'd quite like something a bit more positive to happen soon and cheer us all up!
Some recent phone photos:



Praying for you all loads. Am about to text you xxxxxx
ReplyDeleteKeep persevering. It's hard being a new mum regardless of how 'well' the baby is. You are doing a brilliant job, hold on in there.In a way I guess it's like how God must feel like sometimes, when we operate in our own strength it is harder for him to 'reach us' but he doesnt want to control us just to love us like you do with William. I will be praying that you feel uplifted, remember to use those people supporting you - practically and in prayer. Hugs xx
ReplyDeleteHe looks so chilled in that trolley! "Don't mind me, I'm just shoppin with me mam!"
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