We are Home!

After a 6 week stay in hospital, we are finally home with our bubba girl! The phenobarb is working, she is barley having noticable seizures now, maybe 4 a day, just staring ones...sometimes even i cannot tell if she is doing it or not! I didn't notice any yesterday at all!

We are increasing the Epilim, and decreasing the tegretol. Plan is to eventually get her down to one medication instead of 5, so talking of stopping the phenobabr again at some point. The phenobarb is good, but it delays learning and literally shuts the brain off, so she cannot reach her full potential if on it long term.....:/

MRI and LP confirmed for the 10th december, blood levels on tuesday, Rpt EEg in january, And repeat hearing and eye tests in feb. Video swallow prob in next two weeks, and for a PH probe prior to a gastrostomy at some stage.

Still floating around in unknown land right now, it is obvious that she will need full time care, so not sure what to do about work at the moment. Hoping to still work 2 days a week and get a carer or something for when mum cannot look after her.

Other than that she is the happiest i've ever seen her, laughing and babbling away at her sisters, probably telling them all about her hospital adventures...wish i knew what she was saying..lol

Still getting used to her meds and feed regime, it is not as easy on the other side. I just want a pole to hang the pump on, or a longer line, or another nurse to hold this while i do that...lol bit different on the parent side, there are challenges to face in the home environment that are not an issue in hospital!

She has spiked a temp this afternoon :( and is very gurgly, not clearing heer secrtetions well, so we are on lilly watch now, Her Paediatrician Dr Smiley ( yes that is his name and nature believe it or not) isn't too concerned at the minute, but i have to call him tomorrow to let him know if she is any worse..prob a course of abs, hopefully will fix it..don't fancy a trip back to the hosp so soon!

Well, off to get festive and hang up the tree, hopefully missy behaves so i can do that and maybe she can stare at the pretty tree instead...lol

Special thanks to all those who have been great supports...you know who you all are!!!