Yesterday while speaking with Starship we realised that Maddies next Starship appointment - which is a clinic here in Christchurch - is while she is away on school camp in 2 weeks. We looked at getting her home from camp early and decided that Maddie has missed so many fun activities that this was not an option. Starship will fly us up in November as we also are seeing a trend in Maddies creatinine level rising - just a few points each week but its not settling back down, yesterday it was up to 99 up from 93 we need to see if we are seeing consistent trend upwards. ( head in the sand here dont want to even think of the implications if it is trending upwards) Last night Maddie wanted a game of monopoly with Adam & I as Tomas and Courtney were back in their house and Georgia was away at friends it was just us -thus we sat in front of the fire and played - Maddie was banker we had many laughs. Halfway through the game Maddie tells us her top is wet that her Mickey Button hole is leaking (Maddie has had her mickey button ( feeding tube) removed) and sure enough clear fluid was running out the hole down her tummy we arent talking just a little bit so between laughing - what else do you do!! - we had to cover it in gauze and tape it up so this morning it will be a call to hopsital to get this sorted as if fluid can come out bugs can get in - not what we want with an immune compromised child right now! Today the results are in from her scan yesterday........ hoping it shows limited scarring and what is there isnt such a big deal......
Posted on: Mon, 06 Oct 2014 18:33:01 +0000
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