Girls aren't doing too bad, they have recently been quite poorly though with flu & E had UTI infection on top of that which made her worse, her temp reached 41.3 at one time. They both spent a few days in hospital, some of them at the same time! 1st time they have been together like that, I doubt it will be the last either. I made the mistake of taking E to A&E when I should have just gone straight to renal ward, I got there at 10am and they didn't get in touch with her specialist until gone 5pm so she didn't get on a ward until just after 8pm! Then the next day PM wouldn't stop being sick so she ended up staying in to, 16 times in the space of 4ish hours she vomited! They where eventually placed in an Isolation room together for a few days.
At their last renal appt both girls had grown & gained weight so was very pleased with that. E's Cystine level has alot higher than normal though so she now takes 2 capsules of Cystagon every 6hrs. She now on 10 meds to and PM on 5. PM is catching up far too fast for my liking! She's very dehydrated at the moment to and I think she's lost a lot of weight since being sick, poor baby.
Community Nurse is due this week to change E's G tube for a smaller one, so not looking forward to that. We missed PM's appt with surgeon for hers but Dr's said they will try & sort something out as we where in hospital with them both. She will probs also have the fundo like E has so she cant vomit.
Poor girls are all covered in bruises from all the blood tests they had to have while in hospital, E's foot very bruised as they put the cannula in there as they didn't have much luck with her hands :(
Finally had our central heating fitted now though so glad we're able to keep our Princesses warm. Their rooms where freezing, we use to have to put PM in bed with us in the early hours just to keep her warm.
There has been a new page started on FB to get everyone together who has Cystinosis or knows someone who does and its a fab little group! Cant believe there is over 200 members, glad to have more people who understand exactly what we deal with every single day. Its really nice and everyone so supportive & lovely. I'm sure when the girls are much older (and if FB still around lol)they will find it very useful and be able to get more support and make new friends etc.
Dr's recently mentioned Growth Hormones for E if her height starts to level off but so far she is still growing so very pleased with that. She even ate some spaghetti bolognaise the other week, off my plate! Was very shocked but it was lovely and bought a few tears to my eyes haahaa.
Christmas was very good, was nice to be with family and the girls go so spoiled we had to have another xmas on Boxing Day just to get all the presents opened lol. Both girls where very well then as well so made it even better.
The girls where on the front page of the Yorkshire Evening Post to on Jan 4th 2011 due to us not having any heating since moving house, was so shocked to see they had made it front page though. Then a follow up story was done last week and a few days later a lovely woman had wrote in about the story, was nice to know there are other people out there who care to.
And here's me rambling again! Main things are the girls are now getting better after their visit/stay to the hospital so we're really pleased with that. PM is taking longer but she is still only very small bless her.
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