These girls are my everything!
I have good days & bad. Some days I don't let it bother me & just get on with it & others I can hardly function as my head is swarming with all sorts.
P's doing well with her Nasal tube though, seems to be feeding much better to since we changed the teats to a size 2. She's not due back to clinic for 3 weeks :) E went yesterday for her clinic appointment and they are really pleased as she is growing & gaining weight. She now weighs 20lb 1oz and is 76.2cm! Since her operation she has been eating more, she was 2 Weetabix in the morning and normally always eats it all. Then a stage 2 jar for lunch & dinner and sometimes a few yogurts or ice cream. I'm really proud of them both.
I am excited though that there could be a meeting soon (in 2011) in the UK for people to meet up with other people who have Cystinosis or their children do. It will be fab & I know it will benefit us loads!
We've been doing well recently with the meds, finally got ourselves into a better routine with the eye drops & Cystagon. Both girls having it every 6 hours now like they should and E's drops every 2 hours. E now has 5mls of Cystagon and we've to put it up an extra ml every week until she is on 10ml which is basically 1 tablet of Cystagon (50mg) every 6 hours. P is on 2mls, no plans to raise hers yet as she still a sicky baby, even on the Ranitidine. So thankful P doesn't need the eye drops yet to, doing 1 is bad enough!
E's been having her over-granulation sorted. Community Nurse came the other day and put some Silver Nitrate on it. It seems to have helped a bit but there's still a bit left so we're hoping the cream will keep helping rather than having to use the Silver Nitrate again. She's also been started on Sodium Bicarb, 5.6mls twice a day. Cant remember if I wrote it down last time I blogged.
Some days I feel so depressed but then I just think about what my 2 Princesses must be going through and then I realise I have no right to feel that way really, its them going through the constant change in medicines, the blood tests, the tubes, the sickness etc etc.
Luckily E hasn't been sick since her Fundo operation so that's a big improvement for her & us.
I know not many people follow this blog & I have no idea how many actually read it but if you could just spare a £1 (maybe more if you're feeling grateful & generous lol) and donate it to the Cystinosis Foundation (UK), Me & my daughters would be eternally grateful. They only have funding through donations and without donations they cannot fund research into new drugs and HOPEFULLY one day soon a cure ...
I don't want this horrible disease to claim anymore lives. I hate IT with a passion. Wish I could take it from my girls - they don't deserve all this. They haven't even had chance to experience life. No one deserves it in fact ... horrible, nasty thing :'(
R.I.P Preston Towriss & everyone else who has lost their life to Cystinosis. You are always in my thoughts as are your family ...
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