May Update.

Well clinic visits are always fun. I say this totally in a sarcastic manner. Last clinic visit last week wasnt too bad though. Except again with the high BP's and the crazy old fashioned way of finding one and the use of a doppler on little feet. The Dr says Cystinosis patients dont usually suffer from high BP anyway so I dont get the point of all the big whoo haa about it that takes like 30 minutes but never mind. Girls where happy after being given a sticker. Surprising news that E now weighs 30lb!! Seems to have come on from no where, such a hugh improvement and an awesome milestone. She's also grown a few cms. PM the same, although not so heavy but gained weight and a bit of height. E's Cystine level was pretty high so an increase there in her medicine, now on 200mg every 6hrs. PM's was SUPER low, like the lowest its ever been we where so amazed. It was like she didnt have Cystinosis for a few seconds. Everything else came back pretty good as well. PM's x ray showed no signs of rickets in her legs/feet and they'll be checking her hips soon, mainly due to the way she walks/trips over a lot. Rickets is very common in children with Cystinosis before anyone comments about me letting them out in the sun or whatever, do some research! E's managing fab with her insoles, she has a review in June on them. Both doing well with their glasses but its a struggle keeping them on some days and PM has a habit of hiding hers, in pretty good places for an almost 2 year old. Took us 3 days to find them last week. They also started E on a new medicine, bringing her daily total to a whopping 10! Im sure over the years we'll beat that record at some point. PM still on 8, still a lot but normal to us. PM's going back to eye clinic soon, she seems to be having problems with her left eye so it needs reviewing. She turns 2 in 15 days!! Cant believe how fast that has flown by, she doesnt look big enough to be 2. Few more months and she'll be at nursery with her big sister :) PM's speech/Makaton is coming along nicely, she's trying to communicate more and picks it up so fast! She's a clever little monster. I never give these blogs good titles, never know what to put. So sorry its a bit lame. Not many people read it anyway so not too bothered lol. But I think thats everything at the moment. All is well that ends well as they say!