So my first holiday :) centre parks was great. I loved having daddy around all the time, wish he didn't have to go back to work! I also loved the lack of routine :) the meds and nebs were still there but the rest of the time was all about fun. We also went swimming more or less every day, my favourite! Mummy and daddy (i think) enjoyed it and had a nice relaxing(!) week away. Soon we was back to reality...
Daddy went back to work :( and i was still faced with this horrible pseudomonas on my tongue. Iv well and truly baffed all the doctors as they have never seen anything like this before. There was talk, before we went away, of changing my nebuliser to a different medication but that didn't happen until April. Daddy is convinced its the colomycin that's causing it. Who knows, the docs surly don't. So April i started Tobi in my neb. Things are looking better. My tongue actually looks slightly normal. When i have Tobi i can only have it for one month, then a month off then a month back and so on. So for May, the month off, the docs said to go back to colomycin, to make sure we are keeping it off my lungs....low and behold the black tongue makes its return! Daddy was right, it has to be something to do with the colomycin. They made the decision that the rest of may i would be nebuliser free :) yay! And then back on tobi for June. Thats where we are at the moment...
Swimming is still great, mummy and Lana are learning lots :) we are now in to the toddler class. I'm the baby of the group but i dont mind. I'm nearly walking now :) i have no problem if i hold on to mummy or daddy, but still a bit wobbly. We moved house recently, i love it. have a nice big living room to crawl around in and a big kitchen, i love running up and down in my walker, chasing the cat :) and we have a lovely garden too. At first i didn't like the feel of grass on my tootsies but I'm cool with it now :) bring on the summer!
I have a clinic appointment next Friday (20th May) so fingers crossed for me, who knows maybe they will chop my tongue off...
Love Little E xx
About Me
- Ethan (and mummy and daddy)
- Well I entered the world on 25th June 2010, the day after mummys birthday. That picture up there was one of the first daddy took of me. We were all fine and was home the next day. As I am now at 9weeks, I love being in my swing, on my play gym or in the bath kicking my legs around (ready for daddy to take me footie) I'm quite the dribbler!! I do love cuddles though :) I do have my screaming fits, excersising the lungs, I get passed from mummy to daddy then back to mummy till eventually I fall asleep, bouncing me does wonders. So I'm pretty much the same as every other 9week old on the block, only difference is I have Cystic Fibrosis. I will get mummy to explain it as best she can for you and will try to keep you as up to date with everything as we can. So here is my story.....
