About Me

My photo
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.....

Wednesday, 1 January 2014

The start of 2014...

Happy new year!!

Last night we had auntie Sarah and uncle Kevin round to see out the year, we played some games, set off party poppers and sang that same song like last year where you link arms. Weird! We also let off some Chinese lantern again, daddy got his caught in next doors tree and we all thought it was going to catch fire... Ahh!!! But it didn't, it did take flight. After a very active late night I was still up at 8 this morning, but stayed in bed watching tom and jerry... My favourite. 

So since I last updated what's happened.... I had a brilliant 3rd birthday. Went to auntie Vicky and uncle Peters for a few days, came back and had the best party ever. All my friends came in the morning and then the family came for a BBQ in the afternoon. Then a few weeks after Jessie woo had her 1st birthday party at grandad and nana lotts house. All good fun. September I started pre school. First two days were great, i really had fun playing with all the new toys and other children. Then it was the weekend. Come Monday I just wanted to stay at home with mummy, I didn't want her to leave me. But she did! Boy did I let them know I wasn't happy about that. I screamed and kicked and banged the doors watching mummy walk away... Why? But you know what, I soon got over it and enjoyed the rest of my time there. Until the next day! By Thursday I realised just how much fun I had while I wasn't under the watchful eye of the mumsie! Those three hours seemed to fly by and before I knew it, mummy was back and it was time to go home. But I wanted to stay... And from then on I didn't look back. I have made some fantastic friends and learnt lots of new skills. Think mummy secretly enjoys the few hours peace....Well that's when she's not looking after the Jessie monster.  

                                                My first school photo  

Happy Halloween from us

Christmas was the best yet. Throughout the whole of December, Santa sent one of his elves to keep an eye on me to make sure I'm behaving myself and every night he would fly back to the North Pole to let Santa know what I had been up to in the day. Then every morning before I woke up he would fly back and hide in a different place for me to try and find him. And there he would stay until I was back asleep again. Eventually Christmas Eve came and I finally gave in to sleep at 9 o'clock and when I woke up it was clear to me that Elvis -the elf, had told Santa exactly how good I had been. Walking into the front room I was hit with lots of presents under our tree. I made short work of unwrapping them all and then we sat and went through each and every present. Was great. We then went off to meet grandad, auntie Sarah and uncle Kevin at nannys home to give her her presents then back to grandad and nana lotts for Christmas dinner, dancing, singing, fun and games and even more presents for everyone. Boxing Day was spent at grandad Shiloh and grandmas with uncle Paul, auntie Vicki and jake, jack and rosa and nanny and pops. We had more presents, another Christmas dinner and played more games. What a fantastic couple of days. 

                                  Mince pie, chocolate fingers and glass of milk 
                                    for Santa and some carrots for the reindeer


                                  Merry Christmas from nanny and I x


  Since I came out of hospital in March generally I've been well. The odd cough and cold but nothing too bad. However, for the last month I've had this nasty cough. It's really horrible, makes me cough up gunk which I have never done before, it's not nice. Once I start coughing I find it hard to stop, it makes my throat really sore too. Good news is the two cough swabs I've had done have come back clear so hopefully it's just viral but taking a lot longer to clear. I had one antibiotic but it didn't make any difference, in fact it seemed to get worse. So the docs changed it and I'm now halfway through a course of ciprofloxacin. I still have this awful sounding cough and my throat still hurts but I'm definitely not coughing as much. As I type that, I actually have a coughing fit!! Ironic!

Anyway I have clinic in two days time, it's a joint clinic with my local consultant that I see every two months and my wonderful team from The Royal Brompton. So it's two consultants, two or three physiotherapists and the dietician, along with the usual height/weight checks etc. So fingers crossed they will come up with a plan to help me clear this awful cough once and for all, as it's really starting to bug me now!! 

The other hurdle I hope to get over on Friday is my weight. At Novembers clinic I had only gained 0.1 of a kilo and the doc wasn't happy. So mumsie and dada have been doing their best to try and fatten me up, but I really don't seem to have much of an appetite. If I'm honest, I'd rather do anything else than eat. But they have their ways of bribing me :) So in November I was 15.9kg, hoping I've gained otherwise the doc did mention something about supplement drinks I think, but mumsie would rather me eat than have them. We'll see...

Also this last few weeks my lovely Levi, the cat, has not been too well. I have taken him to the doctors a few times, held his paw when they shaved his hair to take blood cuddled him through all the injections but hopefully he is on the mend. I have to take him back in two weeks for another checkup. He's going to be 12 years old in a couple of months so has to be better for his birthday.

Well that's about all for now so over and out from me...

Ethan xx

                                        This is me and my cousin Jake
                                   Me and the Jessie woo just chilling       


                                  My bestest friend Nik, we found a

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