Diddy update #3

We saw our Dr this morning. He is a respiratory specialist and is quite baffled by or little Didabell. He told me that he would leave her on the cpap for about a year and then take out her tonsils and adenoids. He hopes that removing them may improve her condition but doesn't hold high hopes. He thinks this may just be something she has to live with. He also briefly mentioned that having the cpap on her face may affect the growth rates of certain parts of her face in the same way that orthodontic head gear affects the shape of a face. She would be more susceptible to this happening because she is a baby and is still growing.
As soon as I had a spare moment I googled this and found, to my horror, that it is called SMASHED FACE SYNDROME!!!!! I burst into tears and was upset all afternoon. Whoever named that syndrome deserves to have their own face smashed!!! no, I don't mean that (ok maybe I do just a little). I have been putting Diddys mask on extra loose this afternoon and the alarm keeps going off because there is too much leakage. Her leak rate went from 4ltrs a minute to 27ltrs a minute!! but I have managed to get over myself. Diddy is a gorgeous little girl and will always be gorgeous no matter what. I am trying to let it go and not worry about it.
I have made friends with the little girl in my room. She has hardly whinged all day. I think its because she had isabelle and I to talk to. poor little thing is lonely, just wants some company.
All the messages, texts and phone calls have made Isabelle and I feel so loved!! it has really helped me, knowing I have so many wonderful friends and family. We had some visitors today, which helped the time pass.
You will be pleased to know that I managed to have a shower tonight without anyone barging in! Twice today I have been walked in on while on the loo so I was extremely pleased to make it through my shower without anyone copping an eyeful. I had barricaded the outside of the door with linen bins and chairs to try to deter people from entering and I had pushed chairs up against the inside of the door. Who on earth designs a toilet door that can't be locked?!? CRAZY!!!
Oh wow this blog post is all over the place. I just read it back to myself and it doesn't have the usual flow I like my writing to have. I'm not going to fix it though. I am so emotionally drained I think my thoughts are all over the place. I had better get some rest now.
Thanks again everyone for all your support.
xx
Oh I put a picture in of Diddy playing with a balloon Melissa bought her (one of the many pressies she received today). When she is awake she is her happy normal self and has been having a ball sitting on her mat playing toys. She is still my little Diddybell.
Oh and yes we are still planning to go on our trip in a few weeks time. At this stage the Drs have said she is fine to go. we just need to buy a special attachment to connect her machine to the battery in our caravan.
ok I am really going to sleep now!!!
xx