Hi everybody, missed you guys
Just getting my head round being back on here, although you lot are so supportive, I couldn't get my head round being here? Weird huh. I think it was just that I wanted to go back to how things were, with my healthy beautiful baby and helping you guys. And every time I got here the reality hit me, and reminded me of the grief I was feeling for the 'loss' of my perfect healthy bubba ... does that make sense? I dunno
It was like anything I wasn't doing before like going on FB, and 'non baby' stuff was much easier to deal with. Anyway, I am here and feeling ok about it. I miss you guys!
Lily has been back to GOSH and had more bloods taken and a poop sample. The poop should determined which enzymes she is lacking (CF children usually don't produce enough enzymes in their pancreas to properly digest their food, and fail to thrive without supplemented enzymes) The bloods will further look into her genes, they have located only 1 CF gene, and she must have 2 to be affected by the illness (which she defo is with the other results) so the other gene must be a rare mutation, and it could take up to 6 weeks of specialized testing for them to locate this second gene. Once that is done they will have a slightly better idea of how severe her illness is likely to be, although it is only a guess, she could still prove them completely wrong. We have started some gentle physio, we bounce her on a gym ball and 'fly' her through the air. All of which she loves, its good fun for her as will be most of the stuff we will do. She is a little congested, but nothing major. We learn more intense physio next week. She is not on any meds yet, they will wait till she is seen by her doctor in a couple of weeks at GOSH as she is currently doing so well without. FX this is the way its gonna stay! Her poops are now quite foul, so were pretty sure she will need the enzymes but since she is putting on weight, there is no immediate rush medically. I personally hope we can start soon as she gets such a bellie ache, I think its making her sore as she cannot digest it properly
we can continue to breastfeed which we are doing.
Anyhow, that's us. I haven't the time right now to read back, I will do it later with a cuppa. Just wanted to show my face first, and get the news update out the way
x