hi,my dd was diagnosed at 6 weeks.she is now a healthy little 3 year old madam!!
tips for the creon...when dd was first put on her meds,we used t get a 5 ml spoon with a little water and put the creon on that and tip into her mouth.that worked until she was 12 weeks when we could put her on baby rice and we mixed it into that.
we were told by the dietician not to put it on pureed apple when she was under 12weeks,as because she needed it everytime she had a feed,the apple would fill her too much and so she wouldnt ahve as much milk feed as she needed (i was breastfeeding her) and so she would end up having more feeds.
it does get easier as they get older,as you can mix it with things like yoghurt and like my dd now,she will sometimes let us put it straight into her mouth and washes it down witha drink.but do be preprared for teh stubborn stage,where you cant get them to open their mouth or they spit it back out at you!!
i posted on the cf website when we first found out about dd,and yes you do get alot of nice ones on there,but there are also alot that live in the land of doom and gloom.
another of my tips wuld be as soon as yor lo starts getting snuffly,get tehm straight onto their back up (dd's back up is co-amoxiclav) and make sure you always have a bottle in at home so you can make it up yourself when you need it (if your chemist isnt happy to give it to you to make it up yourself,get your physio to go and have a word,saves you having to wait if the chemist is closed on a weekend or something)
also,we were always worried we were panicking over little things,but dont ever think your wasting a doctors time or a nurses time if you are worried about anything.we have often rang the hospital over dd being sniffly,or not feeding well.
anither thing,when you take your lo to the doctors for anything,make sure you are taken to another room.if your doctors surgery say no,get the physio to have a word.the risk of infection is too high for you to be sat in teh waiting room with lots of bugs and germs flying about.it was our cf nurse taht told us about that and we told the receptionist who told me stand outside with dd in the rain!!our physio went in and explained to tehm,and from then on we go straight through into the health visitors room.
medicines and physio are easy to do when they are babies,its when they get to being a toddler and refuse to keep still!!so be prepared for that aswell!!it turns into a battle of wills at times!!!
like i say our dd is now 3,shes relatively healthy (apart from having asthma and hayfever at the mo!) but cf side,shes doing really well.
when your lo is old enough,get a trampoline,the jumping is great for shifting mucous and a great way of tehm having physio and thinking its fun!!we also got a gym ball and dd loves being rolled on her tummy on it,which is great again for getting her upside down (you can do that from the being babies on the gym ball)
sorry to have gone on abit!!we didnt know anything about cf when dd was diagnosed,and its amazing how much you learn in such a short time.you'll soon know when your lo isnt well,you learn what different noises are normal for them (chest noises etc)
if i can help at all,or if you fancy a chat,my email is sjpfunkychicken @ fsmail . net (just stick it all together!!