#cfmummy

[livvyq-blog1]

A quick catch up...

I have been very MIA lately!! Life has taken a lot more time!! The football fundraiser in August was a great success and our grand total came in at $5,049 raised for CFV!! We are stoked with the result!! Spencer has been pretty constantly Ill since September (nothing too bad) just lots of colds, coughs and conjunctivitis 😩 We also celebrated Spencer's first birthday and enjoyed a family holiday in the beautiful Queensland sunshine. This week has marked one whole year of our CF journey!! I am so thankful and grateful that we have so far been lucky enough to be at the good end of a bad situation. Don't get me wrong there have been some challenging days and a lot of worry but Spencer is extremely healthy compared to other CF sufferers and I pray everyday that it stays this way for him!!

[livvyq-blog1]

Lesson of the day: if you don’t ask you don’t receive!! Signed footy boots by an NRL legend!!

My brother is currently organising a local footy match to raise much needed funds for CFV - to help hubby is sourcing auction items; today we found ourselves in an incredible situation!! Hubby was able to talk to a few of his favourite NRL players and this was the result!! I am still blown away at how intently they listened as Mat spoke about Spencer and CF!! I feel that we hit the jackpot today - we spread more awareness and have something to help raise more money!!

[livvyq-blog1]

Confusion...

29/4 I have never been so confused in all my life… I received a phone call from the genetic councillor today - as they have finally received Spencer’s blood results back from New Zealand. We already know Spencer carries the DF508 mutation but we are unsure of the other one. And the results have not been much help as the results show an uncertain significance I am still quite confused by this but from my understanding of a brief conversation it basically means that Spencer may or may not have CF. I guess I should be happy this could put my little guy in the clear to live a healthy life and of course if this is the case i will be happy but with it come so many questions… like why has his salt count been high twice, why does he cough a lot, why was there fat found in his poos, and if a mutation has been found whether its significant or not and it is not CF then what is it, what does it mean and will it effect Spencer in anyway? I feel so conflicted on how to feel… Luckily for us we have an appointment with our CF team on Tuesday and hopefully they will have some answers for us.