Thursday, 5 February 2015

No News is Good News

Posted by Mark

Hi everyone,

Just a quick post to let you all know that there is nothing much to report on the CF front which, as always, is good news. Sammy does currently have a bit of a cold so he's on extra physio and antibiotics but it seems to be clearing up so we're not too worried. We took a cough swab when he first came down with it and should get the results tomorrow when we go in for our regular clinic visit at the hospital.

We are struggling a bit trying to change his physio routine. Up until now we have mainly been using 'patting' to clear the gunk in his lungs, but as he grows that becomes less effective so we have been trying to use a PEP mask which uses 'Positive Expiratory Pressure' to help do the job. The trouble is he doesn't really like it although Juliette has had some success bribing him with chocolate buttons!

Generally, blowing seems to be recommended as good physio, so here he is in clinic almost 6 months ago blowing bubbles:

And here about 5 months ago playing with dandelions:

Jumping is also good so we got a little trampoline for him and you can tell in this picture how much he enjoys it!

So generally things are going ok. Both boys are growing up fast and we recently got a bunk bed so Sammy will be moving out of our room and in with Joseph which I think they are both quite excited about. 

Juliette is becoming involved in sharing our experiences with the Cystic Fibrosis Trust who are redesigning the information they send to newly diagnosed families which is a very interesting project. I am busy trying to get fit for the London Marathon in April. I'll be setting up a JustGiving page very soon to raise what I can for the Cystic Fibrosis Trust.

I'll leave you with a couple of recent pictures showing just how big and grown-up Sammy is looking (especially with his new haircut!)

Thanks for reading and we'll let you know how clinic goes tomorrow. Fingers crossed for a good one!

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