Friday, 27 September 2013

Camp it up. The louder the better!

Posted by Juliette
So I thought I would blog about the fun we all have when we give Sammy his physiotherapy. It might sound a bit odd to you that it is fun as perhaps you will see it as one of a number of chores we have to do to help Sammy stay one step ahead of his CF but if we saw it like that then for one, we would be miserable and two, Sammy could grow to see it like that.
 Therefore as Sammy will/may need physio for the rest of his life we choose to make it fun and in this post I want to explain why and how we give Sammy his physio and then how we camp it up!*
Everybody has mucus in their lungs, it's there to help protect the airways. The problem CF causes is that the mucus is much thicker and it therefore doesn't move around in the same way making it difficult to shift and cough up. An added danger is that it is a warm, moist, sticky environment, so bacteria love it, therefore any one with CF has an increased risk of developing chest infections.
So what? you may think. Everyone gets chest infections and they just get on with it, don’t they? But this this the depressing thing; with CF, each chest infection has the potential to kill off some lung tissue. Once dead this tissue will never recover resulting in reduced lung capacity and function. Every infection has the potential to cause this irreversible damage and low lung capacity and function will either effect quality of life or will reach a state where the amount of functioning lung is not even compatible with life itself. Yes you know what I'm saying. I don't want to actually put it into hard text because I don't want to read it back. 
So I guess if you didn't already understand why I'm obsessive about trying to keep Sammy free from colds and infections, you do now.

Right, sorry if I brought you right down; let me pick you back up again. We do two main things to help Sammy clear the thick mucus from his lungs and stay free from infections. We give him an antibiotic every day to help prevent bacteria from growing in his lungs and we give him physiotherapy. The physio is normally given twice a day for five minute at a time. We increase the amount we give if he has any sign of an infection. Currently he has a cold (Panic! Panic!... No he's doing fine) so we do two lots of 10 minutes until the infection has gone. We can do physio up to four times a day if necessary. The physio helps to move and clear the mucus and when he has a cold there is more mucus to clear, hence more physio. 

There are a number of different ways to do physiotherapy for someone with CF but currently we do percussion, also known as patting. Traditionally this is done using cupped hands but on a baby this is quite tricky so we use a small rubber cup (which is actually a paediatric oxygen mask) to pat Sammy firmly on his chest and back. We have discovered that Sammy loves it if we do it to music and it is the choice of music which makes it so much fun. Mark has made a playlist of largely fast tempo, upbeat tracks on his phone and we sing along and jump about whilst patting. I only hope Mark's terrible song choices don't rub off on Sammy as he develops a musical taste of his own. 
 Mark’s favourite songs for patting include:
Waterloo - Abba
Laura - Scissor Sisters
9 to 5 - Dolly Parton
Brown Girl in the Ring/By the Rivers of Babylon - Boney M
Rocket Man - Elton John. 
My new guilty favourites chosen from Mark's camper than camp playlist: 
Call Me Maybe - Carly Rae Jepsen,
Price Tag - Jessie J
The Clapping Song - Shirley Ellis. 

Have any of these song choices put a smile on your face? If so you can see why Sammy loves it, and his face really does light up when the music comes on. So which one is your ear worm for today? 

*You may notice that I couldn’t decide between writing that Sammy will need physio for the rest of his life, or that he may need it. As things stand right now he will. But we are hopeful that with enough money and research, scientists will be able to find a cure, or at least effective treatment that will allow a full and rich life expectancy and remove the need for physiotherapy. Such a treatment is already available for those people with the rare G551D mutation, so something to help people like Sammy is not out of reach. In case you haven’t spotted it, this is just my cheeky little plug to ask you to sponsor Mark who is running half a marathon for the Cystic Fibrosis Trust as they fund the research. – As always, our sincere thanks to those who have already donated.

Tuesday, 10 September 2013

U'ntaneh Tokef

Posted by Mark

To our non-Jewish readers, the title of this post probably reads like a random hitting of the keyboard. Jewish readers however, may well recognise the name of one of the most poignant and powerful parts of the Rosh Hashana (New Year) and Yom Kippur (The Day of Atonement) synagogue service. It is a beautiful piyyut (Liturgical poem) and has always managed to move me but I think even more so this year following Samuel's diagnosis. In particular, the central part which can be translated as follows:

On Rosh Hashana it is written and on Yom Kippur it is sealed: How many shall pass away and how many shall be born; who shall live and who shall die - who at the full length of his days and who before; who by fire and who by the sword. Who by wild beast and who by hunger ... who will enjoy tranquillity and who will suffer; who will become poor and who will become rich; who will fall and who will rise.

It is pretty powerful stuff (much more so in the original Hebrew) and whether or not you believe that such things are somehow 'written' and whether or not you believe the piyyut's hopeful exhortation that in spite of this predestination:

Repentance, Prayer and Charity avert the severe decree

It is nonetheless a deeply moving reminder that so much of the future is beyond our control. I always look around me at this point in the service, trying to really grasp and acknowledge that although we are here today, there is no way of knowing who will be missing when the words are repeated in services next year. Those who appear ill and frail may well be amongst us while those who seem the strongest and seem to have years ahead of them may no longer be here. Each year there are a few new faces from new people who have joined the synagogue, but there are also faces that should be there but just aren't any more.

This year I was also particularly aware of the parents sitting with their children who, when Juliette and I first joined the synagogue, were little kids and now are grown up. I thought of Joseph and Sammy and how much I hope that in many years to come they will sit with us, grown taller and stronger than us, and wonder how it was that they grew up so quickly.

But at the same time I know that this picture may not come true. Juliette and I both spoke about how hard it will be if one day we will have to go to Rosh Hashanna or Yom Kippur services and Samuel is no longer with us. But I suppose one of the points of the U'ntaneh Tokef piyyut is to remind us that we just do not know what tomorrow holds for any of us and we should be mindful of this fact. Yes it is true that Samuel has a life-shortening condition but there are some people with CF who have lived well into old age, and who is to say he won't be one of those? And who knows what advances will be made in research and treatment next year and the year after that and the year after that? And even without CF, how do we know who will die at the full length of his days and who before?

Here is hoping that we will all be inscribed in the book of life, blessing and peace for the coming year.

P.S. We have decided that Samuel should become a 'Baal Tokea'. One of the highlights of this time of year is the blowing of the shofar  (Ram's horn) during services. It needs a lot of puff to blow it well and a good Baal Tokea (person who blows the shofar) needs to develop good lung capacity to do it well so practising the shofar should be good for Sammy's lungs - although what bacteria could be lurking in a ram's horn probably doesn't bear thinking about!

I just saw this awesome video on of a baal tokea blowing a shofar in all sorts of crazy places across Israel! Enjoy, and a Happy New Year!