Sammy at CF Clinic

Posted by Juliette

This is a very quick update because all I really wanted to do was add some photos.  We went to CF clinic last Friday.  We saw Sammy's team of professionals: a CF consultant, a CF nurse, a physiotherapist and a dietitian.  Everyone is very happy with him as he is doing great.  No-one is more happy than Mark and me as Sammy is meeting every milestone with enthusiasm and a cheeky grin, he's a joy.  These pictures were taking while we were waiting for Sammy's team to come and see him.  He is sitting in the consultants chair and playing with Daddy.

Wheeeeeeeeeee!

  

PA role: PA to upwardly mobile young man, includes other responsibilities

Posted by Juliette

In one of my old posts I mentioned the many new roles we have had to take on as parents now we have a child with Cystic Fibrosis. I thought I'd elaborate here. I would just like to add before I start that neither of us begrudge doing any of this. The way we see it, if we can do anything to make sure Sammy is as healthy as possible, we do it. As a result of this Sammy is indeed a healthy boy, in fact in some ways he's in better shape than us as he gets good food, daily vitamins, antibiotics and physio to prevent lung infections and as much sleep as he wants. We on the other hand don't eat so well, forget to take any vitamins and are sleep deprived because it turns out that Sammy doesn't want as much sleep as we'd like him to have, nor does he choose to take it in the middle of the night! 

So let's see what extra things we do in addition to being a parent. 

Physiotherapist: From the very beginning Mark and I were taught how to give physiotherapy. On a normal day we give 5 minutes twice a day. If Sammy is ill we do more physio each day. I think the amount of physio will increase when he's bigger as his lungs will be bigger. 

My P.A. role: We go to clinic every 3 weeks so I make sure there is either someone to take or collect Joseph from school or request an appointment where I can do the school runs and go to the clinic. Mark often takes Leave from work and comes too, but if not, I might organise that someone comes with me. 
 
As Sammy is on several medications, I make sure we always have stock of these, order more from the GP, collect prescriptions, take them to the pharmacy and collect the medicines. Sometimes I warn the pharmacist about a prescription so that they can order it in for him. I used to be all over the place with this and would be at the GPs every other week or more requesting something I hadn't realised was going to run out. Now I've sorted it so there is a monthly prescription. 
 
Sometimes there are questions for the CF team in between clinic dates. I email them and we often have to change medication, doses or physio. 

Nurse: I nearly forgot this one, it's become so normal that I forgot it's not a normal parent role. We prepare and give at least 19 doses of medicine a day. Most are given by oral syringe but the ones that are granules are given on a spoon with apple puree. 

 
Pharmacist: Once a week we take a bottle of powdered antibiotic and reconstitute it with the precise amount of cooled boiled water. 

Dietician: This is a new addition to our roles as we have started weaning Sammy. We have to work out the dose of an enzyme called creon for every meal Sammy eats. There is more about this in my last post. On the move

Well 5 extra roles! Of course I'm not saying we do any of these things anything like the professionals, just that we have taken on a little bit of all of these roles. As a result though Sammy is really thriving and does everything full pace. 

A special thank you has to go to our wonderful team of real CF professionals and our pharmacists for teaching us how to do a little bit of what they do. 

On the move

Posted by Juliette

It looks like Mark and I have fallen down that common bloggers' pitfall of not blogging when things in life are good. Well to rectify that, here is an update on how we are all getting on. 

Mark is very busy at work and busy helping and joining in with us when he is home; Joseph is loving school and we are loving that he's learning to read; I'm busy at home but finding my feet more and more in our CF and day to day routine - the CF specialist nurse even told me I was 'very organised'! I nearly fell off my seat and wished all my ex bosses had heard that one; and Sammy, well Sammy must be the busiest of us all. He's growing very well and is continuing to put on good weight and length which will help him fight infections in the future and is keeping him firmly on the centile chart. He is currently infection free having fought off a horrid cough last month. When Sammy gets ill (under the direction of our CF team) we immediately change his antibiotic from his regular Flucloxacillin to a rescue course of Co-Amoxiclav and increase his physio to 3 or 4 times a day and for double the duration. This time we did this for 3 weeks and it cleared up the cough beautifully and prevented the virus from developing into a bacterial infection in Sammy's lungs. Preventing bacterial infections is what it's all about! The BIG NEWS is that Sammy at 7 months is crawling, pulling himself up, cruising round the sofas on his feet and if you hold his hands he walks everywhere. HE'S MOBILE and he is also learning the word NO! He frequently crawls towards the radiators, wires, toilet or other hazards we'd rather he stayed clear of. He initially turned and laughed at Mark the first few times he shouted NO because he had never heard the tone Mark was using. We think/hope he's getting it now though. 

Amusingly Sammy managed to lock Mark in the shower one day whilst Joseph and I were out. While Mark was in the shower cubicle Sammy crawled over to take a look and put his little hands on the bottom of the shower door in such a way that Mark couldn't open it without crushing his fingers. Mark started shouting 'NO!', 'SAMMY, GO TO OVER THERE!' and anything he could think of to persuade him to move but Mark probably became more interesting and intriguing to Sammy at this point. Eventually Mark realised he had to wait for little Sammy to get bored and move away on his own. He finally did, at least the shower water remained hot the whole time. 

The other great new thing in Sammy's life is food. As with Joseph we are doing baby-led weaning. Sammy has taken to it well and likes a big variety of food, especially baked beans and Greek yoghurt (though not together - but maybe we'll give it a try). He is also very good at spooning food into his mouth. I, on the other hand, am perhaps not doing quite as well. You may remember from other posts that Sammy needs to take an enzyme called creon every time he eats something with fat in it. This means I have to work out how much creon to give for a food depending on it's fat content. For example 50ml of whole milk and 1/2 a Weetabix contains about 2g of fat so I give 3/4 of a scoop of creon granules. (2.5-3g fat = 1 scoop) Sound complicated? Try working out the fat content for tuna mayonnaise (tuna = 6.8g for half a tin, mayo = 10.2g for 15ml) now work out how much fat is in the 6 spoons Sammy actually ate and then work out the creon dose for that!! Don't worry you don't have to do this, Phew! And I'm getting the hang of it :-)
 
So to round up, we are all fine, busy but having lots of fun oh and there is food all over Sammy, me and the floor at all meal times but thank goodness for wipes and washing machines. 

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!*

WHY?
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. 

HOW?
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.
http://uk.virginmoneygiving.com/markleecarter

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!



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

All about the boy.

Posted by Juliette

I know I haven't posted anything about how Sammy is doing recently, so here is a proper update all about him. He is doing really well. We went to clinic on Friday and he continues to thrive and is now firmly back in the centile charts for both weight and height. I feel I can say height not length, as you normally would for a baby, as he spends so much time on his feet. I've even marked him on the wall where we measure Joseph!

Sammy is 4 1/2 months old now. This week he weighs 5.7kg / 12lbs 5oz and he measures 60cm. He is looking lovely and healthy and is pure happiness, smiling all the time.

In other news, Sammy is teething and seems desperate to start weaning, he watches us when we eat and grabs a plate or anything in arms reach. Sammy is babbling and blowing raspberries and his character is similar to Joseph's in as much as he is very interested in everything and is taking it all in. As I mentioned before he loves to stand and has started bouncing in our arms. He has learnt how to roll over and when on his tummy he sometimes tries to bring his legs up under his body so looks like he is attempting to crawl. He has pushed himself backwards off his mat before so basically it won't be long before he is on the move. Watch out Joseph, Sammy is coming! This is great for a child with CF as we want him to be an active and sporty child. Perhaps soon he can join his Daddy for a run ;-)

Talking of which, Mark's training is going well and he is clocking up the miles. He is also changing! Mark and I have been together for 16 years and until a couple of weeks ago I had never seen him wear a pair of shorts except for swimming. We have visited hot countries and Mark has done various sports but always in trousers. Now however, he wears shorts every single time he goes out running! He might blog soon about his running but if you haven't already read about why he has chosen to run a half marathon you can here and if you are able to make a donation too we would be very grateful.

THANK YOU SO MUCH TO ALL THE WONDERFUL PEOPLE WHO HAVE ALREADY DONATED, WE LOVE YOU!

What IS routine?

Posted by Juliette

So are we in a routine now? Well firstly I can't remember what we used to do with Joseph particularly well, secondly what is 'normal' for a 4 month old? And lastly, I just had to change a yucky nappy at 4am and Sammy was very chatty about it all. Sammy also had a little vomit over his sleeping bag so Daddy was not able to sleep through this little middle of the night escapade as I needed some help cleaning everything up. None of this is very routine.

Tonight Mark told me that it is a 'CF thing' to be quite nocturnal and a light sleeper. It seems like our little boy was indeed sleeping lightly when Mark shared this new delightful news with me and he decided to show me how right Daddy was. Boo!

I've now managed to get him back to sleep with a feed so hopefully that's our excitement over for the night. Boo again, by the time he's sleeping soundly enough for me to put him in his cot without waking him (cos he's a light sleeper) it will be 5.30am and almost time to get up (I guess Mark could be right).

Having said all of the above, we are in a reasonable routine. Sammy has stopped feeding 24 hours of the day as his weight has caught up a bit. He has reasonable times for feeds, we have a pattern for his physio and medication plus if you've been out with us recently you'll know I now am comfortable, even organised about carrying some creon (an enzyme) and apple purée with us so he can have a milk feed whenever he wants to. (Creon is taken before every meal to help Sammy absorb the fat from his milk, without it he wouldn't grow.)

The subject of what we take with us when we go out is what I wanted to blog about. Unfortunately life with Sammy is not very spontaneous. Whenever we leave the house, even if its just for school pick up I prepare a bag of sterile spoons, creon and apple puree so that if Sammy needs a feed I can give one.

Recently we were very lucky and had the pleasure of staying out of London with friends. Packing was a nightmare, it took hours and we had to be precise to make sure nothing was forgotten. When we were finally in the car ready to leave Mark and I said to each other 'Never again'. 

We have only stayed away from home with Sammy once before and on that occasion I forgot the steriliser. I was ever grateful to Mark's parents who have every bit of baby paraphernalia you should ever need, owing to their clan of 22 grandchildren! I borrowed a steriliser and all the things we had inside ours. Mark's parents live 10 minutes away from my parents where we were staying so we were lucky. When packing for this recent trip we had to make sure we had all Sammy's CF treatments. This equates to 4 bags of STUFF and includes medicines, specialised milk, physio equipment, a steriliser (never forgotten again!) syringes to give the medicine plus the equipment to make up Sammy's weekly bottle of antibiotics (given to us as dry powder which we reconstitute at home.) (Our role of parents has extended to include carer, nurse, physiotherapist, PA and now pharmacist - perhaps this is the subject for another blog post.) With our 4  bags of stuff and the other baby things like a cot... oh and some clothes for the rest of us, we headed out of the city. We got stuck in some traffic and behind the obligatory tractor later in the journey but once we arrived at our destination we had an amazing time.

Despite firmly believing we would never leave the house again after packing for this trip, we will of course do it again because being away is so much fun once you get to your destination.