Sunday, 23 June 2013

Hands off he's mine

Posted by Juliette
So far I have found it relatively easy to write posts as they just recount our experiences. This one however, poses more of a challenge as I'm looking for an answer.

I'm sure many mums will know what I mean when I say that your personal space changes when you are either pregnant or have a new baby. I think it changed in two ways when I was pregnant: Firstly I wanted more personal space, particularly on the tube where there is always an intrusion and I was wary of being pushed. Other people however, thought I needed less personal space and people who I wouldn't usually kiss hello with suddenly felt the need to rub or touch my bump. I never minded when people asked but people didn't always ask! Secondly, complete strangers wanted to know how the pregnancy was going. I know that people were just being friendly but sometime the Londoner in me struggles with talking to strangers and I crave my anonymity; the last thing I want to do is discuss such a personal issue with them.

Once you've had the baby this invasion continues: shoppers in supermarkets stick their hands and head into the buggy to take a look at the wee cutie and others stroke the baby's head or grab a hand to squeeze. People that you know only vaguely who fancy a cuddle just expect you to hand the baby over.

It's plain to see that all this irritated me when Joseph, my first child, was a baby but it has become an anxiety rather than an irritation now that Sammy has been diagnosed with CF. One of our jobs as Sammy's parents is to protect him from infection where possible yet still lead a 'normal' life. Each infection he does get has the potential to reduce his lung function which has very serious consequences for him, and he may also need to be admitted to hospital for treatment if it can't be managed by drugs at home. This will of course be stressful and very disruptive to the whole family so infections are best avoided where possible.

Sammy will be going to nursery when he is old enough where he will be exposed to lots of infections. By the time this happens I hope his weight will be normal for his age and also that he is fit, perhaps even sporty and will have developed some immunity. At this stage however, he has none of this to protect him so I have my dilemma. Do I let people coo and stroke my beautiful child who, incidentally, and to make the challenge harder, smiles back at them; or do I tell them DON'T TOUCH and hand them antibacterial hand rub to make my point? How am I to know who has clean and who has dirty hands, who has a virus and who suffers from hay fever?

The truth is I still don't have the answer though I'd hoped writing this would have provided one. I'm struggling to find the balance between being polite and being hysterical. Perhaps experience is the only way I can find out what to do. Just cut me a bit of slack if you notice I pull away when I see you coming up for a tickle or to tell me how cute Sammy is.

Tuesday, 18 June 2013

Big Brother

Posted by Mark
Lots of people have asked how Joseph, our 4 year old has been since Samuel was diagnosed with Cystic Fibrosis so I wanted to talk about that in this post.

From the moment that Joseph knew he was going to be a big brother he was very excited about having a new member of the family and about the possibility that he might get to share a room and sleep in a bunk bed. I remember vividly how eagerly he rushed forward to see Sammy when we brought him home from the hospital and how he then hurried off to get the toy giraffe he had bought to give to his new little brother.
It came as no suprise that Joseph was willing to help from the start whenever we asked him to do something to help us look after Sammy; not only is he generally a very helpful boy, but he is also clearly deeply attached to his little brother and wants to look after him and care for him as much as he can.

We wanted Joseph to know about Sammy's CF and so we explained that while he was growing in mummy's tummy, his lungs and tummy grew a little bit differently so that he has to have a lot of medicine and we have to try to make sure he doesn't get too many coughs and colds. We showed him the Creon and how we have to put it on the back of a spoon and explained that Sammy would need to take this medicine forever every time he eats. Joseph looked sympathetically at Samuel and said: "I think he will find that very boring".

Beyond that, hasn't really made any comments about it, although whilst listening to him chatting with one of his friends I overheard him say: "Did you know Sammy's tummy doesn't work properly?" so he is obviously quite aware of it. Also when Juliette was talking to some of the nursery staff one of them told her that during morning assembly when prayers are said for the sick, Joseph offered Samuel's name for inclusion. The fact that this was entirely unprompted and he didn't even tell us about it afterwards gives a glimpse into the kindness and compassion that lies at the heart of Joseph's character. And while I am not surprised, for I witness his kindness every day, I am not complacent and do not take his good nature for granted. We know that there will be times when the demands of caring for a child with CF will impact on our relationship with Joseph, but we are resolved and determined that he will not be sidelined or left out. An active lifestyle is an important element in fighting the symptoms of CF and that is something we will all benefit from and we are in consultation with Joseph about the best sports and activities for us to try!

Samuel adores Joseph and smiles and giggles every time he sees his big brother. It gave me great pleasure today to watch Juliette doing Sammy's physio in his cot while Joseph stood on a chair, peering over the side and reading a bedtime story.
I know that no matter what the future will hold for us, Sammy with have a good friend and ally in Joseph and I look forward with all my heart to watching them grow together.

Sunday, 16 June 2013

Clinics, Meds and wonderful support

Posted by Mark
So far we have taken Sammy to the CF clinic at the hospital twice. It is a place we will get to know very well as he is going to need to have a lot of appointments to make sure he stays as healthy as possible for as long as possible and to constantly monitor and adapt his treatment. At these early stages we are having contact with the CF team at least twice a week with hospital visits, home visits and 'phone calls. Each time we meet them there seems to be a slight alteration to his medication which can be hard to keep track of, so there is now a dedicated medicine cupboard in the kitchen with his daily needs listed so we don't forget anything. We are also getting to know our local pharmacist very well and he is being very kind in trying to scour the pharmaceutical world for a brand of flucloxacilin that doesn't taste disgusting. I'm not sure how successful he'll be but as it is the medicine Sammy likes the least it is worth a try.

It is a little sad to see Sammy squirming and spitting his medicines out and it would be lovely not to need them but they are certainly making a difference. Before diagnosis (and thus before medication) he was constantly feeding as he was so hungry and was quite hard to settle. Now he is putting on weight and has long periods of happy playing between feeds and has even been known to sleep in his cot for more than an hour at a time! In spite of his obvious frustration at having to wait until he's taken all his medicine before he can eat, he remains one of the happiest and smiliest babies I have ever met.  As I write he is giggling away at the star mobile above his cot that was made by our friend Helen in Australia.

And that brings me to the other theme of this post: just how important our friends and family have been during this time. I am reminded of a quote by kid's tv host Fred Rogers which is often circulated at moments of public catastrophe (most recently following the Boston Marathon bombing). He said:

“When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping.”

And it is true. We do not have to look very far to find people who are helping. Since telling people about Sammy's diagnosis we have been genuinely moved by the many offers of support and help that have come from our friends and family; from work; from shul and from Joseph's nursery. It means a great deal to me that so many people have contacted us to offer practical support or even just words of comfort and sympathy. And I am also mindful of so many others: the people who work in the CF team; those who campaigned to have CF included in the newborn screening so that Sammy and others like him would be diagnosed early; the doctors and geneticists who have devoted their working lives to helping families affected by CF, all of these have my deepest gratitude and thanks. 

We read in the Talmud of a wise man called Nachman Ish Gam Zu. He got his name because no matter what calamity he experienced, he would always say "Gam zu latova" - This too is for good" and I have always been inspired by his example. Now while I cannot with all my heart say that this too is for the good, and we must face and recognise the feelings of anger and unfairness that accompany diagnoses such as ours, I can say that it has helped to highlight for me the goodness that resides in people and the strength that we can all exhibit when confronted by the difficulties and challenges of life. So to everyone who has offered words of comfort and practical support, I would like to say thank you and rest assured we will call on you when needed.

Saturday, 15 June 2013

Joseph's first anatomy lesson

It's great having a daddy who can draw and teach!  

Posted by Juliette 
This morning (9th June) we showed Joseph the cup (face mask) we are using for some of Sammy's physio. We then told him about Sammy's lungs. We realised he didn't know what lungs were (he's 4) so Mark brought Joseph's chalk board into the bedroom for an anatomy lesson. It was brilliant. Joseph knows lots of things about his body. He has picked up knowledge from things Mark and I have said, listened to Nina and the Neurons and Dr Ranj from CBeebies and built up quite a bit of knowledge of skeletons through a fascination with all things related to pirates (skull & cross bones). I was impressed. 

Mark and Joseph talked their way around a skeleton and internal organs and then Joseph gave daddy's drawing a suitable silly name.  
Mr Funnybonkheadgilly brainhead hearthead lungheadhands wavyness! 

Thursday, 6 June 2013

Diagnosis Day

Posted by Mark
A day after we were told Samuel may have Cystic Fibrosis (CF) we were asked to go to the Royal London Hospital to have a sweat test to confirm whether Samuel had CF or not.

Although we knew that there was a chance that the sweat test would come back showing a negative reading for CF, we both knew deep down that the initial suspicion raised by the Guthrie test would be confirmed, and so it was. The test itself is fairly simple - put some sweat-collecting discs on the patient's arms wrap him up in as many layers and blankets as possible and wait half an hour for him to sweat as much as possible. The sweat is then analysed and if it has very high levels of salt, a diagnosis of CF is confirmed. Once Sammy's results were back and CF was indeed confirmed, we began to get to know the specialist team that will become such a vital part of Sammy's life in the coming weeks, months and years.

We had already met the two specialist nurses, one of whom broke the initial news at the home visit, and the other who took us through the sweat test. We then spent some more time with the consultant, the dietitian and the physiotherapist. The specialist nurse and dietician introduced us to a medication called Creon, the first of many medicines that Sammy will need to take throughout his life. As he gets older he will take the Creon as capsules but for now we have to spoon a tiny amount of it onto the back of a spoon that has been smeared with apple puree.

Some of Sammy's medication. 
We were also given antibiotics to give twice a day to stave off infections and some multivitamins to help maximise his nutritional intake.

Sammy also had some blood taken for further tests and also to determine exactly which type of CF gene mutation he has.

It was a very long day and there was a lot of information to take in but we left feeling very supported and impressed with the professionalism and dedication of the CF team, and with an appointment to return a couple of days later for his first clinic appointment.

If this is the first time you are reading this blog, make sure you read our Introduction page and our Early Days page.