More than a year on and doing well

This blog is now more than one year old! (Which of course means that so is Sammy - Happy Birthday, Sammy!)

Apologies for not having updated this in a while, but you will be pleased to know it is because everything has been going pretty well recently. Sammy is now 14 months old, running around, exploring, learning and bringing us much joy every day.

On Friday we had a clinic visit and everyone was very pleased with Sammy's progress. It was a very long clinic which began with a chest x-ray (for which Sammy sat beautifully) and then visits from the Play Specialist, the Physiotherapist, the trainee Nurse, the Dietitian, the Nurse Specialist, the new Nurse Specialist, the Consultant, the visiting Fellow and the Psychologist. Sammy was quite happy to have so many different people fussing over him and telling him how cute he is.

In August we will be having Sammy's first Annual Review where the team will do a full MOT on Sammy and check an a lot more things than they do routinely. Part of this means that this visit they had to take blood for testing and he did wonderfully. He didn't even make any fuss when the needle went in but I noticed he was watching the whole thing with a look of slight confusion and puzzlement. It didn't seem to bother him at all though and he gave the phlebotomist a very friendly wave when he was finished.

It is quite an exciting time in the world of CF at the moment. This week a drugs company called Vertex published the results of a clinical trial that was testing the effectiveness of a combination drug therapy on people with CF. The results were pretty encouraging and showed a significant reduction in the amount of infections people were getting. This is good because every infection can lead to irreversible lung damage. Unfortunately for Sammy the drug doesn't treat his particular genetic mutation, but it is a big step forwards nonetheless and we are hopeful that something for Sammy will be coming along soon. Until then we just have to keep Sammy as fit as possible so that he can fully benefit from whatever treatments come.

You can read more about the drug trail results at the CF Trust's website here:
http://cysticfibrosis.org.uk/news/latest-news/promising-results-for-combination-therapy-for-cystic-fibrosis

Happier News

Posted by Mark

Just a quick post to say two things really: One is to say a huge thank you to all the people who were thinking of us after the news that Sammy had got a bacterial infection and the second is to say that today we got the results of his latest cough swab back and he is all clear!

This is great news for us as it means that the extra antibiotic and extra physio got rid of the infection very quickly and it is unlikely to have done any damage to his lungs. We are very very relieved and as always, very grateful to our excellent CF team at the hospital who have been on hand to help us through.

To go with the happy news, here is a happy pic from a couple of weeks ago of a happy Sammy and a happy Mummy at bathtime.

Crushing News

Posted by Juliette

Hi everyone.

We received some bad news some days ago which felt like a huge blow to our hearts and stomachs. To some families living with CF this may be very normal and may, unfortunately for them, happen regularly but for us this is our first time and it made us feel like we were crashing back to earth. That CF is real.

Sammy's cough swab results came back from the lab showing there is a bacteria living inside him. It's called Haemophilus Influenzae. Having a bacterial infection is very bad for Sammy as it could permanently damage areas of his lungs. He is on an antibiotic which is designed to kill this bacteria and we hope so much it will kill the bacteria before it does any damage.

This is a big blow for us as we felt that Sammy had made it to a year (nearly, he's 11 months old) without getting anything more serious then a cold. We have been reassured by the CF nurses that of all the bacterial bugs that could have grown this one is not particularly strong and we are trying to hold onto that thought.

Sammy is doing ok and trying to play despite feeling lousy, he is more cling then usual which is to be expected. We will give him an extended course of the antibiotic used to fight this bacteria and have another cough swab taken in a weeks time. We pray that the Haemophilus Influenzae is gone then.

A little less time

The only non-blurred photo

Posted by Juliette

We have been kept very busy by little Sammy and have not had the time to post a blog recently. Friends keep saying sorry for not keeping up with the blog and ask how we are doing but there has been nothing posted to have kept up with so no one should feel bad. We know lots of you think of us. Thank you for doing so.

So what have we been up to? Well fortunately we have just been kept busy with fairly normal baby things rather then sickness things. Sammy started weaning at 6 months, crawling and using a baby walker at 7 months, has had a bit of fruitless teething and now he is 10 months old he is starting to take his first independent steps! He has also started talking. Can you see why we've been so busy now? We are doing great though.

So about the weaning: it is going extremely well, Sammy just eats and eats. His portions are often bigger then Joseph's. I thought perhaps it was a CF thing but now just think he currently needs a lot of fuel to run his almost constant activity. Sammy and I are doing 'baby led weaning' which essentially means Sammy is given whatever we eat and he self feeds too. Its either something he can hold in his hand like a sandwich or piece of pear or I give him a loaded spoon of things like soup, flaked fish or yoghurt that he puts in his mouth. It's a messy business for several months as he learns exactly how to get the spoon in his mouth without losing its contents on his cheeks and chin but his 'Yoghurt Beard' or sometimes 'Green Pea Soup Beard' is getting smaller as he gets more proficient. You won't catch me steaming, pureeing, freezing, defrosting and reheating food for Sammy, I don't have the time or energy for that so he just eats the same as us and we don't have any fuss over whether something is finely pureed or has the odd lump in it plus it is a delight to watch Sammy turning a piece of food over and over in his hands peering intently as it as he explores the food he is eating.

One major difference with weaning a baby with CF is that for every gram of fat Sammy eats we have to make sure he has the correct dose of enzymes (Creon). This means lots of label reading on packets and calculations at every meal which we're getting the hang of too. (Well we are at home anyway, we haven't braved eating out at friends or restaurants yet - will I have to ask people to measure how much oil they added to this and tell me how many eggs went into that and please show me the packet for the desert? I don't think I can, or if I do we'll never be invited back! No, I have just now decided to ask people the day before we go to tell me what we will be cooking and I'll calculate the fat and Creon ahead of eating there. It's got to be worth a try.)

As a result of his CF, Sammy needs to eat about 50% more fat plus loads of salt and fluids too. I'm waiting for the time when I'm out in a cafe adding salt to Sammy's fatty pizza and some busybody comes and tells me I'm poisoning my child or worse. Don't worry, I'll blog about it when it happens!! I heard from the CF nurse that one mum was so fed up with everyone staring that she just said to all the strangers in the restaurant "My child has a medical condition which means she needs twice as much fat as other kids and a huge amount of salt just to be healthy. I'll happily answer any questions you have if you want to come and ask me but if you don't have any questions then stop --- staring and mind you own --- business" (you fill in the blanks). Hooray for that mum. Another parent told me you just have blinkers on and don't even notice the people around you who watch you and tut or talk about you. I'm cultivating my new thick skin!

Sammy has a milestone of his very own. I know not many other kids can do this. At 10 months Sammy will take a syringe full of medicine and not only put it in his mouth but suck all the medicine out. Should I be proud of this? Half of me is and half of me wishes he'd never seen a syringe. However I can now believe the nurses when they say that 2 year olds swallow Creon capsules!

So Sammy is hitting all his milestones head on and we are running after him just trying to keep up but absolutely loving it.

So I'll leave you with a little mental image. Sammy is walking more and more each day, he loves practising his new skill. His walking style is brilliant to watch, back straight and arms up in the air for balance, then with each step he punches the air with both hands. Its like every step is his entrance to a party. If you can't quite picture it think Tevye in 'Fiddler on the Roof' singing 'If I were a Rich Man' ... Ya ba dibba dibba dibba dibba dibba dibba dum... Yidle-diddle-didle-didle-man.
Got it?

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.