Tuesday, 25 March 2014

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.

Monday, 17 March 2014

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.

Saturday, 1 March 2014

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.
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