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.
Got it?


  1. I get those looks ordering my son mozzarella sticks and french fries for dinner in a restaurant- you do get used to it although if someone ever said anything to me I'd love the excuse to go off on them lol. I've never heard of having to calculate exact enzyme dosages for a kid so young before. When my son was little we had X enzymes for meals and X enzymes for snacks that were always the same. We always fed him high fat meals and snacks so we could assume the enzyme dosage was always the same. No problems doing it that way for us- maybe you could switch over too. Seems like a huge pain to calculate out for every meal!

  2. Hi, sorry it has taken me so long to respond. I really appreciate the comment, thanks.

    That sounds like an easy way to do the enzymes. I don't know why it's different but could be to do with the fact that we are in the UK and you are in the US but I don't know. It's not so hard, just takes a bit of getting used too. The enzyme we use is called Micro Creon, you get a little pot of granules and a scoop the size of half a capsule! Micro is right. Everything Sammy has ever eaten has been worked out to a quarter of a scoop. 90mls / 3oz of milk is one and three quarters of a scoop. A breastfeed is one and a half scoops. If it was obvious he was not digesting all the fat then our dietician would tell us to increase by a quarter of a scoop. As Sammy started solid food we only measured things in half scoops and just this week we have started using some capsules so that is the equivalent of two scoops.

    I can see how difficult this sounds but I know that by being precise we are giving a good amount of enzymes to digest the fat and at the same time not to much so we avoid a blocked bowel.

    Thanks again for the comments. I hope your son is doing well.