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.