Quick update

Things continue to be very up and down. 

I continue to be very up and down. 

He is being sick again, on and off, and the stomach pain continues. No change from the new meds, apart from an increased appetite. Egg and Scan next week. Can't come soon enough. 

Little Rosa is coughing too, poor pudding. Very much hoping he doesn't catch this too. 

In between all of this we have been celebrating Dan's 40th including a surprise party, a coffee machine, Anouk making him a sign and about 50 handmade cards (she is so sweet). All going well, we will have a weekend soon in Budapest (our first in 6 years without the kids). Happy Birthday honey. Don't know what I'd do without you x 

Pilbox passion

This one is for my CF friends and anyone else who takes large amounts of meds. Isaac's Pilbox has arrived, and we love it...

This is our messy meds cupboard (we have another for the equipment and IV stuff). A lot of stuff, and along with his inhalers, Picolax suspensions, nebuliser drugs, Creon and supplements, he takes 19 other tablets a day right now. It's a full time job for us, his CF nurses and our pharmacist to keep us in stock; 

But this leather bound bundle of loveliness, a weekly 'Pilbox' organiser, is about to make things much better;

We can fit in all the tablets he needs for the day, over 4 compartments. The modules all slide out of the case, so can be used individually for on the go; 

No room for Creon as well, as he takes 30-50 a day, depending on how much he eats, so we got an individual case too. Managed to squeeze in 32 capsules into this, so not enough for a whole day, but great for school lunches and shorter days out; 

To serve his drugs we always use little bamboo bowls, easy to clean and scoop stuff out of; 

We have loads of these and they're usually found all over the house. He also likes metal screw up pill pots, which he attaches to his trousers for school and help with discrete Creon popping; 

Kinda cool for boys (be warned, you can buy these super cheap online, but some are very small, so won't fit in enough capsules for a CFer). I'd love to hear from others how they manage and present their meds. I am an organisational geek!  Sorting out the week ahead in one go will save us so much time, and we'll better see when we're low on something. Plus it's something Isaac won't mind carrying round with him. Really pleased with it, it's so hard to find things like this that don't look and smell purely medical. 

....It's been the one highlight in a not so great week - he is back to daily vomiting. Boo. 

Please, if you can, sponsor me HERE for a 50km (most likely 12-14 hours) trek over the Brecon Beacons in June. Training has commenced with vigour! In aid of the CF Trust. Have a great day x 

Egg, toast and jam, with a side serving of radiation.

We are heading back into hospital soon for his next scan, which includes that delicious breakfast menu. I am trying hard to sell it to him, but I have been told it is pretty replusive.... So I suspect it may take some bribing. He is then scanned over the following 5 hours (5 hours? That is a whole lot of card games!). This will tell us just how broken his tummy is. 

You see, what you should never do after being told something might be wrong is GOOGLE. But if I had been tempted I may have found that his last scan, which revealed 'significant delayed emptying and a distended stomach' might be something like 'Gastroparesis'... and if I had read further I may have found that this is otherwise known as 'broken stomach'. Problem is, the symptoms kinda fit... (Stomach aches, vomiting...). Hence the new scan and radioactive breakfast. 

He has already started on some treatment for this condition, funnily enough, more antibiotics which coincidently help make your tummy contract, and his appetite really does seem to have picked up since, which is great. The worry that I have is that the recommended diet for someone with a broken stomach is 'low fat, low fibre, low volume'. 

Now anyone who knows Isaac will know that he needs a high fat diet (because of his CF he has an inability to break down fats and proteins without medication). And due to his DIOS (an unfortunate complication of CF) he needs more fibre. And because of both of these reasons (and the fact that he is his fathers son) he normally consumes very high volumes (whilst gaining little weight). So you can imagine the worry here. 

That said, we take each day as it comes. Today has been a good day. I hope yours has been too x 

ps: I got stupidly excited earlier over a new tablet organiser. I am always looking out for new, non-medical looking pill pots (suggestions welcome). Isaac loves anything that can he can discreetly carry his Creon in - he takes about 30-50 per day, with his food, and just finding something to fit in the dozen he needs for a school dinner is difficult. But this is a weekly organiser for his other (21 currently) medications... A bundle of leather bound loveliness. I'll post picture soon for CF friends. It's by Pilbox. It's all labelled in French, but I think that just adds a certain je ne sais quoi! His new medications are 4 times daily, so this will really help.