Looking good, and a deeply uncool confession.

Things are looking good in Moly World. Isaac's tummy is better than it was. Not right, by any means, but improving. He has a new drug for this, which is the last in the line of drugs that he can do at home. The next one up from this will have to be on the ward, so fingers crossed this continues to work for him. He is also tolerating Gastrograffin again, which we keep as back up. He has previously had rashes from this, and we have to be very mindful of allergies, which can start at any point. We want to keep this back up, so it's really good news that he seems to be tolerating it again. 

We have been in clinic a lot lately, and I think he has probably missed more school this term than any other one. Its all be pretty shit if I'm honest (pardon the pun). We are very much hoping that we can keep away from hospital until after Christmas now .... But taking each day as it comes. We are also seeing a new team psychologist and hoping to work out some coping strategies around his pain, nausea, and yet still having to go to school. 

The girls are as gorgeous as ever and getting excited for Christmas already, as am I. In fact, I have a confession. One which is truly, deeply, terribly uncool...... Are you ready people? 

I have finished my Christmas shopping. And worse (du da da....) I've wrapped most of it too. 

I know, I know. Don't worry - no decorations up, but I really love December and want to enjoy it all; the Christmas plays, kids parties, carols in the village, ice skating by moonlight, and have friends and family over every weekend... All without the worry of all the presents. I started doing this when I was pregnant with Anouk who was born mid December. After blitzing the shopping while pregnant, those weeks after her birthday were wonderful, I could focus on the kids and enjoying everything I had organised already. Its kinda stuck since then. With three kids and lots of Birthdays (Obie included) at this time of year too, we are soooo busy right now. 

So, while I am out sipping mulled wine and singing Fairytale in New York, I'll think of you suckers pulling your hair out and fighting over that last toy in the shop. Ha ha! 

I have just got home after a night away for work. Nothing like a horrible drive home to make you appreciate just how lovely being home is. I'm going to sleep in a mountain of girly cuddles tonight. 

It's also our 5th wedding anniversary this month. Happy day my love, I really don't know what I would do without you x 

This is us looking a little bit tipsy after the wedding. After a small ceremony, we had a big party at home. Best party ever! You can fit a lot of people and love in a little house if you really want to. 

Classy picture. Making the Moly World M x 

Why you need to tell the people you love how you feel....

Lovely little film here. 40% of potential organ donations don't go ahead because of that missing conversation. Communicate people!

Sick people don't need grapes and sympathy, they need company.

However he feels; ...... sick, in pain, tired, Isaac has never once declined company. He makes do with me most of the time, or his Dad, sisters, the dog. We play cards, rub his back, talk rubbish, get beat at video games....  And that might be what he both needs and wants when he's throwing up, can't leave the bathroom, trying to keep down the terrible medicine. But the rest of the time (give us a call) the single nicest thing people could do is come and see him; parents with kids especially. 

It can be a lonely old business sometimes, feeling crappy. I might like a glass of wine and an adult conversation, or a chance to walk the dog and leave the house/hospital for the first time in days, and I know he likes to kick back and just be a kid for a bit. His friends have him giggling in a way that is unique to clusters of kids. 

You see, this is not like an acute illness that knocks your kid out for a few days. We don't know that this treatment will work. We don't know if we'll be back in hospital next week trying something else. And even if this passes, that something else won't take its place soon after. It's not been a bad year, but he hasn't been completely well all year either.... 

Having friends and family who make the time to come see him when he's been off school, or send him a card in hospital so he knows people are thinking of him, that really makes a difference. 

We don't need grapes, just people to play with (and chocolate maybe). And that includes his sisters too. 

His tummy seems a little better. He has eaten very little these last few days, looks a bit worn out, but hasn't complained at all (thank you Minecraft). 

He did say to me this morning 'why do I have to have this Mum?' and I was just about to reply, 'Oh Isey...' When he replied in an American drool 'is it cos of DEESE BALLS' and laughed his head off. I have no idea what that's from or means, but it perfectly sums up him, laughing in the face of a lot of crap. 

Boy done good. I love him so so much x 

Clinic today

As I have said too often recently, Isaac is having ongoing tummy issues. This never used to be his main problem. He has grown a nasty little bug called pseudomonasA for many years now, so has fairly regular exacerbations (imagine a little bug-campsite in his lungs, with all-year-round campers who, whilst occasionally in trouble for things like littering, on the most part behave and keep themselves to themselves. Problem is they occasionally invite their friends, drink too much, and have a right old party, spilling out of their own campsite and causing all sorts of havoc). This keeps us pretty occupied CF wise... But 2015 is mostly definitely the year of the tummy (fortunately the campsite has been quiet recently). 

X-ray today revealed his DIOS is back and worse than ever. He's actually been quite bright this week, but at clinic today looked pale and in pain. He did a fantastic job of talking about his symptoms, and when later looking at the films I felt so proud, as he was absolutely spot on. So none of this is good, but Isaac and I are both feeling positive. We were given the option to try another drug at home (the explosives) which we will do this weekend - will not be leaving the house for 3 days now, but much prefer that to staying in hospital again. We also have a plan B (the big guns) and a longer term plan too (troops on the ground). 

He has had acute episodes of DIOS in the past, but nothing like this. This has been on/off, but never completely better, for months now. Enough pain. Enough nausea. Enough pain killers for my ten year old. We can beat this now! 

Other news; he has lost a little weight (understandable) and his lung function was down, but he is growing well. We agreed the drop in LF could be tummy related (pretty hard to blow furiously into a machine for as long as you can when you don't feel great). We'll be back in clinic next week, so will worry about that then. I can't thank our CF team at Addenbrookes enough. They go above and beyond in my opinion, and I'll be eternally grateful to them. 

So we are home with our arsenal of new drugs...(bringing his prescription list to a tidy 20). Bring it on he says! I honestly think my heart might pop out of my chest I feel so proud of him sometimes. 

In other good news, Jayne has left the ICU 5 weeks after her double lung transplant, and is back on a normal ward. This makes me very very happy. BIG love to Jayne, Tim and Adam. I can only imagine how hard it has been, and I'm so excited for your new life Jayne. 

Have a great day all x

Hello.

Isaac is super well today. Best he has been in ages. That's about all I have to say. I guess I feel bad that I post more when he is sick. Really CF is very much in the background of our lives when he is well. To others it might seem like taking 50+ tablets a day, and me forever shrieking ......NEBS ISAAC that CF dominates our lives... But that is just our norm. We really don't think about it so much these days. We are too busy doing whatever it is we all do, which is a lot. 

We have clinic this week, but I'm going in feeling confident that he is going to continue to kick some serious CF butt.

Have a great day all x 

This is my bed

This is MY bed. 

OK, fine. This is my bed. 

To be continued with the chapter 'dog on the sofa'. 

Happy day all. Big shout out to Jayne, making a good recovery, hopefully leaving ICU soon x