Dear Isaac....

My wonderous boy. How can it be ten years since we met you? I was 27 when I had you, and you were a planned and much hoped for first baby. Still, it all happened so quickly... Pregnancy was amazing, absorbing, and somewhere along the way, I think I forgot that at the end of it, we would really, truly have a baby to take home with us. My first words to you, after a 3 day labour; delirious in drugs, sleeplessness, and ecstasy 'it's my baby, it's my baby!' As well as overwhelming love, I felt oddly huge surprise - how was it that we could produce something so exquisite, so soft, so perfect. 

You were such a smiley baby, always on the go. I remember holding a friends baby girl one day, and thinking there must be something wrong, she sat still... Was that even possible? We called you a multitude of names (a few which I will list here just to embarrass you; our tinkleberry, Isey bonisey, bonbon, cheekycheekynose, poppychops). We would just look at you, and look at you, and marvel some more. We had a baby monitor with a camera over your cot, which meant we could watch you on our TV at night. With every toss and turn, we ohh'd and ahh'd. 

I knew you, really knew you. I had a new pea in my pod. We laughed at the same things. You loved diggers (your first word 'didder, didder!') and Thomas, and so I did too. I loved humous and butterfly kisses, and so you did too. Dad would rush home from work to lay on your bedroom floor for hours, teaching you to roll over, or playing games under the covers. 

Always on the go. Fidgety. Funny. Active. A water baby, always wanting to swim. So very sociable, always wanting to be with your cousin. You craved fun with friends. Becoming a brother, you were better than we ever hoped you would be. You loved little Shnuks passionately. Like you loved Rosa again years later. 

Your growing independence would have been so hard for me, had I not had Anouk and Rosa to fill that cuddle time. But I still miss you. Luckily at nights I can get my fix, occasionally still crawling into your bed, where you immediately shift over and spoon, like we were never apart. 

I love you my gorgeous boy. I could not be prouder. You are everything I had dreamt of, and more. 

I had a moment after you were born, a sharp intake of breath, and a sinking feeling so hard, instantly winding me; a pain. It was the enormous realisation that I loved you more than I could have ever imagined my heart being capable of, and that whilst I would protect you with my life, there may be some things even a mothers love cannot protect you from. What had I signed myself up for? A life time of BIG LOVE but worlds of worry? Your Dad picked me up, and I knew that having you made me and him a team, for life. Whatever happened, we would always be your parents. We could love and protect you together. 

Three weeks later, we found out you had CF. 

Happy tenth birthday my amazing boy, you make me laugh every day, and a teeny tiny bit of me is still reeling from the shock 'it's my baby!'. 

Always, Mama x 

Tummy aches and Obie shakes

Isaac has been really well lately, chest wise, but he somehow seems to suffer with more tummy problems between chest infections.... I'm not sure if there could be a reason for that or not (I suspect Sod's law). Could be any number of things.... He agrees that it could be that he is either not taking his Creon on time (at the beginning and in the middle of his meals); he has forgotten to take his Creon on occasion (we only know of one instance of this for sure); he has outgrown his Creon dose and needs more (awaiting results of food diary now); he has another blockage (needs more Movicol); he has a tummy bug (probably not, going on too long now); it could be for any of these reasons and a whole lot more that we don't yet know about. So, clear as mud. 

He had a blip like this a while ago, a few days in I go to call his dietician.... but just as I am about to, it gets better for a few days. The mornings are always the worst, he is back and forth to the loo, and curled up in pain at times. It's so frustrating not knowing the cause, and so sad seeing him like that. 

But I'm also feeling really proud right now. His Creon dose is dependant on the fat content of what he eats (plus, rounding up a bit for high protein foods), as its fats and proteins that he cannot digest. He has always needed the full whack of Creon, and had very high doses as a baby, which he seems to have grown into more now (for CF friends, he takes Creon 10,000, anything from 25-50 a day). We know he manages well on about 1 Creon to every 3-4grams of fat. Over the last couple of years we have moved from labelling items in his lunchbox with how much Creon each is, to giving him a set amount and letting him work it out himself. He is so good at this now. Even with homemade food, without wrappers to refer to, his guesses are pretty good. This makes a huge difference to him; it means freedom to just grab a pot of Creon and go. 

Please do feel free to contact me on FB of you're reading, I love questions. In reply to a recent one, Obie is a German Shorthaired Pointer (GSP). He is settling in so well. Few toilets get issues if we don't keep an eye on him, but he is just lovely. Very cuddly and loving, as well as active and a bit bonkers. So he fits in well around here. Loving his little pointer shake when he sees us. He has just started to go out to work with Dan (he's a builder) so he's busy having fun every day now. 

We are fast approaching Isaac's 10th birthday, which is unbelievable, scary, funny and a little sad all in one. Can we really have met him all that time ago? Could he really leave home in less time again than that? How can he only have one more year of Primary school to go? Our little tinkleberry is all pre-teeny and I don't know where all that time has gone. 

Plus, 10 whole years of our life with CF. 

Birthday also means annual review. I usually dread, no, dreads not the right word, but dislike mildly going into clinic these days. It's not because it's a bad day. Actually, it's a rare time to be alone with Isaac, and we have fun playing don't step on the cracks all through the hospital corridors, get an M&S lunch, and see our lovely team. It's that when he is well, and we're on a high, we ALWAYS come away with an almost glowing report, but not quite. There is always a new thing to worry about, another niggeling worry to fit at the back of your mind. Or when he is not well, and we expect bad news, it might be better than we hoped but still, we still go home with the same symptoms, maybe unresolved. Plus, who ever wants to go into hospital? Full of sick people.... and who wants to bring home Noro virus for the weekend? 

Annual reviews are different though. I prepare myself fully. Arm myself with expectation that it won't all go our own way. It is a full day of tests; bloods, X-rays, ultrasound, physio review, exercise tolerance test, in depth lung function, dexa bone scans, doctors review, CF nurse review, dieticians review, psychologist review, and new this year; test for diabetes. 

All in one llllllong day. But although we could find out a whole lot of news we don't want to know, we feel positive that we won't, and if we do, we know that knowing is for the best. 

Have a great day. 

My family

In no particular order, I would like to thank (in the Academy award style); 

Rosa: for so much fun yesterday, playing our made up game, dinner or daughter, in which she was either showered with kisses or eaten. And for saying repeatedly that getting Obie was 'best day ever!'. 

Dan: for everything, always. I'm so sorry that I'm a grumpy lumpy in the mornings sometimes. I love you. 

Anouk: for asking how NOT to have babies, and when I said the easiest way is not to have sex (sexy cuddles she calls it) she replied, 'no way is anything coming near my cha cha'. Age 6. Go girl. 

Isaac: for a fab try at rugby today, and for humming away to music I love in the car, which he pretends to not like in public. He will have great taste! 

Obie: for being so unbelievably gorgeous and fitting into our family so well. It is early days, and maybe I'll be cursing next week, but he just eats, sleeps and poops right now, and as long as one of those is outside, and he keeps giving all these cuddles, I'm happy! Love love love him. 

Obie!

Our gorgeous new boy....