Monday, 14 May 2012

Cleft Lip and Palate Awareness Week

I have to admit I wasn't aware there was an awareness week for the reason I started this blog. I guess they're not doing such a great job! If anyone ought to be aware I should be...I suppose as it seems less of an issue nowadays and life is just life, maybe I'm not looking out for things as much as I should. Whilst we're realising things, I just realised it's been very nearly four years since I wrote this post the morning after Jake's (not that he had a name then) cleft had been diagnosed. I have to admit I'm pretty pleased (and a little bit proud even), that I'm still writing it. So much has happened in four years which have gone by in a flash. Operations, new jobs, house extensions, learning to walk (him not me), a new baby, holidays, speech development, hearing tests and the rest of life and so kind of makes you forget some things, take others by granted and perhaps become less appreciative of what you have. We have Jake, who is a healthy and happy little boy full of life and his face, whilst showing some reference to the cleft, is perfect as far as we're concerned. So having a Cleft Lip and Palate Awareness Week seems like a good idea; I remember so clearly when we got our news and there was less on the interweb then than there is now, especially blogs...our first port of call was Clapa's website and then a random mix of articles and medical sites but we always came back to Clapa. So it's only fair I help this awareness thing and link back to them. And for anyone reading this for the first time and is all over the place with worry, take 10 minutes or so reading the original posts from 2008 and then so you can fast forward to beyond Jake's nearly 4 years, check out this great post by a fellow parent blogging about the experience they had with their daughter. Can they fix it? Yes they can!

Tuesday, 8 May 2012

Jake at 3 years 9 months

I always think it's funny when adults talk about how old their kids are in the same way kids do. That half a year or even the extra month is so important we specifically mention it. I suppose when kids are so young the increments are all the more significant but when someone asks me how old Jake is, I'll say 4 in September or 3 and a half, yet I'm 36 not 36 and one week (since you ask). Anyway, the reason the post is called '3 years 9 months' is for anyone who's just turned up here after recently receiving a diagnosis of a cleft or who's just had a baby with a cleft. I remember when that was us (which genuinely seems like 5 minutes ago), I wanted pictures and context. It's pretty difficult to get that context of how your unborn or brand new baby will look at 3 years and 9 months. The fact is that the cleft affects us so little these days, to the point where you have to force yourself to consider it separately and it's easy to forget how much of an issue it seemed at the time. So, for anyone new here's a few photos to show you the transition. I hope you don't look at Jake now and see only a cleft repair, but I understand if you do as you've never seen him before and after all, you're here as you just got some news. I understand that as much as I know that in a while (not as much as 3 years 9 months), you too won't see or be affected by the cleft related issue which has lead you here! Take care everyone, have a great Tuesday. James

Thursday, 22 March 2012

Speech update

Although not many people read this blog, I'd like to apologise to those who do and may have expected a more timely update since the last post. I know you've been on tenterhooks since.

The long and the short of it is that Jake's fine. Actually, he's not fine, he's bloody marvellous. Both the speech therapist and Piet were very pleased with the lip and palate repair and his development.

I'm sure it's coincidence but perhaps the Montessori is paying off as he seems ahead in terms of comprehension, reasoning and speech. He may have a bit of a lisp as he still has trouble with his 'd's' as he's using the back of his mouth for them instead of the front, but nothing which won't sort itself out before he starts big school next September.

Also, the dreaded lip revision this year is now not happening. Nor will it ever unless Jake asks for it or we feel it's causing social problems.

So all in all, a complete result.

Thanks as ever to all his amazing team.

Tuesday, 14 February 2012

February 27th

That's the date Jake will be going back to see the speech therapist. His first meeting was a few days after Freddie was born, so not far off a year ago. At that meeting he wasn't great at responding to the therapist but he did sit on my lap and say a few words when we went through a picture book.

Since then, his speech has developed at breakneck speed as you'd expect. The combination of pre-school 4 mornings a week and just growing up means we have full conversations now and his vocab increases almost daily. There are still letters he struggles with but, not being a speech therapist, I don't know if that's his age of because of anything particular to his unique mouth. He's got some lisping going on and various other Jakeisms but generally I'm happy. However only an expert will be able to tell us one way or the other.

I really hope they say all is well; we've not done anything clefty for ages and in the back of my mind is the next operation sometime in the next 12 months, so I'd rather that was it.

Anyway, we'll see what's what the week after next and will deal with it accordingly.

Here's me and the kids.

Monday, 12 December 2011

Jake's 4th Christmas (and Freddie's 1st)

Once again, this post starts with an acknowledgement of the time which has passed since the last. I was always very proud of keeping it so up to date, especially when you think about the millions of unmaintained blogs around. Anyway, when I started there was so much going on, so much to learn and then, you know, we had a baby and there was lots of new stuff to do and then the operations and so on. All of which generated thoughts, feelings and emotions which spawned relevant content to write here. The blog virtually wrote itself.

Nowadays life is just life and rolls on accordingly. Yes, we've had a second, but, thankfully, his arrival was much less dramatic plus we're no longer novices in the child rearing game.

The upshot of all of this is that as you get used to something, smaller things are less remarkable and if you're not careful, life can pass you by a bit. This year was all about stability. I swapped a very lucrative freelance job for a less financially rewarding but more secure role, the house is finished and everything is settled. Perfect for a new baby to arrive. Since Freddie came along, we're back to being knackered, sterilising bottles, changing nappies etc. All pretty standard, routine and mundane stuff. And because of which you find yourself doing less and having less to talk about.

I should point out that Jake did this 6 weeks ago.

I was already in South Africa for a best friend's wedding and Clare, fresh from dropping the kids off at her parents, was sitting on the aeroplane waiting to start taxiing, when her name was called over the tannoy. Thinking she was about to get an upgrade, she got the shock of her life when greeted by a policeman who said,

"Mrs Church, your son is in hospital, please come with me".

You can imagine how she felt. Jake had fallen through the landing bannisters and fallen directly onto the second step at the bottom and bounced onto the first step where a metal strip for the dog guard did its best to give him yet another scar. A horrible accident and taking the call in Cape Town made me feel utterly helpless and I spent the next few days experiencing the mixed emotions that occur when you're away from your nearest and dearest, unable to help at the same time as being with great friends on the happiest day of their life.

Anyway the important thing is that Jake is fine and after some time in hospital, x-rays and regular checks all he's left with is a slight scar which ought to fade with time.

Things are, however returning to normal, the boys are sleeping more consistently (although still not fantastic) and life as a four piece is taking shape. For instance, I also remember thinking a few years ago, how nice it would be to be able to watch a film with Jake. And yesterday our afternoon saw us all in the lounge with a roaring fire, Cars 2 on the bluray player, Clare writing Christmas cards, Freddie playing on the floor and Jake snuggled into me smiling at Lightning McQueen. Granted, Freddie started screaming and Jake wouldn't sit still, but for a good 10 minutes it was the perfect family scene. And it's important to acknowledge, if not cherish, those moments as they can easily flash by and before you know it, your kids have no innocence left and they're busily slamming doors screaming that they hate you.

So it's hard to believe that this is Jake's 4th Christmas and this year, he's fully aware of what it means. He's very excited as you can imagine. Especially when Clare uses her iPhone app to get Santa to call and talk to him. And tomorrow I'm going to his preschool to see his first nativity play where he's a shepherd. O.K, I'd have preferred Joseph, but a shepherd is a weighty part and at least he's not a sheep or a tree. I'm fully expecting him to come over all shy and maybe not even get involved (he refused to play football when I took him to Little Kickers) but all the same, I'm pleased I'll be there. My dad definitely wouldn't have been at my nativity!

Christmas is all about kids, including the big kid in us. My parents have spent most of the year in Dubai and I've missed them a lot, more than I thought I would, and we're all spending the day together and I can't wait.