Wednesday 28 November 2012

Cleft checkup

This weekend, I had the pleasure of four days with my beloved children. All to myself, how wonderful. *needle scratches off record*. What I mean to say is, last Friday I had to take a day off work in preparation of a four day single parentathon whilst my wife swanned off to Dubai to a friend's wedding. When the wedding was announced I'd just got back from the wedding I went to in South Africa last year (the one where Clare was about to take off to meet us but Jake had an accident and she had to stay - that one) and it was just too expensive for us both or all to go to. Normally when she goes away for a weekend I decamp to my parents' place, but they also went to the wedding. Ditto my sister. And as Clare's mum does a lot of baby sitting already, I didn't want to ask her. Anyway, so it was just me and the boys and to be fair, they were great. I made sure they were entertained every day and apart from the Monday (which I also took off work by the way) they behaved impeccably. It was my fault for thinking the ordeal was over sooner than it actually was and I let them watch TV all afternoon; an activity which is certain to turn them into Tasmanian devils. Not great when you consider I was trying to paint the kitchen at the time. The point of this is that one of the duties I was left with instructions for was taking Jake to see Professor Haers for his annual checkup. That in itself was something of an accomplishment. I know I'll not get any sympathy from any mothers reading this but for someone whose normal routine is get up, shower, breakfast (maybe), leave, the task of getting both kids up, fed, milked, dressed and out, before getting through rush-hour and parking at a hospital in order to be on time for an appointment, is quite impressive! We went in and I'd forgotten the size of the team we'd originally been given and, having expected to see Prof H and maybe Anne, it was a shock to see all seven of them before me. They were all there, the psychologist, dentist, orthodontist, speech therapist, surgeon, community nurse and one other whose profession escapes me. I took this in my stride as I'd got used to how amazing the set up is for kids and the issues they get born with. Jake, however, found it a touch daunting and went into super shy mode and was curled up in a ball and wouldn't look at me, let alone the audience. Professor Haers wasn't bothered though, he didn't need to see or hear Jake and was happy the shyness was 'age appropriate'. They asked me a few questions and whether I had any concerns at all and also weren't worried about the slight lisp I reported - apparently this is very common in kids, cleft-affected or not. So, this post is much ado about nothing. More to say that we're free for another year. Next September or so we'll go to Guys for a photo session and another chat and the year after we'll be back at Royal Surrey to discuss the operation to graft a part of Jake's hip onto his gum. Sounds pretty nasty and not something I want to worry about for a while. As always, if you're here having recently found out that your son or daughter will be born with a cleft or indeed, that your child has just been born so, then please go back to my first posts around May of seems a long long time ago but I can still remember how we felt our world had been turned upside down, wondering how we'd ever feel like we do now.

Wednesday 12 September 2012

Jake is 4

As these posts get fewer and further between, the less perhaps relevant they become to the people who turn up looking for information. As I wrote once before, we saw loads of photos of kids who'd been born with a cleft lip but because they were 4,5,6 or older there was no context as we were expecting a baby, not a child! I suppose it is useful though to see how a baby with a repaired cleft turns inevitably into a child with a repaired cleft. I'd like to think I'll be doing this to the point where I can show you what a teenager and then a man looks like after having been born with a cleft. Anyway, Jake recently underwent a very small surgery to unblock his ears and to insert grommets. This is to overcome glue ear which is very common in cleft-affected kids...whilst it was performed under general anaesthetic he was knocked out, operated on and awake again inside an hour and I can't tell you the difference it's made to him and us. Although Jake would often ask 'what did you say?' when we'd clearly said something loudly and he'd curl his hand to make a sort of ear-horn, we really didn't grasp how bad his hearing had become. Almost instantly after coming round from the op he said how much louder and clearer everything was and was clearly very happy about it. We no longer have to call him for his tea umpteen times before getting angry at him. We feel a bit guilty about that by the way! It's a bit of a pain as he can't get water in his ears, so we're using cotton wool until we have his ear plugs made up. Anyway, hopefully there won't be any other operations before the one we know about when he's 8 or 9 but it's another hurdle cleared for the better. Jake turned 4 last Saturday. which means I've been blogging about him for 4 and a half years.
Where the hell did that go?!

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.