Thursday, 13 May 2010

Cleft lip and palate

You may have just arrived here having seen my Google Ad. If so, perhaps you've just found out your baby will be born with a cleft. Or perhaps your baby was just born with a cleft lip and / or palate. Here's what to do:

1. Don't panic - you will be absolutely fine. I promise.
2. Go to the very first post of the blog - May 2008
3. Read and relax!

If you want any advice from someone who's been there and got the t-shirt, leave a comment or email me at jamesfernie at gmail dot com

Once again, you will come through this o.k, there's so many worse things that could have happened and your baby will be / is beautiful anyway. I don't mean to be flippant and perhaps you won't agree with me until you've been through it all but pretty soon you'll look back on how you're feeling right now and be able to see it all in context. If I can help, I will.

Good luck.

A new blog

It's been two years since I started writing this blog and I've loved doing it. For many reasons it's been a useful exercise. I won't cover them all but by far, the comments I've received from others in the same situation have been what's made it worthwhile. I'll keep it going on this address for all things Jake and cleft related but for everything else the new place in town is I've decided to install WordPress on one of our servers as it's much better (IMHO) than Blogger in terms of choice of design and its interface.

This blog is obviously supposed to be quite specific, a niche subject and all, and of late I've felt that telling you about my kitchen and the like is moving away from the subject. Perhaps it kept things more light hearted and helped bring some context to the whole cleft episode but I'd rather keep things separate.

So nothing's really changed, I'm just diversifying my ramblings.

No one really reads the crap I write anyway!

Wednesday, 28 April 2010

Kitchen. Done.

Thank **** for that! Five weeks doesn't seem long until you live without a kitchen for that time. Also when your house is full of dust and mess and general building miscellany, you develop a sort of tic which doesn't go away until it's all sorted. The kitchen is perfect, or rather as perfect as a long and narrow kitchen can be. The bit at the end which opens up was the best part of the idea, it creates a destination so that the kitchen is a room to be in as opposed to purely a functional space. (God listen me, I've gone all Sarah Beeny!).

Fortunately the original work top had been cut too short so I did a deal to buy the useless bit and we've made a breakfast bar at the end which goes above a radiator. Another piece of genius created out of a mistake. The bar stools arrive today.

We're now in a predicament as to what to do with the loft. We have a 6-8 week window before the builders need to be off working on a major four house new build project and unless we start almost immediately they'll have to bugger off half way through. The problem is that in my naivety I applied to do the loft under planning permission. When you do this, in almost every instance, the planners make you scale down your plans. Because we'd already paid the architect I decided to capitulate and just get the planning through, based on a) at least we'd have some planning permission which we could sell on with house and b) we probably couldn't afford to do it anyway. It turns out however, that to do the simple loft which creates a small bedroom for Jake and a family bathroom using just the existing roof space (and therefore not needing PP) looks now to be impossible. We just haven't got the space up there to get the stairs in to allow a separate entrance for the bedroom AND the bathroom. There's no point in making it an ensuite as a) it's a single room - doesn't make sense - and b) we'd still have a bedroom downstairs without direct access to a bathroom - not sensible developing - so, I can either start work, apply to do the larger box dormer loft conversion and hope on hope that the permitted development consent comes through at the exact time we need it to OR wait until the boys finish the new build project.

Given that the overall plans for the loft centre around the potential to put a new baby somewhere and the knowledge that building projects ALWAYS take longer than anticipated, this could seriously affect things.

We could just create one bedroom in the loft within the existing pitched roof which would be a decent sixed double but then we'd need to cut our existing bedroom in half to make a corridor and turn our existing ensuite into a communal bathroom. I quite like this idea other than the fact that it involves building work on the first floor and therefore all the mess and disruption that goes with it.

I think that we will probably ask the architect to submit new drawings and get the builders started....this way most of the work will be done and we can then take a view on whether to build the box on the back or build the corridor downstairs, or budget allowing, both. It'll just be the difference between having two bathrooms or one and in a 3 bedroom house, 2 is a luxury but 1 is the norm.

Decisions, decisions.

Here's the kitchen. Good innit?!

Thursday, 22 April 2010

Jake, the little genius

Perhaps I'm biased, but I always new Jake would be miles ahead of others his age. When he's taken up a year or two early at school I won't be surprised in the slightest. He's almost certain to excel in everything he does. It's all down to exceptional genes of course.

I think I might be getting a little ahead of myself here. Let me explain. On Tuesday, we went for the next check up with Ann Young (the original cleft nurse who we first met less than a day after the 20 week scan - the scan which precipitated this tome) and the speech therapist. This was a general check up and also the first real chance for the therapist to see how Jake's speech is coming on and to see if any actual therapy will be needed.

We're much more relaxed about everything now and don't really think anything of the cleft's implications much at all. Of course there's still some way to go, at least one more operation for a start and the possibility of bullying etc, but in the main, Jake is just a toddler like any other. So, whilst somewhat blase, we're happy in our ignor-ance of the subject.

Jake's 20 or so words, some perfect, others not really words at all, apparently put him in advance of others of 19 and a bit months. Naturally. His height is similarly advanced and his weight matches his stature perfectly. So, it went well and we left feeling pretty good. The next meeting is 6 months from now and the therapist will hopefully hear him say some of those words...she told us to relax and not try to get him to say stuff - something I am definitely guilty of - but just to read with him, use the flash cards, pronounce the words but not to pounce on any new word he might say and beg him to repeat it. It'll come when he's ready.

A friend of mine had a boy who said nothing at all and when he got to two years old, he started to worry. My friend was pushed from pillar to post and had to fight reasonably hard to find anyone to help...the system seems to deliberately take a similar amount of time to kick in as it does for a child who previously didn't say anything to suddenly decide to talk. The point being that the vast majority of us start talking at some stage and if we don't there will be a pretty serious underlying problem which speech is perhaps the least worrying factor. Jake won't slip through that net though so it's good to know he'll be monitored.

One thing, speech aside, which is worrying me slightly is how others will see Jake when his face grows up a bit more. Aside from a slight Elvis curl in his lip, I think the repair is faultless. You can see something on his top lip but in the main it wouldn't cause you to look twice. One side of his nose has a very small variation on the other but most people aren't symmetrical so it's really no big deal. However any imperfections will surely become more noticeable as he grows and it'll be interesting to see how they affect him and if they give him more of the 'clefty' look that many people associate with all of this. I've said on here before that some repairs look better than others and that some people tend to have that squashed down nose look which might well cause a second look. If he gets that will we even notice? As far as we're concerned Jake is the best looking kid in town and always will be but I don't want our blindness through love and constant contact to veil our perception of how others might see him and the implications thereof. I'm sure he'll be fine and others do see him as we do but I remember being teased about having big ears and my parents always told me there was nothing wrong with my ears, as if to easily detract from my paranoia - I don't want Jake to feel like I did, that my parents didn't understand - it's a big deal when you're 8 years old and your peers are taking the piss. You don't have mortgages and job security issues to worry about but your problems still seem like the most important thing in the world.

This is rambling too much so I will stop but for now it seems like Jake is getting on swimmingly and is still likely to become the genius I always knew he would!

Friday, 16 April 2010

What a difference a year (and a bit) makes!

Nothing more needs to be said except thank you, thank you and thank you to Mr. Piet Haers, Jake will never be able to say thank you enough for your amazing handywork.