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 on....it 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!
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4 comments:
Hey Im new to this whole blogging thing, and i stumbled across your blog while trying to find information on babies with cleft lip and palates. We are expecting our first child in july, and we found out at our 20 week ultrasound that he has a unilateral cleft lip, and some damage to his palate, but we wont be sure the damage until he is born. Hoping to find all the information i can.
Hi there, feel free to ask anything you like, always happy to help if I can. good luck, you'll be fine I promise
James
I have a 2 1/2 week old with a bilateral cleft and palate is affected? any tips or advice?
Hi - well I guess it depends...are you in the UK? If so, I have the experience to say you'll be 100% fine and arguably, you won't get better treatment anywhere else on earth. HOWEVER from all the emaisl I've had from people around the world and in particular the US and Australia, you'll be just as well looked after.
I think the main thing is to focuss on having a child and not a child with a cleft lip and / or palate. Remember they are no different, they just came out with a couple of VERY fixable issues...have a read through the blog to find the parts around the operations Jake had to get a clearer of what's involved and how you'll feel (look at Jan 2009 and July 2009)...I'm not saying it won't be upsetting and hard work but it's done so quickly in the great scheme of things that before long, like us, you'll see it all in an easier context than right now.
Anywa, good luck and let me know if you need any more specific advice.
Take care
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