Wednesday 22 July 2009

Result!

Jake got the all clear! Perhaps I was wrong to be a pessimist after all!

Prof Haers had a good old look in Jake's mouth and is really pleased with the healing process, couldn't see any sort of abnormality or failed repair and has effectively signed us off until Spetmber 2010. We spoke about the sneezing and the food coming out of the nose but he said that as long as it was the sneeze that was propelling the food and not the lack of palate being in the way, it wasn't a problem. The fact is that he only had the operation 5 weeks ago and so things are still healing, repairing etc and therefore it is likely that his food will be irritating him a bit, hence the sneezing. It's been a while since food came out of my nose but I remember a good sneeze is what caused it.

So it seems that we're genuinely at the end of the significant part of the surgery process and the next one won't be for at least 7 years, which is very long time away.

We have to keep his teeth as clean as possible with regular (free of charge) dentist check ups which is just the same for any other kid. Also we'll be seeing more of the speech therapist starting in around 6 months time. This is another very important part of development but at least it doesn't involve a scalpel or waiting around in hospitals for days on end. Also loads of kids have speech therapy, I know of one right now who is two and hasn't spoken a word yet. He will, of course and that's what the system is there for; because we're all different and do things in our own good time.

I had Jake to myself yesterday afternoon as Clare had to work and it was good fun mucking about with him, he's becoming a real laugh. I found a spot on his shoulder blade which makes him laugh uncontrollably and exploited it to the full. He's crawling everywhere now, (although still doesn't realise how much quicker it would be on his hands and knees than dragging himself along) and I reckon he'll be walking in a couple of months. Perhaps in time for our next trip to Spain.

We're going to Spain with Sarah, Hamish and Sadie, who had her christening on Sunday and I cannot wait. It'll still be a different trip to the old holidays we had there but it's going to be nice to go a) with friends b) when the weather will be good and c) when Jake is easier to manage / transport. There'll be no sterilising, no formula, longer sleeping patterns (Sadie already sleeps until 8am) and we can all have a good laugh together.

More soon.

Tuesday 21 July 2009

The moment of truth

We're off to Royal Surrey this morning to meet Piet and the team for the 6 week check up following Jake's cleft palate repair. I am convinced that some further surgery will be required but am hoping upon hope that none will be and that everything is healing nicely. Other than being what some would describe as a pessimist, but what I would describe as a realist, my reasons for thinking this are that food is still coming out of nose when he sneezes after eating and there is air escaping down through his nose.

We can't see a hole but the professor did say that Jake had a short palate when he brought the sides of it together and that he managed to lengthen it. So basically there is a bit at the back of his palate which actually wouldn't have been there if he hadn't been born with the cleft. This is the only part of the repair which is fabricated. Not fabricated in as much that anything has been added but that it has been put into a position which it has no right to be in. And therefore, perhaps this is the most likely point of failure in the whole process.

Maybe I'm worrying unduely (and I hope I am) but I like to deal in science and high percentages, I'm not reallly a gambler and err on the side of caution so, it seems to me that it's more likely than not that this is where the problem will lie, if at all.

A short palate may not mean more surgery of course, it may just need some speech therapy and coaching. In fact more surgery will only be required for developmental or social issues which a fistula (small hole) or short palate would cause. Of course, food coming out of your nose when you eat would be considered a social problem - I can't imagine the kids at his school turning a blind eye....anyway we'll see and I'll report back when we know.

On a brighter note, Jake's sleeping is getting much better. As regular readers will know, I like to moan about his sleep pattern so it's only fair to inform that he has been going through until 5.20am worse case and, like at the weekend and this morning, 7.20! That is very nearly as good as before he was born. I'm not anticipating the need for an alarm clock again just yet but it does seem that after 10.5 months of disturbed and deprived sleep we are nearly there.

Lastly, a momentus occasion last week saw Jake at a barbers having his very first haircut. Clare resisted until the last moment but when even her brother mentioned that his curls were getting out of hand, something had to give. We kept some of his mop for posterity, but here's a picture of his smart new hair cut!

Friday 17 July 2009

Kari Callen - The next Susan Boyle?

Just seen some guys Tweeting about this. It seems the subject of cleft lips and palates are going to be getting some high profile exposure if this lady gets further in the competition.

Kari Callen was born with a bilateral (up both sides) cleft lip and palate. Hasn't done her voice any harm!

Cleft lip and palate

last one, I promise!

What is a cleft lip and palate

see below, further apologies

Diagnosis of a cleft lip and palate

Indulge me here, just doing some Googly experimentation

Wednesday 15 July 2009

3 years on

Today is our 3 year anniversary. A lot has changed in 3 years. We got married on Saturday 15th July, 2006 at St Mary the Virgin church, Headley and the reception was held at City of London Freemen's school in Ashtead. Truly it was the best day of our lives, the sun shone, the wine flowed and I'll never forget it.

Everyone gives you advice for your wedding day but the one piece of advice I'll never forget (even though I forget who gave it to us) was to step back and take it all in. It goes so fast and if you don't stop and have a look you can forget so much of it. We made several conscious efforts to stand together and just look at the crowd, take in the laughter, conversation and general merriment. I made myself take mental photographs and the one I remember most vividly was as we were walking back down the aisle. Because we were at the front, obviously, with our backs to the crowd, it wasn't until after our nuptials that we turned fully to face everyone. I remember seeing all the hats and dresses and ties and thinking what a brilliantly coloured scene it made.

Another highlight was walking into the reception to rapturous applause. Since my more exuberant youth I am not so much of a limelight seeker and Clare even less so. We worried about feeling too much of the spotlight on our wedding day. Not only did that not bother us, we were pulled towards it willingly. When you're looking your best and every single person in the room is happy to be there, happy to join in and share your day, you just can't help getting a lift from it and really taking advantage.

I even enjoyed my speech. Despite the comment about shirking the limelight I don't mind speaking in public. I used to hate it but years of presenting to clients gives you the confidence to deliver to a crowd. Plus it's a million times easier doing it to a load of friends already well into the hospitality. By the time I was toasting the best men I almost didn't want my turn to end.

The best men speech left me suitable roasted, culminating in a story which I won't go into here other than to say it involved a small French apartment, a baguette and a story I wish I'd never shared.

Most weddings see me rather the worse for wear and I'd told myself to behave, what with being so on display an all. I, for the most part, obeyed and outside the three glasses of red wine I downed prior to my speech, stayed remarkably sober all night.

Simon, our chief usher did an impromptu karaoke set with the band culminating with a brilliant rendition of Mustang Sally and even I danced all night.

I've never smiled so much in one day. In fact it was the day that I learned properly how to smile for the camera. Photos before then always showed me scowling when I thought I was smiling. When you put on a smile it feels really fake but actually looks like a smile. Crazy I know!

We were talking in bed last night about the day and how it was the best day of our lives. We felt bad that it still feels like the best day despite having been through a much bigger day in the last year. Jake's birthday was probably the most significant day, certainly the most anticipated day and easily the most emotional and important day of our lives but our wedding day will always be the best day we've spent together.

It did have a sad flipside as many of the people at the wedding were at another church the day before for the funeral of Mickey, my dad's best friend and a man who was like an uncle to me. It still makes me sad when I think about him and how someone as good as him could be taken away so young by such a horrible illness. I hope he was looking down on Clare and me that day.

R.I.P













Tuesday 7 July 2009

An interesting weekend

I feel a bit like I've just been 12 rounds with Tyson. Actually worse than that, Jake could have Tyson, no sweat.

This is all a bit dramatic I suppose, it was only 3 days and we're both still alive but it was hard work. I think that women reading this are more likely to think 'now you know' rather than 'what's all the fuss about?'. That's because looking after a child, or rather, a baby, on your own whatever your gender is not easy for a day, let alone a weekend. Yes, Clare does it everyday but she does get some respite when I walk in and take over and then we get to spend an evening together.

I had a few plans for this weekend but for one reason or another (mainly hungover friends and yet another bout of man flu) they didn't happen, so, whilst I went out to town, the park and to show Jake his granddad's model aeroplane, I talked to remarkably few other humans. The only talking was via a series of high pitched, overly enthusiastic questions, which seem to be the only way babies get spoken to.

*high pitched*

"is that your tummy?"
"are you a clever boy?" (standard high pitched response is "yes you are, yes you are!"
"do you want some food?"
"where's your mummy?"

...repeat until insane.

I found myself most bored when indoors and wishing the weekend away and less so when I got off my arse and went out. Seems obvious but it's easier to stay in and wait for him to sleep, wake up, eat etc but time goes a lot quicker outside. So we went to the swings, played a lot, ate a lot and had a good time together.

Jake is crawling now, well army crawl, he'll be on his knees this week I predict and can pull himself up onto the furniture. I discovered this when I came back from the kitchen with a drink to see he was on his feet. Felt a bad parent, thought I'd left him in the safety of soft play items, however in the blink of an eye he was on his feet. No harm done and he'll need some knocks and bruises to toughen him up and help him learn that going face first into wooden shape sorter blocks isn't such a good move.

The crying is a pain but it gets me more frustrated when Clare's around as I know she'll be able to solve it if I can't. When you're your only option you just get on with it. That said yesterday afternoon was testing me to the limit. I had two hours to go until bedtime (when active duties were over) and he was hell-bent on screaming down the clock. He'd slept, drank milk, had his nappy changed and wasn't poorly with anything yet was screaming to the point where no noise came out of his mouth. When it's this ridiculous, the face he pulls is almost humorous but you can't sit there laughing at a screaming baby. Anyway we got through it and it was a rewarding experience. For Clare that is, she had a lovely, well deserved and overdue break.

Here's my Facebook status update from 'yesterday at 16:55' (just for you BC!)