Professor Piet Haers and the cotbed

Sounds like a fairytale that title. Maybe it could be about an evil professor who lies in wait under children's beds until they fall asleep so he can poison their tiny minds. Until one day he picks the wrong bed, a cotbed. A cotbed of a very special child who finds the professor's weakness and defeats him and lives happily ever after etc.

Too much wine last night. Back to sanity then.

We finally got the call from the main man, the guy who's going to fix the cleft(s). Well his PA called us as his hands are restricted to more important duties. Normally when secretaries or PAs call me only to put their boss through it makes me want to hang up or at least tell them I'm not prepared to talk to someone who feels they are so important that they cannot look up a number and push 11 buttons. It really winds me up when my solicitor's secretary calls me that way to announce who she's got on the line for me especially considering his bills. When you're paying someone by the nano-second, the last thing you want is to pay for the solicitor to press a button on the intercom to say 'er Jean, please could you get me Mr Fernie on the line' and for her to reply, '...no problem David, I'll patch you through' and for her to then look up my number and call me and subsequently put me through. Surely it takes less time to call me direct in the first place. Someone should buy him a Roladex for Christmas.

Anyway in this case I'm happy for him to preserve his prized assets so he can work his miracles on CP and I don't resent him at all. In fact after this experience I don't think I could resent any doctor or nurse or specialist regardless of what they'd done. Apart from Harold Shipman of course.

So we're going to see him next month (better late than never but he does come down to Guildford to see us which is a nice touch)to discuss the operation and add to our cleft knowledge (more of the Zulu principle). So then we'll know how the cleft is formed, what the initial consultation process is comprised of, how the lip is fixed, how the cleft is fixed, time periods and ongoing support and all in a period of just 3 months. It's amazing how much information you can take in when you have a genuine interest but we still won't know why and probably never will.

What's funny is that to help us they've put the appointment to see him an hour later than our next scan at Royal Surrey. As if we'll make it!

Separately we went to Mamas and Papas last Sunday in sunny Staines to look for a cotbed. Mamas and Papas is an aspirational brand for people who look down their noses at Mothercare and hand-me-downs but they do do some cool stuff and if you're a sucker for that stuff (as I am) then it's an o.k experience as shopping goes. Why they put it in Staines is beyond me; the majority of other shoppers were either pregnant teenagers or parents of babies with earrings. Nice.

So we choose the Horizons range cotbed which should see us o.k from newborn to 4 or 5. Thanks mum. The generosity starts to get embarrassing but is most welcome all the same.

I mentioned I'm a sucker for brands and nice designs, so naturally I have to have one of these for our baby. It's called 'The Loop' and it's basically a high chair but a very, very cool highchair. Totally ridiculous at £200 but it's lime green for goodness sake, how can I not have it!

You Tube rocks!

There's so much stuff about clefts covering everything from student theses to charity promotions but I like this guy. It's his 'fuck you' address to the nation and it's the type of video I'd post if I'd been in his situation. It's heartening to see adults and how they've got through life. O.K he could probably do with a nose job but doesn't seem to care and his operation was a long time ago. Anyway here it is;

Video

This is a reasonably good video which explains much of what I've already written about. Although it's 9mins 52s long it stops at 7 mins so don't sit there waiting for something to happen for 2 minutes and 52 seconds like I did.

Good News?

So the scan went well and we only had to wait 30 minutes. Still too long for an organisation entirely based around appointment setting but I can do half an hour if I must. Anyway chickpea was not in a cooperative mood and had HIS/her hands covering the main attraction and it was very difficult for Ms. Hutt to view the source of our worry without wobbling Clare's belly as if she were working a pneumatic drill. Eventually she did catch a glimpse of the cleft and reported that it hadn't grown in line with the rest of the baby, which is good news.

The baby's weight has doubled since the last scan to 4 pounds 2 ounces which is scarily close to the eventual likely birth weight. I was six pounds something so it hit home that this blighter is definitely on its way. Although I moan about all the scans we're having it is good to keep an eye on things and see how everything is developing. Clare went to her 'dunk your bump' swimming session last night and met a couple of other expectant mums and one had mentioned that she'd had a third scan as the second failed to spot everything and another mum had remarked how lucky she was to see everything again, not an apt moment to mention that we'd just had our 7th!

Back to the scan then. Clare asked Ms. Hutt (who, I'm relieved to say was wearing engagement and wedding rings this time) what the additional scan were for. We had previously assumed that it was just a routine thing for cleft babies, however we were told that she was looking for a build up of fluid in the mouth area which would suggest that the baby was having trouble swallowing. Trouble swallowing usually suggests that the cleft goes all the way from the gumline through the hard palate and onto the soft palate. Trouble swallowing also tends to suggest trouble feeding which has been Clare's major worry.

There is no fluid. Hooray!

We've long stopped counting our chickens but this does look like the potential for good news. If the soft palate has a cleft there are lots of other issues which could affect the child and early adult such as speech issues, a slightly enlarged upper jaw and more operations etc so fingers crossed that chickpea just has the lip and gum cleft and at worst a bit of the palate.

Good days and bad days

The blog it seems, has travelled much further than intended. Initially it was just a way for me to empty my head in the first few days after finding out about the cleft. Then it was a way of letting people know the news and to help friends and family understand the situation and raise awareness of the actual medical 'condition'. I hadn't expected it to travel to friends of friends or to complete strangers but it does seem that everyone I know and quite a few people I don't have read it and it's quite comforting that it's done its job. I don't know why it should surprise me that people want to know or care about the situation but it does a bit.

Anyway aside from comments I've had to date, my recent trip to Formentera for a fantastic wedding showed me that many more people were aware of the situation than I'd thought. People I hadn't seen for 10 years weren't surprised at the news and people I'd not met before had told me they'd read this blog. Weird.

Met a nice couple who'd been brave enough to bring along their 3 month old baby and managed to enjoy themselves despite all their friends telling them they were mad to travel with a baby so soon. I admired their attitude that life didn't stop because of a baby and if their friend was getting married, they were going. Good for them. And they had the Quinny Buzz. Obviously proper people. Also obviously, we still haven't ordered ours yet!

Another couple who have the Buzz invited us around to see their 3 month old baby last night. These are probably the only people who don't know the news and we debated on the way if we should tell them or not. We decided not to, not because we're ashamed or embarrassed but we were going there to see their baby and the evening wasn't about us and we didn't want to cause any sort of downer. It did have an effect of us afterwards though. This couple are lovely people and very successful and have, it has to be said, a beautiful baby. The birth was a breeze and life just looked so wonderful. I honestly don't feel anything but happiness for them but it made us reflect on our own first 3 month experience and we felt sad when we got into bed. It's totally ridiculous that we still have down days, I think we've coped remarkably well and definitely have at least 75% goods to bads but little things here and there spark a bit of worry, anticipation, sadness, whatever and it gets you down.

Since coming back from the wedding I've started a fitness plan and am trying to be a bit healthier. I've definitely let myself go this year and think that I've subconsciously allowed it to happen on account of the scary promotion at work and the problems with the pregnancy but I was determined that the 5 day break was a watershed between an unhealthy partying lifestyle and a more moderate and positive one. Anyway I'm only two days in so I won't get carried away!

We have yet another scan this afternoon and joy of joys it's the last one of the day so I'm sure we'll have a nice long wait. I suppose I'll get my fill of baby mags though and I'll try not to annoy Clare too much when I get bored!