An oddly decent week

Well, the itv north east news thing went well. I only looked like I had 2 chins not 20 which is always a bonus. And feedback from friends, acquaintances and relatives has been overwhelmingly positive :)

We had a ventilation clinic appointment where a consultant who usually only sees Nate when ill seemed very pleased with him. We have to crack on and get him off oxygen during the day apparently! So Nate is down to 0.1 and doing well. The dr also wants a sleep study next month to try Nate off his ventilator at night ( under strict supervision). This terrifies me but it is a hint of progress and therefore a good thing!

Thea was a lovely innkeeper in her nativity. She cried on Monday as she couldn't see my mam and the mil, the head teacher tried to comfort her saying " shepherds don't cry" at which Thea replied "but I'm not a shepherd I'm an innkeeper!". This conversation was repeated by the head at the nativity Tuesday when we were there as an example of how confident and sure of themselves the reception class is!

I got the CCN team to chase up nates kidney results- all fine we can stop the antibiotics.

A phone call from the children with disabilities social worker to say we have been granted 9 nights respite ov the next 3 months at st oswalds. It's something we need but now I'm actually a bit apprehensive about leaving him.

Finally the SN pushchair ( bug) has been fitted with clips for the oxygen so I can actually use it! Whoop!

So now what we really need is 2 healthy kids for Christmas, and maybe a house

Hey....Santa?

The importance of SWAN, and many water analogies

So tomorrow there is an awfully big chance that I will look a massive tatie on TV. I took the opportunity to talk about Nate being undiagnosed on ITV North East and the impact of SWAN UK. It's being shown tomorrow. And all over the country local news will feature an undiagnosed child from their area. Videos of 2 families are being shown on Daybreak, and hopefully the gorgeous Eiden makes an appearance on Daybreak, if he's well enough. Though this shows the unpredictable health of our little swans. If this doesn't raise awareness I don't know what will!

When Nate was first born I was desperate for support. And, to be frank, there wasn't any. No one could tell me about life with an undiagnosed child, though at that stage we were expecting a diagnosis, and I don't think we were even aware you could be "undiagnosed". I tried setting up an online support forum. We got a few members, but I was a bit clueless as to how to get people onboard who were in a similar situation. I didn't know how I could reach people. Then SWAN UK reactivated. A lifeline. Finally people who understood. People willing to talk openly about their experiences. New friends. I can't explain what it means to me to be able to check FB or twitter and see what everyone is up to. To read their stories, laugh and cry with them. I often feel my family are on a boat, floating, just about. On occasion that boat develops a leak, we panic, then plug the gap. Support from every source available helps plug that gap, and SWAN is one of those places.

And that, my friends, is why I dont mind looking a tatie tomorrow.
Xoxo