Stir it up Sunday!

Sunday 21st November in the UK is known as stir it up Sunday. It's the traditional day for preparing the Christmas pudding - yummy! When you're busy collecting all the ingredients together, it's traditional to say a prayer to ask God to stir up our lives so that we may become more fruitful in doing His work. All the family take turns stirring the pudding and everyone gets to make a wish.
A lovely tradition - which I'd never heard of until I read my BBC Good Food magazine last month! My family weren't that big on tradition, in fact my family weren't that big on family!
It's enough to say that over the years I appreciated having the opportunities to create my own way of celebrating special occasions. During my years in the RAF and then moving on my own to the Netherlands this open spirit helped me feel at home wherever I was. I love celebrating birthdays and Christmas. Imagine how much I love the Netherlands where everyone turns up for your birthday and I get 2 days to celebrate in December!! SinterKlaas and Christmas - hooray! I'm in holiday heaven :) I'm so excited. I swear that sometimes I can't sleep at night just imagining all the gifts I want to buy and food I want to cook to celebrate.

Last year was, out of necessity, a quiet celebration. Noah was still in hospital, our house was up for sale and we were in the Ronald McDonald house, there was no proper Christmas tree in our room. I did my best to adapt to the situation and I must admit ICK 1 had the most tactastic Christmas tree they have ever had, complete with green frog dressed up in a santa costume as a the fairy on top of the tree, well it was a tree frog! It brought a smile to the kids faces in that scary room so in my book it was a success.

So this year I want December to be the best SinterKlaas and Christmas ever. The cake is baked, actually it's been baked since June, so it's spent the last few months marinating quite well in whiskey, sherry, brandy or whatever booze I have at hand to add each month!
The mincemeat was cooked 2 weeks ago and is patiently waiting for it's pastry crust to complete itself as a traditional mince pie. This Sunday I decided to join all the traditionalists I've read about and began our Christmas pudding. Everyone got to have a stir and on Monday, after 8 hours of steaming, my pudding stands proudly in the spare bedroom waiting for it's moment of glory on the 25th of December. The Christmas cards are lined up neatly in their boxes next to a new pen - no running out of ink for me! I'm looking forward to sending them, but not the writers cramp from signing and addressing them - oh well, they do look so very splendid hanging up, so it's worth every twinge I suppose.

This is my perfect moment. This is the time when I can still imagine that I'm prepared. I'm so enjoying this moment. Lets just stay in this moment ..... please!

You see from now on the days start getting shorter and shorter. Up until now I've been imagining the gifts ... but I still have to buy them. I have to wrap the gifts ready for posting and then make the time to take them to the post office. Pretty soon, before I've taken a breath, it will be the last posting dates for Australia then America. Oh no! now it's the last date for UK and finally too late even for the Netherlands. Aaaaargh!
OK, I'm going back to my perfect moment. All will be well. Breathing in .... and breathing out.

This year feels special.
Noah is going into hospital on the 8th of December. (I'll come back to this). Our house was up for sale and is now sold. We should be experiencing deja vu but it feels a bit different this year. Last year everything was so unknown, so frightening, it felt more like balancing on a knife edge. This year Noah has been home for 10 months. We've gone through the hard stuff and we're still standing. Noah is doing so well, he's amazing us and all of the people that take care of him. The really great thing is, now he has the right food for him, he's like the loving little boy we knew and had missed for so long. He's got so much energy now, he smiles all the time and is much more physically active. He's even started eating on a regular basis.
This year feels special because we've done it. We brought a sick little boy home from the hospital. We didn't know what to expect but it's turned out even better than OK, it's turned out great!
Our home is sold and a new couple is ready to take over, but this time we're ready to go to a home more suitable for Noah's needs. We've loved living here, but it's the right time to move on.

When I read about 'Stir it up Sunday' it touched a chord inside me. Our lives have certainly been stirred up, but we're standing stronger than ever and we've learned so much and experienced so much kindness and generosity from people.
It's been a really special year; although this won't stop me praying for a less interesting 2010!!

As I mentioned earlier, Noah is going to hospital on the 8th of December. The ENT (KNO) doctor will take a look at Noah's blockage and lungs to assess the changes and condition from last year's inspection. As this will be done under anesthetic, it seems an opportune time for his PEG sonde (a stomach feeding tube) to be placed, one of his testicles to be lowered and a biopsy taken from his colon. Quite a lot for one little man but better than having to go repeatedly under anesthetic, which always holds a risk. This is all a positive step forward. Since Noah is regularly trying foods, it will be great to get the feeding tube out of his nose and throat, as it makes it terribly uncomfortable to swallow when it's there.

So our lives continued to be stirred up. The hospital trip is another step forward in Noah's progress. Our previous posts haven't really gone into what we're busy doing with Noah, so that's why I'm writing so much now. Noah is finally getting the right food, it's amazing to see the difference this has made in his and our lives. He no longer suffers with the agony of wind cramps. No more explosive diarrhea. He finally has the right intake of calories and fibre so he now has energy. His progress is coming on in leaps and bounds now that he's no longer suffering.

It may seem a bit weird to be so actively involved, but Noah's development was hugely interrupted by his long stay in hospital and by his physical condition. So the normal progression and development didn't happen, things that would happen automatically now have to be encouraged. The toughest part I find is knowing when to stand back and let Noah work it out and when I should be encouraging. No one seems to have a good answer so I just fly by the seat of my pants and that approach seems to work!!! ;)

We're blessed with a great support team, we call them the "ists", ( physiotherap-ist, ergotherap-ist, logopod-ist ... you get the idea) , but that's only an hour every couple of weeks. Due to the fact that we have so many different people working here, we need to have a schedule. It would be very easy to turn his exercises into a strict regime but we REALLY don't want that! We want it to be fun and spontaneous. Something we can work into the moment, but in order to do that we need to understand the ideas and methods behind what we're doing.

One area we're learning about is communication. Elisabeth, our logopodist, recommended a great book, "It takes two to talk" (ISBN 0921145195) or the translated Dutch version, "Praten doe je met z'n tweeen" (ISBN 9789066659704) (FYI: if you look at the Hanen store website the book has been translated into many languages).
This book has given us great ideas. For example, Noah needs to learn sign language. In order for him to learn the signs he first needs to look at us. Not only must he be able to look at us but he needs to concentrate on us.
So these are 2 steps that Noah must learn before we can begin with the actual sign language. Over the last few months Thijs, myself and his carers, through play, have been building on Noah's ability to focus. This is going really well. Communication is a two way street, so one of the play exercises we've used is pushing a ball back and forth between Noah and ourselves. At first he didn't even want to look at the ball, now he loves it and pushes and kicks the ball towards you and waits for you to give it back. It's so great to experience laughing and playing with Noah. Now he really focuses on you when he plays, it's a really amazing feeling. He's gone from a baby to a little boy in what seems a blink of an eye. I know every parent say's this but it's true, the baby time goes so quickly!

In December a lady called Lissa Zaviar is coming to our home to give a lesson in Babygebaren or baby sign language. It's an adaptation of Dutch sign language simplified so that baby's hands can form the words. Baby signing is for all children. Lissa has written a great book (in Dutch) that we've been using with Noah. If you want to read more about baby signing check out her website which is written in both Dutch and English. Noah's nurses, carers and some family will be here, so not only will it be an interesting course but it's a great time for everyone to meet each other at the same time instead of briefly for a shift handover. We're both really looking forward to it.

Another area we've been busy with is Noah's mobility. Due to the fact that he has more energy, Noah is much more active. Working with Inge, Noah's physiotherapist, we've been teaching Noah to lean on his hand when he wants to reach to the side. Which he has now mastered. Turning around on his bum by opening and closing his legs. He's not quite mastered this technique but he's getting there. Rolling on to his tummy and lifting his chest up off the floor, another exercise he's getting better at. Noah can't get into the standing position but if we lift him onto his feet, he can stay standing for a few moments. Previously Noah hated pressure on his feet, now he always wants to be standing tall. Over the weekend we bought him his first pair of shoes. These are specially designed for that middle stage where he needs more support than a slipper but not the rigidity of a full shoe. By the way .... why are kids shoes so expensive, they are so very much smaller than mine but not so very much less costly?! The downside with Noah being so much more mobile is that we're not used to it and so were not prepared for Noah falling out of his box. That scared us silly. Now we always make sure the gate is fastened and wherever we put him make sure he's safe from rolling out or off. On the up side it does feel like we've passed another "normal" parent right of passage though, is it weird to be happy about that?

I've mentioned earlier that Noah is accepting food more readily. We've all persevered trying to coax Noah to try and put anything in his mouth. Babies naturally put things in their mouth, but Noah would only put his own fingers or his blanket in his mouth. If you put food on his fingers he'd wipe off the food and then put his fingers in his mouth. Slightly frustrating! One of the great things about going to the GretaBonteKoe on holiday is that the care aspect of looking after Noah is taken away and so we can focus on being Noah's parents. On our last visit to GBK one of the nurses put Noah in a normal kiddies high chair. I know it doesn't sound special, but everything we have is medical, specially supporting and very bulky. So to see Noah sitting in an everyday chair that an everyday kid can use was really great. This then made it much easier to sit Noah by the table with us to eat. We'd noticed that Noah was putting a few things near his mouth and sometimes in his mouth. By the end of the week Noah had progressed from a little taste to eating a tablespoon of yoghurt. He didn't accept it off the spoon but only off the finger, but at least he ate it.
When we got home we were keen to continue but Noah cought a cold and wasn't very well for 2 weeks. We need eating to be a positive experience so this wasn't the best time to push forward. We were a bit worried that he would forget how to eat but luckily this didn't happen. Elisabeth was on her regular visit and since Noah was feeling better we decided that would be a great time to try again. He ate another tablespoon of yoghurt, again not using a spoon but using pappa's finger.
If you can imagine, feeding Noah is like trying to feed a baby piranha - a mouthful of sharp teeth. Not the greatest idea to use your finger! Thank goodness he's now progressed to the baby spoon. Noah has also tried rice pudding and potted baby food with varying degrees of success. We're so proud of him, I hope having the nasal feeding tube out will make it easier for him and make eating a much better experience.

It's been a busy time but I have to say totally rewarding. Finally we're starting to relax. We're enjoying the luxury of 4 nights sleep a week. We have another break at the GBK coming up, and soon it will be Christmas. How great is life right now?!! I'm living in the moment and enjoying all the anticipation and hope that surrounds us. Breathing in ..... and breathing out.
The frantic Christmas shop nightmare is a worry for another day! :)

This is the end of a really long post, but we hope this gives you a glimpse into our daily activities. Since I've done all the typing I'll let Thijs put up the pictures. Since he's in bed catching some needed sleep the photos will be posted a bit later.

Take care all and enjoy this wonderful festive season.

xx