Koud!

This week, one morning, we woke up to this:

 

 

A wonderful snowy world! And so early in december, too. Snow makes everything so beautiful, I'd prefer 'snow and cold' to 'not quite so cold, but rainy' any day.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Roelof made this great photo of the rosehips in our garden.

 

First thing after breakfast I ran up to the attic to find warm outdoor clothes for Thomas and Isabel.

 

Rosalie went to school on her bicycle, not afraid of cold or slippery roads. Good for her!

 

Thomas and Isabel were impressed by this change that had ocurred overnight!

 

 

 

 

 

 

 

We didn't stay out to long, though.

Isabel fell face down in the snow and decided she didn't like it! She cried and walked straight back to the door!

 

She did, however, learn a new word:

 

KOUD

( = COLD)

 

So that made us very proud. Children with pws are slow in developing language, but Isabel has now really started to say words and names. We started with sign language, maybe six months ago, to help her understand language and give her the tools to actually say things. After learning some signs I think she really understood what it was all about. So now she's trying words, it's hard for her to pronounce them because of her low muscle tone. But it's so good to see her try and just get it!

 

Besides these few words she now knows - mama, papa, koek (cookie), opa (granddad), oma (grandma), paard (horse), boek (book) and ja (yes) - she also still uses her own flow of sounds, telling her own 'stories' as she plays or walks around. And she understands just about anything we say.

So, Isabel, you are doing great!

 

 

What better to do on a cold day than stay inside and knit?

This jumble of yarn and stitches will be a sweater some time soon (soon? we'll see...).

 

 

It's Camden by Ashley Adams Moncrief from Knitty magazine (www.knitty.com).
I love the bobble pattern, I also like the detachable sleeves, but probably won't have anough yarn for those. I'm knitting with a wonderful organic alpaca, so soft! I don't think I have ever knitted myself a sweater before that didn't consist of a collection of rectangles (one for the front, one for the back and two for the sleeves) and those were knitted a long time ago!

Back to my knitting now, I might just have time for one more round!

 

 

Fall, forest and play

About two weeks ago (or was it longer? Time flies!) it was 'herfstvakantie', a week long holiday for schoolchildren in Holland, so my eldest, Rosalie, was home for a week and we enjoyed some really nice days with the whole family together.

We went for a long walk in the forest, with Rosalie walking most of it, 6 kilometres, pretty good for our tiny six-year-old! And Isabel walked alot too and it is so nice to see her enjoying things like this. Who ever said children with Prader-Willi syndrome were passive? We don't recognize this in Isabel, who is, very much, an active little girl. So, passive? No, but quiet at times, fidgeting with something or other, but I think she needs those quiet moments to proces the impressions and experiences of the day. Some pic's of our forest walk:

 

On another day we went to a playground nearby, took our lunch along and stayed for quite some time!

The next picture shows Thomas and Isabel in the 'fietskar' (What's the word? Bicycle cart, maybe?) ready to go home.

Prader Willi Syndrome

Now that Thomas is nearly three months, there seems to be a little more time for doing things besides caring for him (which I'm enjoying so much!), like writing this blog. I would like to use this blog to write about Prader Willi Syndrome (PWS), about what it's like to have a child with this fairly unknown syndrome. But to do that I should go back to the beginning. I had never heard of PWS before Isabel was born.

Isabel was born in the summer of 2010 in the hospital and very soon something appeared to be wrong. It may be strange but I didn't notice this myself at first, I only thought she was beautiful, maybe a bit quiet and weak, but she had wonderful red hair (and lots of it!) and the prettiest little fingers.

However Isabel did not cry, she didn't ask for food and would not drink when given milk. She had to be tube fed. And she was just too quiet, she would just lie still when I changed her nappy.

All this meant that we had to stay in the hospital for some time, while doctors tried to figure out what was the matter with her. Luckily I could stay with her all the time, we had a room for the two of us where Roelof and Rosalie could visit whenever they wanted. But it was a heartbreaking experience to see my little baby surrounded by all that medical equipment. Sometimes I hardly dared to pick her up because of all the cables that were attached to her (monitoring heart, breathing and oxygen levels). She also needed some extra oxygen at times.

Infants with PWS have a very low muscle tone, they usually don't cry and have alot of trouble drinking. Many babies have to be fed through a tube, which can be necessary for several months. A they sleep and sleep and sleep!

We were so happy to see her liven up when we gave her a bath. That was just about the first time the we realized: she's here with us! She sees and hears us and there is a wonderful person in that weak little body.

To make a long story short (because Thomas is getting hungry!): after three long weeks we could finally take Isabel home with us. It was about two months after she was born that we learned she had PWS. That is actually a very quick diagnosis, and that's good because we have learned so much about this syndrome since. It was, of course, shattering news, to hear that your child will probably never be able to lead a 'normal' (whatever that may be) life, but will always be dependent on care from others. But after learing more about PWS we started to realise that life can still be very meaningful and also enjoyable for Isabel and we decided to just love her, just as she is, and to try not to worry to much about the future.

I would like to write more, but I need to get back to baby Thomas now. These days, I seem to do just bits and pieces of all that I want to/need to do. But, that's caring for little children!

By the way, my spelling may be wrong now and again. English is not my native language, and I don't have the time to check it now.