Thursday 28 May 2009

Emma on YouTube

If you want to see Emma live, have a look at this little video on YouTube. The movement of her eyes from side to side is called Nystagmus. But we feel that it has already improved lots. The movement was at its peak when she was around 6 weeks. Being new parents and being totally clueless... we thought that was all normal. Enjoy and ciao for now.
xxx

Friday 22 May 2009

Diagnosis: Oculocutaneous Albinism

I am not sure what the word on the street is, so I think I better set the record straight and let you all know what's been happening in our lives in the last 4 weeks. Probably best if it comes directly from us, before mixed stories are being passed on... so here goes...
Col and I noticed that Em has been taking her time to focus at our faces and all sorts of toys/ mobiles etc that have been dangling in front of her. We did not think much of it until we also noticed that her eyes are constantly on the move and seem to rarely stand still. We decided to better get it checked out and unfortunately our fears came true when after a thorough eye examination the little missy, or may I say, our little family has been diagnosed to have a form of albinism. We are unsure yet, which type of Albinism Emma has. We are hopeful that she has a milder form, which means that her body is producing melanin, just in tiny amounts. Melanin production is obviously important for skin and hair but also for your vision, which we did not know... This means that Emma is missing the melanin pigment at the back of her eyes which results in significant problems with depth perception as well as light sensitivity. How minor or majorly impaired her vision will be, is at this point not clear. We will only be able to know the extent once Emma can actually explain to us what she can and cannot see. I have never been a patient person, so for me the wait is probably the hardest part.
What else does this diagnosis mean? It means that Col and I are both carriers of the albinism gene. In a couple of weeks we are going to see a genetics specialist who is going to shine the light on what type of albinism Emma ended up with and also where exactly it's coming from. Who's genes reign supreme, ha ha.
The first week after the diagnosis was very tough for Col and I but we have digested it and are totally ready for the challenge. In the animal kingdom, albinos are hugely thought after and perceived as very special, so why not see a human with albinism in the same way? We do!
Our love for Emma has grown immensly and we now get a very good idea what parenting is all about... We will do anything we can to help and support Emma and our family has become the most important thing in this world. Anything that has a price tag attached to it, in my eyes, has got no importance anymore.
Gosh I am getting quiet emotional writing all this. I need a drink ;o)
So here is to little Emma and may the force be with her!!!
Here some more pics of the gorgeous little girl.

Nap time...

Emma with her 7 month old cousin, Hamish. They are nearly the same size. Go Em!
Showing off her knickers and having a little vom. Thats our girl!


Emma with her great grand! Also called GG...

The New Kids in the Woods

Big congrats to the Woods for producing 2 super gorgeous babies. I must admit that we are especially excited about the female addition to the crew to balance out the boy/ girl ratio, ha ha.
I can def see some similarities between the little cousins around the eyes. Anyhow, massive congratulations!!!! We are very happy for you... xxx

Danah with little Morgan. I believe Morgy he was only 2 weeks then...

Morgan Kingsford Wood

Asia Emily Wood. Love the mushroom singlet... he he

The proud, new dads... What a difference 3 months make!

Friday 1 May 2009

Emma - 3 months

Ane, who studies photography took some great shots of little Em last week. Here are the ones I love the most... And a huge thank you, Ane!!!

 

 

 
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