Thursday, August 26, 2010

Three weeks old :)

Yesterday, it was three weeks since Maddy was born. It's a crazy thing to see her growing up in hospital. Already the changes in her are big. When she was first born, she was so sleepy all the time. Now a lot of days when we're there, she's really alert. She's also tracking things with her eyes more and more now, watching for movements and lights and colours. It was around this age that Lana started responding more to things, smiling and laughing. I wonder how many of these small developmental milestones Maddy will hit while she's in the hospital. Will we miss her first smiles and laughs? I hope it's not too much longer until we can bring her home.

The CT scan on Tuesday went smoothly, but we are still waiting for the results. The radiologist will take a look at the 2D scans and recompile them into a 3D picture of Maddy's airways for the ENT to assess. I'm trying to be patient with it all but I think the doctors are sick of me asking every day what the results are. If the ENT is satisfied with the stability of Maddy's airways, she will then begin the oral feedings and probably start to begin preparations to come home :) (fingers crossed!!)

The occupational therapist wants to begin the splinting of Maddy's feet and possibly her hands as well. Her feet to me don't seem particularly bad, they are slightly clubbed. But I guess it's better to deal with it now and to get that extra range of motion now and maybe it will help to prevent future surgeries etc... From what I've read though, most of the time with DD babies, they don't splint the hands even though the thumb is not in the normal position, and most of these children grow up to be able to use their hands as they are, even with the hitch hikers thumb. I don't know - I'll have to talk with the doctors more about that when they are wanting to go ahead with the splinting... I'm a bit concerned that splinting her hands will lead to more developmental delays like reaching/grabbing etc... but if the benefit is greater than the cost, I guess it will be worth it. I feel like I know so little about what is best for Maddy though, even though I've been trying to learn as much as I can... 

Tomorrow morning, Bernard and I have an appointment with the geneticist to discuss the results of the genetic testing. I already know that we are both carriers of the DD gene and that any future biological child will also have a one in four chance of also having DD like Maddy. I don't know what else he's going to discuss with us. Maybe which mutations we have, often there are mutations that are more serious or more severe. We also know that DD runs in both of our families now - so any of our siblings will have a one in two chance of also being a carrier of DD, any of our cousins will have (I think) a one in eight chance of being a carrier... But even with those odds, the chances of any of them marrying another carrier are remote so I don't know if it's even worth them getting the genetic tests done or not.

And in completely non-medical news, I've been wanting to process Maddy's Australian citizenship and passport - but they won't accept a photo with a feeding tube in! So we need to wait until Maddy has that removed before we can process it all. It makes me wonder what people do if they are continually on oxygen and need a passport photo taken. Do they take a big gulp of air and then take the tube away for the photo and hope they get a good picture fast? Or maybe people on oxygen don't want or need passports? I don't know - but unfortunately we have to wait to process all that. Hopefully we'll be able to do all that soon because we were wanting to get back to Australia in October, less than two months away - and all of this takes time to process... I hope we can still get back there then. If not then, we may go back over new year instead (when the weather is actually nicer - Summer is my favourite time of year!!) We'll have to wait and see what happens though...

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