Friday, December 3, 2010

Sillence in the Hospital

So I couldn't resist the pun ;) (although technically, his name is pronounced "si-LENCE" with the emphasis on the second syllable)

Yesterday, Prof Sillence made his way up to the hospital to see Maddy. It was really good to have someone look at her and look at the x-rays and to give his opinion on her case. And he's had a lot more experience in this condition so the doctors were really wanting to hear what he had to say as well. 
It was all pretty good news. Prof Sillence said that he sees no evidence of any neck instability on her x-rays. That has always been something which was mentioned and not ever really confirmed or denied. I think it was something that the original geneticist (who trained with Prof Sillence) mentioned. In addition, there is no evidence of a cervical kyphosis at all - and this is often the major complication with Diastrophic Dysplasia. A kyphosis is where the neck bends at the wrong angle putting pressure onto the spinal cord and it often needs to be corrected with spinal fusion which is a pretty intense operation to have! Prof Sillence said that with DD, if there is no evidence of kyphosis at birth, it's very unlikely that one will develop later -  so I'm very glad that we don't need to worry so much about that!!

In addition, Prof Sillence suggested against the MRI and bronchoscopy. He said that the neck manipulation that they were planning could damage her neck and they wouldn't gain any information that they don't already have from the CT scan and from what they know about Diastrophic Dysplasia in general. So that is now not going to occur. They will monitor her closely though and if it happens that she does need them later, we can reconsider. But for now, absolutely nothing needs to be done!!

So in light of all that, the hospital is now preparing Maddy to come home! The process still will take a few days as we need to make appointments to talk with various doctors about her airway issues and her orthopedic issues and how to manage everything at home - plus it's coming up to the weekend so all the 9-5 doctors will be off! But she should be home by around Tuesday, give or take a day or two!! 

(forgive all my exclamation marks in this post, I'm just REALLY EXCITED THAT MY BABY IS FINALLY COMING HOME!!!!!!!!!!)

10 comments:

  1. I'm sooooooo happy that she's coming home!!! I can't wait for all the new pictures you'll get to start posting of Lana and Maddy together =)

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  2. Excellent, wonderful new about your cutie patootie!!!! I hope she comes home very, very soon!

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  3. You are entitled to be very excited about Maddy coming home!!! I am too!!! I am so looking forward to seeing her on Skype and even more so to the day that she will be able to travel back to Australia to meet us. Can't wait to hold this precious bundle of love. Enjoy your weekend as you get ready for Maddy's homecoming. Love always...Mum, Dad and Ash.

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  4. Wow!!! I am so excited for you! Just a few more days now!!! Please keep us posted as much as you can about her homecoming (not that you will be super busy or anything!!).

    Have a great weekend!

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  5. Awww this is great news! And you should have used many more exclamation marks!

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  6. Oh Nic that's GREAT news!!! So happy for you :D

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  7. Bro. John and Sis. Dolly RothDecember 3, 2010 at 2:28 PM

    Praise the Lord Jesus Christ! He is the Almighty God! What excellent news! We share your excitement of Maddy going home. God Bless your family! All our love, Sis. Dolly and Bro. John Roth

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  8. Yay!! Praise Jesus! You're allowed as many exclamation marks as you want to use!! :)

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  9. Hi I haven't posted before but I follow, and am inspired by your blog and your wonderful baby girl. Am so happy for you!!

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  10. So excited Maddy (i almost spelled it like my Maddie!) is coming home! YAY!
    Okieoliveoyl

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