Pregnancy & Birth Clubs <
07/08/2013 at 09:58
Sorry I haven't come back on recently.On Thursday we got the results of the genetics test and it is not good news. She has a rare genetic disorder called trisomy 13 and we have been told that it is unlikely that she will live beyond a month and very unlikely to live more than a year. She is blind because of this and we also think she is deaf. It affects everything in her body and her brain signals to her organs might not work properly. She is not on any medication or monitors now. We are going to visit a children's hospice later tosay to see if we can go there for a week next week with the aim to take her home the following week. We are slowly coming to terms with this. The nurses have been fantastic and we gave spoken to a family support nurse who has helped us to focus on the positives and to cherish our time with her, almost ignoring the diagnosis.
07/08/2013 at 10:03
oh bunny. i'm so sorry to read this update. i hope you are able to go to th hospice and to spend some precious time with your baby,.
all my love to you and your family x
07/08/2013 at 10:05
I'm very sorry to read this, sending you all much love x
07/08/2013 at 10:07
Oh bunny, I'm so sorry.
I hope you can cherish every moment with your precious girl.
07/08/2013 at 10:08
O bunny, how terribly sad, thinking of you all and I hope you get to cherish the time you have with your precious girl, will be thinking if you all, much love
07/08/2013 at 10:10
I am so sorry to read this. Sending lots of love to you and your family.
I wish I could say something to make it better. Cherish every single second of her, take a million photos, and sending all my love and strength
07/08/2013 at 10:11
I'm so sorry to hear this Bunny, my thoughts are with you both and Keira, and I hope you can cherish every moment with your gorgeous girl. Lots of love xx
07/08/2013 at 10:15
I've missed your previous posts Bunny, so firstly can I just say congratulations on the birth of your baby girl.
I'm so sorry to read how poorly she it, I hope you and MrBunny can cherish all the precious time you have with Keira, sending you all lots of love and keeping you in my thoughts
i am so so sorry, you K and your family will be in my prayers xxx
I am so sorry to read this Bunny :-( Thinking of you all xxx
07/08/2013 at 10:17
really sorry to hear your news, i hope you continue to get the support you need and can enjoy some precious time with your little one, you are in my prayers x
07/08/2013 at 10:23
I am so sad and sorry to read this. I hope you all get the support you need and some time with little K. Sending you love and thoughts xxx
Sorry I haven't been around so I've missed your story. Much love to you, I hope you get some precious time with your girl x
Sorry to read your update. Cherish every moment. You are in my thoughts and prayers x
07/08/2013 at 10:24
Oh bunny I'm so so sorry. Xx
I'm so sorry to read this update bunny. I think your support nurse is absolutely right. Enjoy the time you do have with Keira and Mr bunny, and I'm sure she will be surrounded by love, cuddles and smiles.
You are very much in my thoughts xx
07/08/2013 at 10:27
I am sorry sorry to read your update, sending you love an thoughts x
07/08/2013 at 10:33
I'm so sorry to read this bunny. My thoughts are with you all.xxx
07/08/2013 at 10:35
So sorry make the most of every second you have together. Your braveness and strength amazes me x
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