Saturday, March 1, 2008


No news about the transfer. The only news is that Deedee has pneumonia, again. She's been on antibiotics, which were not working at first but finally have " kicked in". She was really happy to see us today, granting many wide smiles and being quite playful. Auntie Nita passed by with her hubby and her other mom, and so the trio got to see baby. Yesterday Deedee's godparents passed by to spend some time with her after midday...

At least our diva is getting some deserved attention during her sick days. We wonder what she might be thinking of all this... of the change on environment as its been more than two months of her being in intensive care... We wonder which memories will remain in her brain when she is older... We wonder what will happen next...

As Dori sings at all times, "Just keep swimming". We are all still swimming through unknown waters brings on unknown challenges... But even if we tire (and we are really tired) we won't give up on our DeeVa. We know the end of the tunel is near, and that a better future lies in the end of the the riverbend... So... Let's keep swimming, even if the way is long if we dont stop we will make it. Love fuels our actions. God guides our path.



Ragnaremil said...

Hello Vivian,

Just wanted to let you know that we have been following Deedee's story from a distance. We live in Iceland and our son is 8 months old with SMA-1 (

Best of luck with everything!

NIV is the best thing that happened to us in the last months.

Tina said...

Vivian and Family,
Sorry to hear about the pneumonia. I hope that you can get some good news about a transfer early this week. You are doing a wonderful job fighting for your little girl. Keep it up!

Your Chicago friends,
Tina and Allyson

StellasMommy said...

Hang in there you guys! We are all so impressed with the awesome job you are doing for your little girl. She's the most beautiful little girl and she knows how much she is loved by all of you for the awesome job you are doing. Keep it up and like you said, we will keep praying that the light is at the end of the tunnel soon! We can't wait to hear the good news for you!
Sarah, Mommy to Stella (Type I SMA from Iowa, USA)