Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Wednesday, April 28, 2010

Bella Bug

Sleeping in her stander.  I teased her PT that she is working my girl hard!  :)April 22 005 IMG_0393

My Bella is growing up!  She has become a Mama’s girl.  She wants me to hold her all day long – every day.  Her nurses are delighted that she has made this big development step, but let’s just say it makes their job a bit harder :).  The 2nd picture makes me laugh – because she was such an accepting baby of anyone, now she let’s her wants be known!  :) 

(About the bows – one of my nurses likes bows – a lot)

IMG_0643 IMG_0646 IMG_0829 On Sunday watching a movie with the family – love that.

Endocrine yesterday.  She really wants to see what that thyroid is doing.  So, in one month we will have a CT scan with iodine – it’s a 2 day scan.  That’s going to be a long week, but hopefully it’ll answer some questions.


Lacey said...

What kinds of thyroid problems is she having besides low numbers?
My cute Bella, I love the bows!

Melina said...

Hello, I was recently diagnosed with Ehlers Danlos Syndrome, and one of the signs is called "Gorlin's Sign" which is being able to touch your nose with your tongue. It's not always with Ehlers Danlos, but it's there very often. I know you mentioned that in the past with Bella, and I also know that I have also seen Ehlers Danlos in conjunction with Down's, and that some studies suggested a casual relationship between the two disorders. It can explain a lot of Bella's problems, intestinal problems, perhaps more heart involvement, hypotonia, and I know all those are related to Down's as well, but it might be possible to have both and the pairing might be making things even more pronounced? Does that make sense? I'm sorry if I've confused you, just email me at if you would like more information. Take care and God bless, she is one beautiful little girl!