Well Nora’s Bilirubin took a good dive again this week! It’s down to 5.5 from 6.8 last week. Omegaven rocks!! We are so happy this is working for her, we couldn’t have hoped for a better response.
Yesterday we bumped her TPN break up to 3 hours. It’s so wonderful to be able to play and walk around with Nora without being attached to IV lines for those few hours. At the rate she’s going now we’ll need to get her down to a 12 hour break soon or we’ll be in trouble. Nora has such a strong desire to stand and walk. She’s been practicing for weeks now and yesterday she realized her legs are strong enough to take her all the way from a sitting position to standing up with just a little hand holding from her daddy or myself. Here are a couple links to videos of Nora practicing her big girl standing that were taken yesterday.
On another note, we’ve been meaning to share this link to the Shadow Buddies Foundation.
Montana was searching on the net for dolls with IV ports and G-tubes for Nora and found the Foundation. It was started by a mother of a special needs child back in 1995 and they make dolls with all kinds of medical conditions and “accessories”. The style of the dolls are very basic but serve a very special purpose to these children with special conditions. Even though Nora is too young to understand that she has a IV port and so does her doll (who daddy named Normal Norman) she was instantly drawn to him and he is by far her favorite buddy. She talks it up and snuggles with him all the time. He’s accompanied her to the hospital the last few times she was admitted and wears his face mask, like our fabulous home nurse Virginia, when we change her IV port needle. Here’s Nora taking a nap with Norman and a link to a video of her whispering sweetly to him.
Another Nora Vid for your Viewing Pleasure