Well it's been way too long since I have updated everyone on Juliana. Things have been going so well I am almost afraid to write this. She is just so amazing. We have gone from an independent sitter to trying to walk very quickly. She has no interest in actually crawling. She goes up on the hands and knees and the straight to the feet like a bear crawl. She is just tickled if you stand her upright completely and let her cruise the coach. She is also waving "hi" and "bye" and at times it sounds like she is actually saying "hi".
We went to her 15 month (adjusted age) check up last week and she is almost 20lbs. I just can't believe it. She is still not on the charts yet for height and weight but is in the 50th for her head. Feeding therapy is going a little better. She will drink from a cup but only with tons of coaxing. She is also handling her baby foods and cereal alot better. We had lots of gagging before and now just a little here and there. Some days of course are better than others.
Surgery is still planned for this summer and we will start weaning her Oxygen next month. The hope is to have her off oxygen before surgery. Her surgeon probably won't even think about operating on her til she is completely off. I am looking forward to this surgery but am very worried how Juliana is going to handle being back in the hospital now that she is older and a lot more aware.
For now we are just enjoying our time at home with her and praying we can get through the last part of winter hospital free. We have done really well so far. I had a really yucky head cold for about a week but managed to keep it from spreading to the rest of the family. Lots of hand sanitizer, disinfectant spray, and masks.