I know it has been a couple of month’s since I have updated Nevaeh’s blog. I always think to myself, “no news is good news”. That’s an understatement when it comes to Nevaeh. After her last hospital stay, baby girl has surly taken off in so many ways! I want to start with the parts that have been on my mind. Nevaeh is going to keep her trach for at least 6 more months. Ok there I said it, she he also failed her sleep study, in a way that her specialist are talking about surgery early in the year to remove her adenoids and tonsils to try and make room in her airway to help towards decanulation. Took me a second to put that in my head once again that our baby girl would be having yet another surgery. On top of that we still don’t have any answers on to why Nevaeh’s body isn’t making any white blood cells. So from a hematology stand point they need a biopsy from her bone marrow to be able to see if it is medication related or something else. They are able to do these procedures at the same time, but it is still gut wrenching to hand out baby off to surgeons once again. Please say a prayer for Nevaeh for these next steps that she will have to be taking. Now what’s new you ask?! NEVAEH IS WALKING AND GETTING AROUND! She has been hitting goal after goal with her physical and occupational therapies. To the point that we are having to chase her down. It is such a blessing to have to chase her. We knew (just from everything that she has been through) that it would be awhile and she would be delayed in different ways. But baby girl is catching up and we couldn’t be more proud! She loves to climb on everything which is so beyond terrifying. Her signing has picked up so much and she is expressing more what she is trying to say, but she is still working on trying to say words. With her only being able to vocalize sense March it does not surprise her therapist that she is still babbling more than anything. She does say some words like Mama, Papa, bubble, up, bath, baby, poop, hey. It’s only a matter of time when her and Marlee will be talking back and forth with each other. With feeding therapy Nevaeh is making so many strides! She hasn’t used her g-tube sense November 5,2019, that includes her medication by mouth as well! She doesn’t seem to like sweet stuff that much like cake or candy, but she does love her veggies. Except brussel sprouts! But can you blame her! Last year we had to keep visitation with everyone to a minimum during her birthday, Thanksgiving and Christmas. This year we got to spend it with EVERYONE including taking her to a holiday party and seeing Santa (Nevaeh was more interested in his gloves more than anything). So much to look forward to in 2020 for sweet baby girl. We are praying that decanulating her trach and g-tube will happen in the coming year for her to have much more freedom. Thank you all for your love, support, and prayers. We hope you have a Merry Christmas and a Happy New Year.