She Will Amaze You

Trying hard not to get ahead of things, or to get too excited.
Today, we met with Dr. Dee. She was very positive about all the progress Ellie has made, and with the smooth transition to growth hormone therapy. She said that Ellie's case is being presented to the night nursing funding program next week, and hopefully, ideally, we will qualify for enough hours to make Ellie coming home feasible. She said Ellie still has to fit the mask, but there are things they can do to help fit, since her nose has grown. She will still need her bipap for night and naps, but they want to do frequent sleep studies, in the hopes of getting Ellie weaned off bipap by the summer. Wow! She will need the frequent sleep studies, because the gh can cause problems that show up slowly, showing themselves through loss of milestones. We are all for forward progress.
We talked about the downside of bipap, Ellie's mid-face is being compressed quite noticeably. We aren't out of the trach woods. She could very well experience issues requiring traching. Fingers crossed she continues to do well.
When her apnea resolves,she will need to discontinue gh when she is sick, and need bipap during those times, but for the most part we will be living a more normal life.
I would be so, so happy to have her home soon. Scared to hope for it...