So I've finally managed to pick my chin up off the floor after receiving an email from Chloe's pulmonologist that simply stated "Nursing care has been approved". I had to read it 3x to make sure I wasn't reading it wrong. And the next sentence stated the name of the agency so I KNEW it wasn't a typo. What the *#&(@#! WHAT has changed? She's been on the CPAP (cpap = continuous positive air pressure) since we were denied nursing care last time! NOTHING has changed. So I don't know what their thought process is, and at this moment I don't care. If we're actually going to get overnight nursing care even though our nursing care benefit is maxed then I'm just going to be happy with that. I mean, of course we should have had it all along, but we've done okay until recently. She's gotten REALLY hard to get on the CPAP and you really need to be up all night to keep it on her. Which obviously we can't do and still function during the day. Our doctor reviewed with me today the seriousness of OSA (obstructive sleep apnea) and the risk it puts on her heart and lungs and how it can lead to pulmonary hypertension, in addition to just making her overtired and cranky. It will also eventually start to effect her development. She's had so many struggles already we don't need her to have any more. So I'm feeling so thankful tonight that we're finally going to get some help. We just can't do this on our own and her heart, lungs and development depend on it! (How's that for a little pressure?)
I also need some thoughts and prayers to go out to Jax and Zoey, both needing some extra mojo headed their way. They are very special friends to me. I hope their mommies know how much they've helped and supported and inspired me through this journey. Please check out their blogs (by clicking on their names). . . be careful, you'll fall in love! I know I have!