My head is stuck firmly in the sand. Deep deep in the sand. Everything is so freaking GREAT and I dont WANT to go to the dr, I dont want to start the next step.

We need a pulmonologist to help guide us to lower the dosage of steroids and check her nitric oxide levels.

We need a gastro to help guide us and investigate why she stopped growing again – is it only due to steroids or does she need extra feeding / growth hormones wtf??!!

We need an allergist because holy shit her allergic reactions are getting worse and shes due new testing.

We need a physio who can work with her on her back and help her build muscle safely.

We need an orthopedic doctor to take a look at her spine to see if she needs braces or if physio is enough.

We need a rheumatologist to check her over as she was due a repeat “look over” a few months back.

I AM FUCKING TIRED AND I CANT THINK ABOUT IT ALL RIGHT NOW!

Everything is so great, so WHY??!!!!!!

Head back in sand. Look at the pretty flowers…..