Eff. Word.

Today Rainbow had an office infusion. We infuse 3 weeks a month at home, the 4th week we have to make the trek to a nearby town, endure a blood draw, and infuse at his immunologists office. We don't usually see his doctor on these monthly sojourns. He has a separate appointment with her every three months or more frequently as needed.

I was running behind the hubs and Rainbow and as I walked into the infusion room hubby looked at me and said "Dr. D is coming to talk to us."

Eff. Word.

That's not good. That's never good.

The thing is just two days ago Rainbow underwent a sedation MRI. His immunologist and a neurologist who spent all of 20 minutes with us (not a fan, in case you can't tell) both suspected he had a certain condition. The MRI was to determine if he did.

He does.

Rainbow has a Chiari Malformation.

His increasing number of migraines, he whole body aches, his frequently "cold" hands and arms... because there is something wrong with his BRAIN.

For ****s sake! Are you serious?!

The treatment is decompression surgery. They will have to cut open my three year old's skull and through his meningies to relieve the pressure of his swelling brain and provide the space for his cerebellum to lift out of his spine.

See cussing above.

We're seeking appointments with at least two Chiari specialists. As much as we are desperate to fix this we are more desperate to be absolutely certain every question is answered, every base is covered, and we secure multiple professional opinions. So, we are likely on a months long journey to major surgery.

Eff. Word.

Until the next crisis...