Ivy update – playing with fire?

We went to the pediatrician yesterday.

Ivy was well (touch wood touch wood touch wood).

Her chest was clear.

Her stomach not too tender.

Her ear looked much better. Still not fabulous but he said he could see a clear spot.

Her bottom was clear of any blisters, clear of any trace of the pemphigus, just a small amount of scarring.

She didn’t have to have bloods this week.

Her blood pressure was ok.

Her heart rate was ok, no sign of a murmur. Still a little high.

She actually smiled at him and gave him a hug when it was time to go.

She wasn’t scared for the first time in weeks.

So now what?

Now it’s time to start reducing the Prednisone again, now it’s time to push the Micophenolate up.

Micophenolate is the immune suppressant that she trialled in hospital. It has lots of neat side effects too.

Now it’s time to reduce the antibiotics.

Now it’s time to upset the apple cart, take chances, take risks, find a balance, play with fire.

And we have a plan (of course we do).

For when she gets sick

and for a new doctor, an endocrinologist

and for another visit to the immunologist.

Am I nervous?

You bet I am, after the Dapsone, I am down right scared.

For now, though, I am going to bask in her wellness and try not to think about the what if’s or the next time.

Today, I am just going to enjoy her.