Ivy update - playing with fire?
We went to the paeditrician 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.
That’s so great Ivy is doing well! Great for all of you! ANd you should all quite rightly bask in her wellness.
I would be scared too of moving on and changing her medication to find a balance. Poor baby - she has such a hard time.
*Hugs* to you both, and thoughts go out to you.
Meanwhile? Enjoy today!
Great to hear Ivy is on the up and up.
What a bugger to feel like you are upsetting the apple cart. It’s a never ending circle.
Hope she maintains her health.
(hugs)
I hope you strike a balance without it costing Ivy too dearly.
Hang in there darl.
hugs
I have EVERYTHING crossed.
I hope the best for Ivy and for you.
Today, I am just going to enjoy her
Beautiful sentiment. Just repeat it each and every day until hundreds have past. It will happen one day
Lots of prayers that this will work well and that she continues to do great — you all need a break! Hugs, Tiff!
I can just imagine how nervous you must feel, but how nice that she is feeling well and you are able to enjoy her. I hope, hope, hope the new drug goes well. I’m often thinking of you with fingers crossed for a treatment solution. xx
Corssing fingers for an easy balance. For it all to be simple and uncomplicated for you.
YAY for her being well! At least for a while!
Don’t worry about stuff that hasn’t happened yet..
Yay for Ivy being well.. double yay in fact..
(((hugs))) Kim
Woo-hoo for happy healthy Ivy! I hope they start the new medications at minimal doses so as to lessen chances of side effects. Fingers crossed here.
Thinking, hoping, wishing all goes well. It’s about time!!
I’ve got everything crossed that Ivy stays healthy with the changing around of meds… ((hugs!))
Sounds GOOD! All of it! Good…
hugs!
THUMBS UP for Ivy and her wellness .. touch wood too.
Yes enjoy her and soak this up.
enjoy the happy healthy ivy.
I’ve everything crossed for ye, but I had to uncross it again for myself, so nothing is crossed for us all. If you get me.
Hope it goes well when you start with the switch!! I’m on tenderhooks for you!!
I am glad to hear that Ivy is doing well. I’ll keep her in my prayers.
I am so glad that Ivy is feeling better. I’m cheering for you all the way from Wisconsin. We’ll keep you in our prayers as you make those changes.