and the blisters, they just keep on coming…
I have been so sad for Ivy these last few weeks.
We have been pushing the Prednisone down,
trying to get her to a maintenance level, where she is not as adrenally suppressed
when we got to 10.5 mg she blistered.
She was sick at the time, so I just thought it was because of that.
I pushed her steroid up for three days and the blisters started to resolve
but when it was reduced again the blisters came back worse than ever.
Lather, rinse, repeat.
At 15mg and while I was away, the blisters just kept on coming, in the same sort of cycle that she had
before we had a diagnosis,
before the Pred,
before the IVIG.
She has been sad and in pain and last night, while she was crying on the lounge, after a new crop of blisters had appeared,
I felt so, so low and sad for her.
This morning she has been still and quiet, on her trusty couch.
Just waiting, like me, for the next IVIG infusion.
The last few months have proved to be difficult.
I won’t lie.
Her energy levels have been down, she has been picking up infections again and meltdown week has been hard.
We have been pinning everything on the increased IVIG
but it had not been forth coming
until today.
This morning, the immunologist called.
Ivy has been approved for the increase.
Her infusion is on Monday coming, then the next will be three weeks following.
On her 4th birthday.
It’s a bit sad that she will be in the hospital on her birthday
but, honestly,
getting the increase is the best gift she could hope for.
It’s going to be a really great Summer!
What a fabulous awesome amazing birthday present!!!!!!
Can’t tell you how pleased I am for you guys…..
I read about Ivy (and especially her blisters because I know how horrible they are) and it helps me be so much less selfish and less narky….. I love my husband a little more when I read about your girl, and I am thankful for the long crappy hours he works and the pay dispute they are working to resolve… because I am reminded that what he does counts. So thank you…. and I’m sure my husband thanks you too!
A fab birthday present!!!!!!!!
hug that girl from me… and all my girls too.
hugs to you Tiff…always………….
Sweet Hugs and Kisses to Ivy! I pray this will help so feel so much better. You are a wonderful mother Tiff. Bless you for the wonderful care you give this precious little one. She always looks so clean, happy, and adorable in all her pictures too.
Love Kathleen in Memphis, TN
Oh I can’t wait to see more photos like that of Ivy – happy and enjoying the outdoors. So happy for you that it finaly came through
Poor little girl. It’s so unfair. I’m so happy the IVIG has been increased. I hope it makes a big difference for your little girl.
Oh thank goodness for that!!!
Such great news at long, long last! Now maybe, just maybe, by New Year, Ivy will be able to be weaned off the high levels of Prednisone again so her adrenal system can perhaps start to recover & the pemphigus remain under control. And maybe, just maybe, once the pseudomonas & staph infections in her ear are suppressed once again with further IV antibiotics, Ivy may be able to keep them at bay permanently, with the increased IVIG infusions. What long-awaited relief for such a brave little cherub and such hope for a happy, healthy summer. xoxoxo
That has just made my day! Yay!
Tiff, I was feeling so heartbroken reading all of that about Ivy, but I’m SO pleased that she has been approved for the IVIG increase, what wonderful news!!!!
The best news since the IVIG was approved at all (hugs) hope she is well enough for a celebration tonight.
Hey Tiff, so glad Ivy got her IVG upped. I so love that photo. She is one amazing kid and you are one amazing mother. David is stunning too. I admire you so much for all you manage and the way you do it all with such grace. All your children are just beautiful souls and people
love and hugs to all of you, Carolyn
Oh you’ve no idea how pleased I am to hear that. An increase is exactly what she needs. Wishing you strength until then though and sending healing thoughts for poor Ivy and her blisters.
Such great news Tiff, am so happy for Ivy and you and the rest of the gang! The photo of her hopping in her skirt is gorgeous!! Says it all! xo
So very glad the increase has finally been approved, hope it makes the world of difference to her
Yeah! *punches the air* its what you all deserve!
Yay! Ivy’s spirit never ceases to amaze me – she’s been through more than most adults, more than most people will ever go through, and yet in photo after photo I see joy and strength and shining in her face. I hope you do have the most fabulous summer (even though I’m jealous, ’cause it’s almost winter here!)
Yay! I just danced a little jig in my chair
I hope knowing it will get better soon makes the waiting a little easier.
And you just mail me when you have the time to arrange to do some family portraits for us, cause that is one gorgeous photo and we’re just waiting ’till you’re ready to get your business going (but we understand some things are more important – like little girls who need their mum). Jo.
Yippeeee! I am SO glad they finally approved the increase!! Love the pic… she’s such a gorgeous girl.
xoxo
SO relieved for you hun! xx
Great news.
Woohoo! Hope Ivy (and you all) cope ok until Monday. Thinking of you. xx
A little late at reading your post, but means tomorrow Ivy will get her IVIG. Hope she (& you) managed the last few days ok, poor little sweet. It’s just so unfair. Good luck tomorrow!
Thank heavens they’re upping her dose. I’m pleased.
Hi Tiff, I am so pleased to hear that the IVIG has been approved for 3 weekly doses, after all that you and Ivy (and your whole family really) have been through.
Hope it all goes well for you and your gorgeous girl!!
A little late on reading news. But wanted to say – Good news at last.
Yay for the increased dose. I’m so sad for her blisters.
Look at her sweet face, all lit up and beautiful.
Oh, Tiff. How terribly sad. Am catching up on your blog after not reading since the giant check. Poor baby–I’m so glad she has finally been approved for an increase and you’re absolutely right, it IS the best possible gift. Cake and balloons can greet her at home after she gets her infusion, and still be lots of fun. I can’t imagine how wearing the frustration must have been for you, all this time of knowing an increase could help her avoid such terrible suffering and not being able to do a thing about it. In your shoes I’d've been scheming a way to break into a hospital in my free time! Can’t wait to see how well she does now that it’s been approved!