Since Calla's diagnosis, this whole IP thing has been a crazy, emotional roller coaster.
I briefly touched on the possible effects of IP in
this post.
Fortunately, Calla has only experienced the typical skin stages.
So far, our sweet girl has gone through 2 of the 4 stages.
We've just been waiting for the 3rd to appear.
It may happen... or it may not.
That's the crazy thing with IP.
There is no knowing how you are going to be affected.
It really does seem that our girl has this rare genetic condition very, very mildly.
We are so incredibly fortunate.
I joined an online support group for those dealing with IP and I have seen how severely some are affected.
It's scary, especially initially when this whole plethora of intense information is thrown at you.
Big words. Medical terminology. Scary images. Even scarier possibilities.
I researched Incontinentia Pigmenti for DAYS after Calla's diagnosis.
I finally just had to stop.
I was constantly in tears.
Constantly worried.
Constantly afraid.
I realized that all the researching and worrying and crying was getting me absolutely nowhere.
Day by day is how we decided to deal with this.
And every day it gets a little bit easier.
For the first few months, we had stressful doctors appointments every week.
But now we haven't seen a doctor since March!
And we don't have to see one until September!
Calla is growing and developing exactly how she should.
You would have no idea she even has IP... her skin looks great!
While Calla still may have teeth, skin, hair, and nail issues in the future,
we are completely 100% ok with that.
Those are all cosmetic issues.
We can fix cosmetic.
And no matter what happens with this whole crazy condition,
she will always be our sweet, smiley baby Cal Cal!
Here is the progression of Calla's skin the past 6 months.
She mainly had the rash only on her right leg.
Months 1 and 2 are the first stage- blisters (vesicular).
She blistered on and off until she was about 3 months old.
The blistering stage seemed to be a weekly cycle.
Blister, heal, blister again... all within a week.
Then repeat over and over.
This stage was definitely the worst.
The dermatologist said that although they looked bad, the blisters caused her no pain.
I, however, thought she was more irritable when the blisters would start to appear again.
In the month 3 photo,
you can see the blisters are mostly gone and have been replaced with kind of a crusty/warty looking covering.
That is the second stage- warts (verrucous).
In the 4 month photo, you can see the warts a little more clearly.
By this time, she was completely done with the blisters.
In Calla's case, the warts appeared where the most severe blistering occurred.
The warts only hung around for a few weeks, then just kind of fell off.
I don't think these were painful for her.
They did bleed a little bit if they got scratched off though.
Since the warts have healed, her skin has been great!
Months 5 and 6 is the scarring from the original severe blisters,
but even that looks to be fading a bit.
The third stage, which we are currently waiting on, is hyperpigmentation.
During this stage, the skin is darkened in a swirly pattern, usually on the torso and extremities.
It is not permanent and will fade with time.
From the pictures I have seen, I actually think this stage looks kind of pretty :)
Occasionally, I will find a smattering of very faint light brown dots on Calla's tummy,
but they come and go pretty quickly.
From one diaper change to the next, they will be there, then gone shortly after.
Such a strange thing this whole IP business is.
The fourth and final stage is hypopigmentation,
which is pale, usually hairless, patches or streaks.
This stage tends to be permanent.
There is no telling if or when Calla will go through these other stages...
so I guess we just hang on for the ride.
Of course I still find myself worrying about her...
we aren't 100% out of the woods when it comes to eye issues.
She still needs to be checked regularly at the ophthalmologist.
I worry about kids making fun of her if she has funny teeth or crazy hair.
And my heart aches for my baby girl when I think about her wanting to become a momma one day.
Because this is an X-linked genetic issue, she has a 50% chance of passing it on to her children.
I know that this scenario is a looooooong time off,
and that there are family planning options out there,
but I still worry for her,
her future family,
and the decisions she will have to make one day.
The online support group I joined shortly after Calla's diagnosis has been wonderful.
I have found this group to be an invaluable resource.
It it so nice to have others to talk to through all of this.
They have been there, or are going through the same things as we are.
It's really nice to know that we are not alone when it comes to IP!
As far as where we go from here...
We are still in the process of getting insurance approval for genetic testing.
We have been denied once already, but apparently that's pretty par for the course.
Our geneticist resubmitted our paperwork back in May, so now we just wait...
This little lady sure has captured our hearts!
