I have been dreading writing this post. I mean how do you put into words the way it feels when you get what feels like the worst news of your life.
Harper has had a rash since she was 9 weeks old. At first her pediatrician thought it was contact dermatitis. It was red and raised and angry looking. Then it started to get less red and not really raised up and angry anymore. Of course we had already made a follow-up appt with the pediatrician so it was frustrating thinking we weren't going to find out what the rash was because now it was almost gone. It had faded into brown spots though so we kept the appt anyway. When the pediatrician saw what the rash had turned into she was baffled. When doctors tell you they have never seen a rash like that before and it is on your child, well that doesn't leave a good feeling. She referred us to Sanford Dermatology to have them look at it.
In May Sanford Dermatology saw her and also seemed to not have any idea of what the rash was. Several of the Dermatologists came in to take a peek. They took some pictures and the pictures I had taken when the rash was new and very angry looking and sent them to the Mayo Clinic. We were sent on our way with a prescription for steroid cream. Later that day I got a call asking us to come back in right away for a biopsy and was told not to use the steroid cream. Kevin met me and Harper at the clinic and they proceeded to biopsy the one ugly red spot she had left in the rash and told us we would hear in a few weeks.
June 7th, 2013 - we were at Kevin's parents house as Jennifer and Jason were getting married the next day. I was trying to work while everyone else was milling around. At about 10 am my phone rang. The number was a Sanford number. It was a nurse from Dermatology. "We got Harper's biopsy results back. She has an extremely rare genetic condition and will need to be seen at the Mayo Clinic." said the Nurse. "We want you to come in on Monday and see Dr. Khan to discuss her diagnosis and set up your appt at Mayo." And that was it. I asked if they would share what the condition was called. Incontinentia Pigmenti (IP). She had to say it 3 times and spell it for me before I understood. I started crying as soon as I hung up the phone. I couldn't even tell Kevin what it was called.
We both instantly started googling IP. We were relieved to see that the word fatal was nowhere to be seen. But some of the other things we saw scared us. Mental Retardation, Seizures, blindness, teeth issues, blister or wart like lesions, the list continues. All I could think or say was how does our perfect, beautiful, smart, and amazing baby have this. Why would this happen to her. How can she be sick and how are we going to fix it.
It was a rough weekend. We were busy with Jenny's wedding and we, especially me, tried not to let Harper's diagnosis interfere or take away from Jennifer and Jason's Big Day. The wedding was beautiful and fun and Harper made an amazing honorary flower girl (and her Daddy looked handsome too :)).
Monday at 4pm we met with Dr. Khan to go over the information on her diagnosis. She really didn't have a lot of information for us. Incontinentia Pigmenti has been diagnosed in less then 1200 people in the world. Ever. That is the definition of rare. She set us up with the best of the best at Mayo and sent us on our way...
I promise to do a post with more information on our week long adventure at Mayo with an update on her appointments. We plan to keep the blog up to date on all new information on Harper's diagnosis as a way to keep everyone informed while we are at Mayo when we don't have time to call everyone individually!
So there we are. Time to adjust to a new normal.
{M}
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