Not only has the medical staff here never seen a case like Brenna's - and very likely never will again - but her condition is so rare that it is very difficult to say exactly what works and what doesn't in treating and caring for these children. Truly the only way to discover what works is to live it each day.
Sometime early in our family's journey, De De found my blog. De De's adorable 20-month-old son Evan is also affected with Harlequin Ichthyosis. And what started as a single comment on one of my posts has turned into emails, facebook messages and most recently, text messages. De De and I probably correspond at least every couple of days now!
Honestly - and I have told her this before - I don't know what we would have done without their family. They have provided invaluable information to aid us in the daily battles with Brenna's skin. De De has taken the time on numerous occasions to write in-depth messages about how they care for Evan, answering so many of my questions about skin care, eye care, ear care, laundry, Aquaphor treatments, medication, bath rituals and so much more.
The day before Brenna came home, a care package arrived from De De and her husband Joe. It contained dozens of medical supplies and items accompanied by a long list of each item and the way that they use it to care for Evan, from ear cleaners to wash cloths to antibiotic ointment for cuts.
Then, on the day of Brenna's homecoming, this photo popped up on my facebook page:
Is that not the most adorable thing you've ever seen? We were melting when we saw it :)
A couple of weeks after we came home, we noticed that the scales on Brenna's head were really starting to build up again. So I turned to De De, who not only provided amazing details about how to battle the thick scale but sent us photos of Evan's skin build-up on his face a few weeks after they came home as well - helping us to feel like we were not at all alone with these challenges!
What I have always found very surprising - because De De has been so incredibly helpful and open - is that we were the first family affected by Harlequin that they ever reached out to. Now, however, De De has joined some groups on facebook, connected with other families and even met up with one of those families in person! And with all of this going on, De De has decided to start her own blog, sharing their family's story and raising awareness about ichthyosis.
I highly encourage you to check out her blog here and read about her beautiful little boy!
I am so looking forward to the day when we get to meet De De and her family, and several other families who we have been in contact with. I feel like we have known them forever already, and I am so thankful for their willingness to reach out and help us as we try to mirror their efforts of raising happy, healthy children!