Genevieve is doing very well. We had a doctors appt the other day and she is up to 8 pounds 8 ounces already!!! She's growing so fast.
I have recently been put in contact with some women in Minnesota who also have EHK, and two of which have children with EHK. So far, we've been told that they don't understand why we have to wrap her entire body... or why her care is how it is. This has made both Andy and myself curious if we can actually rely on our dermatologist for accurate skincare for Genevieve. We know that not many derm's have seen this condition, only read about it in text books. We also know that this is the first case our derm has seen. One of the families (with EHK) gave me a derm referral for her doctor, who just happens to be at the same clinic that Genevieve's pediatrician is at, so I'm hoping to get an appt with her this week. I'm crossing my fingers that she tells us something different for her care.
Genevieve has become quite the mama's girl. Which could be expected since I'm home with her all day, every day. With me, she fights going to sleep. She doesn't fuss, she just gets the heavy eyelids and doesn't want to give in to them. If I put her in her crib to nap, she has crying fits every 10 minutes or so and I'll go in there and she'll crack an eye open as though she just wanted to make sure I was still there. When we nap together, or she happens to get lucky enough to sleep in bed with us, she will not face andy. She faces me, all night long. and she lays on her side (rolls over by herself) and inches her way as close to me as possible to cuddle. I love it.
Her skin is looking better, less blister breakouts, but after talking to those families I can definately see how we would be doing things wrong for her skin care... and we are simply following what our derm told us to do. We dont want to just change her skincare on our own. So I'm praying we can get some answers from someone who has seen it already. That ointment that she was prescribed seemed as though it started to give a burning sensation when we'd use it... so we've stopped the use of it.
There hasnt really been much change in our lives, or with Genevieve's skin, so I'll end this with some updated pictures.
Thanks again everyone.
This is how her left leg looks.
the back of her left knee.
and her chest and belly...