Last night, we met up with a family for dinner who also has EHK in their family. The mom and the 5 year old son both have it. It was so great to see people and see how their skin is. We couldn't even tell their skin had any problems, besides dry hands. So that was very relieving. We asked so many questions, and they did also. It was a huge dinner... about 15 of us. We met the grandmother, aunt, uncle, cousins, and then the husband and wife and their 3 kids. They told us so many times that we shouldn't be wrapping her entire body... and that it's not doing any good. The skin needs to dry out in order to heal, and with it being so moist it's bound to tear and peel more (which we have noticed). There was one night after her bath that Andy grabbed a hold of her leg to put vaseline on it, and the top layer of skin on her calf just peeled off completely. They also told us that we should soak her every night and that it will help incredibly with her odor. The mom gave us brands of soap that we can use on her, and even brought us 3 jars of aquaphor. We had been told by Genevieve's dermatologist to use vaseline right now and when she reached about 1 years old to switch to aquaphor. We had been using aquaphor on her diaper area and had already noticed how much better it works for her skin. She also let us know that we could have our doctor fax a note to the manufacturer and that we can get aquaphor at no cost. So that will be incredibly helpful.
Last night on our way home we decided to make the change. We gave her a bath last night and she was so happy and content in the water, it was amazing. We did not wrap her entire body. We simply wrapped the areas that had raw skin, which is pretty much just her legs. This morning everything looked great. She had one new sore on her knee and that was it. We like the aquaphor MUCH better too. It's not so goopy on her skin and doesn't get all over everything. She seems a lot more comfortable now too.
She got to go for her first walk in her stroller today. The weather has been so nice. So we went out for a walk with the puppy. She was wide eyed the whole time looking at everything. It was so precious.
She's started to smile now too! She only smiles for mom though, dad has yet to see it. I've been trying to catch one in a picture but she's so quick with it. She likes to tease with it. Haha! She's also quite chatty these days. We have some pretty good conversations throughout the day. ;)