so many new posts from me! i decided to take even more pictures of Genevieve today... what can I say? I'm addicted to the camera... kind of hard not to be with her. I am in aw of how great her skin is looking since we've stopped wrapping her. On average its usually just her feet, ankles and one other part of her body that has wrapping on it (and its usually just a thin strip of bandage). Im excited for her dermatologist appointment on Tuesday, I expect to get a lot of helpful advice and knowledge from the new derm.

She gave me her first real smile and giggle today, and I swear I fell in love all over again. She teased me the rest of the day with it too! Little stinker. While taking pictures, she actually gave me a little one but kept her eyes closed and then peeked one eye open after she heard the camera click.

She's also a little chatterbox, but only when dad isnt around. He thinks I'm hearing things, because he never hears her. One of these days I'll make a video of it.

beauty.strength.change.luck.

When Andy and I first started dating, he was living in Laramie, Wyoming for school and I was in Minneapolis, Minnesota. I flew out to visit him a month into our relationship and he gave me a dragonfly necklace, which to this day I still wear on a regular basis. The meaning behind a dragonfly changes from culture to culture, but some of the symbolism's is beauty, change (a new beginning), strength, and luck. It is believed that if a dragonfly lands on you that you will have 7 years of good luck. Two months after we started dated, I made the move to Laramie, Wyoming to be with him. The day after I got there, a dragonfly landed on me and it gave me a sense of peace that things were going to be ok. Since then, we have had many ups and downs and gone our separate ways, but today we are stronger than ever within our relationship. I still wear my necklace, and it reminds me of why he gave to me.... he thought I was the most beautiful girl he had ever seen. It was a change for us, neither of us had had good relationships with others... both of us had bad breakups a year before we met, and saw the start of our relationship as a new beginning. We knew things would be different, and that the distance between us would bring strength to our relationship. That if we could overcome the challenges of 13 hours between us, that we could overcome anything. We knew we needed to remain strong for one another. And luck to have found one another.

When Genevieve was born and diagnosed with skin problems, I immediately thought to her future and how to explain things to her when she's a little girl. I thought about dance recitals, prom, her wedding... would the other kids make fun of her... i knew we needed to find a way to make sure she knew she was beautiful in every way, even if she was different. This was before we really knew much about her condition. I feel the symbolism behind a dragonfly also fits for our little girl. Even with all the sores, and skin build up... she is the most beautiful little lady that I have ever laid eyes on. Life will be different for her, I'm sure somewhere someone will say something to her at some point about her skin... but she will be a strong. She is a little fighter already...she's proven that to us.

she rarely gives up her binky.

the closest thing I could get to a smile.

such a sleepy baby.

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. ;)

So her skin looks alot better today, just two days after her breakout.

After quite a few phone calls, and calls to the dermatology office by our pediatrician, we finally have an appt with a new derm who has seen EHK before. Our appointment is for March 31st, so we are crossing our fingers to be told better news about how to care for her skin.


Just wanted to share that picture. she has alot of hair on the back of her head, and is practically bald on top!!! i wish she had hair like this all over her head.

Yesterday Genevieve's skin broke out in sores really bad. She was looking so good, and then when we took her bandages off last night to give her a bath, she had skin peeling everywhere. It's been rather upsetting. After her bath she was kicking her legs alot from being fussy and she ripped skin off her heal, about a half dollar size and itis the reddest spot ive seen on her since she was born. And I know its hurting her because every time that spot is bumped in any sort of way, she starts screaming. :(

We are meeting up with one of the women Ive been in contact with who has EHK on Saturday. We are super excited. We will also be able to see her 5 year old son who has it. Shes going to bring pictures of her son from when he was Genevieve's age and look at Viv's skin and offer any advice she can.

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.

Anna



This is how her left leg looks.
....

the back of her left knee.


Right leg...


left arm



Right arm...



and her chest and belly...