Sunday, June 6, 2010

alot but a little.

Well hello. It's been a while. I've been so busy with school (which I am almost done with my first quarter, and I still have A's.. woohoo!!!!). I haven't even been taking my one daily pic of Genevieve each day. :( She is growing up so fast. She is still cruising along furniture, and will walk like a pro holding your hand. She has taken quite a few steps by herself, but still not walking alone. She LOVES to roll/throw a ball back and forth with you. Gets the most beautiful smile on her face when you blow bubbles for her. She got a little kitchen set and she loves to play with it. She has learned how to get around our entire apartment walking along the walls. She loves to put one foot up on something like she's stepping up. I wish we had some stairs (I know how crazy this sounds), so she could crawl up them. She just wants to climb. She has a personality that is larger than life. Makes the worlds best faces. Reads your emotions. She knows just what to do to make you feel better. She is still nervous around others, but she actually let my friend Judy carry her for a little bit and put her in her carseat the other day. It made Judy's day. Andy's days have also been made lately by Genevieve. She will finally (but still very rarely) cuddle with him on the couch with me in sight. We were at the zoo one day and he was carrying her and said she was getting heavy, so I offered to take her and put my arms out and she wrapped her little arms around his shoulders/neck and grabbed tighter. She stayed with her daddy. She seems to love her puppy more and more every day. She looks for him, pets him, plays with him and his toys. I really believe he is her best friend. It's so cute. Her hair is getting long in the back (to about her armpits on her back), and coming in thicker on the top finally. Her hair has perfect little curls too, and is the most beautiful shade of light brown/dark blonde. She loves to color and draw, and I encourage her to be artistic any chance we have. She learned how to do jazz hands, no idea from where, but she looks adorable doing them. Maybe she will take after her momma and be a dancer? :)

When I logged into my blog, I saw that an EHK contact of ours wrote on her blog about typing up a notecard size fact sheet about EHK to hand to people when they ask Notecard. Business Card. Brochure. Just something. Sure they will most likely get thrown away, but for the last 16 months I have been doing my best to try and get the word out there about EHK and other forms of Ichthyosis. Educating both myself and others. When someone comes to me and says that a friend/family member/church contact/etc has a child/baby, or knows someone, with a skin problem, I automatically give them my email address and let them know that they are more than welcome to talk to me and that I would love to hear from them. Already this year I have recieved the statements of "wow, she got a lot of sun" and questions about her build up of skin (which is now turning dark in areas and becoming even more noticeable). Yes, I know she looks different, but that's the only thing that is different about her, her skin. But others who don't know Genevieve or our family, don't always feel or believe that. So what do you guys think about the notecard/info thing? How would you feel if you met someone, asked them about something like that and they explained it to you and then gave you a piece of information to take with you as well with even more facts on it?

Genevieve and I were going to head down to Arizona to visit my dad for Fathers Day. He still hasn't met Genevieve, and I'd really like them to know one another. He's had a very rough couple of months with a broken foot that didn't heal right and may have caused some pretty bad nerve damage, and has been out of work since the end of January. He could really use a pick me up. However, after much thought and consideration we decided to postpone the trip til later in the year due to the heat down there. We have had some pretty warm weather here lately and Viv's skin did not handle it very well, so I'd rather wait and go down later in the year, than go down this month and have to spend the whole time in the hotel while we are down there.

Genevieve and I are also going down to Virginia and now also Florida in August. We are stopping in Florida first for a few days to visit my friend Paige and her daughter Mercy (who was born in February 2009, so she's the same age as Genevieve), and then from there we will fly to Virginia to help my best friend Alicia get ready to move back home to MN. Then we will drive back to Minnesota with Alicia and her daughter. I am very excited for some girl time with Genevieve, Paige and Mercy and then Alicia and Laela (Alicia's daughter). Alicia was just home (in MN) at the end of April for my birthday and spent every day with me and Genevieve. I could not have asked for a better week. Genevieve absolutely adored her Auntie Alicia. We were very sad to see Alicia go back to Virginia, but in a few short months they will be back living here. :)

Let's see, what else is going on? We changed Genevieve's lotion again. We are now using Vanicream on her. I like it alot better, it keeps her skin hydrated longer, not to mention it has no chemicals or alcohol in it like other lotions. We are also using Vanicream sunscreen for her. We are only wrapping her feet and a little ankle now and not wrapping sores. We are wrapping her feet and ankles because the skin on her feet is so thick and flakey and it is uncomfortable most of the time for her, especially when she walks on like carpet with no socks or shoes. Plus the bandages help to prevent the blisters on her feet and ankles from the elastic in socks, and any rough edges on her sandals and shoes. She is still getting a bath every day in the morning/afternoon. I have found doing it in the morning/afternoon she is most comfortable throughout the day.

So that is about all, I'll leave you with some pictures though :)

this is my mommy necklace I ordered for myself for mothers day. I love it. I definitely recommend checking out


  1. I think the notecard idea is GREAT! I think if a strnger handed me info on their child's condition, I would TOTALLY go home and check it out.Plus then you don't have to feel like you have to stand around giving a long drawn out explination.
    Also, I LOVE your tattoo! well, what I can see of it anyway.

  2. Oh thank you!

    You know we are not too far away from one another. Would you be interested in maybe a zoo date one or something?

  3. eek, I can't wait to meet you ladies!

    and I also think the notecard is a GREAT idea.

  4. Anna, The notecard is a wonderful idea. I am the Public Relations Coordinator for the Foundation for Ichthyosis and Related Skin Types. Have you heard of our organization? We have cards that you can hand out, and highly recommend it. If you are interested in learning about our organization, please contact me at
    Thank you, Lisa Breuning