The Holidays

Well Hello. It's been a while. Genevieve is doing very very well. She is all over the place, finally comfortable walking and climbing and getting into well, everything! We moved into a house not long after my last post, and it is amazing how much everyones attitudes have changed... mainly Genevieve and Kingston (our chihuahua). Everyone is alot happier with the extra space, and of course Kingston LOVES the yard.




Genevieve had fun on halloween. She was a little "dragonfly" (according to Old Navy). She enjoyed raiding Grandma Jody's smarties bowl. And playing with Grandpa. We didn't go trick or treating, just visited with a handful of family members. She was so proud of her wings and wand, and anytime she heard music she would dance.





Cant forget that we carved pumpkins too. I cleaned out the guts and Genevieve would stuff them back in the pumpkin!!! Little stinker. I cut some simple stars out of her pumpkin and then let her finger paint the pumpkin. And with exactly my luck we got a TON of rain the next few days and all the paint was washed off. It was a great memory though for us.



We also got to see our Colorado EHK friends in October again. They came for a followup at the Mayo Clinic. Words cannot even begin to express how much that family means to me. Without Jenny, I feel I'd be lost. We are in this EHK battle together with different children. Jeremiah is 2 months younger and much more severe than Genevieve, but I love that we can still understand and know what one another are going through. I know I always have a friend to listen and understand. They are not just friends, they are definitely family to us.

Jeremiah and Genevieve October 2010



and I'll leave you with a cute picture of Genevieve and her baby stroller.

This is my life

This is my life. This is my world. I would give up everything for this little girl. Nothing else matters when she is with me. This is why I choose to stay home on weekends than go out. I want to spend my time with her. I want see her grow up. Do I get time away from her, some "me" time. Of course I do. I do enjoy my time away as well. In fact, I have a 4 day vacation booked for a weekend soon, out of state... and she will be home with Andy. And I am VERY excited for vacation. But this little girl is my life. I know it sounds cliche, but my life changed the day she was born. It was no longer about me. It was all about her. My life was no longer about what was best for me.. it went to all her. I spend each day watching her grow up, helping her learn new things, teaching her new things, and finding new ways to educate others on her skin disease. She was given to us for a reason. I have always been great with getting the word out to others about things. I have always been one to write. I have always been one to educate. So that is what I do. I research at least once a day new things about EHK and Ichthyosis... and I pass those things on to the other families we know. I take those new things in and find a way to put it into our daily routine with Genevieve. I also take advantage of my education currently for early childhood education with a specialization in special needs children. I didn't just start this degree for a career later, I started it so I can help assist her educators when she starts school about the best ways to approach her education with her special needs. To help other children with their special needs as well. She is my life. She is my everything. And no matter who you are, she will come before you in my life.

As for other areas of my life, being that I keep getting questions. Are Andy and I together? Right now, no. We haven't been since about June. To people in our lives, we might as well be together. We are happy for the first time in a long time. We are taking a break, and focusing on ourselves (as selfish as that sounds), to become better partners for one another and better parents to Genevieve. We both know we want to be together, but over the last 2 years or so, we both have become people that neither of us are very proud of (towards one another). Part of this process is opening up to one another's families and friends. More so part of my process. In his life, there have been a lot of people who have not supported our relationship throughout our problems. It's been a lot of "leave her" type stuff. We've been together 3 and a half years and I've never felt accepted by his family. Not that I need to be a part of his family, but after this long, you'd think it would be a comfortable environment for me, and it's usually the farthest thing from. But I'm doing better. Stepping out of my shell, and trying to not think about recent events involving me and his family in the last 2 years. Situations that I have only talked to Andy and Alicia about. Are Andy and I still living together? Of course. We are not saying this is the end of our relationship. In fact, we both know that we want to be together, but we both have things to repair within ourselves first. We still are the same way towards one another, in the positive ways. Still affectionate. Still goofy and crazy in love with one another. But since starting to repair ourselves, there has been no arguing and more conversation. And also more consideration towards one another. So this is a good thing... no scratch that... this is a great thing. We are a family. We want to continue to be a family, together. And we are heading in the right direction for once.


As I mentioned I am headed on vacation soon. Just me and my best friend, no kids. 4 days of sun and beach. I will take advantage of the time to relax. Alicia has lived in Virginia for the last 3 years and just moved back to MN after graduating college. She has a beautiful 3 and a half year old daughter, and could also use a kid free vacation. And after living in different states for 3 years, we could use some best friend time together.

On an even bigger note, we (yes, me, andy and Viv) are moving. We have decided to terminate our lease and move into a rental house. It is much larger than our apartment, and has a huge yard and shop for andy to do work in. The best part, rent is cheaper than our apartment. That is why the decision was made. We can have more space for less a month. More space is a good thing for mine and andys relationship (as we kind of step on eachother's feet in the apt), good thing for Genevieve to have more room to run and play, and a good thing for little Kingston, who will have a yard again to run and play in. As of right now we do not know the exact move in date, as they are doing renovations to the house, but it will be sometime in October. We have to be out of our apt by Halloween.

a promise kept

Remember, I promised I'd give the full update today... :)

Genevieve is doing very well. We had an appointment with our new pediatrician for her 18 month wellness check in August. We both (Viv and I) really liked her. She asked me a lot of questions about Genevieve's EHK and our routine. I liked that she asked the questions rather than me rambling on trying to tell her everything and then feeling like she wasn't listening or something. Genevieve seemed very comfortable with her too. Genevieve weighed in at 21.5 lbs and 33 inches long. She is super tall and skinny. The ped was a little concerned about Genevieve's ankles (which I have been also). Her ankles roll in really bad when she is walking. She also walks with her arms straight out like she has poor balance. So she (the ped) asked that we check in with Amy (Viv's Physical Therapist) and maybe discuss braces for her. I was expecting that. I guess I've been expecting that since she was an infant and braces were brought up for her hips at one point. So we see Amy next week. However, I did not wrap Genevieve's ankles one day and noticed that without bandages they do not roll in as bad and she walks better. So I'm almost curious if it was just the bandages and how i had them wrapped? So I have not been wrapping her and so far so good. A little nerve wracking for me as her feet are her worst and most sensitive area, but so far so good. Genevieve is walking and running everywhere. She loves to play with balls and throw them with you. She loves her puppy (or well he's a dog lol) more and more every day, and he loves her just the same. She's becoming very independent and her personality shines through more and more every day.

Long time... no chat?

Well I just realized it's been forever (literally) since I posted an update. So much is going on. More so exciting things than bad things, but it is now 2:30am and I realized I should be asleep by now. So I promise (yes I promise) that I will update tomorrow with all of it.

For now though, I will say that we are all doing very well and Genevieve is doing wonderful.

A perfect explanation

Taken out of a newspaper:

TELL ME ABOUT IT
Why don’t friends with kids have time?


Dear Carolyn: Best friend has child. Her: exhausted, busy, no time for self, no time for me, etc. Me: (no kids: what’d you do today? Her: Park, play group…. Ok, I’ve talked to parents. I don’t get it. What do stay at home moms do all day? Please no lists of library, grocery store, dry cleaners… I do all those things, too. I guess what I’m asking is: what is a typical day and why don’t moms have time for a call or e-mail? I work and am away from home nine hours a day (plus a few late work events); I manage to get it all done. I’m feeling like the kid is an excuse to relax and enjoy, but if so, why won’t my friend tell me the truth? Is this a contest (“my life is so much harder than yours”)? What’s the deal? I’ve got friends with and without kids and all of us child-free folks have the same questions? –Tacoma, Wash

Dear Tacoma: Relax and enjoy. You’re funny. Or, you’re lying about having friends with kids. Or you’re taking them at their word that they actually have kids, because you haven’t personally been in the same room with them. I keep wavering between giving you a straight answer and giving my forehead some keyboard. To claim you want to understand, while in the same breath implying that the only logical conclusions are that your mom-friends are either lying or competing with you is disingenuous indeed. So, because it’s validation you seem to want, the real answer is what you get. When you have young kids, your typical day is: constant attention, from getting them out of bed, fed, cleaned, dressed; to keeping them out of harm’s way; to answering their coos, cries and questions; to having two arms and carrying one kid, one set of car keys, and supplies for even the quickest trips, including the latest-to-be-declared-essential piece of molded plastic gear; to keeping them from unshelving books at the library; to enforcing rest times; to staying one step ahead of them lest they get too hungry, tired, or bored, any one of which produces checkout line screaming. It’s needing 45 minutes to do what takes others 15. It's constant vigilance, constant touch, constant use of your voice, constant relegation of your needs to the second tier. It’s constant scrutiny and second-guessing from family and friends. It’s resisting constant temptation to seek short-term expense. It’s doing all this while concurrently teaching virtually everything – language, manners, safety, resourcefulness, discipline, curiosity, creativity, empathy, everything. It’s also a choice, yes. And a joy. But if you spent all day, every day, with this brand of joy, and then, when you got your first 10 minutes to yourself, wanted to be alone with your thoughts instead of calling a good friend, a good friend wouldn’t judge you, complain about you or marvel how much more productively she uses her time. Either make a sincere effort to understand, or keep your snit to yourself.

Silly girl

Well, our vacation was wonderful! We came back after about 4 days. Genevieve got sick about a 30-45 minutes into our like 5 hours of travel time (by plane). The first time she has ever thrown up, just had to happen on an airplane! Geez. And it was A LOT. I honestly feel a lot is an understatement. It was all over me, herself and the polite lady next to us who was on her way to Mexico for her wedding. AWESOME! Luckily she was very sweet about it and her and her friend brought us some wet paper towels and every flight attendent on the flight helped me with cleaning up and gave us blankets and everything. I only had a change of clothes for viv, but that was fine. I just had to sit with food chunks stuck to the back of my thigh for the rest of the flights lol. The flights home Genevieve did great. She slept most of the two, and when she wasn't sleeping she read stories to me. She missed her daddy and puppy alot. She would walk around Alicia's house going "daddy? daddy?" and I had Andy send a picture of Kingston (our dog) to my phone and she just lit up when she saw him. She enjoyed playing with Laela (Alicia's daughter), even though Laela seemed a little unsure of Genevieve at times. It was icky warm down there. About the only thing we did was the zoo down there, but it was a great zoo. You really got up close and personal with the animals. I liked it. On the first day we also (the kids were asleep in the back seat lol) drove along the Chesapeake Bay Tunnel Bridge. It's this awesome highway that goes over and under the Chesapeake Bay. By under I mean big long tunnels that go under the water. It was a little nerve racking as both Alicia and I have huge fears of drowning, but it was beautiful to just be surrounded by water.

Here is one of the pictures from Virgina. This was taken from Alicia's patio, perfect view of the ocean about a block away. <3


Things have been great since we got home. I started my summer quarter for school yesterday. So far so good, but then again it's the very beginning of the quarter. I am trying to get down to the bottom of a problem from last quarter though. I looked at my grades and for some reason I received an Incomplete in my math course, when it should've been an A. I get a feeling the teacher was slacking off yet again and still hasn't turned in grades, but I have no idea. I've emailed my instructor and also my student rep twice now. If I don't hear from them tonight, I'll be taking a trip to campus tomorrow.

I planned a ladies night for a few weeks back. It started out as just me and my cousin, Carla, to go see the midnight showing of Eclipse (yes, I love twilight lol). Then the night of the showing it ended up with me, Carla and two of my friends. Dinner and drinks before hand. And another stop for another drink at the mall while waiting in line. It was a wonderful night out, something I definitely needed. And now we have plans for a girls night out every 2 weeks or so.

We had a fairly relaxing 4th of July. We went down to Andy's sisters place. And while I won't comment on my feelings about things there, Andy seemed to have a good time. Genevieve was exhausted so we headed home before fireworks. I also knew she wouldn't be able to sit through fireworks. Her ears have been super sensitive lately, so I knew fireworks would most likely hurt her ears.

Genevieve is walking more smoothly now. She can even bend down and pick stuff up or crawl and then stand herself back up with no help at all. She has thinned out so much now that she is standing up tall and walking. Tall and skinny, just like her daddy. She looks like such a little girl now and not so much like a baby. Her hair has gotten pretty long (when it is straight, it is past her armpits), and it has gorgeous little girls. The top of her hair is finally growing in thicker too. She loves to put stuff in bags. If I'm cleaning and picking up stuff and putting it in a bag, she comes to help. She is not into everything, luckily. She loves to "reorganize" our dvd stand, and by that I mean she goes to our dvd stand and takes the dvd's off and stacks them on the floor.

We have a walker!!

Yesterday Genevieve decided she wanted to let go of the couch, next thing I know I'm watching her walk 10-15 feet across the living room to the entry way of our apt, and she smoothly bends down to her crawling stance (hands and feet, butt in the air lol) and starts playing with the shoes. The whole thing was so smooth, as if she's been walking for weeks already. Maybe she has been behind our backs? The rest of the day she continued to walk, about 3 feet each time. You could tell she was proud of herself. I decided to get the camera out and she decided she wanted to crawl. lol. little stinker. Well... the good news is, tonight I got a video finally of it. :)

Enjoy! <3

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 http://www.stephiemc.etsy.com

march and april.

Updates from me have been few and far between lately I guess. Genevieve is doing wonderful. She went a week ago and had her ears cleaned out. Her ENT again praised me on how well we take care of her and managing her skin. He always gives me a good boost of confidence when I'm feeling low about her EHK. And the appointment always comes around right when I need it. Recently, I've been thinking about maybe calling her physical therapist to set up a single session to have her help me figure out a way to help Genevieve with her standing and sitting. She still cannot go from laying down to sitting without assistance. You have to help her. And she doesn't pull herself up on anything. I'm not too concerned, but considering she is walking along the furniture like a pro, I know walking without assistance is right around the corner. Another problem we are having is when she's standing, she is too afraid to sit down. If she happens to fall down on her butt, in the same motion as she would to sit down, she screams like crazy. If you even help her sit down, she screams too. I've been working with her for a long time to try and help her with those few things and we just can't get it worked out with one another. However, yesterday she was supposed to be going down for a nap and i heard her whimper a little so I peeked my head in her room and she was standing on her toddler bed! Just about gave me a heart attack. Considering she can't sit herself up and has never pulled up on anything... to do both in the same sequence for the first time AND do it on her toddler bed while holding onto the flimsy toddler railing. Ive decided to watch her closely and see if she shows signs of being able to do it. If she figures it out I will switch her crib back to crib form, just for safety for now. You may be asking "if she can't do this stuff, why did she switch her to a toddler bed already?"... well I did it in hopes of progressing her development. I have been working with her showing her how to slide off her bed on her tummy to a standing position.

I started school this week. Finally after almost 8 years of being out of High School, I decided to go back. It was one of my handful resolutions for this year. I got a new laptop and told myself I could only buy a new laptop if I went back to school and used it for school. So I bought the laptop beginning of March, figured out school and everything and started April 5th! I am going for my Associates Degree in Early Childhood Education with a Special Needs Specialization. I am also thinking about adding a second specialization of Child and Family studies to it. When finished, I'd like to find a job at a hospital and work with special needs children who are admitted and also with their families. If I continue full time my expected graduation date is March 2012. I am doing my program completely online, so I still have the ability to be home with Genevieve and work with her. My first week went very smoothly. I'm proud of how well I managed my time with Genevieve and school work and also with cleaning the apartment and everything else. Especially since Andy worked late all week.

We had a very nice Easter. Genevieve fingerpainted Easter eggs and made some Easter Baskets for her Grandmas. In her own Easter basket she got a new my little pony, a big thing of bubbles, a pool floaty for this summer, a new blanket and some goldfish crackers.

I will hopefully update again soon, sorry for the long delays between posts!

She's on the move!!!

hiccups and chatter

been away...

Well, it's been a while. Genevieve is doing wonderful. Andy and myself are doing well also. We have decided to stay where we are at for another year instead of moving. So we are now taking time to actually decorate the place... only took a year and a half!!! lol

Genevieve has started crawling within the last week or so. She gets up on her left knee, and puts her right leg straight out to the side and pushes off with her foot. She's rather cute about it all. I keep trying to catch it on camera, but everytime she sees the camera she stops. Little stinker.

She is getting around while holding onto furniture as well. She's cruising like a pro from furniture piece to furniture piece. Her balance still isnt great, as we learned today. She went from walking from one end of the couch, to the other... then switched to the glider and then to the ottoman of the glider. Well I have to assume the ottoman shifted (it rocks) and she fell. Knocked the left side of her head on the wood at the bottom of the ottoman and the right side on the leg of the coffee table. I picked her up as soon as she fell (I was picking up the living room where she was) and just rocked with her on the couch. She whined for a minute or so and then was fine. I thought nothing happened. I later noticed a big chunk of skin on her scalp pulled back, and out with it came her hair. So my sweet little girl will have a bald spot for a few weeks. It never seemed to bother her though. Then again later in the night she fell in almost the same exact spot, but instead got a scratch on the right side of her face. Oh the battle wounds of a mobile child... make that a mobile child with EXTREMELY sensitive skin. Andy handles the wounds no problem. Me on the other hand, I feel her pain and hate to see the owies.

She has grown into quite the ham. She has a large personality. She makes this adorable scrunch face, and is now making it everytime she sees a camera. She used to only do it when she would first see someone. My mom would call it her "hello face". She has started to hug, and is quite the cuddler with me and Andy. She is opening up to familiar faces now too. She even let my friend Judy pick her up and walk around with her.

Sweet story for a moment: one day Genevieve was cruising a long the couch. she slowly started inching her way towards the laptop that sat at the other end, while watching over her shoulder to see if I could see her going towards it (she knows she's not allowed to touch the laptops). She finally got to the laptop, that was open, and she looked at me, smiled and put one hand on the keyboard. She then looked back at me again, as if looking to see if I was going to yell at her and I just smiled. She then took both hands and put them on the keyboard and started tapping all of her fingers on the keys... just as if she was typing!

In a matter of a week, her top 4 teeth came through. She now thinks it is funny to bite me... and she only bites me.

At the beginning of the year I decided that I was going to do a 365 project of Genevieve, from her 1st birthday to her 2nd birthday. For those of you who dont know what a 365 project is, I will explain. :) A 365 project is where you take a picture every day for a year. Simple. So everyday since February 8th I have taken a picture of her, some are reptitive, but oh well. I then will edit them to just put the date on them so it is easier to organize in an album. I recommend doing this to everyone. She changed so much in a month alone. Changes I never saw because they were little things. But with pictures in front of you for every day, you see everything. I really enjoy it so far.

Andy and I decided to take Genevieve out of physical therapy. She would only scream through the sessions and wasnt really getting anything accomplished. She's been making wonderful progress at home with me. Her pediatrician was supportive and understood and so was her physical therapist. If at her 15 month check up there are concerns, then we will try PT again. So that means we are down to just having to see her dermatologist, pediatrician, and ENT. WOOHOO!!!! :)

Happy Birthday!

Genevieve Mae is ONE!!! I have no idea where the year went to. Her and I spent the day hanging out. She destroyed two cupcakes, had physical therapy and then fingerpainted some cards tonight. I'll write more later, but just wanted to put some pictures up.

. a new year .

Cheers to a new year!! I hope everyone had a safe and happy holiday season. We laid low, since all 3 of us have been feeling pretty crummy since just after Christmas. I think the 3 of us are just passing it back and forth. Genevieve went to bed early, and Andy and I watched Paranormal Activity. You know, that movie had a lot of hype.. everyone saying it was so stinkin scary and blah blah blah. To me and Andy, it was not scary. We actually laughed more than we jumped. It got done with 2 minutes til Midnight, talk about perfect timing! So we watched the ball drop then stood at our patio door and watched the fireworks being lit off at a nearby ski hill. It was the perfect way to ring in the New Year.

We had our counseling appointment at the U of M last year. Just as I expected, didn't learn anything we didn't already know. But that's ok. The doctor gave me some great information to help with my goal for the New Year. And I also shared my blog with him, so he can keep up with Genevieve and her care. I thought it was great that he wanted to keep up with her story, I WANT doctors to be interested in EHK, for them to want to learn about it, know about a case, even if they are not treating it.


So what is everyone's goals for the New Year? It's a new year, a new start for many.

I spent a good portion of 2009 sort of grieving I guess you could say. While pregnant, I was told everything was great with my baby and she was healthy. When Genevieve was born with EHK, I was definitely knocked off my feet. I was angry. It was nothing we knew about. Nothing we had ever even heard of. I had emotional breakdowns often, even after getting on "happy pills". I finally feel at a good place with her EHK. I feel I have truly accepted it and am at peace with it.

When Genevieve was in the NICU after she was born, we felt so alone. We felt as if we only had one another. Her doctors had no answers for us. Not even after giving us the skin biopsy results. They had never seen EHK. Had only heard of it from textbooks. Very rarely will doctors even see an actual case in their careers even. We turned to the internet and researched Epidermolysis Bullousa (which they first thought it was before a skin biopsy was performed), not a good idea to turn to google. When she was diagnosed with EHK, we again turned to google and it still wasnt a good idea, but our only options, so no one could really tell us much. That is how I've gotten most of our facts, and information. Google. I turned to the FIRST (Foundation for Icthyosis and Related Skin Types) and asked if they had any contacts for me in Minnesota with experience with EHK. They had no doctors for us, but put me in contact with a lady in Bloomington, who has EHK. She then put me in contact with 2 other families. We now have 4 contacts in Minnesota with EHK, and 6 or 7 contacts in other US states with EHK... thanks to Babycenter.com, FIRST, friends, and our blog.

My goal for 2010 is to start a program for EHK Survivors. People of all ages are welcome. Family members of people with EHK. Obviously people with EHK. Etc. A place for them to get information. Talk to other EHk families. Specifically for EHK. There is nothing like this. Ideally I want to be contacted when a family has a baby with EHK symptoms, whether by a nurse or the family themselves, to be a helping hand to the family. To help them through that tough NICU stay when no one has answers. To let them know it'll be ok and what they can expect. Or contacted after the baby has been diagnosed. I dont want any family to feel alone through that time. After I am contacted, I will talk with the family and see if I can put them in contact with another EHK family in their area (if there is another family) so that they can become friends for a support system. I'd also make sure they were in contact with all the members of the program. So for my fellow EHK families that read my blog, if you'd be interested in participating and being a part of this goal, please email me at aschmaedeka @ yahoo.com and put EHK in the subject line.

We have some very exciting things to look forward to in the next 2 months. First, we get to meet some of our closest EHK friends, Jenny and JJ (Jeremiah). I've written about them on here a few times. They live in Colorado. When JJ was born and in the NICU, his nurse gave Jenny our blog address (no idea who his nurse was or how she got our blog address). Everytime I think about how we were put in contact it just warms my heart. JJ is only 2 months younger than Genevieve, so our families are kind of taking on EHK together. We share advice, we turn to eachother for shoulders to cry on and break down on, and even just to talk about everything. They will be here in Minnesota at the Mayo Clinic at the end of January. Hopefully they can get some answers there for JJ's EHK. He has a very severe case. He's spent a lot of his life in the hospital with infections and nothing seems to be improving his skin. Andy and I will be going down there to meet them and have dinner one night. Myself, and another EHK family (HI TONETTE!) are going to drive down there another night for dinner as well.

Here is a picture of handsome JJ




The other thing we have to look forward to is Genevieve's 1st birthday on February 8th!! I can't believe it's been a year. That's crazy. I was looking through old posts on here last night and I saw the video of her rolling over. I choked up a little. It's seems like just yesterday that I took that video, and really it was months ago! I remember choking up when she rolled over too. It was such an accomplishment for her. Now she is standing and will take 2 or 3 steps if you're holding her hands. Man. She's growing so fast. She has recently finally shown an interest in crawling. I think she just wants to be mobile so badly, that she cant figure out how. haha. She's trying so hard. Soon though. I hope. You can tell she is so sick of staying in one spot.

Genevieve's skin is doing very well. We continue to have sores on her feet, but it's only when we are picking at the build up. She had a blister on Christmas on her calf, but I'm almost positive it was only because I was holding her the entire time Xmas eve and Xmas day, so shifting her between arms and what not. So she is doing GREAT. I am still working on her saying Mama. I'll say Mama, she'll say Dada. She has recently starting to say "Hi Dad" and will lift her arm up and wave. It's really cute. It's always when he's in the kitchen and she'll be on the floor in the living room. haha. She's got quite the personality now. She makes tons of different faces, and will giggle after making some of them.

I guess that is about it for us. We have an ENT appt this week to get her ears cleaned, and an eye appt the following week just to check and make sure her EHK isnt affecting her eyes. Nothing too overwhelming.

I hope everyone had a happy and safe holiday season!

Anna.



Genevieve LOVES to watch Elmo.



She also loves her elmo.



With her new blanket that her Auntie Alicia made her for Christmas.