Saturday, September 19, 2009


Quick update... letter came yesterday. Medica denied our appeal again.

now on to plan B.

Friday, September 18, 2009

update with lots of pictures

Genevieve is doing very well. We brought her in to her pediatrician to have cultures done on her feet and by the time we got in, her feet looked great and no longer needed to be cultured. So we took that time to just ask questions. Found out more warning signs to watch out for with infections. What hospital we should bring her to. What would happen if we brought her in to the hospital. Asked more questions about the "what ifs" she got chicken pox. We ask a lot of questions all the time haha. Physical therapy is going great still. Genevieve actually fell asleep at the last session. Our PT had her laying on her belly on the swing, with her knees under her body, and Genevieve just mustve been exhausted. We recently decided to switch from Aquaphor to using Cetaphil Moisturizing Cream. It's just like a thick lotion. Her skin is look AHHHHMAZING! Her heels even look great. With the Aquaphor it looked like hard skin on her heels and felt like a shell on her heels. With the Cetaphil they are actually soft! :) The redness of her skin is going down as well. She seems comfortable with it and since her skin is looking amazing we will stick to Cetaphil now.

We have our Genetics Screening on Tuesday. Pretty much they are just talking to us about all of the Genetic factors and discuss the testing with us so we can make a decision if we want to do the Genetic Testing. Although, we already know we want to. They called me yesterday to get family history. I had smart ass comments I wanted to make to some of them, like if my brothers didnt have kids by choice or infertility. And if Andy and I were related. Yup they asked that. It was a good thing I was at my brothers house when they called and that my mom was there. I did not know very much about our family health history, nor did I know ages of some of my deceased relatives.

We had my cousins wedding last weekend. Genevieve was great through the whole thing. She stayed up partying til 11:30pm too lol. Little Stinker. A lot of my family who had not had the opportunity to see her, got to, so that was nice. She was very well behaved, and insisted on screaming bloody murder through the best man's speech lol.

She has also had her first experience sitting in a public high chair. Andy and I decided to go to Perkins for breakfast (something we did almost every weekend up until Viv was born) and she did really well in it. Then I decided to sit her on my lap and Andy gave her a tiny piece of my muffin. She started to choke, I got it out, then she threw up all over me! But she didn't seem phased by it, and I'm glad she's ok.

Wednesday, September 9, 2009

her poor little feet.

We spent much of last night trying to decide whether or not to bring Genevieve into the Emergency Room. She has been breaking out worse than usual lately, and her sores have been "different". Normally the blisters don't have much fluid, and lately they've been full. Normally they're pink, and lately been bright red and some even bleeding. She's also had a ton more than usual. Yesterday she was rather lethargic. Didnt want to do anything. Didnt want to sit up. Didnt want to go in her jumperoo or stroller for a walk. Didnt want any of her toys. Just wanted to lay on her back and be left alone. I tried reaching a nurse at the ER twice, only to sit on hold for 20 minutes each time before becoming overly frustrated and simply hanging up. I talked to two of the families we know with similar skin diseases and they said they'd bring her in. By then, Andy had already laid Genevieve down in her crib, and she was already asleep, so we decided to wait til this morning to do anything. I'm now waiting for her dermatologist to get in at 1pm and call us to let us know when she wants to see us to do a swab test to test for an infection. It'll be today or tomorrow. So that's all that is going on...

Here is a picture of her feet from last night....

Wednesday, September 2, 2009

short update

appeal was typed up, only to have our printer ran out of ink halfway through printing it. so after being hand written, it was sent in. We will have a response to the appeal within 30 days. wish us luck!

Physical therapy is going to switch to every other week (instead of weekly) starting in October going til the end of the year. At the beginning of December she will be re-evaluated again.

That's all I have to say. Too much going on in our lives (nothing to do with Genevieve) to really have much to say these days...

So have some pictures.