Thursday, August 13, 2009

mayo clinic update.

Sorry for the lack of update in the last week. Genevieve had her 6 month check up... shes up to 16.5lbs and 26.5inches! She's getting so big! Her ear still bothers her, but it's healing. She's been super crazy crabby the last few days... tylenol is back on a regular basis again. :( Her ped said her gums were swollen but no signs of teeth anytime soon. So I dont know if she's in pain from that, or if the humidity lately is bothering her skin... or if her skin is just hurting her in general. :(

We were informed that Medica did not approve our request to be seen at the Mayo Clinic. I wont lie, I broke down when I got that information. I just want answers. Her derm is great, but only has experience with one other family and when we ask questions we dont feel she's confident with her answers. We want answers from someone who has more experience. Like the mayo clinic. They also have treatment options that have shown 90% improvement in EHK cases... so we want to know more about that. My daughter is in pain all the time. Holding her gives her sores. Changing her diaper gives her sores. If it were your child, wouldnt you want to know about possible treatments that could help elimate some of the pain? Wouldnt you want to have your child be seen by someone with more experience? Medicas reasoning was that there are plenty of dermatologists IN NETWORK who can see her. The statistic is that only 1% of dermatologists have experience with EHK. From what I've gathered, most EHK families do not even have a dermatologist. But we are just supposed to take her to another random dermatologist without experience? no. I dont think so. I plan to appeal the decision, of course. I did decide though to take the rest of this week off from everything medical. I needed a break. I needed a few days to free my mind of it. I plan to call Medica tomorrow to find out what I need to do for the appeal, so I can get it rolling on Monday.

We are hopefully getting our membership to the F.I.R.S.T (Families of Ichthyosis and Related Skin Types) Foundation. We've been meaning to since Genevieve was born and we just havent had the $40 dollars to get the membership. =/ They do a large conference every 2 years for their members to meet and spend time together and get information. The next one is in Orlando, FL in June of 2010. It is very important to me for us to try our best to attend that conference. I believe we would benefit from the experience. It's at disney, and Genevieve will be too young to enjoy of any of that, but I figure it's the last summer that we will be able to travel with her on a plane without having to get her a seat as well... and who knows when they'll get back up within the driving distance for us (the last one was in Chicago). So I have been trying to get some things calculated out with that so we can try our best to save up for it.

After recent talks with family and friends about the Mayo Clinic and future medical expenses for her and her medical needs in general... we have decided to set up a donation account for people to donate money to help us meet her needs. If you are interested in donating to Genevieve...

now time for some pictures.

my mom did that picture for me of Genevieve. I LOVE LOVE LOVE it.

shes so cute when she sleeps... and check out those chubby thighs!

my favorite picture.


  1. She's a doll! I hope you get the insurance thing worked out! You guys are in my thoughts! I *wish* I had money to spare!

  2. Poor baby!! Glad her ear's a bit better now, but it sounds like she's more uncomforable than usual. :( I'm so sorry the insurance company decided against your appt at Mayo. I hope your appeal(s) work & will keep my fingers crossed! When I can spare something, I'll try & donate!

    Erin & Ginny