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.

Thursday, August 6, 2009

appointments, appointments, appointments.

Let me go back to the beginning of the week. On Monday while Viv was taking a nap on my lap, I noticed that there was a thin layer of dry blood inside her ear and along the edge of her cheek, so I laid her down and went and got a qtip wet and gently cleaned it off. She slept through it, and a half hour later I noticed it was bloody again. So I cleaned it again and tried to watch to see where it was coming from and couldnt figure it out. So I immediately called the doctor and made an appt for that day. Turns out we need to make her ear cleaning appts closer together. Her left ear was completely clogged with skin and wax and she had been pulling on it and sticking her fingers in it for a few days at that point. Apparently she scratched her inner ear with her nail, and thats what was bleeding :( poor little girl. her pediatrician cleaned out her ear a bit and said that if she starts pulling and sticking fingers in it again to call and get her ENT appt sooner (it's at the end of September).

We had our neurology appt yesterday morning. Genevieve checked out great. The only concern was that she doesnt have much muscle in her legs. We've been told to keep up with physical therapy... and try to put more weight on her legs by doing things like her jumperoo. And physical therapy yesterday went great as all. She's doing great with sitting up :)

I contacted our insurance today. They are still making a decision about our Mayo Clinic appointment. I'm remaining hopeful that they approve our request and will pay for our Mayo Clinic appointment. If not, we will have to cancel. We cant afford to pay for it all. :(

Monday, August 3, 2009

Well it's been a while. My mind draws a blank as to what I've been so busy doing. Genevieve is doing great. I cant believe shes 5 days shy of 6 months old. Seriously where has the time gone? Before I know it she will be a year old. Must capture more memories on camera.

We have a very busy month and a half ahead of us. So busy that I get overwhelmed just thinking about it. I believe at last count we have 14 appointments in the next month and a half. Including quite a few pretty big appointments. We see the neurologist on Wednesday. We have our appointment at the Mayo Clinic at the end of the month. We see our regular derm again. And we have our genetics screening in this month and a half too. Lots of time that Andy has to take off work to go to these new appointments, and somehow it's supposed to be ok for him to go out of town. We just cannot afford for him to take any more time off work, and we have things every weekend too... so he doesnt have much time to make up these hours that we cannot afford to lose. But nomatter how many times I explain it to him, he just doesnt "get it".. or better put, he just doesnt understand. So thanks, lets add more stress when it comes time to pay bills and we dont have the money. Anyways. Due to this, I will most likely be cancelling some of these *big* appointments so he can go out of town and i wont have to worry about time he has to take off for these appointments. UGH.

Anyways. Happier times. Genevieve is still doing amazing. She can pretty much sit up on her own now. And she is back to eating solids. She had a little bump with apples (she developed a small rash on her cheek)... so we put solids on hold for a bit, but before apples she tried carrots, sweet potatoes, and pears. She has now added "na-na's" to the list... and i must say, she loves them (but what kid doesnt love bananas?). She has learned to go "mmmmmmmm" after many weeks of me saying it for her when she would eat... and also in attempting to help her learn to say "mama" haha. She sucks on her top lip. And sucks on the corner of her bottom lip. Its really quite cute. She's also started to "hug". We've also gotten to hear a few actual laughs out of her... where before it was as if they got stuck haha.

So the next month and a half is busy busy for us all. We have those major appointments for Genevieve (plus weekly physical therapy appts and a 6 month check up with her ped). We have a wedding for a friend of Andys. We have my cousins wedding. We have a bridal shower. A baby shower for another cousin of mine. Andy's brother has a car cruise and car show going on down in Northfield. I guess after looking at my calendar its a busy next 2 months (august and september)... the last half of september we have 2 appts each week. Oh man. Oh!! And the most exciting thing of the next month... I have planned a together for us to meet the other families in Minnesota with Genevieve's skin disease!! All but one family (we know 4 other families in MN with EHK) have confirmed being able to show up. So it will be an amazing day. We are meeting at the MN Zoo so the kids can have some fun, and there is both indoor and outdoor stuff (in case of weather).

Cute story about Genevieve... Andy, Viv and myself ventured to Babies R Us over the weekend to buy a baby gift for my cousins shower, I'd love to say what it is but I'm not sure if she reads this lol... we got home, and I showed Genevieve and she totally stole it. She started hugging it and didnt want to let go. It was the last one at that store, so today I had to go on an adventure to the other Babies R Us stores nearby to try and find another one for my cousin. lol.

I'll get some updated pictures soon, but here's one for now :)

She was enjoying her "na-na's"