May 21, 2011

FEVR Conference

Jake and I just got back from a trip to Michigan where we attended a FEVR conference. For those of you that are new to my blog FEVR stands for Familial Exudative Vitreoretinopathy and it's the eye disease that my son Jake has. A friend of mine Casey has a Daughter Emily and she also has FEVR. Casey generously invited Jake and I with her and her family to fly with them on their company plane to the conference.  Not only was this an amazing opportunity it was also Jake's first plane ride and I have to say he did AMAZING!! In fact my little man was pretty much amazing all weekend. I was terribly nervous because I didn't know what to expect with how he would react but I was pleasantly surprised. 


Had to get a picture outside the plane
Jake and Emily getting ready to take off


Friday night we attended a dinner where we were able to meet a lot of the parents. FEVR is such a rare eye disease so it was amazing to be able to talk to so many different parents that have children just like mine. Jake had a great time at dinner. He has this thing that he does where he goes up to any guy and wants them to pick him up. He pretty much did that most of the night. He played so nicely along side Emily.  They had a few different tables set up with different tactile toys for the kids. 






Little Emily. She is soooo funny and smart as a whip.
This is Sara. How cute is she!!!
There was a man at the conference that has FEVR. He walks with a cane and Jake wanted to try. No lie he knew exactly what to do with it. I think it's time to get Jake started on a cane. 






After the dinner we put the kids to bed and sat in the lounge and talked to a few of the parents. Casey brought her amazing babysitter Heidi and she stayed in with the kids. 


I learned so much this weekend. I have so many more questions but I feel like I now know what questions to ask. The parents that we met were amazing. Hearing their stories about their children helped me so much. Before today I felt like I just didn't know the stuff that I should know to be my son's biggest advocate but now I feel I have a way better understanding. 


I have to say thank you to Casey for allowing us to fly with her and her family. Casey is an amazing person who Jake and I are lucky to have met. So Casey if you are "stalking my blog" I just wanted to say Thank you for EVERYTHING. I am glad that we had a chance to get to know each other better.  






I just wanted to share one more photo of Jake and Emily on the plane ride home. As I'm freaking out because of the turbulence Jake and Emily were having a great time. Me I thought I was going to throw up. 

6 comments:

Dana Leigh said...

What a great opportunity for all of you! There must be a lot of comfort and relief being able to talk and learn from each other and your experiences.

T's Mommy said...

What a cute post! Looks like he had a blast!

Ang said...

so glad you had this opportunity - even more so that you learned so much from it! Hopefully you'll be able to apply all that knowledge, maybe help someone else at some point too!

Kristi said...

What a great experience! It is extremely important for parents of special needs kids to have a support network and these types of conferences not only give you a lot of info, but also the network of people to help out. Glad you and Jake got to go and how generous of Casey to invite you guys along for the ride :)

Robyn said...

How awesome. I'm so glad you were given this opportunity!

Irmhild said...

Hello from a fellow 'FEVR mom'! I just googled the conference to see could I find out anything more about it, and came across your blog. I have two children with FEVR, my 2.5y old was diagnosed when I was already pregnant with my now 4m old. My daughter has fibrovascular scarring on both eyes, particularly the left, that's pulling her retinas out of shape and partly covering the macula .She's doing amazing so far but there is a real danger of retinal detachment, and of course further active leakage leading to more damage. My son has avascular areas, all around the retina, rather than just in the periphery, and had active leakage in one eye. He was diagnosed at 9 weeks, and had two laser treatments. The consultant was puzzled by the fact that the avascularity seemed to not only affect the retina but also the choroid in one place. He has no scarring so far.
I've got to do some blog reading now to catch up on your story! It's great to see your son so happy.