Blessings

So the last couple weeks have been very emotional as we are trying to take in all this information and trying to understand how move forward. Many of the emotions have been that of being scared, nervous, fearing the unknown and what's to come. However, some of the emotions have been due to good news and lots of support.

Since our last post, Aaron has had his eye appointment and he passed with flying colors!!! Everything looks great! However, he did face-plant off his stroller on the floor of the waiting room and got a bloody nose, bloody mouth and fat lip. He is fine and his nose is a little swollen and slightly purple, but I think it is all part of his journey into boyhood - lots of bumps and bruises! :-)

As for some of Rebekah's news...going into Rebekah's appointment with the eye surgeon, we were prepared for him to recommend surgery and pretty much figured that it would be the next step. However, after sitting on that recommendation for a couple days and realizing that now we had Marfan Syndrome to consider in this, we decided her eyes are TOO precious to jump into surgery. This Dr. is probably great at what he does and has been in practice for 20 years but has only done about 20 surgeries like what he is recommending for Rebekah, which is not a big enough number for me and we wanted someone who KNEW Marfan Syndrome, so I decided to start reaching out.

Marfan Syndrome has a Foundation and that is where I started!!! I spoke with a couple of parents with kids with Marfan and heard their stories and they listened to mine. They also have a community online similar to Facebook, for people with Marfan and people who LOVE people with Marfan. I created a profile and joined a group for dislocated lenses and started asking questions. Several people shared their experiences with having the surgery and why or why not they were glad they did it. One mom shared her daughter's story that is very similar to Rebekah's and how they decided not to do surgery and her vision is getting better several years later with exercises on the computer and better glasses. I was overwhelmed by all the responses I received and how quickly they came in.

I also spoke with the Nurse on staff at the National Marfan Foundation. She got me in touch with the Ophthalmologist on their Medical Advisory Board, who is an expert in Marfan Syndrome and who happens to be doing research at the University of Illinois in Chicago. I spoke with her a couple weeks ago and based on what I told her she said she would NOT recommend surgery. Because she is currently doing research, her license is not current, but she recommended another Dr. there who could see her who is also very familiar with Marfan Syndrome. She also said that she would come to the appointment and take a look and is hoping to get a better prescription for her glasses. Because of Rebekah's age and her dislocation it is realllllly difficult to get an accurate refraction for her glasses, but we are going to see what happens. So now we play the waiting game. We are waiting for the two Drs. to coordinate their schedules so they can both be there to see Rebekah!!

Casey and I both feel so much better knowing we have more information and have another avenue to go down (at least for now)! The support that we have received from the Marfan community has been so incredible and we are so blessed to have this available to us; especially in this time of uncertainty!

Thank you all again for your continued prayers and support!
Love,
Deanna, Casey,
Rebekah and Aaron