This was the week we have been anticipating since last summer! On Tuesday, Rebekah had her eye appointment with her new doctor and today, her repeat echo cardiogram.
On Monday, Casey, Rebekah and I headed down to UIC and were able to stay in their IMD (Illinois Medical District) housing for a discounted rate. It was a dorm suite, but for Rebekah it was a hotel and the greatest thing ever! She was sooo excited and told me she wished we lived in a hotel!
On Tuesday morning we checked out of our 'hotel' and headed to the Ophthalmologist. We met with the new doctor and Dr. Maumenee, the doctor who gave us the correct diagnosis for Rebekah last July! Rebekah's eyes are doing great and they changed the prescription in the left lens of her glasses. Doing this should help her see a line or 2 better. Which means, instead of her vision being 20/80, it should bring her to 20/70-20/60 with the left eye. Her right eye is still at about 20/25. The goal is to get the vision in the two eyes as close as possible and to continue patching her good eye for 3-4 hours a day to keep the "weak" eye strong. As we have said before, Rebekah will most likely need both of her lenses removed at some point, but it could be 20 years from now. And....who knows what advances could be made in that time! YAHOOO!!!!!! So, our next steps with her eyes are to get her new glasses, keep patching and follow up with the doctors again in Decemeber.
Today, Grandma Lebar, Casey, Rebekah, Aaron and I headed down to the new Lurie Children's Hospital. We didn't get to see much of it because we had to get back to Crystal Lake for Rebekah's 1st summer art class, which she loved...of course. We took the train to Chicago. Aaron (Mr. I love anything train) was beyond excited and enjoyed watching out the window! Today was the day we were greatly anticipating...her repeat echo cardiogram. Since the Marfan diagnosis was disproved by Dr. Maumenee late last summer, we had high hopes that everything would be fine with her Echo.... WE WERE RIGHT. The was one measurement that could have been considered slightly above normal, but no worry to us or the cardiologist. She told us Rebekah can do any activities she wants and, though she doesn't want to release her from follow-up yet, she doesn't have to come back for 2 years! YAY!!!!
Also, after talking with the cardiologist, who we totally love, it could also be that after Casey is followed for a couple years, that his slightly above normal numbers, could just be Casey's "normal"!!! YAY AGAIN!!!!!!
So, what do we say now? After Rebekah's eye appointment on Tuesday, I came home and emailed Dr. Maumenee to thank her for being such a blessing in our lives. I started thinking about the Marfan diagnosis again and I started sobbing. Not because I was sad, but because I was relieved. I felt a weight lifted off my shoulders. Had Rebekah never had that diagnosis, we wouldn't have found Dr. Maumenee. This means we may have had her lens removed prematurely and we wouldn't have the correct diagnosis and would probably be worrying a lot more. Dr. Maumenee is an angel in our lives and we are so grateful to her and her help in getting the best doctors and the best care for our sweet, sweet Rebekah; who (she would want me to tell you), is officially a 1st grader now!!! WOW!!!
Thank you to ALL our family, friends and followers who have encouraged and supported us! We are sooo blessed to have so much love in our lives. Enjoy your summer and I will update again when there is more to tell.
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