EVA (Update on Miss E)

OK, I'm feeling like I need to update everyone on the latest with our Evie girl! Last week we spent 3 out of 5 days in Salt Lake City @ Primary Children's! UGH! Longest 3 days ever . . . for all of us! We found out some 'news', good news, not great news, hard news, confusing news, etc etc etc. Here is how it all went down! Day 1 of 3: Evie had an MRI of her brain/ears to see if there is anything structurally wrong with her inner ears. After the MRI, while in recovery, they did another Auditory Brain stem Response test. Both of these tests are done while your child is sedated :( Probably spent a good 7 hours there that day!
Day 2 of 3: We met with a Geneticist and her ENT, where they explained to us that Evie has a moderate hearing loss in both ears AND has LVA (Enlarged Vestibular Aqueduct). It's this tiny little tube in our ears, and hers is enlarged, aiding in the cause of her hearing loss (picture @ bottom). The good news, is that this only effects the ears. We don't have to worry about her eyes or any other kind of syndromes associated with hearing loss. The bad news is that this can be progressive. The overwhelming part is that it can progress SUPER fast, super slow or not at all - we just have to play the 'waiting game'! I'm praying that for her it doesn't progress at all!!! Just as we were leaving the hospital the doctor called Braden's cell phone and says, "I just got a call from radiology, please come back!" Then we find out that her MRI showed some 'spots' on her brain, they didn't know what they were so they ordered a CT scan immediately! Talk about roller coaster! Since we knew Evie wasn't going to 'hold completely still' for 5 minutes while getting the x-ray they had to sedate her AGAIN! This time it was the worst for us because she was awake but totally out of it! She started giggling and trying to wave at us and I just wanted to pick her up and cry! The test results showed that it was 'nothing' . . .
Day 3 of 3: Hearing aid evaluation. This was SO hard for me. Harder than I thought it would or could ever be. The audiologist kept saying, "This is the 'fun' part, picking out colors and ear molds!!" It really wasn't fun at all. I had a hard time picking colors and getting into it. Which is really hard for me to even admit, but it's the truth. That's when all of this became a reality for me. My sweet little baby has to wear these hearing aids for the rest of her life. I felt sorry for Evie a good portion of the way home that day. Then I started thinking about the past few days - while we were waiting for Evie's MRI there was this lady in the waiting room who was feeding her baby through a feeding tube with syringes. Now that is a lifetime commitment if I ever saw one! Evie's hearing loss is seriously nothing she or I can't handle! Worst case, she losses her hearing completely, we have options! 100% deaf people with cochlear implants actually HEAR! Pretty freaking amazing.

Evie will have her pink/glitter hearing aids Nov. 4th, the day before she turns the big 1 year old!