All of the testing I previously mentioned in the last update for Jenelle has begun. On August 21, Jenelle had a sedated MRI at CHOC. Given this child's love for food, I was not anticipating the "fast" before sedation. I took the day off work, and allowed Jenelle to sleep in as late as possible. When we arrived for our check in at 11:00 AM, she was just about to show signs of hunger. Of course, it could have been a perfect event if not for the hour and a half wait for the MRI to get started (on top of the hour and a half that we had to arrive before our scheduled MRI time of 12:30.
By 2:15, a very cranky Jenelle entered the MRI room, and the anesthesiologist allowed me to place the gas mask over her face to put her to sleep. We will not have the results for a while; most likely at our follow up visit with Dr. Tran.
On Saturday, Jack, Jenelle and I left for the Bay Area where Jenelle had an evaluation scheduled for Monday, August 25 at 10AM at UC Berkeley. We stopped that night for a quick visit with Nana and Poppa George, and then drove the rest of the way to Aunt Norma & Uncle Dave's where we briefly got to see cousin Matthew before he left to get back to Cal Poly. Jack loved the trip, and really enjoyed playing with their dog Murphy.
Jenelle was evaluated by Dr. Orel-Baxter at the Berkeley Eye Center. Although we won't have the full report for a few weeks, Dr. Orel-Baxter did give us a lot of valuable information that she was able to gather during her two hour exam. What was not too surprising is that Jenelle is legally blind, seeing what most people see at 300 feet at 20 feet. They felt her stronger eye was the right, although she has a tendency to look at things from the left side. The Doctor noticed that her right eye would gaze over her nose, while the left eye would wander away. Very interesting because when you see her look at things, you would think the left eye was the one that works better.
Jenelle can see colors and can recognize patterns, although her ability to distinguish texture was not completely confirmed. The most astounding thing we learned is that Jenelle cannot see anything above her nose. This explains why she arches her back when lying on the floor, or why she tilts her head back when sitting. The Doctor said that if Jenelle is sitting, and we speak to her while standing, she probably cannot see above our waist, and definitely cannot see our face at all. Again, it explains so much about her behavior.
The Berkeley Eye Center will submit their report to California School for the Blind in a few weeks, and CSB is scheduled to travel to Southern California to observe Jenelle in the class, at daycare and in the home on October 1, 2 and 3. After their on site visit, they will submit their final report to our IEP team.
After her exam on Monday, we had lunch on campus and walked around Berkeley. Jack thought it was a beautiful campus, but his heart is at UCLA. After lunch, we drove into the City to walk around AT&T Park, Lombard Street and Fisherman's Wharf. We left super early this morning so Jack could get home in time to register for 8th Grade! We are almost a week away from the start of school with both kids in Middle School! It's all going too fast!
We want to thank our hosts Aunt Norma & Uncle Dave! They fed us well and gave us many tips on driving in Berkeley and in the City. That is all for now - as always, I'll keep you posted!
Tuesday, August 26, 2014
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