Tuesday, August 26, 2014

Update re MRI & UC Berkeley Eye Center

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!  

Monday, August 18, 2014

A long overdue update on Jenelle...

Wow, so much to say... here we go!

As you may recall, at our last appointment with Dr. Shields, he announced his official retirement and that it was the last time we'd be seeing him.  We knew this was coming, but I was shocked it came without much warning.  Regardless, Dr. Shields, Sue Yudovin and the entire Pediatric Epilepsy Department at UCLA will always remain in our highest regard.  We owe them so much.

So, onto a new Neurologist.  I was confident with Dr. Shields recommendation to return to CHOC and have Jenelle seen by Dr. Zupanc, the head of CHOC's epilepsy program.  We had an appointment for the end of February, until we were informed that Dr. Zupanc had began an unexpected leave of absence.  CHOC offered other Neurologists, but I decided to wait it out to get an appointment with Dr. Zupanc if and when she returned.  Ultimately, I had learned though patients of Dr. Zupanc that she would return to CHOC, but would not be accepting new patients preferring to "oversee" cases rather than run them.  With that news, I made an appointment with Dr. Lily Tran, a well recommended Epileptologist with CHOC, for July 30.

Our first appointment with Dr. Tran was AMAZING!  We literally spent two hours with the doctor reviewing Jenelle's medical history from pregnancy to present day!  She was fun, energetic, easy to talk to (especially for Brett) and very interested in improving Jenelle's quality of life.  Dr. Tran has ordered a full work up including a sedated MRI for August 21, and a hospital stay at CHOC's Epilepsy Monitoring Unit for 3 to 5 days in late October.  The visit in October will include a Video EEG, some genetic testing and a visit with Dr. Tran's entire team.  It should be very valuable in determining where Jenelle is and what is going on with her seizures.  I was very pleased when Dr. Tran stated that given all of the obstacles we had in the first few months of Jenelle's life (i.e. realizing now that she was having seizures months before she was diagnosed and treated) Jenelle was doing really well and perhaps better than expected for an LGS patient.  What a nice compliment to us, and to her previous medical team at UCLA.

Now, along with all the new testing to be done at CHOC, Jenelle is finally getting an evaluation and assessment of her communication skills via the California School for the Blind.  We have an appointment on August 25 for a "Functional Vision Assessment of a child with Multiple Disabilities" with the Berkeley Eye School located in Berkeley.  Aunt Norma and Uncle Dave will be our hosts for our visit to he bay area, and we are looking forward to spending time a little time with our family in Northern California.  After that assessment, the California School for the Blind, and Diagnostic Center of Southern California will visit in early October to evaluate Jenelle's communication skills and adaptive technology needs.  All of this is happening as a result of our IEPs during the last year and a half. 

Speaking of school and IEPs... we have agreed to have Jenelle move to a new moderate/severe special needs program located within our District at Currie Middle School.  Jenelle is moving up and will be on a new campus, with a new teacher, new class room and new friends in 6th Grade.  I can't believe both kids are in Middle School!   Jack is very excited for his final 8th Grade year at Utt Middle School (yes, unfortunately they go to different schools!)  I am also very pleased that Jenelle's IEP team is very interested in considering the TOBII device that our friend Lily in Arizona is using for communication!

While there will be a lot of upcoming changes for our girl, one thing will remain the same.  Jenelle will continue to go to the YMCA After School Program and be with the same one on one Inclusion Aide that she has been with for two years at Benson Elementary.  The YMCA inclusion program says they can stay enrolled until age 13, and possible even a year after.  So after school at Currie, Jenelle will be transported by bus to Benson to stay at YMCA until pick up at 6:00 PM.

So, there you have it.  Lots going on and lots to look forward to in the fall.  Thank you as always for your continued prayers.  As always, I'll eventually keep you posted on our journey!