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!

1 comment:

Kenneth Lininger said...

Hi there,

We started our jounrey in late 2011, shortly after Mary Zupanc came to CHOC. We fell in her lap after ER admittance, and met her on a Sunday afternoon to get life changing news. But she was very frank, and after about 2 weeks of data collection, predicted her case to a T. several years later, it has played out like she described. I was saddened to hear she stepped away from CHOC, but then returned in a a supervisory role. I hope everything is okay? We sent a Christmas card this year and no response, and my contacts from years ago seem to have moved on or something has changed? Is Stacey still the APRN in the office?

Anyway, I am enjoying your blog. Thank you for your effort here.

Ken Lininger