October, my favorite month...

Well, it's October.  I love this time of year.  I love fall. And most importantly... I love this month because it is Jenelle's birth month.  And we are long, long overdue for an update.  Let's see if I can catch you up.

June 2017

Jenelle graduated from Middle School and amazed us by walking in her promotion ceremony.  We had a final IEP for transition to High School and won the battle for a one on one aide.  Even more exciting... her 1:1 Aide will be the same woman who has been working with her for the past 3 years.  Sandra is in the photos below helping Jenelle walk at her promotion.  We love Sandra, and we are so excited to share Jenelle's high school experience with her.

Jenelle getting ready for the ceremony.

Jenelle and Sandra anxiously waiting to go onstage.

Our pretty and proud 8th Grade Graduate.

As for her seizures, at the end of last month, we had made many, many changes.  We had our follow up with Dr. Tran at the end of June to discuss the changes.  The addition of Banzel seems to be helping, but still Jenelle seems too drugged.  We decided to wean off of Onfi as it is most sedating.  As the saying goes, one step at a time, so this was the only change in addition to increasing the VNS just a touch.  Dr. Tran mentioned that she was planning to attend a seminar this summer about using the VNS Aspire as a solo for treatment of Lennox Gastaut Syndrome, so she was hoping to bring back some new information for Jenelle.  We scheduled our next appointment for August.


July/August 2017

Summer is always challenging for Jenelle because of the changes in her daily routine.  School is different because ESY (extended school year) extends her special education through the end of July.  She has more time at home as summer school ends at noon. And lots of changes in care givers.  Needless to say, Jenelle can get a little cranky.

We saw better seizure improvement over the weeks and when our follow up with Dr. Tran happened on August 18, we were at our best seizure control yet.  Dr. Tran had presented Jenelle's file at her conference and returned with a new plan on appropriate settings for her VNS.  Finally, before school starts she was finally doing better.  So well in fact, we weaned Jenelle off Ethosuxamide!  Two drugs gone in one summer!  As a result, we have our little girl back.  She is more alert, more vocal and stronger over all.  We are still seeing daily seizures, but nothing like we were seeing in May and June.  It's encouraging.

4th of July with Nana!

4th of July with Grandma!

Jenelle started high school at Tustin High School on August 22 and has been doing as well as expected with the changes.  A little cranky, but well overall.  Both Jenelle and Jack are very busy, and it's challenging with both at different high schools.

First day of school 2017  - our Freshman (Jenelle), Sophomore (nephew Trevor) and Junior (JD)

September 2017

Two kids, two separate schools.  Jenelle is a Tustin Tiller, and JD is a Foothill Knight.  On the day of the cross-town rivalry football game, the Tillers won the game.  I told JD that Jenelle had bragging rights for the rest of the year, and he responded with "Good thing she can't talk!"

After the cross-town game. 

We also added a new kitten to our family.  Currently, her name is Bow (as in Rainbow) but the boys (Brett and JD) are trying to come up with a new name.  I affectionately call her "itty bitty" and it seems to stick.  Jenelle enjoys watching our newest pet run around at full speed, and our 11 year old Slider is getting used to her as well.

Picking up itty bitty Bow from the adoption event.

Bow introducing herself to Jenelle who
isn't too pleased.

Jenelle is scheduled to see Dr. Tran again in October, and so far so good with the medications and VNS settings.  In a few weeks, Jenelle will be 15.  That is 3 times her life expectancy.  Can't imagine life without her.  "Got along without you before I met you, couldn't get along without you now!"

So that is the latest.  Thank you for your continued thoughts and prayers.  I will continue to keep you posted.