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. |
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! |
 |
| First day of school 2017 - our Freshman (Jenelle), Sophomore (nephew Trevor) and Junior (JD) |
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.
Posts
1 comment:
My son was diagnosed with a rare form absence status epilepsy. His seizures show no symptoms until the seizure has lasted for hours! The only warning we had was he started acting only tired at first then gradually he started acting confused and from there for 24 hours he didn't know what year it was, where he went to school, or even what grade he was in etc. his motors skills were perfect and he talked to everyone normal the entire time, he just couldn't answer certain questions. The hospital kept him overnight and gave him fluids and in 24 hours he slowly started remembering and they said he was good and sent us home. We know now that he was having a constant seizure the ENTIRE TIME of his confusion! Almost 3 months later he begins having the same symptoms when I woke him up for his 2nd day of school. we are sent for an EEG, which revealed at 10 am he was actually having what the neurologist referred to as the worst EEG he had seen) we then were sent to a different children's hospital where they observed him until 8:00pm, all this time my son passes every test, he is talking and his motor skills are completely normal! They finally begin his EEG around 9:00pm. It reveals he is still in seizure! They are blown away. Say they have never seen an absence case like his and they quickly gave him a big dose of adavan which immediately stops the seizure and he is able to regain his memory immediately. Does anyone have a child who has these same symptoms? His neuro doctor ordered a brain glucose test, but when we went for a follow up last week they said the test had been canceled and they had no idea what happened? When I asked if they were going to draw his blood and re do the test, they said that his medicine was controlling the seizures so far so they didn't feel the need to do the test! I need advice and some direction. I searched further; visited epilepsy websites, blogs. I find info about someone having the same symptoms. I was really determined. Fortunately for me, I stumbled on a testimony of someone who had epilepsy for several years and was cured through herbal medication. I read awesome stories of people whose condition were worse . But due to numerous testimonies. I was more than willing to try it. I contacted the doctor Gabriel, and my son used the Nectar herbs. It became a miracle for my son free from rare form absence status epilepsy within 3 months. The Nectar medicine worked without any trace of side effects on my son. totally cure. I decided to share my son story to tell people out there, that there is a hope for those with epilepsy using nectar medicine and anyone who suffers from seizures can be cured. Email dr.gabriel474@gmail.com
Post a Comment