We’ve all heard that phrase or saying before. “Life is a rollercoaster.” Although is it a bit cliché, it most certainly describes the last three years for Jessie. The past 9 months have been full of twists and turns: hydrocephalus, shunt surgery, surprise brain shift over mid-line and subsequent shunt revision, and an attempt before Christmas to stop the seizures originating from the right side of her “brain” by disconnecting some remaining frontal and parietal tissue. Did you notice the word “attempt”? Unfortunately, despite best efforts by our wonderful doctors at Cook Childrens Hospital and consultation from Drs. Carson and Mathern, the seizures are still very present. In January, we were hoping that they were a result of a healing brain – after all, Jessie has been put through the mill since last August. Perhaps she just needs some time to heal.
The reality is that we are dealing with tissue affected by Rasmussen’s Encephalitus. A relentless disease that just doesn’t stop. To learn more about RE, go to http://rechildrens.com. Learn more about the great work our good friends Seth and Deb Wohlberg are doing. Their daughter Grace is affected by RE as well.
Having said that, Jessie’s seizures have been slowly increasing in number and severity. . . . wearing her out and causing her to hit the hay by 6:00 pm a lot of nights the past 3 weeks. We are looking at the possibility of precocious puberty and the effect of hormones on seizures. We were also scheduled to go into the EMU the weekend of March 5 but seizures increased to over 30 by the Wednesday before so we went in early for VEEG and MRI studies. In the end, we left the EMU with a plan –Vimpat and Klonopin have been added to our arsenal of AEDs. Hormones are most likely not the trigger for the seizures but we can slow down the onset of puberty if insurance will allow. Jessie’s case is being reviewed by “The Big Brains” at Cooks (Drs. Malik, Hernandez, Perry, and Donahue) as well as Drs. Carson (Hopkins) and Mathern (UCLA). Looks like surgery may be in her future again – hopefully we can hold off until later in the summer to give her more time between surgeries. This is all still speculation but we feel this is most likely the outcome.
Through it all though, our Warrior Girl, (thanks Pete – she is totally a Warrior), has lifted both arms in the air (she does this well with her left arm!) and is riding this coaster with abandon. Below is a little time line of the past few weeks. Happy 9th Birthday Jessie!
2/26/11 Special Girls Day Out! Celebrating Jessie’s Birthday a Little Early
We knew that Jessie wouldn’t get to party the weekend before her birthday, so we set up a fun day with one of her BFFs a little early. Jessie and her friend Emma had a great time at the spa getting a mani and pedi and lunch. Fun time in the hot tub, red velvet cake, and presents after – what a day!
A fun day but seizures wore her out – she went to bed at 4:00 pm!
2/27/11 Shoot’n Shotguns!
Santa brought each of the kids a .410 shotgun for Christmas but with all the craziness that ensues at our house, we hadn’t had a chance to shoot. The opportunity presented itself, so we jumped at the chance! We all had a great time, including Jessie. A nap to and from helped her get through the day.
3/8/11 Happy Birthday Jessie!
Dinner at Logan’s Road House and lot’s of Justin Bieber goodies.
Life Is Good
Little Ray and Big Ray
