Update From Em's Brain Surgery

Today we had Emmalin's follow up from her brain surgery that she had on May 2nd of this year. Emmalin had an EEG (about a 40 minute one) at 9am, we met with her epilepsy specialist (Dr. Weisenberg) at 11am, and then we met with Emmalin’s neurosurgeon (Dr. Limbrick) at 1pm. It was a busy day, to say the least, but by the time we left the St. Louis Children’s Hospital we felt like we had accomplished a lot (at least I feel that we did).


When we met with Dr. Weisenberg, one of the things that she did was go over the results from the EEG. Compared to Emmalin’s last EEG (which was a 24 hour one done back in April before her brain surgery), there is definitely some improvement but not the significant amount of improvement that they had hoped. Although the brain surgery has seemed to eliminate one of the seizure types that Emmalin had before her brain surgery, Emmalin is still having multiple seizures and multiple seizure types every single day. Because of all of this, the doctors do not really consider the brain surgery to be a complete success. Dr. Weisenberg did say that the only way to REALLY be able to get a true idea of a true comparison of April’s EEG would be to do another 24 hour EEG. So we are waiting to hear back from the scheduler up there to see when we will be going back for that.


By the time we left Dr. Limbrick’s office, we had all decided that we are going to get the 24 hour EEG done and then, because Emmalin’s seizures are still so aggressive, Emmalin will be getting the VNS (Vagus Nerve Stimulator) put in to try to help her with some seizure control (and to try to get her off of some of her seizure medications). Until then, we are choosing to add in ANOTHER medication called Lacosamide (or Vimpat). We hope that this medication will give Emmalin some seizure relief, but only time will tell…

By the time we left our third appointment for the day,
Emmalin was exhausted and ready to go home!

I want to make sure to mention that even though the doctors don’t consider the brain surgery a complete success, Jarrad and I feel that that in some ways it has been a success. Since the brain surgery, Emmalin has started showing us more of her personality. Emmalin has also started showing us that she understands more “commands”. The example of a “command” that I can think of off of the top of my head is when Emmalin is at therapy (at school), they will ask her to hit her light with her hand, and she will consistently. This is something that she did not do before. Emmalin has also started showing us that she can make a choice between 2 things. This is something that is VERY new and Emmalin is BARELY doing it, but she is and that’s all that matters! Since her brain surgery Emmalin has also figured out how to tell other people (besides just me and Jarrad), consistently, what she doesn’t like. This is a really big deal because it shows that, even though it is just with the negative right now, Emmalin is starting to find ways to communicate with the world. All of this may not seem like much, but these things are HUGE to us!! It has been SO exciting each week to watch Emmalin has she finds ways to show us that she understands more and as she learns how to do new things! We are hoping to video some of her “new stuff” soon and post it on here so that you guys can see her in action!
                                                                             
   
                                                                           God is Good!