EEG results and updates

From December 2012

December is always a crazy month filled with rushing to and from so many different places....last minute shopping, Christmas parties, getting an extra strand of lights for the tree... This year though, its been much crazier. In addition to all the festive engagements we've been literally running from doctor to doctor. Hospital to home and then back to the doctor. Oh and therapy and then some more therapy. We were trying to get everything done before the new year began (ie...extra MRI and EEG) in hope that perhaps our medical expenses wouldn't put us out of house and home again for 2013. =) Gotta take advantage of meeting that deductible! Anyway, our EEG came back showing no seizure activity! Hallelujah! Our current neurologist in San Antonio said that the EEG showed "abnormalities consistant with seizures." In other words I believe he meant that it showed abnormal brain activity that would be expected of someone with Subcortical Bandlike Heterotopia. He also said that he was surprised that he didn't see more abnormalities and that he saw some "normal" sleep cycles. This is really important because it means Lily Kate is getting into her Deep REM sleep where her brain can grow and develop.

On Monday, December 17, 2012 Lily Kate got another MRI. This was the MRI we have been praying would come back miraculously clear since we found out about her diagnosis. There was not a complete 100% healing like we'd hoped according to the MRI. It still showed the SBH but even now hope is not lost. You see, my little Lily Kate is doing amazing. Just recently she had her Physical Therapy Evaluation. The evaluation showed that she was only a couple of months behind. Her Occupational Thereapy evaluation showed she was about 3-4 months behind. This is a huge improvement from her initial evaluation which showed that she was 4-6 months behind! Last week she mastered ALL of her transitions...laying down to sitting, sitting to quadruped, and back down to the floor. I put her down for a nap the other day, walked out of the room, heard some crying, looked at the monitor and the girl was SITTING UP! I ran back into the room in SHOCK and found myself in even more shock as I saw her trying to pull up to standing on the crib rail. She's got a fierce determination like her mama. =) So maybe our miracle isn't going to be seen medically. Maybe its just going to be seen by looking at her and wondering how in the world she's doing so well in the midst of her circumstances. You go LK!

See Lily Kate in action below. This is one of the first times she sat up. She's much better at it now.



In other news we FINALLY got an appointment to see the DCX mutation/Subcortical Band Heterotopia expert in Seattle, WA on February 11, 2013. Dr. Bill Dobyns is the guy everyone goes to that has a similar diagnosis to Lily Kate. So far there have only been 110 cases in the world. But they've all gone to him. So we are too in hopes of a more definitive diagnosis and prognosis. Please pray for us as we approach this appointment. We have heard that the inforamtion given is simply just that....information...little to no empathy. So please pray for our minds and hearts to be prepared to hear the precise information. Please also pray for the information to be positive. Maybe something like "Well this is the mildest or one of the mildest cases I've seen of SBH." Please Lord let it be true! Still trusting HIM. Love, Theresa