Hey Strangers-
I'm sorry I haven't updated. I have been busy starting the Cortical Dysplasia Group and website, busy with the kids appointments and I have had a lot of internet problems.
I will start by telling you about the new pictures I posted. I left Dustin in charge for 15 minutes one day so I could get in the shower....and what you see in the first couple of pictures is what I found when I came out. Too Funny! For Halloween she went as one of her favorite tv personalities, DeeDee Doodle from "The Doodlebops". She had a blast and loved getting candy put in her bag. The others are ones that I have taken over the last 2 months.
Cora is doing great. She runs and plays like a typical 2 year old and has almost regained full use of her left hand. She has a little bit of a limp when she runs, has some trouble with her balance, not quite up to par on speech and riding a tricycle but if you saw her and didn't know anything happened you probably wouldn't be able to tell. She struggles with her left hand at times, her fingers still curl just a little and we are still working on picking up small objects and releasing them, sometimes she can't feel the palm side and forgets she has something in that hand because she can't feel it. All of her doctors are amazed with her progress, she exceeded their expectations. One of our favorite docs even said she was "a walking miracle"
Now, the downside, Cora has been having seizures since she has been home. They are different than before. First of all they are not in clusters. They are Absence Seizures, which means she has a blank stare with loss of awareness anywhere from 3-12 seconds. After learning she was having these regularly, the neurologist increased her medicine and they seemed to decrease. The docs were not too overly concerned because the seizures were different, which means they are coming from a different part of the brain. But, 6 weeks ago she had a drop seizure, just like before, then again 2 weeks ago. So, they started ordering tests and began following her closeley. On Nov. 13th she had to be sedated for 2 different MRI's. This past Monday she had a 2 hour EEG and a consultation with one of her docs.
So, here is what we know right now. The MRI's didn't show any "new" growth (which is good). They left part of it because taking it out would have put her at greater risk for permanent neurological deficits, so it is probably the remaining abnormal tissue that is causing the problem. Because she has had the drop seizures, no one is 100% comfortable with the diagnosis we were given. (cortical dysplasia) They are going to send her tissue to another lab to get a 2nd opinion on the pathology. Worse case would be that it isn't cortical dysplasia but a low grade glioma (benign brain tumor). This will take some time, probably 6 weeks. In January, if she is still having seizures they are going to admit her for 2 days to do the EEG monitoring and in the meantime they have increased her meds again. They do expect her to have some sort of developmental delays or deficits because of the amount of tissue removed, but there is no way to know what they are. I guess we will figure that out as we go.
I will update throughout this month with pics and will let you know something as soon as I know it. And I will be sure to update during her stay in January.
Also, the Cortical Dysplasia website is almost ready. I will be posting that info here and sending out letters and emails. I have a great fundraiser to kick it off and think it will be a lot of fun.
Thank you all so much, I would have never made it without everyones support and prayers.
God Bless and Merry Christmas!
