Epileptic conference

Colbey Raye’s case was presented during the epileptic conference Monday by her neurologist Dr. Ko. I was a little anxious and nervous waiting for the call explaining what had been discussed and determined. As far as surgery goes Colbey Raye is most likely a candidate! Doctor Ojemann the neurosurgeon has agreed to do Colbey Raye’s surgery when time comes for her to have surgery. He wants to evaluate her before giving us any type of time line. Colbey has an appointment tomorrow afternoon to meet Dr. Ojemann and I’m looking forward to hearing what he has to say. The team of doctors involved in the conference feel that we need to try and give her brain a few more months to mature and then have another MRI to check for more lesions before doing the surgery. Because of the resent finding of the second lesion they believe it’s very possible she could have more that we just haven’t seen yet, and they do not want to do surgery prematurely. In the even that things continue it is always possible to have surgery at an earlier date. We are working towards getting all of the pre op tests and doctors appointments completed. The next test to run is the FMRI, and that is scheduled for the 23rd of December. I do feel like things are starting to fall into place and are moving forward! But there are still so many ifs and questions to consider and pray about.
We have raised the phenobarbitol a little bit more to help with controlling the seizures but other medications will be added if they worsen or change. So far since being home from the hospital this time around Colbey Raye has done well. She’s having fewer seizures already generally about 4 a day, and has only had one day where she needed a phenobarb bolus. Hopefully with the increased maintenance dose we won’t have to give as many extra doses.
New and old concerns, Colbey Raye still does not use her right arm effectively, she will mirror it with her left but will not use it alone. And if she does get ahold of a toy she cannot get it to her mouth easily, she will hit herself in the face and usually give up before it reaches her mouth. Also she does not baby talk at all yet. She squeaks and squeals but no ma, da, ga etc sounds yet and she should be working on those sounds and putting them together by now. She is now sitting very well and can catch herself when falling to the left but won’t catch herself on the right. Also has started pushing herself up with her arms, and has tried a few times to get her knees under her but she hasn’t quite got it yet! This little miss is still as happy as can be! Nothing can get her down :), I love her joy! And her new favorite think to do is read stories in bed with her big sissy!

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One thought on “Epileptic conference

  1. Grace Lemon

    These two make my heart happy. Sounds like things are on the right path for Colbey Raye’s treatment. Its nice knowing now that you have a team of doctors working on her case. I am so happy she is home and doing better. I am sure you are taking it day by day. I believe that with anything and children taking it all day by day is better because you can react, enjoy, and focus on everything better. We love you guys and wish you the best turkey day ever. Today I am thankful that Colbey Raye is happy, home, and a good candidate for surgery. Happy Thanksgiving, We Love You Guys!!!

    Reply

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