5 days seizure free!

It has been 5 days now and no seizures! We are praying this trend continues but we are still preparing for the seizures to return with force. Colbey Raye has been battling a double ear infection and a sinus cold, she’s starting to feel better now but the antibiotics have caused diarrhea and a diaper rash which she is not happy about! We are so thankful this cold hams not yet placed us in the hospital like they have before, and we are amazed she’s still not seizing, thank you Lord!
Today Josh and I spent the majority of the day at Seattle children’s for clinic appointments, psych evaluations, lab work etc… In preparation for the upcoming surgery. We met with Dr. Ko and Dr. Kuratani to discus our options and hear their opinions on when to have surgery. Their opinions have not swayed ours and we still plan to schedule surgery as soon as available. I’m calling tomorrow to look into it! Dr. Kuratani felt that we should wait until she is at least 12 months to get even more information if we can, but that if she experiences any red flags between now and then we would go ahead and do surgery right away. we respect his opinion but as Colbey Raye’s mother I know her patterns and I know her seizures will return prior to 12month of age and when they do they will hit hard. We don’t want to postpone the inevitable, and we want to choose surgery while it is still a choice before it becomes a rush rush situation. Dr. Ko and Dr. Kuratani both agreed there is no wrong choice, and that we all have our opinions, but that Josh and I will make the final decision and we are opting for surgery. My hope is to schedule another appointment with dr. Ojemann prior to surgery so josh can meet him and so we can get a few more facts straight. We learned a few new things from the Neuro psychologist and we just want to have a better understanding of what the side affects could be.
I will try to update tomorrow on news about when surgery will be! Thank you all for reading! 😊

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One thought on “5 days seizure free!

  1. Grace Lemon

    I am so happy to hear that Little Colbey Raye is getting some rest from her relentless seizures while her little body can fight and recover from her ear infections and cold. The future sounds scary I am sure, but promising which is more exciting than anything. Sound like you guys are making the right choice for surgery and doing an amazing job on educating yourselves with as much information as possible positive or negative. We never know why these things are happening and would love to question God. I admire your strong faith and perseverance through him and prayer to bring you guys to the other end of all of this. We love you all and keep you guys deep in our hearts and will continue to pray for your family and sweet Colbey Raye as you navigate your way through this bumpy turn in life.

    Reply

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