One day at a time

This time of year is so crazy and busy there is hardly time to think! With all the holiday prep there is little time to do all the normal everyday things such as cooking, cleaning, laundry etc… And add the craziness of prepping for a major surgery with the constant trips to Seattle and phone conversations with doctors, it’s exhausting! Yet I’m so thankful all of this is happening during the Christmas season. We’ve been blessed by so many family members, helping around the house and sweet friends sending dinners and gifts. A huge thank you to all involved in our lives right now and the abundance of blessings you’re showering upon our little family. With Christmas in just 6 day and surgery only 5 days after that the help has been exponential! Tis the season 🌟.
Colbey Raye’s seizures are back. They started up about a week ago, and are slowly progressing. They have been really mild in comparison to the last seizures, but are starting to be more noticeable. As of now we aren’t to alarmed and we are just keeping a closer eye on her but my biggest concern is her constant falling while sitting. She’s been sitting up really well all by herself for about a month now, but in the last few days she has been falling over constantly. She is not bracing herself like she had been and she’s falling quickly and really hard, smacking her face/head on the ground. She had been catching herself and had been able to stop herself from falling but doesn’t seem to be able to recently. It almost is as if she is blacking out and falling over. I have a call into Dr. Ko to hear her opinion. In the mean time she’s been surrounded by pillows again while she’s sitting.
Last night Colbey Raye and I saw dr. Ojemann the neurosurgeon again to go over more details about Colbey Raye’s surgery and to discus what’s “save able” and what must be removed. The exact mapping of the resection is not clear yet, we will know more about what must come out after the FMRI on Monday. We were hoping to be able to spare her motor area involving her right side extremities but due to the lack of use she already gets from her right arm Dr. Ojemann is not to optimistic that we will be able to leave that motor area intact. Waiting until after the FMRI to hopefully know more. As for her vision, Dr. Ojemann is going to stay away as best he can but still there will be some vision impairment to the right side of both eyes. She will have mild right side Homonymous hemianopsia, but because of her age she should be able to compensate very well for it. We discussed again her cognitive delays, possible speech problems etc… and my understanding is this; seizures and surgery both can cause delays, but the delays she will have due to surgery are no greater than those she will have due to seizures. The seizures will continue to cause more and more delays as time goes on, but with surgery we could set her back a little but she will soon heal and then be able to start improving greatly in the areas she is behind because her brain will no longer be to tired due to all the seizure activity. Yes she will have delays, but once we stop the seizures she will have time to heal and work towards improving in those areas.
Dr. Ojemann does feel that surgery is the only way to control the seizures enough to help Colbey Raye progress, but he does not think this surgery will be effective alone. He stated that this surgery is going to help exponentially in controlling the seizures but she will continue to need medication to help. He said due to the severity of the Dysplasia and the wide spread of affected areas most likely the only way to truly achieve seizure freedom without the help of medication is to do the full hemispherectomy. But with the partial hemispherectomy we may be able to save a few things we wouldn’t be able to with the full, and medication would be much less than it is now.
If her motor area is not crossing through the severely affected areas then the surgery most likely will involve the removal of three separate “chunks” involving the frontal, poreital, and temporal lobes. But if the motor area is to involved in the areas of severe Dysplasia then one large chunk will be removed, still involving those 3 lobes, from the middle area of the left Hemisphere.
Every time I see one of Colbey Rayes doctors I feel like I learn something different or new, this is a long proses and there is so much information to retain at one time. Trying my best to keep these ducks in a row and to ask all the right questions but it’s hard for one tired brain to hold all of this massive amount of information recall all that has been discussed and said. I know surgery is the best option for Colbey Raye, and I’m trying to take it all one day at a time. I hope everyone has a very Merry Christmas!

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