As most of you know Colbey Raye underwent a very complex invasive brain surgery to remove areas of her brain that were severely affected by a disorder called Cortical Dysplasia. There were many areas of Dysplasia located throughout the left hemisphere and yesterday morning dr. Ojemann conducted a surgery to remove the most severely affected areas. He performed a lobectomy of the left temporal lobe and resected a little over half the left poreital lobe and a small area of the left frontal lobe leaving her with only about 2/3 of her left hemisphere. Doctor Ojemann is very optimistic that this surgery will truly help Colbey Raye achieve seizure freedom with the help of medication. He did not remove all the areas of her brain that are affected by the Dysplasia so he is pretty confident this surgery will not eliminate her seizure alone, she will still need medication to help but the hope is that she will need far less medication! If her seizures return and do not seem to be well controlled after this surgery then Dr. Ojemann will perform a full hemispherectomy removing the rest of Colbey Raye’s left hemisphere. We know this is a possibility but right now we are extremely hopeful this procedure will benefit Colbey Raye immensely! She did loose are fair amount of blood during the surgery and needed a transfusion. Because of the blood loss Dr. Ojemann took a smaller portion of the frontal lobe than he originally was planning but this choice has left her with a better chance of keeping her right side vision more intact.The side affects from the surgery are still unknown. There is a good chance her right side vision will be slightly impaired, but not fully. She is not looking toward her right at all yet, but with the type of procedure she had this is fairly common. Also she is showing a lot of right side facial weakness. This also could be a temporary side affect from the surgery but could also require some therapy to help her remember how to use her right side and help her regain her strength.
Her night went really well! She’s had a fever ranging from 103 to 100.2 and has been fluctuation up and down since about 6:30 yesterday evening. It’s down to 100.3 this morning so we are watching that. She has breast fed twice now and is latching great! The droopiness of her right upper lip has not caused any issues in her eating. We just stopped giving her IV fluids in hopes that she will want to nurse more, and to see if it will help the swelling go down. She is really swollen and puffy this morning but all in all is doing very well! We will be moving out of ICU sometime today. She is in a bit of pain, and doesn’t like to be moved around but is resting well and even giving us a few half smiles here and there. Thank you for the continued prayer and support. We are so blessed by this perfect little angel.
I know I have a lot I want to say, a lot to get out, but I’m having trouble finding the words.
Dr. Ojemann called last night to relay the results of Colbey Raye’s FMRI; it showed significant weakness on her right arm function compared to her left arm. This was not surprising as her right arm is noticeably much weaker compared to her left already. The motor area is close to the area of the brain that is needing to be resected but Doctor Ojemann believes he has a good chance of staying far enough away to not cause any more damage than what has already been done. Colbey Raye will most likely always have a weaker right side, but the intended surgery will not worsen the weakness, but it will hopefully stop the seizures enough so that no further damage is done to the right arm motor function. We have been informed that this surgery has a 30-40% chance to be affective, and the possibility that Colbey could need a second surgery is there, but doctor Ojemann feels this is a good first step, either it will help like we want or it will inform us that we need to take a more drastic measure to better help her. Quoting dr. Ojemann, “if I only was able to perform one single surgery on her then I would be inclined to remove the full left hemisphere, but because we have options I feel this partial hemispherectomy is the better choice for now, and if she needs a second surgery we will cross that bridge when it comes.” The possibility of needing a second surgery is there, but I trust our surgeon, and am hopeful this operation will help Colbey Raye achieve seizure freedom.
Father Jim came this morning and blessed Colbey Raye with the sacrament of the Anointing of the Sick, so many prayers and blessing have been shed upon Colbey Raye and our family during this time it is amazing.
Surgery is scheduled for 8:00am Monday morning and We’ve been told to arrive at Seattle Children’s by 6:45am. It’s going to be an emotion filled day, crazy and exhausting. But we are trying to be prepared. Colbey Raye will be in ICU the first night and then will be kept in the hospital 4-7 days post op. Hoping and praying for a smooth and strong recovery.
I’ve been asked a lot in the last few days how I’m doing, how am I holding up, how is this all affecting me etc… And I reply with “I’m good, I’m okay.” As the days pass by and surgery becomes closer and closer my level of “okay” might slowly be getting lower, but really today I am good, I am okay. Tomorrow I may feel less okay, and I know come Monday morning when they take my sweet, precious Colbey Raye from my arms and carry her towards surgery reality will finally set in and I will begging to fantasize about what is being done behind those doors, but I will still be okay. I may break down, I may cry, I may worry and be scared, but I will still be okay for I know God is sending a fleet of angels to hold my baby while I cannot, and he will be guiding the surgeon and watching over their every move. Faith and prayer are powerful, we are
blessed by both! Thank you for the continued prayers and support, we all truly appreciate them all.
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!
An end in sight?! Is it possible?! We set a date for surgery and I feel like the world has been lifted off my shoulders! I know it’s a crazy way to feel, surgery is huge, scary, emotional, and not a guarantee, but after seeing you baby go through all that Colbey Raye has, surgery feels like a easier task to tackle. At least that’s how I am feeling right now!
December 30th is the surgery date! Only 3 weeks away, and because of all the holiday perpetrations I know they will fly by. Dr. Ojemann said to expect at least a 4 night stay after surgery but that will also depend on Colbey Raye and how well she does with and after the surgery. We still have a few things to finish up for her pre op, those will all be done on December 23rd. The plan is still to do a partial hemispherectomy, removing the whole temporal lobe, most/possibly all the porietal lobe, and some of the frontal lobe, I am not sure about the optical lobe but I think that is being removed as well, I need to ask about that, it wasn’t mentioned at our last appointment. The goal is to try to save the areas that look to be unaffected right know in hopes to save her vision from being affected and also her fine motor skills on the right side.
We are very hopeful this surgery will help with her seizure control, I know there are no guarantees for seizure freedom but it is a possibility and there is a hope that it will help at least better control them if not completely end them. If the seizures return then the surgery could be considered a failure and then a second operation to remove the remainder of the left hemisphere can take place. We really hope this won’t happen but it is something we have to be prepared and ready for. Taking this one step at a time!
Colbey Raye still has not had any seizures in a week now, I’m starting to get a little to comfortable with this and am able to take an eye off Colbey Raye here and there. She has been acting a little suspicions the last 2 days, a lot of staining, confused looks and twitching, so I’m trying to pay closer attention again. It could be nothing but with her history we are on high alert. Colbey’s neurologist wants us to take a video of the staring and twitching so we can send them to her so she can see what she thinks about it.
Praying for a hospital free and seizure free holiday season! With surgery to follow. Thank you all for your prayers, we are so blessed and thankful for all the support right now.
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! 😊
Okay, now that thanksgivings crazy fun is over and we are home settled and relaxing I have some time to comment on our recent appointment with doctor Ojemann. First I have to say he is one amazing and gifted man. He listened to every concern, answered every question and helped me feel confident in my choices and my opinions on the topic of surgery. He asked what I felt should be our next step in Colbey Raye’s care and then expressed his opinion. He agreed with me and said I was very logical in my opinion and was very well prepared for this conversation. I did not feel that prepared, and the first few words he spoke after shaking my hand hit me like a sack of bricks! But I must have held those feelings in well.
So, Wednesday Colbey Raye and I headed up to Seattle to meet with Dr. Ojemann the neurosurgeon. He wanted to asses Colbey Raye and speak to us in person before giving us a few time lines to consider. It was such a quickly scheduled appointment I didn’t have very much time to prepare myself and think about what was going to be said during this meeting. Traffic was bad and we ended up being late, I was feeling rushed and a little flustered but we checked in a were taken back right away! Dr. Ojemann came in soon after and started off by pulling up Colbey Raye’s scans. I was expecting a similar explanation, like the one I had received from Dr. Novotny a few days earlier but was I in for a shock. I knew there were now 2 known areas of Dysplasia on the left side of Colbey Rayes brain, and I knew that our doctors thought it was possible that more could show up between now and age 12months, this I was prepared to hear. I expected him to suggest us wait on surgery until we could see more and be a little more sure about what to do during the surgery, I was not at all prepared for what was said next. Dr. Ojemann Pointed out a few abnormal areas of Colbey’s brain on the MRI and then stated, “there is really hardly anything normal about Colbey’s left hemisphere.” I was shocked, speechless and a little confused. I was told about only 2 small areas of Dysplasia, and now I’m being told her entire left hemisphere is abnormal? Still speechless Dr. Ojemann continued to show me the abnormal findings and how both the MRI and PET showed massive amounts of abnormalities all over. The very front of her left frontal lobe is the only area that so far looks to possibly be fairly normal, but it is still not perfect looking. Now for our options, dr. Ojemann has given us the choice, one we can wait and try to hold her off until she is 12 months and get another MRI to see if the frontal lobe is more affected than we see now and if so she would need a full hemispherectomy of the left side. By doing this we would most likely have to try new medications or put her on a special diet, these options have more negative side affects, in order to keep the seizure count down until then. Or we can go ahead with surgery now (as soon as the FMRI is done) and do a partial hemispherectomy and try to save the area on the frontal lobe that looks to be unaffected my the Dysplasia and wait to see if the seizures return. If they do return we would then have to do a second surgery to remove the rest of the left hemisphere. Dr. Ojemann said that, if doing surgery now, he would try his hardest to stay away from the 2 areas that would cause permanent damage if removed. Cognitively she will be just fine without her left brain, the right side can take over and compensate for most things, but the things Colbey Raye would loose with a full hemispherectomy would be her peripheral vision, and normal use in her right arm/leg. She will be able to see and to read but she would not see you until standing right in front of her. Simple tasks using her right hand such as touching the tips of her fingers with her thumb will be a challenge and she could walk with a stiff leg, and not be able to run very well. But the hope would be that because she is young and would have physical therapy she will be able to use her right arm and leg, just not as easily.
I have wanted surgery for some time now after hearing how much it has helped other children similar to Colbey Raye, but I did not expect her to be needing a hemispherectomy, or even a partial hemispherectomy. I had prepared myself for her to have a resection of a small area or two but a hemispherectomy?! I had some more thinking to do now. I do not want to use other damaging medications while we wait for surgery, so After a few minutes I was able to comprehend all that was being said and concluded that regardless of when, Colbey Raye will be needing surgery fairly soon and very possibly a full hemispherectomy, so why postpone the inevitable? Doctor Ojemann agreed, if we are wanting to try and save her fine motor and vision we might as well do surgery now in hopes it will work and possibly another surgery later if it fails and the seizures continue.
we will most likely not need to do an intracranial EEG because dr Ojemann feels confident that the majority of the left hemisphere is abnormal enough to be causing seizures from all over and pinpointing the area is not useful now that the majority of her left hemisphere will be removed. Josh and I both think surgery now is the best option, we are ready for her to be on the road to seizure freedom and we believe this is the only way. After her psych evaluation and Neuro appointment this week I will be calling to schedule a day for surgery. We will still need to wait for the FMRI results before doing surgery but I want to have it scheduled so there will be less waiting. So much has been happening the last few weeks, it’s a busy time for us and I am trying to rely on Gods love and the support of family through this all, I do feel this is a blessing though! Surgery has been our goal for a while now and I feel even more confident with my decision having the neurosurgeon agree with my choice.