In spite of all the heart aches, heart breaks, stress, confusion and worry, this year has brought our family so many true blessings. We were blessed with the birth of our amazingly sweet, happy, snuggle filled Colbey Raye! She has touched so many peoples lives already and I know she will continue to bless many more! No matter the pain she is suffering, the exhaustion she faces from seizing so often, the side affects from medications or the pricks and pokes she receives she can hold a smile through it all! What a true fighter she is. Nothing can cast a shadow over her true happiness, I wish we could all have such a strong happy personality through tough times as she does.
I am so thankful for our strong willed, independent, smart Austyn Jayne! She can be such a hoot, and is polite and caring. She’s so kind to her baby sister, it is the sweetest thing. I love her so so much, even when she’s acting like a 2 year old 😉!
I am so thankful for all of the support and help we have received from our family and friends! From prayer to driving to Seattle to keep me company to watching Austyn Jayne, we truly have been blessed by such a wonderful support system.
I am thankful for all or the doctors involved in our life. The time and talent they each provide have given us hope for a bright future for Colbey Raye. I respect each and every one of them, and know they have my sweet girls best interest at heart. We are so lucky to live close to such an amazing Children’s hospital. Our blessings this year are abundant and no matter the hardships we are facing right now I can truly say this is a happy thanksgiving full of love, joy and an abundance of blessings.
Happy thanks giving to all!
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!
Colbey Raye had a very long drowsy day yesterday, she did so good going all night and most of the day without eating (I was able to give her a short feeding at 7am!). She got a little grumpy but was consolable with her binkie and napped a lot. We went up to imaging at 12:30pm and they PET was started at 1:15 and the MRI followed. After her tests were done Colbey Raye was super sleepy from the anesthesia and didn’t want to wake up! She was so sweet and kept humphing at us when we tried to wake her, then she finally awoke at 4:20pm with a crooked smile and was back to her happy self after a good feeding and some snuggles.
After we were back in our room Dr. Novotny (the attending neurologist) came to explain the MRI and PET results and he showed me the images. The findings correlated with the previous MRI and multiple EEGs, but there was a little more than we expected. First we went over the MRI, this showed that there is a Dysplasia on the left parietal lobe as was shown on her very first MRI at 6weeks old. They put little green arrows pointing at the affected area (very helpful for me as I’m not the best at reading MRIs 😉!). As we scrolled through and Dr. Novotny explained I noticed a new, second arrow pointing to a different area of the brain. This was something I had feared, this MRI indicates that Colbey Raye has a second area of Dysplasia on the left frontal lobe. The good is that both areas are on the left side of the brain! But now there are more questions about what surgery would entail if Colbey Raye does eventually have surgery.The PET scan revealed that both those affected areas of Colbey Raye’s brain are not using the needed sugars correctly. Now they will take the images of both scans and place them on top of one another or side by side to get better understanding of what they each say in relation with one another. From the EEG results we can safely say that the seizures are all coming from the left brain, and are focal for now, but wether they are coming from both or one of the dysplasia can’t be determined by this type of EEG. Something else new to my knowledge, during Colbey’s EEGs most of her seizures are shorter and focal to the left brain, but what I didn’t know is that during her longer seizures the activity some times will cross over to the right side. I was assured it does not happen often as of now, but as her seizures continue in frequency or length that this could start to happen more often and in result cold eventually cause damage to the right side. The possibility scares me greatly as I know the seizures affect her left brain each time the occur, I do not like knowing her heathy side could potentially be harmed as well!
What’s the Next step?
On Monday all of the neurologists whom are involved in Colbey Raye’s case, the epileptologist and the Neurosurgeon are getting together for a big meeting on what to do next for Colbey. Dr. Novotny said that Colbey Raye will be getting a Functional MRI within the next few weeks, and that will be the next step for now, but as for the next big step that is still to be determined during the meeting Monday. I was told that Colbey Raye is hard to control, because she’s young her brain quickly becomes comfortable with these anti epileptic medications causing them to be less and less effective, so changing them up is an option as time goes on. The keto genic diet is an option but not one we have really gone into detailed conversation about, it has just been mentioned. I know there has been a lot of dancing around as no one wants to give me incorrect information as to what the upcoming months will bring but Dr. Novotny said that next thing is to get the FMRI, and then the next big step after that most likely would be an intracranial EEG, and that it is more of a question about when is the right time/age for Colbey to have these surgical procedures done. Dr Novotny is the first to talk toe about this so I am not setting it in stone by any means! But an intracranial EEG is a surgical procedure where they go in an place EEG leads directly on the brain. This procedure will be able to better pinpoint the exact areas where the seizures are originating from helping the neurosurgeon map out the area needed for resection. If the EEG shows the information needed to do surgery then the resection would take place right then while they are already inside Colbey Raye’s brain, limiting it to only one surgical procedure. It’s been an over load of information this week but all helpful and needed information, I’m going to take it one day at a time, one seizure at a time and one meeting at a time. meanwhile, until they feel Colbey Raye is at the right age, or ready for a surgery we will be working with other options such as new medications to help prevent/control these seizures. I feel like this is just a continuos circle of event and we are going round and round, but I know we will eventually stop spinning and Colbey Raye will either be receiving surgery or there will be a medication to help her stay controlled until she’s ready for surgery. Even with all that is going on we are so blessed that she is developing well and is meeting milestones. I’m praying for patients on my end and knowledge and understanding for the doctors. This journey is still in the beginning, great things are yet to come!
We are discharged and soon will be on the road heading home! Can’t wait to be home with my family, missing my Jaynie girl like crazy!!
I just left Colbey Raye in imaging for her PET and MRI. I stayed until she was asleep from the anesthesia, it only took a few seconds for her face to go from smiling to looking lifeless. It was a lot harder for me to see her like that than I thought it would be. She’s always so full of life, with her pink chubby cheeks and smiling even when she’s asleep, I’ve never seen her so out of it, it was a little heart breaking. But I know it’s for good reason! We are finally getting the tests we have wanted for some time, and I am relieved it’s happening now. I’m going to take advantage of the groggy girl when she is up and just rock that chunky bundle of joy! She’s going to get an abundance of kisses, snuggles and loves from this momma as soon as she opens those eyes. Right now I just get to wait, have some coffee (finally), stretch my legs and think.
Another good note, we may be able to come home tomorrow if Colbey Raye’s night and morning go well. Praying this is the case so we can have a wonderful thanksgiving at home with family! We truly do have so much to be thankful for this year, and a holiday at home would be appreciated!
Let’s recap a little. Yesterday morning Colbey Raye got a VEEG, it went on for about 3 hours, in the first hour we caught 7 seizures where she was desating into the 50s, and then Colbey was given a phenobarbitol bolus and that seemed to stop the cluster of seizures and help keep the seizures at bay for the rest of the EEG. She had a few more seizure later last night. She’s been extra extra sleepy since the phenobarb bolus and was just starting to return to a more normal base line this after noon. She had only had 3 seizures today until now. Colbey Raye has had 5 seizures in the last 38 minutes, she is desating to low 80s and is only holding her breath for little short amounts of time (this is good new compared to yesterday’s cluster). It’s been about 31 hours since her last pheno bolus so it’s most likely just wearing off now and that’s why the seizures have begun to get harder and clustered again.
As for the rest of the happenings here at the hospital, Colbey Raye is receiving a PET scan and an MRI in the morning! This is what we have been waiting so patiently for! These tests are the first step to Colbey Raye’s surgery work up. There have also been orders put in for a functioning MRI to take place but that has yet to be scheduled. On Monday our neurologist, the epileptologist and Neurosurgeons will be holding a big meeting about what they feel is the best option surgically, or not, for Colbey Raye. There have been many discussions over the last 2 days on which rout would best fit Colbey’s needs, and talk about medication changes and diets have been in the mix. As for now the Keppra is being dropped and the Trileptol and Zonisamide are being bumped up. Colbey Raye’s maintenance dose of phenobarbitol will be raised soon too but hasn’t been yet. She will be put on a fairly high dose of phenobarbitol so our neurologist wants to do it soon while in the hospital so they can monitor her reaction. She will most likely be more sleepy during the days because of it but as long as it’s helping control the seizures it’s worth trying. If this plan of action is not effective there are other medications being considered, each having their own side affects that can cause permanent or serious damage so we are hoping they will not need to be used. Colbey Raye’s liver function is not quite what it should be, It’s not bad or dangerous yet but the doctors will be keeping a close eye on it. It could be a long night tonight, Colbey cannot nurse at all after 11:30pm and won’t be able to nurse again until after her tests are done and she’s awake. I am thankful she takes a binki during times like this! She will be getting IV fluids so she stays hydrated.
While I’m here Josh is continuing to work and Austyn Jayne is house hoping! She had a clingy day yesterday and a little mopy but today she gets to spend the night with her favorite little cousin Cooper and is so so excited! She didn’t even want to talk to me on the phone she was so excited to head to their house. A huge thank you to the Nelson’s for watching her tonight and tomorrow, I think it will really help her forget about mommy being gone :). I’ve got 2 super sweet tough girls on my hands! hopefully they won’t turn this toughness around on me in their teenage years 😜. They have both been through so much, and I know how hard it is being the one at home while the sisters gone in the hospital. I’m glad she is young during all of this but it is still hard on her. Just want to hold that great big girl and kiss her! Even though shed probably push me away and say “no nuggles mom!” Haha. Gosh I love her. This journey has been the toughest on Josh. He can’t stand seeing his little monkey in the hospital and seizing all the time. Plus we have had the worst luck with cars the last few weeks it’s stressed him out a lot. It’s hard having to be gone in the hospital, but I’m okay with it, it’s manageable for me and I can do it. Josh has a much harder time accepting these things, and I don’t blame him, it is hard. But something we need to do. We all need the prayers, but right now Josh and miss Coco-be especially.
After a long day Colbey Raye is back at Seattle children’s hospital tonight. We are settled into our room and after 4 back to back seizures she is finally sleeping soundly. It is nice to have her hooked up to the pulse-ox so I can see how far she is desating and am able to give her oxygen right away! I had really hoped we would be able to stay home until December but with the way things have been going lately I half expected to be up here today. They are checking her levels and seeing what we can do in regards to medication changes. Colbey Raye’s epileptologist is more willing to change the medications if she is hospitalized so she can be monitored during the switch. I will know more about that tomorrow. In the morning Colbey is getting another VEEG and I am really hoping we can schedule the PET and MRI to take place while we are in the hospital so we won’t have to wait until December! That is Dr. Ko’s goal as well, so it is very likely to happen. Fingers crossed. We are in a nice big private room too! It’s a room with a camera so that our nurse can watch Colbey Raye while I sleep and hopefully be able to catch the seizures before Colbey desats. Between the pulse-ox and camera I am hoping to have a restful night! More updates to come, thank you again for all the thoughts and prayers.
Colbey Raye’s story is now posted on the blog. It’s is under the menu link at the top of the page. There was a lot to say and between rereading, reliving, and getting all of the facts straight it was quite a task for me. Every time I went to finish it I had to read it from the top, and would remember some important detail, by the end I was just ready for it to be done and posted. The last month has been the craziest, I know the first few weeks were terrifying and hard but for some reason this last month and a half has been harder on me than the beginning. The begging was hardest on Josh. When Colbey Raye first started seizing things were bad and scary, once she was diagnosed a light shined over the situation and I was so hopeful as she started being seizure free. Knowing the cause helped me so much, but as things started getting worse, and the seizures got harder and harder to control it was hard to see the positive. Every time things got worse I’d bring up surgery, there was always something else the doctors wanted to try first, nothing has helped and still Colbey Raye’s seizures continue to worsen. Don’t get me wrong, surgery scares Josh and I, but we know that the outcome could help her so much more than anything else. I do not see any other option at this point and finally Colbey Raye’s doctors agree. we talked last Tuesday and for the first time Dr. Ko mentioned brain surgery as their recommended plan of action.
On Thursday Colbey Raye had a really hard day, we had to give her a bolus of Phenobarbital and it did not help her all to much. While on the phone again with doctor Ko she apologized for the slow going proses but reassured me that as soon as the tests were completed and the results are in Colbey Raye will be getting surgery very quickly, most likely before Christmas. We are also on a cancelation list for the MRI and PET scan but because they want to run these back to back we most likely won’t be able to get in early. I know these test are only 3 weeks alway but when your baby is seizing and turning grey/blue over 15 times a day (not counting seizures during the night time hours) 3 weeks feels like an eternity.
Friday was better than Thursday but Saturday Colbey Raye needed another phenobarb bolus. Sunday and Monday were hard too. Each day is similar, Colbey Raye has at least 1 seizure (usually 2 or 3) every time she falls asleep, and randomly during play time and feelings she will have a seizure and then be very disoriented and usually goes to sleep for another nap. Her seizures are usually a minute to a minute and a half but sometime longer, and she cannot focus for a little while after they are over. The more frequently they come the more worried I am about the lack of oxygen going to her brain. This morning she’s already had 5 seizures and the last was a 4 minute and 48second one. I gave her the rescue medication and she is sleeping very soundly now
I am a little bit frustrated in this situation. Because Colbey Raye is already on the max dose of all four medications for her size and dr. Kuratani does not want to add any more. In order to change the medications she would need to slowly come off of one while they added another causing her to be on 5 at one time. I know it’s an option but so far not one the doctors are considering. I have a call into Colbey Raye’s neurologist to ask about other options for the next 3 weeks. Maybe some oxygen to supplement her with during seizures and a pulse-ox machine to use so I can keep an eye on her stats, especially during the night when I’m not as aware of her seizures. Hopefully I will hear from Dr. Ko soon and we will have a better seizure plan for the next 3 weeks.