Colbey Raye was finally able to be unhooked from the prolonged EEG Friday morning! It went on for 43 hours and in that time frame 9 seizures were detected, out of these 9, 6 were clinical seizures and 3 were subclinical (seizures that are happening in the brain and appear on the EEG but show no physical signs or symptoms otherwise) and only 2 of them were seen by Josh and I. A lot of the seizures we missed happened during the night while we were all sleeping, and a few were much shorter (10-20 seconds) and only affecting the right arm so they can be a little bit harder to catch. This is the first time that subclinical seizures have been detected on any of Colbey Raye’s EEGs, and it is a little bit unsettling knowing she is having these non visible seizures and unless she is on an EEG there will be no way at all for us to know if and when she is experiencing them. The neurology team and epilepsy team both stated that even though these subclinical seizures aren’t wanted, their main concern are the seizures that are visibly affecting her little body and causing her oxygen levels to drop. They also said that if Colbey Raye is having clinical seizures she is most likely having subclinical as well. But when she is clinically seizure free then she is most likely subclinically seizure free also. New hard information but none the less helpful in our attempts to move forward with another plan. Most of these seizures are coming from the frontal lobe and some are coming from the outlining areas where her brain resection was, they are all focal and coming from the left side! All good news in the sense that they are similar to the ones caught prior to surgery and that they remain on only the left side of the brain. The next steps for now are; having her case presented again at the epilepsy conference on Monday, with the information from the EEG Dr. Owens feels that Colbey Raye’s chances of receiving a second surgery are good, And then we will have to call and schedule another appointment to see Dr. Ojemann and go over what his thoughts are for another surgery. Not as many hoops to jump through or buttons to push this time around and hopefully the doctors will all agree Monday that surgery is her best option for seizure freedom. The emotions are high in the Smith house hold these days, especially for me, but I know God is in control and his plan is far greater than the ones I had. Trust, faith and a lot of love can help these next few months go by.
Before I go into the events of today and yesterday’s EEG information I just want to mention and share that Austyn Jayne came to visit today!My dad brought her and Kyrie up to see us and I was so happy to see that adorable little face! I think she was a little nervous at first and when I first picked her up she’s it teary eyes and almost began to cry, but quickly composed herself and gave me a big hug and asked me to do a puzzle with her. How hard all of this must be for her, she is just as strong as her baby sister! I’m blessed with two amazing daughters. We played outside and went to the play room, painted, played doctor, play doe and had a fun time while daddy and papa stayed wit Colbey Raye. Austyn Jayne also got to spend some time on the floor with Colbey Raye! It was so nice to see her, and hard to let her leave, but she was definitely tired and ready to fall asleep on the ride home :). Thanks dad for bringing her! It meant so much to me!
Yesterday afternoon around 2:30pm Colbey Raye was moved to a special unit where they hook little ones up to a prolonged EEG and monitor them from a camera inside the room. Because these EEGs go on for a prolonged period of time the leads are placed on the head with a stocking cap that covers them to keep those little grabby fingers from pulling them off constantly! And the leads are plugged into a little pack, that can be carried around to better help the kids move more freely, instead of straight into the computer. It still is a little tricky with Colbey Raye because she has a unique way of crawling and is constantly tugging and dragging the pack around causing her leads to pop off occasionally. The nurse and I rigged the pack a little so it’s now strapped to Colbey Raye more like a backpack! She’s managing to crawl better even though it’s a little heavy for her.
From 5am until 11am yesterday Colbey had 5 seizures, I was uncomfortable with with frequency but at the same time was hopeful they would continue so that once hooked up to the EEG she would have a few and the EEG would be cut short! While Colbey Raye was being set up on the EEG yesterday she had one seizure, only being halfway plugged in the reading of that first seizure probably was not very good, about 2 hours after she was all set up and ready she had another seizure and then about 5 hours after that had another. Even though i do not really want her having seizures I was happy that 2 had been caught on the EEG! We had hoped that by catching these two her doctors would be satisfied and in the morning she could have the leads taken of, no such luck. This morning when Dr. Owens, the epilepsy specialist, made his visit he said that they wanted to be able to capture a few more so she was going to continue on for another day. As the day went on and no seizures came I was nervous they wouldn’t be unhooking her come tomorrow morning! The poor girl is getting a little cooped up and uncomfortable having so many wires to maneuver around. When Dr. Owens came back this afternoon I was not expecting to hear the information he had to share. I was glad josh was here and was able to finally meet him. Dr. Owens began telling us that they had caught quite a few seizures and that in the morning Colbey Raye could be taken of the EEG, a relief yes! But also I was a little confused, so I inquired about the seizures and how many was “quite a few,” when he replied “seven” I was shocked. How could she have possible had Seven?! I’d only seen two and I watch her like a hawk, I don’t leave her room for a minute unless a nurse or josh is with her. He explained that some happened during the night, and that some were so short that it would barely cause the stiffening of her right arm and a few blinks, and some a stair or blank look on her face, so they could be easily missed. He has only reviewed the portion from when they first started recording at 2:30pm yesterday until 9am this morning when the computers were reset for the day. I am very anxious to see what today and tonights EEG shows, as I have not witnessed any seizures so far today at all. This has always been my biggest fear, I make sure to watch so closely, and to keep her close by but still I am missing these small seizures. Now with this information I know that Colbey Raye does have seizures during the night, this has always been a worry and a question of mine as well, but this is the first time she has ever been hooked up to an EEG over night, so I never had proof until now. I cannot help but wonder how often is she really having seizures? These little staring episodes at home, are those really seizures? It is a hard thing for me to grasp to grasp, and I am having a hard time accepting the fact that I don’t catch them all and that quite frankly it is probably impossible for me to truly catch every little seizure my sweet little girl experiences. I just want to hold her and kiss her and love her through every seizure and let her know mommy is so close and always there to help her. I can’t help but feel for her in these moments where she is experiencing such a hard and scary thing, what does she feel? How much does she remember or know or understand? How confusing it must be for her to wake up to a seizure, not knowing what happened and not having anyone next to her to love on in that moment of confusion? I love you sweet angel of mine and mommy is always here for you! You are my perfect girl, and an amazing example of courage and strength. I love you with all my heart>
A little recap:
First I have to mention that while in the ER Sunday afternoon the rescue medication Ativan was brought up, I informed the doctors that Colbey Raye has a very hard time with that specific rescue med and I didn’t want her on it. I thought my request was listened to, but once admitted to our room the nurses came saying that a small dose of Ativan was to be given now, and then again around noon the next day. They tried to reassure me that the dose was so much smaller than a typical rescue dose it shouldn’t affect Colbey Raye the same. She received the dose around 8pm went to sleep around 10:30 and was up screaming by midnight, starting the night of with a bang! She cried and cried for over 2 hours, finally I was able to rock her back to sleep. 3am rolls around and up again screaming again for over 2 hours, she was confused uncomfortable and not handling this oh so small dose well at all. Back asleep for about 2.5 hours and up at 7:30am to start her day, her cranky, grumpy, tired day :(. Yesterday was a tough day all around. She started the morning off with 2 seizures, desatting to 62 and remaining there for a good 20seconds before slowly making her way back up to the upper 90’s. She went right to sleep after and slept good for a little while. I made it clear this time to her doctors that I did not want her on Ativan and there must be some other option. After seeing her grumpy, unconsolable attitude they listened and changed the order and now she will get Dilantin in the event that she continues to have seizures! Still having the Ativan her system for the remainder of the day Colbey Raye was upset, confused, grumpy and the only way to calm her down was tight snuggles and a lot of nursing. She had 4 more seizures yesterday afternoon/evening, desating during most but none as bad as the first that morning. She received 2 doses of Dilantin and that helped her get through the night peacefully without any more seizures.
Today has been a much better day! Colbey Raye received a 1 hour EEG and has slept most of the day, and is in a much better mood! She’s giving smiles and flirts all around even though she is a bit sleepy. She just had her first seizure of the day desating 79, it was a hard seizure and she went right to sleep after.
As for a plan? It is still in the works, but Colbey Raye’s case was presented at the epileptic surgery conference yesterday, I am still waiting to hear from the epilepsy specialist on what all was discussed and what plan of action they have decided to take but I’ve heard a little. From my brief discussion with one of the neurologists this morning it is my understanding that we will be adding a 4th anti epileptic medication, Lacosamide, to Colbey Raye’s maintenance with the hopes that once this episode fades we will remove one of the other 3 she is currently on. This is not a very comfortable decision for me, I’m not a big fan of loading her up on more medication, and I know some of the doctors feel like staying away from surgery but I feel surgery is the best option to get Colbey Raye’s seizure better controlled. I want Colbey to be seizure free, but I don’t want her on so much medication that she is missing out on life experiences, she is quite sleepy and tired as it is. Maybe I am crazy for viewing it this way? But when Weighing the options here, surgery will leave her will less mobility but once she is seizure free she will begin to learn and compensate for the areas she’s not as strong in. If she has surgery earlier then her recovery is quicker and her body will learn better coping skills. Without another surgery Colbey Raye will continue to be on an absurd amount of medications, she most likely will continue to have seizure outbreaks causing set backs in her development time after time. The seizures will continue to affect her development and could potentially set her back more in the event they happen more often. Surgery is always a scary thought, a tough choice to make for your sweet tiny baby, but to raise her quality of life for years to come? I do believe it would, and I do believe it’s the route I would choose to take.
We are back at Seattle Children’s today with Colbey Raye.
Friday we gave her a bolus of phenobarbital and headed to the ocean for our mini family vacation. Only a half hour after we arrived to our destination she had another seizure and we were hoping it would be the only one during our trip but no such luck. She had a few more Friday night and they came and went all day Saturday. She slept most of the weekend and we front packed her around while sister enjoyed put put golf (sort of enjoyed), bumper cars, go carts, kite flying, walking on the jetty, building sand castles, running from waves, swimming and so so much more! Colbey Raye did have a happy evening yesterday and enjoyed eating a little sand and walking on the beach with daddy before she had another seizure, this time holding her breath and turning a little purple around the lips that made her a bit sleepy again. This morning after 2 more seizures that cause purple lips we headed home and called Neurology. They felt we should bring her in for observation, so we dropped Austyn Jayne off at home with auntie, unloaded a few things and hopped back in the car to head to Seattle Children’s. First thing, check labs for infection and everything came back clean, Colbey Raye is health so why the seizures? We aren’t sure yet, and our next plan of action is still unknown so she is being admitted for over night observation and her neurologists will be on duty tomorrow so hopefully we will be able to come up with a plan to slow down or eliminate these seizures, until next time. She is also desatting during these seizures, not as low as she has before, but low enough to cause alarm and a back up team to be called in (it was quickly canceled as her oxygen level bounced back fairly quick). She is extra sleepy, a little wobbly and off balance, but still full of smiles, snuggles and kisses! Our little trooper is so strong, she brings a smile to every nurse and doctor who visits! Love her to pieces, thank you for the thoughts and prayers, she is one special little angel.
Today is day four now that Colbey Raye has been having seizures again. Prior to this she had gone a little over 2 weeks. On Monday they started out week, shorter and did not seem to affect her as much as her “typical” seizers do. Tuesday morning 2 seizures came to start the day making physical Therapy a bit of a challenge, Colbey Raye was very tired after about 20 minutes and resorted to a serious melt down :(. A few more came through the rest of the day, and a few on Wednesday and already 2 so far this morning. They are starting to affect her more and more, and are slowly getting harder, stronger, and a few have lasted a bit longer than her usual. She’s much more tired and is a little off balance today. She is still smiles and still playing, but easily tired, frustrated and has been requiring a lot of snuggles and mommy time. She is restless and even though she is sleeping more often she is not sleeping well. First step is getting some blood work done to check her medication levels, if she’s outgrowing her doses then it’s an “easy” fix and the poor girl will get some medication dose adjustments and hopefully return to her days without seizures. If the medication doses aren’t the issue then the circle of events could begin and a 4 medication will be in the discussion. Finger crossed it’s more simple than that but it’s usually not. Colbey Raye does have a thing with her timing! We are supposed to be leaving for a fun little family trip tomorrow, praying we get to keep our plans and that Colbey Raye will be up for the adventure! I see a lot of baby wearing while we walk around this weekend :). Thank you for all the continued prayers, our sweet girl is blessed by so many!
One seizure can change the course of the whole day. For Colbey Raye they usually don’t come singly. Once the first one of the day comes I feel myself constantly watching and waiting for the next one to hit, the thought of missing one haunts me! How many days will it be before my body relaxes and I’m not constantly up in arms looking in her direction every 20 seconds? Not only do they usually come a few at a time they only last 20-40 seconds each. How can I possibly catch every 30second seizure? I know I can’t, but I try my hardest. The shorter and more infrequent they are the less her doctors worry, but the look of fear, uncertainty and confusion plastered all over her face is more than a mother needs to know this is nothing to down play. Every second of every seizure is damaging, microscopically maybe, but none the less harmful. These events don’t just change the course of my day, or Colbey Raye’s day but also Austyn Jaynes. Maybe she can sense my discomfort, or my fear, but she can go from being happy, independent and needing nothing from me to a magnet with a force so strong nothing can pull her from my side. She wants to be held, to be rocked, and will just sit at my feet while I do the daily chores. I feel bad for her, and I wish I could sit and rock her pretending there is nothing else going on around us! But our life isn’t easily paused, and we must continue with our normal routines and carry on with the day, giving God the wheel so we can brace our selves during the sharp turns.
Today marks 11 months since our sweet Colbey Raye came into this world. In those 11 months she has managed to reach more people and touch more lives than I ever could have imagined! No smile can bring more joy than hers, and it’s an almost permanent expression on her face. She can be grumpy yes, and she is starting to find a mind of her own! She knows how to get what she wants too :). If she wants to nurse all she has to do is reach for me and whine! She has also started to become frustrated when we try to get her to do something she doesn’t want to do! She will stiffen up, grunt and refuse to cooperate! And then she will try to do whatever it is all on her own. Independence and stubbornness coming through I think! Must be something she has picked up from her very independent stubborn sister 😉. Austyn Jayne has started to include Colbey Raye in her playtime activities, and yesterday even had Colbey Raye in a choke hold trying to get Colbey to nurse from Austyn Jayne’s belly! It was a humorous sight to see for sure.
Colbey Raye is doing very well! She has been sick over the past week with a terrible cold and ear infection, but her seizures have seemed to stay away! We are so thankful for that. She has been experiencing a few staring spells we are concerned about, but since she has been feeling better the staring spells have lessened. Her OT and PT have been a little lacking due to Colbey Raye’s uncooperative attitude during this cold, fingers crossed she will be ready to play/work extra hard on Friday :). She loves to play copy cat, and has started to copy us more, instead of us always having to copy her. She fake laughs and it is the funniest thing to see!
Tomorrow we head to Seattle for a hearing screening, if all goes well there then we will be looking more into why her “baby talking” is delayed. She is continuing to grow, she is still figuring out this thing we call crawling! She is not quite strong enough to make it very far but she manages to scoot herself around the room.
This past week Colbey Raye and her best pall Phoebe participated in a cuddle contest and won for their category! They have the best snuggle time and it keeps getting cuter!
We are feeling blessed by this time in Colbey Raye’s life, she’s beginning to expire Colbey Raye things she hasn’t been able to due to the seizures, and she is catching herself up and learning more and more every day. She’s such a joy to have, and I love every single snuggle, kiss, smile, giggle she gives me! I love you sweet baby Raye! God is holding you so tight!