Colbey Raye’s Story

 

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It all started with a plus sign. We, my husband Josh and I, were excited to announce that we were expecting our second child. The next 9 months brought a lot of changes, excitement, and a rollercoaster of emotions! But the true changes were yet to come. Colbey Raye was born April 12th, I was successful in my V-Back attempt and the delivery went perfectly, no complications. This was the happiest and proudest moment of my life! We had a second, healthy, happy, sweet baby girl, life was amazing. And Austyn Jayne, our almost 2-year-old, was smitten by her new baby sister. “Coco-be” is what she called her, and Austyn Jayne wanted to kiss her, hold her, snuggle her, feed her, she was her baby and she let you know it! We were all in love to say the least

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When Colbey Raye was 5 weeks old I started to notice a change in her habits. She started sleeping a lot more, and began having these interesting eye movements and blinking episodes. At first I brushed them off as little baby quirks, and decided she must be growing and needed the extra sleep. It was Memorial Day weekend and we had big camping plans anyways! But that Sunday on our way to church my brother brought it to my attention. Colbey had one of the episodes and Carson worriedly asked me what was happening to her, I paused and calmly stated that I thought she was having a seizure, everyone else seemed to think I was overreacting and tried telling me it was nothing to worry about. All through church that morning the only thing on my mind was Colbey and the few episodes I had seen earlier that week. I just wanted to pull out my phone and Google it!  Finally home from church I did some research, watched a few youtube videos and decided I was right she was having seizures. As the mother I knew something was not right, and that night these episodes turned into full body convulsions, vomiting, shaking and eye deviations to the left, we rushed Colbey to the local ER after Josh finally witnessed one of the episodes. At first the ER doctor thought the same as my family, I was an over reacting mother and my baby was probably “fine”… Just as the Doctor was saying there was probably nothing to worry about it happened again, and I was so thankful it did, Colbey Raye began having an episode and the doctor began to panic. She did not have to say a word, I could see it all over her face, there was something seriously wrong with my perfect, sweet, tiny baby girl. She left the room to contact Seattle Children’s Hospital for consultation. We spent the next 9 hours in the ER having tests run, blood work, cat scan, x-rays, urine samples, and multiple spinal taps trying to find a possible infection that could be causing these seizures. Finally she was admitted and was started on Phenobarbital, an anti epileptic. Results from the tests started coming back clean and after another 24 hours at St Peters we were transported to Seattle Children’s Hospital, still confused and scared.

We were checked into the ER at Children’s and Colbey Raye was started on a 40 minute EEG. After another 9 hours in the ER Colbey was admitted. A group of pediatric residents came in and told us that the neurology team would be in to explain the EEG in the morning. The EEG results came back showing spikes of seizure activity coming from both sides of her brain but they were a lot stronger and more active on the left side. Colbey was having infantile Spasms (cluster seizures) that went on for 5 minutes to 40 minutes.  Keppra, another anti epileptic, was added to help with seizure control. A whirl wind of emotions, tears, sadness, pity, doubt, confusion, we wanted answers and no one could give us any. What did all of this mean for our sweet baby? What was her future going to be like? I had plans, plans for Colbey Raye and her sister. What did all of this mean for their sisterly bond? I wanted my girls to have this unbreakable bond like I have with my sisters, but was that going to be possible now? I was scared, terrified, and I needed some type of information to help me wrap my head around all of this.

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On day 3 at Seattle children’s Colbey Raye received an MRI. The next few hours waiting for the results felt like days, would we finally have an answer? The Attending Neurologist Dr. Richardson came in that afternoon with the results and nothing, No abnormalities, no answers, back to where we started, confused and waiting for the doctors to decide what to do next. The next morning, before the team had done their rounds, Dr. Richardson came in to our room and he told me he needed to show me something. He pulled up Colbey Raye’s MRI results on the computer and was showing me Colbey’s brain slice by slice explaining how an MRI works, and then he stopped, paused, and asked if I noticed anything different on this picture, I replied with a no, and he began to explain. Doctor Richardson circled an area on the left side of Colbey’s brain saying it was very faint and subtle and that is why they had missed it before. The doctor who originally read the MRI and found no abnormalities was up very late going over it again and again and finally he noticed this jumbled area, the cause for all of her seizures. Colbey Raye was diagnosed with Focal Cortical Dysplasia located on the left Parietal lobe, finally an answer to this chaotic week. Relieved? Yes and no. We were thankful to have a cause but that really was all we were given. All the underlying questions still remained. What does this mean for her in the future? What affects will the seizures have on her? Will she always have to be on medication? What type of delays? Etc. all of these questions were answered similarly, “Our hope is…” “Only time will tell…” Doctor Richardson stated, “we are no longer searching in the dark for a cause, but I still cannot tell you what this means for your daughters future,” and gave us a list of possibilities, Colbey would most likely be on medication the rest of her life, down the road if things didn’t improve she could have brain surgery, she could get better or worse with age, etc… He had big hopes that medication would do the trick and Colbey Raye would be seizure free soon.

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After a week at Seattle Children’s we were given the option to either go home and work with the doctors over the phone or stay longer until the seizures were more controlled. We chose to take Colbey home, I was slowly coming to grips with this “new normal” and felt that I was the one watching her in the hospital anyways so why not monitor her from the comfort of our own home? Over the next few days we would check in daily with our neurology team to discus Colbey’s progress. After a few dose adjustments, and seizures still continuing we added on another anti epileptic, Zonisamide, in hopes this would silence the seizures. 5 days after starting Zonisamide the seizures began to fade day by day and on June 26th our prayers had been answered and Colbey had her first seizure free day. We were hopeful, we began to relax a little. On July 9th we had another EEG. The results were wonderful, the came back in the “broad range of normal.” We started Physical Therapy to help with Colbey Raye’s muscle tone, we had a clinic visit with Dr. Ko (Colbey’s neurologist) and things were going good. On July 18th Colbey had a mild runny nose, and ran a low grade fever, resulting in a few mild break through seizures, nothing alarming. The cold passed and the seizures faded away again.

On August 1st I opened an in home daycare. The plan was that once Colbey was born I would quit my job (working for my cousin at her in home daycare) and started working towards opening my own daycare, this way I would not have to leave either of my girls!

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Only one child other than my two attended, it was so wonderful knowing this made it possible to be home with my girls, I did miss working at my previous job though, and Austyn Jayne missed it too. Colbey was doing so good I decided to take one more child so that Austyn wouldn’t be so lonely; she was scheduled to start attending September 1st. We were able to attend our cousins wedding down in Oregon, and spent our weekends at the lake and camping with family. I kept a close eye on Colbey, she was always by my side but I was able to relax more and more.

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We had a visit with Dr. Kuratani the Epilepsy specialist on August 21st, and because Colbey was doing so well no changes were made. Dr. Kuratani wanted to see how long she would be seizure free without adjusting her medications. They were trying to wean her from the Phenobarbitol and instead of lowering the dose we were going to try to let her outgrow it before taking it away. We discussed other options such as surgery, different medications and diets in the event that the seizures started up again but nothing was decided and we went home with more “we hope,”  “time will tell” and “what ifs” than we came with.

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The dreaded day. The morning of August 30th the seizures came back full force. Panic came over, the seizures had changed in appearance, her eyes began to blink rapidly, she was foaming at the mouth and making sputtery noises with her lips, her torso became stiff and her arms stiffened and shook. She started out clustering and each seizure was longer than the last, finally she went into a continuous seizure lasting over a half hour, I called 911 and the ambulance came, still seizing they administered rescue medication, the daycare parents picked up their children, my mom came and got Austyn Jayne and I hopped into the ambulance with Colbey Raye.

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Josh met me at  St. Peters and after 7 hours in the ER and multiple seizures later we were sent back to Children’s. Her levels were checked and it was determined that Colbey had outgrown the medication doses, and that was the reason behind the breakthrough of seizures. Her Keppra and Zonisamide doses were raised and we were sent home with Diazepam (a rectal rescue medication) to use in the event she had another seizure lasting longer that 5 minutes. The medications started to help and after a few days they subsided and Colbey Raye started having seizure free days again.

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September 27th came all to soon for us, we had truly enjoyed the last month of seizure freedom, and we were not ready for what was coming. The seizures started up again at 9:19 that friday morning, they started as a cluster and after 11 seizures in 15 minutes the seizure turned continuous and after 5 more minutes I administered the Diazepam for the first time. Thankfully my sister Whitney, whom lives with us, had not left for work yet and she kept all the kids in the other room (I had my 2 youngest siblings joining us for daycare so we had an extra full house) with a TV show while I attended to Colbey Raye. because this was the first time I had used the rescue med i was advised to call 911, so the paramedics came and checked on Colbey, she was doing okay and they felt comfortable letting her stay home. I called to tell Josh everything and to be ready to leave work just incase things acted up again. The medics left, Colbey went to sleep and the day proceeded as”normal” with me just a little bit on the edge of my seat. At 2:30 that afternoon Colbey had another seizure, this one was continues from the start and lasted over 8 minutes. At 9:47pm another seizure came, and at 11:07pm another, this one lasted over 15 minutes, we administered diazepam, called the on call neurologist and at 12am he advised we take her to our local ER for observation. I packed up Colbey, and Josh stayed home with Austyn Jayne.Once in the ER labs were done and Colbey Raye slept very little with all the nurses and doctors visiting. She had a chest x-ray taken, urine sample, everything came back clean so at 4:30am we were sent home. Home in bed all cozy, seconds away from falling asleep and it happened again. A 9 minute continuous seizure, called the neurologist again and he told us to come to Seattle. We woke Whit up and asked her to stay with Austyn while we went to seattle, and Josh’s mom would be there by 8am to take over so she could go to work. Family is so amazing to have close by! Colbey tested positive for the Rhino Virus, and was admitted, we spent the weekend in the hospital yet again adjusting medications and observing her. The doctors stated that her seizures no longer fell into the infantile spasm category and were now complex partial seizures. We took Colbey Raye home that sunday and over the next week her cold became an ear infection, she was still occasionally seizing, we adjusted medications over the phone, she had an allergic reaction to the amoxicillin (which she was on for the ear infection) and she just was not getting rid of this cold easily. The seizures were getting worse and we put her on a new antibiotic for her ear infection. On October 14th I had to administer Diazepam and the seizures were still coming frequently after that and neither Colbey Raye or I were able to sleep much that night. Colbey Raye’s clinic appointment with Dr. Ko was scheduled for the next day so in the morning I canceled physical therapy and drove her to Seattle Children’s early just to be close incase things continued to worsen. things were going good until we check into the appointment, as soon as Dr. Ko came in to asses Colbey Raye she began to seize, it was short and mild but for precaution DR Ko went to inform another doctor and they discussed admitting her. After a few minutes another seizure, and a few minutes later another, the decision was made, Colbey was going to be admitted again for observation and we just had to wait a little longer for a room to be ready. Another couple of minutes and another seizure, this one was not stopping,  and after 5 minutes the seizure was still going, another doctor came in with the nurse, they administered diazepam and watched the clock, still 2 minutes after the diazepam was given the seizure remained. I just stood there listening and waiting for an instruction. nurses were in and out, someone was told to order a crash cart, then the doctor said “cancel the crash cart I don’t want to wait,” and she picked Colbey up told me to follow and her, the nurse, and I ran to the ER. On the way Colbey began to desat, her face changed color and she was still seizing. finally in the ER she was given some oxygen and slowly the seizure faded and I sat down. nurse after nurse, doctor after doctor, I did not stand up, I sat and my mind was on repeat, I explained what felt like 100 times what had been going on the last few days and I was tired, Colbey was tired, and I just wanted to be left alone with her. finally alone, I turned off my phone and climbed in bed with her, she slept I cried. After a few hours we were moved to a room. Colbey gets very grumpy after any rescue medications and was very unhappy after she woke up, I discussed this with her doctors and we decided to give her phenobarbitol boluses for clustering seizures and only to give rescue medication when the seizure lasted longer than 4 minutes. My sister came to stay that night with me and help watch over Colbey Raye, but I still was not able to sleep much. Josh was up to visit but went home for work in the morning. Colbey was in the hospital for a week, so much was happening, I was sleep deprived and so was Colbey, she was seizing 40+ times a day and nothing, NOTHING, was helping them. She was getting bolus after bolus, and ended up maxing her doses of Phenobarbitol, Keppra, and Zonisamide. The doctors seemed at a loss and they were hoping this was just the Rhino Virus still present in her system and that once the full doses kicked in that her seizures would be less, but we were told this plan was most likely not going to help her be seizure free, and to be prepared to see seizures daily from now on. We went home with Colbey Raye still having up to 20 seizures per day and would be admitted again only a week later. this is where my blog picks up…

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 Our doctor was right, Colbey Raye has not had a day without seizures since, and she now turns blue with every seizure and sleeps often but not well, Trileptol was added and she is now maxed out on 4 different anti epileptics and still no change in her seizure activity. she receives a Phenobarbitol bolus every couple of days, which has not been extremely effective. She averages 15 seizures a day, and is very disoriented for a few minutes after each, followed by a nap. Still she is such a strong amazing little girl, almost always able to give a smile, she lights up any room. She is perfect in every way!

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Clinic appointments, and evaluations are scheduled, along with an MRI and PET scan to be done in early december. once these results are in Surgery will be scheduled and most likely take place before Christmas and we will go from there. I know this journey has just begun, we are hopeful, prayerful and grateful for our happy little Coco-be.

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5 thoughts on “Colbey Raye’s Story

  1. Cynthia Wilson

    So glad you started this blog. I try to check it daily. My prayers are always for you guys and your precious Colbey Raye

    Reply
  2. Julie DeFant

    I just finally saw your blog, I knew something was going on but didn’t have a clue exactly as I started praying for you guys months ago. I will continue my fervent prayers, and be more precise. We are sending you all our love, my heart is so heavy for you, please let us know if there is anything more we can do.

    Reply
  3. Sarah T

    My little boy who is 2 started having seizures at 13 weeks of age but was only diagnosed with focal cortical dysplasia at 13 months after multiple MRI’s and EEGs. His seizures are controlled at the moment by Epilem and his next MRI is scheduled for 2 weeks time. You, your little girl and family are all in my prayers and thoughts. I understand how hard it is.

    Reply

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