Monthly Archives: February 2014

When does something new become something “normal?”

New trends soon become the “norm”, new music becomes old, the “new” iPhone will be outdated in a year, some things become “old” lose value and slowly fade away. Some of us get comfortable in the past and want to stay there, and some of us are right in the mix of things, changing wardrobes weekly with the newest style. I still wear clothes I wore in high school! Outdated? Yes maybe but I think they are comfortable and I still fit them so why not right? My old is still my normal, when it comes to some things. Things come, go, stick around and change, we adapt to the change and we move along with them. There are few things that never get old. On Monday Colbey Raye had 4 seizures, yesterday she had one and so far today she has had one. These seizures never get old, they never become normal and the experience never feels comfortable. It could last 20 seconds or 20 minutes and the feeling is the same. We are always somewhat expecting them to reappear, and we hold our breath through each cold, flu, virus, anything that can trigger the appearance of a seizure. And when they come they are always scary, always uncomfortable and never normal. Monday ended her longest streak of seizure freedom, it lasted 36 days! And an amazing 36 days it had been! She has learned so many new things in the past month, her progress has amazed both her PT and OT therapists, as well as her mommy and daddy! She is trying to fight off a stomach bug, the probable cause for her seizures breaking through, and her doctors are very hopeful that with a little extra medication and time she will return to her seizure free state and go another 30+ days without any more seizures. We are really hoping this is the case and these “mild” seizures aren’t the start of past trends.
This morning we had Colbey Raye’s second post op visit with Dr. Ojemann. He was very happy to see her using her right arm more than she had been before and was thrilled she had gone so many days without a seizure. He is not to concerned about the past few days of seizures as long as the subside when she is feeling better. For now things will stay the same, and we will continue to have regular follow ups with neurology, and neurosurgery.
Last week Colbey Raye saw ophthalmology and we learned that her sight is in the normal range, this is good! We also learned that she does have a vision deficit, after about 45 degrees off to the right Colbey Raye looses sight of objects in her peripheral visual field. This was expected, but it will take some time before the doctors will be able to fully map out what her vision impairment entails. We have a follow up
In a few months and will know more then.
We are enjoying this time so much, Colbey Raye has the best little personality and can bring a smile to anyones day!! She’s a little spunky, busy, giggly joy and I can’t even begin to explain how happy she makes all of us! Austyn Jayne is in love with her and always has to kiss her as soon as we walk in the door after appointments. Sweetest big sister! Soaking it all up 🙂

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Colbey Raye’s best friend Phoebe ❤️

A lot of family and friends who keep up on Colbey’s blog also follow my Facebook page and have seen the sweetens of Colbey and Phoebe so I just wanted to share a little about how this loving bond came about! Animals can be therapeutic I’ve heard, and this kitten sure has been a blessing for Colbey Raye! With Colbey Raye’s surgery creeping closer and closer I wanted so badly for her to have something to love on and snuggle with. I decided she needed a kitten for Christmas. So I began looking for kittens and I was hoping to find one young and one that had been “man handled” a little by some young kids to help insure that it would be friendly! I’d found a few that were super cute but none fit the sweet snuggly bill until I came across this 13 week old Maine coon. I looked into Maine coons and heard they were very people oriented, friendly and loving everything we wanted so I spent the next 2.5 hours in the car driving to pick up this scared little thing and back home again. Christmas came a little early for Colbey but with surgery only 5 days after Christmas I thought they needed as much bonding time as possible! Once home the kitten spent the next 2 hours hiding under the couch. A little saddened, we went about our day as a typical Saturday and finally kitty emerged and began snooping around. I set her in the playpen with Colbey Raye to see how she would act. Nothing but love came from this kitten! It was instantly sweet and loving towards Colbey Raye. I was so happy! They played and then snuggled!

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We named her Phoebe and she swooped in and snuggle right into our hearts, and into our beds! She slept in bed with Colbey Raye every night, wether Colbey was in her crib or my bed Phoebe was right next to her. The guard kitty I called her and she was by Colbey Raye’s side whenever Colbey Raye needed a snuggle.
We knew there would be no issues with Colbey Raye wanting Phoebe back after surgery but I was nervous that Phoebe wouldn’t want Colbey Raye back. Boy were my worries in vain! Just 2 days after arriving home from our stay at the hospital Phoebe snuck her way right back into Colbey Raye’s bed!

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And so it began again! Every nap, and all night long Phoebe slept next to her little healing person.
Once again I was nervous that this sleeping habit would fade when we moved Colbey Raye into her own room, and wrong again. Phoebe found Colbey Raye’s room the very first night and hasn’t missed a night sleeping in her crib since! Colbey Raye always falls asleep first but when Phoebe is ready to settle down she hops in bed and snuggles up for the night.
Now that Phoebe is almost 6 months old she’s began to be a bit crazy at times.. She’s a typical kitten who does topical things such as; attach your feet when walking by, climb curtains, scratch up furniture, lick the butter (YUCK!) but she’s Colbey Raye’s best friend and she is nicest to Colbey Raye. Phoebe will attach Austyn Jayne and Josh but never Colbey Raye! She will give Colbey Raye a soft nip here and there to remind her not to pull our her whiskers or fur, but she’s other wise sweet and nice! To Colbey Raye that is :). This is one special kitten, for one special baby girl!! Even though she can drive us all a bit crazy at times she’s the perfect little snuggle buddy I’d hoped Colbey Raye would have! Best Christmas present ever!

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Accepting a new normal

I have a handful of posts I’ve started but never gotten back to to finish, so hopefully I can compile a few thoughts here and finish this to send off! Tomorrow we meet with the ophthalmologist to see what Colbey Rayes vision deficit entails, and to make sure there are no other concerns with her vision. Later in the afternoon we will be seeing a virologist to go over some information that has been more recently found. I still need to compile a list of questions to ask during this appointment but I’m not sure where to start or really what to ask. It’s a good thing I will have nothing but time between appointments tomorrow to try and brain storm a few to write down!

Today is a record holding day for Colbey Raye. It is the longest stretch of time she has been seizure free since the beginning, thirty-two days to be exact! And counting 😊. She is seven weeks post op and is still continuing to make leaps and bounds of improvement. She even has found her own little attitude and figured out how to receive what she wants when she wants it 😊. Still as sweet as can be just adding a little spice! She has began to show emotions more appropriately instead of being confused on how a situation makes her feel. She is easily frustrated when it comes to working on activities that are hard for her especially at PT and OT. Both are going really well, Colbey Raye is improving week to week and we work hard with her at home but she is easily tuckered out. Once she’s tired, after about 15 minutes, all she wants is minute or two of mommy snuggles to calm her down and then she is ready to work hard for another 10-15 minutes. Our therapy sessions are scheduled to run for 45 minutes but we are slowly trying working up to that. Colbey Raye will only last about 20-25 minutes before she’s in tears begging for me to snuggle her tight, or to nurse her until she’s calm again. She has a hard time calming herself on her own and needs some extra love before she can regroup and settle down. It does take a lot for her to get overstimulated or overwhelmed enough to be upset but once it happens she requires a short nursing or a tight snuggle. I love how snuggly she is! There is something extra special about a baby willing to snuggle all day, especially once they are 10 months any trying to be mobile! Still no crawling but Colbey Raye is working very hard to learn 😊.

Colbey Raye continues to surprise me with her progress and abilities! I’m feeling a little bit proud and excited, Monday while I sat folding laundry I decided to turn on the “Baby signing Time” DVD we own for Colbey Raye to watch. We have introduced her to a few signs, such as the sign for more, eat, all done and milk. As soon as the section about eating came on and they began to sign “more” Colbey Raye began to sign it also! I couldn’t tell until then if she knew what the sign for more really meant or if she was just clapping because I gave her food, but now I feel more confident she is understanding what these few signs we use mean. These abilities that seem like little accomplishments are huge for Colbey Raye, and bring me so much hope. She’s learning through daily activities and is retaining these useful tidbits of information. She still does not babble or baby talk so we want to help her learn other forms of communication while we work on the language side of things. I know it sounds silly expecting a 10 month old to communicate right? But there are so many forms of communication, body language, verbal cues, hand gestures etc… And generally by now little ones can communicate their basic needs and wants if we pay close attention to their gestures, our goal is to help Colbey Raye find her form of communication so we aren’t always guessing what desires she needs met.

I want to touch on a subject that can be hard to accept at times but it’s been tugging at me for a few weeks now and I just want to start by saying it is a long proses! A few weeks ago Josh and I went to an epileptic support group meeting. Josh had gone once before without me and he felt inclined to go again so we went. It was a good experience and I feel like going is beneficial to josh and I and that my insight could help others who attend. I myself feel knowledgeable and connected with others who support me but I still enjoy going with Josh and learning others experiences. Anyways, I told our story to the group, I was assured in my own statements and I felt confident in what our goals were and what I wanted to achieve for Colbey Raye. When I was finished the group was silent, and finally one said “you seem to have it all together? It’s been such a short time and you’ve been through so much, how do you do it?” I want to say I do not have it all together! It’s a proses and maybe a never ending one, but I have faith, family and experiences that help me so much. But I have to say “having it all together,” it starts with acceptance. If I did not accept this challenge things would be so much harder. If I didn’t accept Colbey Raye for who she is this would be so much harder, if I didn’t accept the responsibilities of raising and accommodating a special needs child this would be so so much harder. But I’ve accepted the challenge and in fact I’ve embarrassed this situation with open, loving and willing arms! Is it hard? Yes. Is it frustrating? Yes! Is it exhausting? Oh yes, but more than anything, it IS. And we cannot change what IS, so we learn to adapt and life moves forward. Maybe we had other plans but plans change and we learn to love it. No, I do not love the almost weekly drives to Seattle, or the worry that is always present in the back of my mind. But I love seeing Colbey Raye learn new things, and I love that we have an amazing group of doctors located only an hour and a half north of where we live! There are so many challenges when thrown into these situations, but there are so many joys to be had when in these situations as well. When you can see the joys and live for the joys, that’s when this becomes the new normal. My hopes and dreams have changed so much for Colbey Raye but they are still abundant and I still have hope that she will achieve these goals and she will have goals of her own one day as well. Even before The first time I felt her move in my belly I knew she was a blessing, but my mind could not have fathomed the true blessing she is. God made her special and I’m so blessed he chose to give her to me.

Happy 10 months

10 months ago we brought into this world the most precious little girl I’d ever seen. A head full of dark hair, a sweet turned up nose, big squishy cheeks and pretty little eyes, she was beyond perfect! No one can prepare you for the love you will feel once becoming a mother. It is the strongest, most selfless, painfully amazing kind of love I’ve ever felt. I instantly loved that little bundle so much it hurt, and I knew right away she was my cub and mommy bear was going to protect her forever. Little did I know this protective instinct would be set into full force action only weeks later.
10 months can sound like a long time but it sure can fly by so quickly! now looking back on all that we have battled through I am more and more amazed by my daughter! In her first 10 months of life she has spent over 2 months in the hospital, experienced 3+ different types of seizures, has had an uncountable number of seizures, been on 4 different types of anti-epileptic medications, underwent a craniotomy, received over 50 stitches, and the list goes on and on. In spite of all these road blocks Colbey Raye has still managed to slowly meet mile stones, made huge progress and is the happiest, friendliest, lovable baby I have ever met. I can honestly say I’m not being biased, our 2 your old is lovely and we adore her! But she’s definitely not characterized as sweet and friendly, she is more of a tease and a spunky independent bossy Little Lady 😊, but still just as perfect and loved as her sister!
In just a short 10 months I’ve learned so much about being a parent, the sacrifices one makes for the well being of a child, and the difficulty of being faced with making decisions that will affect the rest of the child’s life. It is difficult having a special needs child, it can be stressful, exhausting and emotional but it’s my normal, and it’s a normal I have grown to love. I do have fears, I have doubts, but most of all I have hope, hope for a bright future with greatness in store for Colbey Raye. When I look at Colbey I see joy, love, peace, and an innocent child depending on me to help her become all that she can be. We do not know what the next 10 days, 10 months, 10 years, will hold for Colbey Raye, but I do know there will be precious blessed moments to cherish and love. We have learned to take each day one by one, soaking up all the blessed moments, cherishing all the peaceful times and living in the present.
Just in the last month Colbey Raye has learned to feed herself finger food, transition from her belly up to a sitting position, she’s finally realized i am mom! She claps and leads screaming matches, imitates tongue clicking, gets on hands and knees and rocks (no crawling yet). Loves sitting with sister and is much more interested in toys, she now sleeps all night long and in her own room! It’s been an amazing month full of great progress. She has continued to stay seizure free even through a cold and spiking a fever. This is the first week we have not had to make a trip to Seattle since surgery, and it feels nice! Prayers that this wonderful progress continues, and seizures stay at bay.

Busy growing!

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I want to start this post off by being thankful for the past few weeks. Today marks Colbey Raye’s 20th day in a row without a noticeable seizure! This is one of the longest stretches she’s experienced since she was diagnosed with FCD back in June 2013. In the last month she has recovered extremely well from her craniotomy and is quickly learning new tricks such as clapping on demand, picking up food with her thumb and finger, she has even sat herself back up a few times! She has begun to realize when mommy and daddy are not around, she is more aware of her surrounding and recognizes familiar places and faces. She loves to eat everything! And is growing like crazy! She’s 29″ tall, weighs 20lb and can scream louder than me! This is all such great progress and we enjoy each moment watching her discover and learn new things.
We met with Dr. Ko for a follow up clinic visit Tuesday , and she thinks Colbey Raye is looking wonderful! We did learn that her EEG is still showing very abnormal epileptic energy in her background but there were no seizures detected during the 3 hour EEG. Her background looks very similar to what it was prior to her operation and the epileptic “surges” are still coming from the same areas as before. This is good in the sense that there are no new/different areas involved and also that the right side of Colbey Raye’s brain is still completely normal, but it is an indictor that she is still at a heightened risk for seizures and that these “twitchy” and starring episodes she has been having could be seizure activity breaking through. We had an EKG done as a precaution to make sure there are no abnormalities with Colbey heart in the event that we need to start a 4th medication, the results came back normal! We do not have any plans to add a 4th medication at this time (or any time soon hopefully) but if the time comes we will be prepared.
Colbey Raye is starting weekly physical therapy as we have begun to notice weakness in her right leg as well as the continued weakness in her right arm and hand, also she will be starting occupational therapy and has her first assessment this week. Tests and exams to come: hearing test, eye exam, blood work, urine sample, virology visit, and 6week post operation follow up. Few busy month ahead of us!! Hopefully we won’t have anything new added on!
Giving thanks, an update on Colbey’s recent tests, tests to come, and now…… What is going on inside my head?
Some days I struggle to find the words I want to use to best describe my thoughts and to relay the most accurate facts about recent finding or current concerns. There is so much information that flows into my brain, I know I can’t retain it all, but my hope is between the notes I jot down and the info my brain deems important I will be able to compile an accurate summary. It can take a day or so for me to really put it all together and comprehend what’s been discussed and I begin to understand more after I let it all settle into my brain. Today my thoughts are a bit jumbled and my mind won’t rest long enough for me to connect the dots, if there are any dots to even be connected. I do not want to go into detail, as I don’t have as much information as I’d like, about all we discussed on Tuesday with Colbey Raye’s neurologist. I will share that after looking at a sample of Colbey Raye’s brain tissue under the microscope it has been confirmed that the thickened areas of her brain are in fact Cortical Dysplasia. Her doctors were very certain it was but it’s never factual until confirmed once looked at under the microscope. Along with this confirmed find there was also another find, an infection, that has caused more questions to arise. We still do not know if this is something to be concerned about or not, we will be looking deeper into this, getting more tests, seeing more doctors and looking back into Colbey Raye’s first blood work ups. We’ve been informed there could be no affiliation between the Dysplasia and this infection, but also we have been informed that there is a small chance the infection could be the underlying cause. More questions than answers right now for us and for the doctors, but we are hopeful this is just a hiccup and there will be no link between the two! Prayer and more prayers right now as we wait for more information and results.

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