On Another October Day

Sitting here, holding a baby monitor, staring at my sleeping Colbey Raye. I should be working on the million loads of laundry I haven’t done all week, but instead I’m just here, sitting, watching, listening and thinking about what might happen if I let this screen out of my sight.

Monday’s seizures have brought a lot more questions into my head. She has now had a total of 5 post hemispherectomy seizures. Up until Monday I have been able to “blame” these past seizure on other possible causes. Seizure number one, 5 days post hemi, justified by the fact that it was only 5 days after a major brain surgery! Her brain was healing and it is not uncommon for seizures to follow such an invasive brain surgery. Seizure number 2, came in October 2015, 1 year and 5 months post Hemi! This seizure happened while Colbey Raye was battling a bladder infection and her temperature reached 104! Ruled to be most likely fever induced and we wrote it off as a febril seizure. Seizure number three came in May 2016, we were in the middle of a major medication wean, the seizure was very brief, short compared to most of her “typical” and although she napped for a while after, she bounced back to her baseline fairly fast! Medications can be tricky, so a small seizure while her body normalizes less medication can be justifiable right? So that’s what we did, justified them in all ways possible to help keep ourselves sane in the moment. 

Monday, October 17 2016, Started out as a pretty typical day! I did have to wake Colbey Raye up (which is not normal) so she could eat breakfast before heading off to Preschool. But she ate her breakfast got dressed and headed out the door to catch the bus, her ABSOLUTE most favorite part about going to school 😊. Nana came, I headed off to my midwife appointment, Auntie Nini got Colbey Raye off the bus, nana fed her lunch and put her down for a nap so she could get some rest before therapy later! When I got home Sue (nana) said Colbey Raye seemed pale and didn’t eat much lunch and was very tired. After a busy morning at school Colbey Raye is usually very tired and ready for a nap, so I didn’t think to much about it. Later as I got her up from nap she felt warm, and was shaky so I took her temperature, she was running a low grade temp of 99.8. I canceled therapy and decided to let her have some movie time on the couch. I went to the bathroom and as I sat I heard it. An all to familiar sound. A sound no one else (unless you’ve experienced this a million times) would bat an eye at. I paused, but I knew what was taking place and I ran as fast as I could from the bathroom to her side. She was looking for me, trying so hard to call my name but she was lost in a world she doesn’t remember. A world I know to well. After it all ended she slept, we snuggled and the rest of the afternoon was filled with, rest, tv and naps. She still had a low fever that was now at 100.4, still not high enough to cause a concern! We had a late dinner and as daddy sat to snuggle his sleepy girl seizure number two came. Again she was scared! Began to look for someone to help, tried to call for me and after a few second was again lost in a world she doesn’t deserve to be in. Once it was over again she slept. On and off and slept the rest of the night in our bed! Josh and I didn’t sleep much, but Colbey got the rest she needed. She has slept a lot since, trying to recover, I have slept very little.

In the moment I’m calm, collected and can follow the steps to help keep her safe during these seizures I know to start keeping time and to take mental notes of how her body responds to the seizure. I think it is a lot harder for Josh to witness, being calm in the moment is harder. But it is a lot harder for me to mentally handle after the seizures are over and I have a little time to process what just happened. I can take the moment strong, head on and can calmly explain the entire sinario to the doctors. Remembering every detail. But once it is all over, It takes a greater long term toll on me and after a few days I realize how much it impacts my daily function.

Colbey Raye is on the mend! Other than her low grade fever she didn’t have signs or symptoms of an illness? We cannot rule these seizures to be caused by a virus or even the fever. For now her Neurology team has decided to increased her medication dose and they believe these seizures are “breakthrough seizure” caused by Colbey Rayes growth and there for out growing the dose of medication she was currently on. She is still extra sleepy, either from the effects of the seizure of the increase in meds. She is a lot less stable on her feet, dragging her right leg more as she walks and is more inclined to grunt, whine and groan than use her words the last few days. It is hard to be three! It is even harder to be a three year old with seizures.

As I helped Colbey Raye onto the bus yesterday (she skipped school Tuesday and Thursday), panic took over and I almost ripped her right back off those steps and kept her home! What if she seizes at school? Or worse, on the bus on the way to school?! And no one sees it? Who’s going to be her calming voice in a moment of sheer terror? If you have ever witnessed a seizure you know how completely terrifying it is, for the onlookers as well as the one experiencing it. All you want to do is take that fear away, the pain away and help that sweet little terrified being feel safe and protected. I need to be able to see her all the time, I’m thankful this next week she is off! And I will be able to keep her close and make sure the seizures are not going to happen again, for the time being…

Beauden witnessed a seizure for the first time. He is probably to little to remember the moment, but I won’t forget the way he layed down next to her on the floor as she seized and touched her head asking if she was okay. “Beau k? Beau k?” (He calls Colbey Raye Beau 😍) and then began to say it’s okay, repeating me I think. He checked on her and asked her if she was okay for 2 days after it all happened. Now he’s back to pushing her buttons and arguing with her as siblings do! Austyn Jayne has seen many of these, but her memory of them is faint. She remembers most that we were gone a lot and know why but the events are fuzzy. So witnessing these seizures brought back memories and worry for her. When I’ve left the house this week with Colbey Raye she has told people we are at the hospital, reverting back to what she remembers always happening after seizures! Right after her second seizure on Monday Austyn Jayne calmly asked “is Colbey Raye going to die?” How scary must it be for a 5 year old to watch her little sister go through something so hard. She has been acting up a lot more since and I think she has a hard time understanding it all. She doesn’t know how to respond and has been asking question like “when will the seizure come back? Why did she have a seizure? I thought she had surgery to make it go away?” I’ve asked myself all of these same questions.

Inspite of all that has happened this week, and this set back for Colbey, I have to end with a brighter note! Colbey Raye has been making huge leaps! She amazes us every day, her social friendly attitude wins over every heart. No one can walk past Colbey Raye and not share in her contagious smile! She is counting to 10, knows most of her colors, loves to sing the ABCs (it’s the most adorable thing to listen to by the way) and she talks non stop about the school bus! She now wants to hold my hand and step up each step, where as not to long ago she cried every time I tried to make her walk up steps. She talks so much now we have amazing conversations and she loves to tell knock knock jokes. She is funny and she knows it, she is to smart for her own good and knows how to work the system in her favor 😋. God has really blessed this little girl with a happy soul, and I’m so glad He did. She’s the light at the end of my tunnel, a reminder to be great full even in hard time, and she gives me the courage I need to have when I cannot seem to find an answer. 

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4 year olds ask a lot of questions

The moment when your 4 year old asks “mom, why did God make my sister this way?”

A week ago, as the girls sat on the couch, Austyn Jayne was trying to explain something to Colbey Raye, I do not know what they were talking about but after their conversation ended Austyn Jayne looked up at me and asked “mom, why did God make my sister this way?” It was a serious question, and deserved a legitimate answer! But I paused and I looked at both my girls as a flood of dreams and emotions swirled through my head. I may have asked myself this question A few time through the recent years but what was the answer I was to give my 4 year old? A complex question, a simple answer. “No one person is the same Austyn Jayne. God made Colbey Raye in her own special way. She is perfect in her own way, the way God made her to be.” And Austyn Jaynes response was as sweet as candy. “And God made me special too, with a whole brain, and Colbey Raye with only half her brain. But we love her!” Innocence. I have ask that “Why?” Question before, and other people have asked me “why” questions that deserved simpler answers such as, “why doesn’t she walk (past question) or “why doesn’t she use her arm” and those were always easy answers! But why was she made this way?! I do not know. God has a plan and it is way bigger than mine! Colbey Raye was made the same as us all, with minor imperfections, differences here and there, a blemish or two, but she has something many others are missing. A truely gigantic heart! She might be missing a little brain tissue but her heart is bigger than anyone else’s I know. She doesn’t cast judements, she loves everyone she come in contact with, instantly!

Today marks two years since Colbey Rayes hemispherectomy! She is one tough and amazing girl! Two years post op and she can walk! She can talk and she can even count to 1O! All on her own (but she always skips the number 8 😋). She runs, jumps (only with one leg lol) and is frustratingly independent!!

 I will never forget the moment,  before we even knew the cause of Colbey Rayes seizures, as I sat on the hospital bed and realized my world was about to change forever. I cried, and I held that baby so tight, and I remember feeling a tremendous loss. I loved that 6 week old baby and I had plans for that baby! I lost the little girl I had created in my imagination, but I gained a little girl I could never have dreamt of! And even when days are hard, and emotions run high I no longer ask the “why” question, because I do not need an answer. I wouldn’t change her, I wouldn’t trade her and I could never give up that singe squinted eye half smile she flaunts daily!! God made her perfect, in an imperfect way.

Struggles are real

I feel comfort in words. In my own words and the uplifting words from others. When I hit a low point I have to have an outlet and when I write I feel a level of relief. This blog began as a continual way for me to update all those on the current happenings involving Colbey Raye. Hospitals stays, seizures, surgeries etc. a documentation of her journey, a journey that is still new, fresh and ever changing! But just as much as this blog is about Colbey, it is about my family, my husband and myself, and how her journey is just as much ours. The effects it has on her as well as on us. She is a constant in our lives as we are in hers.

The past few months have been a struggle, the emotions are everywhere and daily challenges are always present. I have to give her a grand amount of praise! She is walking! Non stop, all over, every where we go she is walking. She does not want to be held when we are out and about and she’s determined to walk as much as any other child does. This comes with its challenges, and the enormous fits that fallow when I place her in the shopping cart are overwhelming, but I wouldn’t trade them, because she walks and she deserves that freedom! Her new found independence is a great tool for her, and has helped improve other areas such as speech, understanding and awareness of her own body. She runs into less walls now, can (most of the time) catch herself from falling and or will sit down before the impending fall occurs. It is truly amazing to watch these improvements! 

But along with all these wonderful new things, have come some hard and challenging ones. I think these negative events have taken the biggest toll on me. When the emotional meltdowns occur I’m heartbroken to see her in those moments. The hitting and screaming, uncontrollable crying, anger, range and I cannot help or fix it for her. I’m at a loss and feel helpless. Once her flip is switched I struggle to turn the events of the day around. “This cannot last for ever” I keep reminding myself. Her siblings take a hit, literally, and I struggle to find the equality needed to bring peace to them as well as to her. It’s constant, daily and I’m beginning to feel a little week and run down from this extra trying time.

Everyone is amazed with the wonderful progress she is making, and those who rarely/less often cross her path are completely blown away by her wonderful new ability to walk and I am too!! They always say “wow! She’s doing so wonderful.” And although I agree, my response is hesitant, yes she’s doing amazing and I’m so happy!! But only those closest to her have seen these new trying times in true form. My self, the family and her therapists witness the daily challenges. But Colbey Raye is driven by new faces and social gathering, and I’m beyond thankful that a trip to the grocery store is calming for her. Otherwise we would never leave the house… Sometimes I think to myself I shouldn’t post this because it’s some what negative. But it’s the reality we live in with Colbey Raye, and a huge part of her journey at this point in time. The struggles are real, they are constant, and the weight is heavy. Struggling to find the right way to discipline, how to correct the behavior and how to stand strong in a moment when I feel so week. She’s my greatest blessing, and my biggest challenge.

I thank God every day for giving me this little girl. I love her so much, more than any other mommy ever could, and I know hard times come and hard times go. I wouldn’t trade her, I wouldn’t change the person she has helped me become. And I pray I can be the best mommy to her because only I can do this job, and I’m determined to do it well. 
 

When a dream becomes a reality

  
This will be quick and short as I know my time with only one awake babe is limited! But I just have to take this moment to express the truest, deepest feeling of joy and gratitude. A dream has come true in our house! One I’ve hoped and prayed for, but also one I’ve felt (at times) may never come. This morning, as I stand in the kitchen making oatmeal for breakfast (one of the kids favorite breakfasts!) I heard the thump thump of a bottom scooting down the stairs followed by the pitter patter of tiny foot steps coming down the hall. I knew who it was, but the sweet tiny “mama?” That followed confirmed it, Colbey Raye was awake! She woke up, got herself out of her bed (a mattress on the floor) opened her own bedroom door, scooted herself down the steps and when she got to the bottom of the stairs she stood and WALKED into the kitchen! My baby walks! She walks. Sometimes I say it over and over again because it’s just to wonderful to almost believe, I may have pinched myself once or twice to make sure this wasn’t a dream. But it is real, it is here, the moment I’ve prayed for, a turning point for Colbey Raye, she walks. And she does not walk occasionally, or a little here and there, she WALKS all day long every day for the past week.

I cannot begin to thank all of her therapists enough for the time they spend with her, loving her, helping her, encouraging me! And pushing through those tough, hard days that come with a special needs child. They are amazing, and they are a blessing to my life and Colbey Rayes I never imagined! By her will, my prayer and their efforts this little miracle walks! Thank you Annie, Brenda and Nancy for all you do and have done!

I am Thankful

  Josh and I were talking a few nights ago and he asked me ” do you ever think about what if there was something we could have done differently during your pregnancy with Colbey Raye to have changed the outcome.” We talked about his feelings on what ifs and maybe he could have helped more or I could have rested more and so on. I have to say, yes, I have thought about the what ifs. More so back in the beginning when we were faced with all of this brand new foreign information! The shocking reality and the simple fact that this is just how Colbey Raye was created, I did step back and think to myself, was there something I could have done during those 9 months of development to change her fate? No, no I do not believe there is anything I or anyone else could have done to change this reality. There is nothing I or anyone else could have done to “fix” or prevent Colbey Rayes brain from forming “imperfectly.” Now, do not take this the wrong way, but I would not change anything about the journey we have been on since we were blessed with Colbey Raye two and a half years ago! I’ve never experienced anything more exhausting, anything more challenging, heartbreaking or life changing than the diagnosis Colbey Raye received at just 6 weeks old, but I would not go back and change a thing. Why you may ask? Because all though it has been hard it has been the most rewarding experience. I am able to be the stay at home mommy I always wanted to be, we have made amazing friendships through all of the therapies and doctor visits and Colbey has taught me how to love selflessly and how to place my trust in a higher power when I am no longer able to control a situation. I have become so much stronger, so much more faithful and our family has grown together in ways we other wise may not have. Colbey Raye has blessed us so much and challenged us to learn and to grow, I would not trade my perfect sweet baby Raye for anything, I love her just the way she is because she is mine and God made her perfect! I am thankful to have this strong tiny fighter to call my own, and I am thankful for the smile on her face everyday that brightens every room she enters! I am thankful she is stubborn and determined to be the best she can be, I am thankful for the good days and even the bad days, I am thankful for Colbey Raye.

The progress Colbey Raye is making

I do not blog often enough. But then again, with three little littles it is hard to find the time. I have countless begginings written up but usually fall asleep before finishing them and then I never get back to the topic I was writing about! I love to write, I enjoy it, it is a huge outlet for me. And so many times I will write an entire blog post and never publish it! Why? Because the simple act of writing my thoughts down onto paper (or typing them into a screen) can sometimes be a huge relief, and other times I am not yet truly ready to share those deep feelings with anyone but myself. I’m an “I’m doing great” kind of person even if that really is not the whole truth…

Miss Colbey Raye, boy has she grown and blossomed into a wonderful little girl! The ups and downs never seem to get in her way. She always finds a way around the obstacles, no mater how much myself or her therapists wish she’d do a few things differently, she adapts so well in her very own unique ways! It truely is amazing to watch her learn how to do some things that just come naturally to us, she is so determined to keep up. And she does! She can scoot across the floor faster than Beauden can crawl! She will win the race every time, even if it means tripping her brother 😋. She is fiesty, she is way to smart! She has recently figured out that by saying “owe” we will stop doing whatever it is we are doing to make sure she’s okay. Well we have caught on! And she cannot fool us now. Even the tears can be turned on by demand! She really could be an actress she’s pretty good at the waterworks and convincing rolls! We can add comedian to the list too, she’s funny and she knows it!

PT is coming along really well! Her anckle orthotics have helped tremendously with her stability and strength. She has a new gait trainer and actually enjoys using it! I think a break from her old one was good for her and now she realizes what she can do when she stands on her own to feet.  But have I mentioned she is stubborn? Oh, well now you know! She wants to walk very badly, and not just walk, she wants to independently walk. But she is still not strong enough, stable enough or straight enough. Now when I hold her hand to walk she will try to push my hand away so she can do it by herself, and this always results in a fall. She will now pull herself to stand at the couch turn to face outward and take two steps way from the couch before crashing to the ground. 99% of the time we catch her or she purposfully sits down when she no longer has balance control. But now and then she will fall, but she always gets back up to do it again and again and again. I think she is determined to walk before Beau. And at this rate she might! He has zero interest in learning to walk!

   
 
Speech is also going good. Colbey Raye has been putting two words together more and more often. The two words chosen are usually in her top 10 most used words but it is still a huge improvement. Among these two word favorite frases are “baba nigh-nigh,” “Buber nigh-nigh,” “Jojo back,” “dada bye,” “bye nini!” And other similar things using those same words mix and matched. But her favorite things to say are “MINE!” “Buber,” “that,” and “more.” Her vocabulary has grown so very much. She does knows more words than she can easily retrieve, but seeing things helps her remember what the word is to be said.

  
And OT, this Also is going good. We have seen improvements I had begun to feel would never come. We have seen progress, slight maybe but progress, in her right arm. She has so much more sensation! She can feel a lot more and can recognize exactly where the pain or pressure applied to righty is coming from. She will remover righty (by grabbing it with lefty) from an uncomfortable position and she will also place righty (again by grabbing with lefty) into different places and pull righty out of places when needed or asked. The ESTIM we use with righty has helped immensely and I have seen a huge change in the short time we have been actively using it. We are still striving for more use from that right arm, but trying to be patient in the process. The visual side of things has been suffering again more since this past seizure, hopefully time will heal, but we will be having some more eye exams soon. Over all Colbey Raye is improving! There are a few areas that have taken a hit since the seizure erupted, but nothing a little time cannot heal.

   
 I just have to say, Colbey Raye is beyond blessed to have such an amazing team of people fighting this fight with her! Pushing her to new heights helping her raise the bar and climb the mountains. Our schedule is a little busy, but I would not trade it. Colbey Rayes group of therapists work so hard, have researched so much just for ways to help Colbey Raye it is amazing. I may be a little lost in this crazy world of Colbey Raye with out them. They are like family and they love Colbey Raye like she is their own! So no wonder she works so hard and tries so hard to reach the goals. She knows she is so loved and looked out for.

 

 

Healthy again and feeling more herself

  
It’s taken me some time to collect my feelings to be able to write this post. Even though I’m still unsure what my true emotions are, most likely a mixture of many, I’m finally able to say that Colbey Raye is back to her self! It took a little over a week but she is finally her cheerful, friend, social self, giving out smiles left and right, With plenty to say and a “do it myself” attitude! I’ve been so far behind in my updates I feel there is so much to say! But let’s just get some milestone markers and highlight some bullet points!

Colbey Raye was fitted for her first set of anckle orthotics! She wears them during PT twice a week while we work on strengthening her legs and she also uses them at home when we spend time standing and walking! The have helped her improve her balance and she has a stronger more sturdy step since using the orthotics. She will be getting a new walker in the next week or two and I’m beyond excited!! We have been trying to find the perfect match for her, she isn’t s fan of using one, and our fingers are crossed this new one will be magical! Her speech has taken off!! She still speaks in one word sentences usually but she does have a few phrases she likes to say! Such as “bubber nigh nigh?” “Dada bye?” “Mine baba!” Those types of phrases! She can answer questions, and understands pretty much everything we say to her! She is so much better at communicating her wants and needs and is very good at letting us know what she does not like! No might be her current favorite word, second to “MINE!!” That is.

We have been using an electrical simulation machine on her right arm and it has increased her awareness and feeling so much. She can now tell where the pain is coming from and assist righty in escaping said pain! This is a huge improvement to her sensation and awareness. We use it twice a week during OT as well as on our “off” days at home. The goal is to have her use “righty” functionally while hooked up to the Estem and so far Colbey Raye has responded well to it! She eats Cheetos by holding the cheeto (we place it in righty) and using lefty to pick up righty and guid it to her mouth. Getting righty to become a helper hand is a work in progress, but we are really hopeful that Colbey Raye will be able to use it functionally in time, but most likely just for slight assistance and a little support. Only time will tell with this.

With Colbey Raye feeling so much better I finally feel a sense of ease settling in. The ability to relax a little more, I’m not carrying the monitor on my person at all times, and sleeping is becoming easier. I say that and it’s 1am and I’m still up… I’m trying to get back to my usual sleeping habits, but Colbey is still restless during the night off and on so I’m still struggling there. It’s been a hard adjustment for me. I’m okay, I’m confused, trying to sort out what this all means for the future and our hopes of a med free/seizure free life for Colbey Raye. After a year of being seizure free this past weeks event hit me harder then I imagined it would. In the moment, while she seized, I knew exactly what to do. It’s ingrained in me, I’ll never forget how to handle that situation in the moment! I can do that, it almost felt like second nature, I didn’t hesitate I was “prepared.” What I wasn’t prepared for was the effects that minute long seizure would have on me after the fact! I feel a little broken inside, a little bit confused, maybe scared? Possibly angry, and sad, but also hopeful. Hopeful it was just fever related and that the medication change isn’t a factor. I’ve cried inside so many times but I haven’t shed a tear. I want to break down, let out a good cry and feel better! But it won’t come, the tears won’t flow and when asked how I’m doing my mind is saying “I’m not handling it well” but my mouth says “I’m good!” Followed by a smile. When I write I feel comfortable, safe and able to let the inside come out more easily. I’m the strong one, I keep it together even when I’d rather not. I can usually pinpoint my emotions and I cannot. A battle within that I cannot seem to overcome. Through out Colbey Rayes little life I’ve felt so many emotions! But this one, this one is different, and I do not know why.