Monthly Archives: January 2014

4 weeks post op

Today marks the 4th week since Colbey Raye’s brain resection. It is amazing how time can slip away from us and the feelings from weeks ago still feel near and dear as if they were yesterday. The way I felt when we left her that morning, the way I felt when we first saw her that afternoon, will forever stay with me. She’s beyond amazing, her recovery has been wonderful in regards to healing, and she’s back to her smily go lucky self, and even has learned a few new “tricks,” such as screaming until she receives what she wants, spinning in a circle while sitting on her bottom, picking up food with her thumb and pointer finger and is back to clapping again! She now recognizes that I’m her mommy and when she’s tired or upset she wants me! She is still overly content with anyone willing to snuggle her but if she’s feeling hungry or is over tired she wants mommy or daddy loves. Austyn Jayne is such a sweet big sister, she wants to read to Colbey Raye, and snuggle with her and play with her, but Austyn Jayne does not enjoy how much Colbey Raye pulls hair! They have a big disagreement there ๐Ÿ˜‹, Colbey Raye thinks it’s so fun, Austyn Jayne would beg to differ! Colbey Raye has discovered that finger food is amazing! She ate more this weekend than ever and loved every bite of it :), though she still wants to nurse ALL the time, especially during the night. But I try not to complain, I get snuggles, and loves and even at 2 am I can find pure joy in those snuggles. I wouldn’t mind a stretch of sleep lasting longer than 3 hours though :).
As far is the seizures go, we raised the zonisomide to help control the seizures and since then Colbey Raye has now been seizure free for 10 days! We are truly feeling blessed for this window, and are hopeful it will continue to last a while longer. Last week on Tuesday Colbey Raye received another MRI and on Wednesday we met with Dr. Ojemann to go over the results and discus what our next steps in better seizure control will be. Her MRI showed no extra fluid or abnormal swelling, all good news, but this also leads them to believe the seizures she has been having are not post surgery related and that she will most likely need to undergo a second surgery. Dr. Ojemann feels this period of time is another honeymoon phase so we are working towards obtaining all the needed information to plan for the next course of action. Tomorrow we head to Seattle for a prolonged EEG, and hopefully this will relay some of the information needed to help map out our next steps. The goal is to have as much information as possible before a surgery is decided upon as the best next option, again.
One step at a time, one moment at a time, trying not to blink, these days are treasures and before you know it the seconds pass and tomorrow becomes yesterday.

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Precious girl

Sitting here holding my sweet baby it is hard not to think about what the future holds for her. What will she get to do, what will she miss out on etc… Today we went to the park and Colbey Raye got to enjoy swinging for the first time! She just loved it :).

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She is just now strong enough again to hold herself steady while rocking, small pushes brought the biggest smiles to her little face! She is so full of joy it is incredible! She is strong and I know she will work extra hard to try and keep up with her wild busy big sister as she continues to grow, And I know Austyn Jayne will slow down to help teach Colbey Raye how to do these things. Colbey Raye will definitely be teaching Austyn Jayne patients, that is for sure ๐Ÿ˜Š.

Today was a good day for Colbey Raye! She hasn’t had any seizures today that we’ve seen so far, the first day without a seizure in over a week. On top of the daily seizures she has been experiencing suspicious twitching spells that are in question. These “twitching spells” show signs that suggest possible seizure activity is going on, even though she is not having a visible true seizure these spells are very concerning to me as well as to Colbey Raye’s doctors. Another EEG has been ordered to see if we can gain more knowledge about these sporadic spells. They have been much less frequent the last 2 days, but still come and go occasionally.

Tuesday Colbey Raye gets another MRI and Wednesday we meet with Dr. Ojemann again and will go over the MRI results. We are still between a rock and a hard place as Colbey Raye’s doctor stated on Friday, our next steps are unknown right now and we are all questioning what should happen now. Yet again time will tell, and test results will hopefully help point us in the right direction. Controlling the seizures is still first priority, the question is how? A fourth medication, rufinamide (Banzel), is being considered, a second surgery has been mentioned, and we listen, consider, ponder all the options we are presented with, pros, cons, and try to decide what is best for our little girl. It is hard being the one to choose the fate of someone so small, helpless and precious, she is truly precious. Our time with her is precious, every smile, giggle, even her cry. I try to soak it all up, I kiss her and love on her constantly, I wish I could just fold her up and keep her safe in my pocket, protect her until this storm passes. But God has a plan greater than I can imagine, she’s his little one too, and He has blessed and entrusted me with her. This storm will pass,
2 Corinthians 4: 17-18
“For our present troubles are small and wonโ€™t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever. So we donโ€™t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.โ€

Two weeks post op

Colbey Raye had her lobectomy 2 weeks ago today. She is healing amazingly well and the swelling is pretty much gone! I took Colbey Raye for her her first follow up appointment today and they are really please with how well the wound has healed and with how close to base line Colbey Raye is already. She is still a little wobbly when sitting up but she has started to catch herself before falling over again. She’s rolling over and trying to scoot on her belly around the floor here and there. We have seen some improvement in her right arm coordination already. She’s back to being happy, full of smiles, joy and snuggles! It was hard seeing the grumpy side of her when we have really only seen her joyful and content side. We have truly been blessed with one joyful little girl! On the down side of things Colbey Raye is still seizing daily, she’s had 5 seizures today as well as 5 yesterday. Dr. Ojemann wants to get another MRI done ASAP to try and see what is going on. Both Colbey Rayes neurology team and neurosurgery team are working closely to try and come up with a plan. We are still not sure what this plan will look like, and there is still time involved before we can piece this next plan together. Lots of talk about a fourth medication to hold her over until another option is ready. Also her platelet count is still really high and has not gone down at all since Friday. The hematologist is a little more concerned but still think she is okay to be at home and we will get more labs drawn in a few days. If the count still has not gone down then Colbey Raye may have to be admitted to do further testing. Finger crossed that won’t happen! Even with all these bumps and hills and mountains to climb we are greatly enjoying the love this little mess gives! Her smiles are contagious!

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ER visit to overnight observation

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Upon arrival at the ER yesterday, around 4, Colbey Raye had another seizure. I never wish her to have seizures but when we are in the ED for seizure frequency it is always nice for the doctors to be able to witness at least one before they start concocting a plan. The ED fellow did witness it and that helped things move more quickly at first. Soon after that seizure doctor Ko ordered a Phenobarbital bolus and I think that helped break the trend for the night. First we got blood draws to check her medication levels and to look at her liver function, then took her to imaging for a CAT scan. They took a nasal swab to look for infection and considered a lumbar puncture but decided against it because she has not had a fever in over 48 hours. The CAT scan came back clean, Colbey Raye did test positive for the rhino (common cold) virus again, and her platelet count is abnormally high. For now they are just keeping an eye on that and thinking it has to do with her having a virus. All of her medication levels came back high, son there really is no room to adjust the doses at this time. Also her liver function test came back fairly normal so that is a plus and gives us more room to play with different types of medications if needed.
Both teams of doctors have slightly different outlooks on the situation at hand. Neurosurgery believes to think it is a combo between the cold and still being post op. They do not seem to overly concerned and feel that this surgery still has high hopes of being as affective as originally thought and this is just part of the healing process. but our neurologist is a bit more skeptical.. Both think the cold has a lot to do with it, but our neurologist is worried the surgery isn’t going to be as effective as we wanted and we might need to look into future options and start the process of looking into a second surgery, and looking at medications to use until a possible second surgery is decided upon. Dr Ko is not satisfied with Colbey Raye having so many seizures due to a cold and wants her to be on enough medications that she can be seizure free even with a mild cold. This has always been a challenge to accomplish with Colbey and I believe that is why Dr. Ko and Dr. Kuratani are suspicious as to the true reasons behind this outbreak.
Getting admitted was a rough round of events last night. We arrived in the ER at 4, and weren’t admitted to a room until 12:45. Also there was a problem with the pharmacies delivery of Colbey Rayes anti epileptics, she didn’t receive them until 1:00am. I was quit frustrated because she takes them at 9pm and it is pretty critical that she receives them fairly close to on time every day. I asked 4 different times when they would be here and no one really knew. Once Colbey Raye got her meds I was hoping she could finally go to sleep, but then we needed to do another blood draw to recheck her platelet count, and IV therapy did not come in until 2:20am. The poor little miss was exhausted and very very unhappy! For some reason they couldn’t draw any blood, so at 3 they had to take her to another room to have someone else try, finally back at 3:30am she was allowed to fall asleep! She has pretty much been sleeping since then, waking up twice to nurse and for her morning medicine. She had another seizure around 10:45am, but that is the first one since the one in the ER last night. She has been very happy though, which is very refreshing :). It does make these stays a lot more pleasant when she is giving all the nurses and doctors countless smiles :). Even with all the seizures and mild cold she is starting to ack more herself! Giggles and smiles all day! She is also using her right hand even better than prior to surgery. This was one of our biggest post op hopes. Because of the seizures she has started to use it less again but once they slow down hopefully she will just continue to improve rapidly! On the down side it does look as though her right sided vision is slightly impaired. Time will tell but it has been more obvious the last few days. One day at a time is a trend around the smith house right now! Seizures bring on a sense of constant worry, whether it is in the back of your brain lingering or weighing in the front, it’s there, always. During periods where Colbey Raye is doing well and haas few days seizure free things begin to go smoothly with nightly routines and the house stays clean and chores done, but with each seizure comes a tornado that spins through the house hitting every room causing chaos, I don’t understand how it happens but it does! It is as if everything freezes during the seizure and once it’s over I turn around and there are a bazillion things to do but now I’m keeping an extra close eye on Colbey Raye and don’t wonder to far our of hearing or sight range, making it hard to accomplish the daily tasks at hand. The baby monitor camera begins to room hop as Colbey Raye does, and the monitor sits next to me. But each task I do takes a little longer when breaking to watch closely at Colbey Rayes facial expressions and arm movements. The road is windy, bumpy and long but it’s a road worth traveling! We love you Colbey Raye and you teach us more and more each day. Stay strong little miss, and you will move mountains! โค๏ธ

A hard day

Just a quick little update, josh and I are taking Colbey Raye back to Children’s today for an evaluation.. She’s had 15 seizures in the last 24 hours and they do not seem to be slowing down. We are not sure what all this mean for Colbey Raye yet, but are hoping to have some sort if idea on what’s to happen next after we see the doctors this afternoon. Maybe just a bump in the road to recover? Or a reason for further testing… Time will tell.

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Sweet Pheobe did not leave Colbey Raye’s side for 2 hours after her first seizure yesterday. They are best little buddies.

One day at a time

Since our arrival home on Saturday afternoon Colbey Raye has been having a very rough time. She has had a fever off and on since Sunday night, has thrown up a few more times, has been very lethargic and sleepy during the day, has had a very upset tummy and has not been able to poop since Sunday night. Things that usually calm her have been aggravating her, and she has been up crying most of the nights because she’s uncomfortable or hurting. But she might be over the hump and taking a turn for the best?! Today has been such an improvement it is amazing! She has been smiling, she’s been blowing raspberries and even giggling a little bit. She’s finally nursing really well and she had apple sauce for lunch and carrots for dinner! She’s back to taking her medications well too. She still whines and cries when we pick her up, and when she coughs, but is slowly begging to be more comfortable each day. I can see the happy girl coming out again and I cannot express how excited I am about that!
Through all of this Austyn Jayne has done so great and been so understanding, but after this post operation hospital stay Austyn Jayne has had a harder time adjusting. She’s been very clingy, needy and fighting for josh and my attention. She wants to be held all the time and has been extra emotional. But even still she is so sweet and helpful with Colbey Raye! She gets very upset when Colbey Raye cries and just wants to help her feel better. She gives her binkies, blankets, toys, whatever she can find that she thinks will help Colbey Raye feel better. Tonight Colbey Raye projectile vomited and Austyn Jayne instantly began to cry. At first we though it was because Colbey Raye got a little on Austyn Jaynes pants, but after we got things all cleaned up I talked to Austyn Jayne about why she cried and she said “Colbey Raye threw up all over, it so sad mommy, but she will be better now?” And she constantly asks if Colbey Raye is okay, and tells me that she has an owie on her head to make her all better and not go to the doctor all the time any more. She’s very concerned about her sisters comfort and loves her so much. I’m amazed by her strength and compassion and true love for this little sister of hers. It’s a tough job being a two year old big sister! Especially a two year old who has had to go without being home with her mommy, daddy and baby sister weeks at a time. I’m so proud of our big little lady!
It is so hard watching you sweet innocent baby go through so much in such a short period time. Though all of the past hospitalizations, through all the seizures, and pain she has always managed to put on a smile, a little reminder to me that everything is going to be okay no matter the outcome, but after this surgery those smiles were gone and I started to feel lost without them. Colbey Raye has been a true angel baby, always happy, smiling, fun, snuggly, loving, never fussy or upset, hardly ever (truly very rarely) did she ever cry, but after surgery the opposite was true. She cried and I couldn’t console her. She whimpered when id pick her up, and flinched when I tried to touch her. Heart breaking moments. These past few weeks have been so exhausting, little to no sleep, and after these few days home I couldn’t help but worry that the constant smiles we used to get from our little Coco-be were something of the past, but today has reassured me that, just like most things, it just takes a little time and patients and things will begin to heal, grow and Colbey Raye will slowly begging to smile at the beauty and joys of life again. She’s been through more in 8 months than any person should go through in a lifetime and still 9 days after brain surgery she can calm an aching heart and easy a worried mind. She’s a true blessing and a true inspiration. Her happy attitude today has helped lift my spirits so much! We just need to take it one day at a time, and slow down to enjoy all the little priceless moments that happen in the midst of all the pain, exhaustion and chaos.

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Home

Today has been another day full of ups and downs, I feel this could be a new trend for the next week or so. Colbey Raye was discharged today and we were very excited to be bringing her home, but it has been a harder transition than usual. She was very uncomfortable in the car, usually she loves car rides and sleeps well but today was far from normal. The poor girl just could not get comfortable despite all our efforts in adjusting her position, there isn’t much wiggle room in a car seat, and her head just couldn’t rest they way she wanted. Finally we made it home around 3:45 to a spotless clean house! Thank you Gama and Papa! And a cleaned yard, think you uncle JJ and Carcar :). Colbey Raye was not as excited as I was about the cleanliness of the house and had a really hard time this afternoon. She was very fussy and I could tell she was uncomfortable, something was bugging her. She napped but woke up just as upset, I can’t even imagine this discomfort she feels ๐Ÿ˜”. After her evening meds Colbey Raye projectile vomited all over me, herself, the couch and Josh, twice! Quickly we were on the phone with the neurosurgery on call doctor, We decided to give her a bath and try to slowly give the meds again after about 20 minutes. While trying a second time to give her the Tylenol she began to vomit every where again. I had no idea her little tummy could hold so much! Back on the phone with the doctor and he agreed to let us monitor her for an hour and if she calmed down we could try again with the meds. It is still very crucial that Colbey Raye doesn’t miss any if her anti seizure medications. Thankfully she calmed down, took her medicines and is sound asleep, hopefully for the rest of the night! So very thankful she has calmed down, I would have been awfully sad to pack back up and head back to Seattle… Praying for a rest full first night back gone for miss Colbey Raye, and for josh and I as well.

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