Monthly Archives: May 2014

Feeding tube placed

We have had a very quiet mellow day today. Colbey Raye has been extremely sleepy, and lethargic. OT came in and went out, speech came in and went out, the rehab doctor came and went out, Colbey Raye was not in the mood to interact with any one and they respected her wishes and let her be. It’s being a huge struggle to get her to take her meds and she has not received any pain medication from 8am until 4pm because she has been throwing up after the medications are given. She did eat yogurt and oranges for breakfast but threw them up when we tried to give her the 11am dose of pain meds. She has not eaten anything since. Due to her low interest in food today and complete refusal of liquids it’s been decided that a feeding tube is needed to get her back on track to a heathy calorie intake. She had her feeding tube placed this afternoon and is now getting her first round of supplements. I was feeling a little sad as this is a step backwards, but I’ve realized this could be just the thing miss Raye needs to get her energy and spunk back! I feel more energetic and lively with good food in my belly, I bet she will too!
It has just been Colbey Raye and I today, we’ve spent most of the day snuggled up together now that her EVD is out and she is loving the closeness as much as I am! Colbey really enjoyed the head bath I gave her today and she smells so fresh, her hair feel much better now too, no more goop and grime. Her arm and leg movement has still not improved, she was showing signs of plasticity in her right foot yesterday but it seems to be better today! We are putting a lot of sensory feeling, vibrations, rubs and tickles to her right side in hopes to “wake it up” a bit. She is feeling the actions, and will giggle when I pinch her right knee cap and tickle the bottom of her foot! She really enjoys when I take her right hand and rub it in her hair, she is a hair girl and used to pull and rub her hair with her right hand when she was tired. Now she has resorted to pulling her hair with her left hand but gets caught between the decision of holding her wubbanub or pulling her hair! Oh the tough choices one has to make at the age of 1! 😋
We are still trying to figure out if impatient rehab will be beneficial or not for Colbey Raye. So far she has not been up for therapy visits, and she just cries when they try to get her to do anything at all. We are giving it the weekend to see if Colbey Raye will cheer up a little after a few more days to feel better, but the rehab doctor we have been speaking to and myself agree that intensive outpatient therapy may be the better option for Colbey Raye anyways. Colbey Raye gets tired quickly and she likes her own schedule and does not want to be manipulated into doing things (back to the independent side of Colbey Raye) so it has been a challenge to get the therapist in to work with her at a good time. A good time for Colbey Raye to be cooperative that is! We will be waiting out the weekend to see how she improves and will then make a rehab decision. Colbey Raye is also getting a video swallow study done Monday and that will determine when Colbey Raye can get rid of the feeding tube. Another weekend to improve and rest in the hospital, missing home but time to heal is still much needed!

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One week Post Op

So far a wonderful start to our morning! Her EVD is scheduled to come out later this afternoon if all continues to go well. The leaking, caused by a pretty hard tug Colbey Raye gave it, from the entrance sight was very very minimal through the night after a stitch was placed to tighten the seal and the swelling on her temple is not any more taught than it was last night. All good things, and hopeful for Colbey Raye to be successful in avoiding the placement of a permanent shunt! Woo hoo! We learnt last night that the true overall percentage of receiving a shunt after a hemispherectomy is 40%! We were originally told that Colbey Raye had only a 10% chance of needing a shunt, and this is because Dr. Ojemann is so patient in his attempt to avoid placing shunts that time pays off and his shunt percentage is only 10%. So blessed to have a patient diligent surgeon working with out baby, as I’ve heard shunts can be a bit of a hassle.
Yesterday Colbey Raye had a slump in her desire to eat and did not eat until dinner time. She still was not drinking any fluids on her own so she’s been on IV fluids this whole time. She had been coughing and choking on her meds a lot and a swallow study was ordered. Not much was determined after the study yesterday so another one was scheduled for this morning at 9. This morning Colbey Raye woke up happy, hungry and ate her oatmeal without any problems! Speech therapy was back at 9am to watch meds, and we are now using a binki trainer to help her take her medications more easily, it worked like a charm and Colbey Raye only had one cough while take all 7 meds! Speech therapy watched her eat some yogurt, Colbey Raye did great, no problems there, and even ate some puffs and chewed them up like a champ. Now for drinking, this is being a little harder to get Colbey Raye to cooperate for. She’s enjoying playing the “throw my cup and laugh historically” game and was not drinking still, so speech therapy brought in a few different bottles. Finally one small enough for Colbey Raye to hold herself (as she is refusing any help from me or anyone else, miss independent…) and she finally, after much coaxing, began to drink the juice from the bottle! She did okay, she coughed and choked a few times, so now we have to watch her closely to see how she is drinking and may need to start thickening her fluids a little. Not to big of a deal at this point, but it could take some time before Colbey Raye handles thin liquids well like she used to.
As for miss Rayes little personality? Last night she was full of giggles, smiles and she was fighting for our attention 😊. She was a little irritable last night but we had cut back on pain meds so it could have been due to that. Since we have been up this morning Colbey Raye has been nothing but smiles, giggles, one armed claps, and she is all about the peekaboo games and throwing toys on the floor so mommy gets them games! We read a few books together and the constant smile on her face was the most adorable thing I’ve seen! She loved listening to the story and even took interest in looking at the pictures. What a happy special girl she is. She is still not moving her right side much at all, but is less irritable when I tough it. She enjoyed it when I played “this little piggy” with her toes and even moved her toes a little, but not her leg. She hasn’t moved her fingers yet, but will lift her right arm a little bit when she’s in pain. She is turning her head to the right and trying hard to see what is going on over there while greeting people when they come in the door now. She is sleeping good at night, and is back to sleep now taking a morning nap. We are feeling so blessed by her spirits and her improvement today, such a better morning compared to yesterday! We still do not have an estimated discharge date, but with her spirits and determination I’m hopeful that we won’t have to stay to far into next week, praying for that at least! As many doctors, nurses and therapists have stated, this is a marathon not a sprint, and Colbey Raye is one determined little girl who will cross that finish line in due time!

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Eventful day

Today has been a day of ups and downs! It started off good, Colbey Raye slept well through the night last night, and woke up in a good and HUNGRY mood. She finally are something substantial, and had a whole bowl of oatmeal and part of a muffin. She took her medicine well this morning and now that we have her on a very regular pain medication routine she’s been even happier and more content than before.
OT and PT visited miss Raye today and now she has a hand splint to help keep her arm and hand in an natural position so the she does not over stretch the muscles while she is not using her hand. We have more stretches and exercises to do to stimulate both arm and leg, neither one is moving much yet. We had a handful of visitors today and Colbey Raye has been really enjoying seeing the familiar faces! She’s been a bit grumpy towards her nurses, but when Nana Sue came in Colbey Raye was all eyes and smiles! Other family came too and Colbey Raye played some pikaboo and enjoyed watching all the action. She chose to skip napping while we had company and in result to a long hard snoring open mouth nap afterwards 😄.
She ate her meatballs and rice for lunch well and wanted to feed herself puffs. We have been working with Colbey Raye to look past midline and she has begun to do so today! She will turn her eyes towards the right and then being them back to the left quickly, it’s a step in the right direction! She has also started to turn her head in the direction she is wanting to see! This is a huge improvement from yesterday.
Dinner came, Colbey Raye scarfed her ravioli and proceeded to take another nap. Meds came, she took those but fought it, and then the events of the night began. Miss Raye decided dinner did not settle well and she threw up EVERYTHING all over. She was covered in vomit and so was her bed, despite our efforts to contain the mess, it was everywhere. Exhausted from this event Colbey Raye cried and snuggled, I think she threw up on purpose so that I would get to hold her for a few minutes while her sheets were changes 😋. Next as Josh and I prepared for bed, I thought Colbey Raye was headed to dream land when she started to cry out in a painful way, I looked over and she had her drain tube in hand and was repeatedly yanking on it and crying out in discomfort. Now bloody and oozing her doctors decided to lower her drain back down to it’s original spot. This could potentially cause the drain to stay in another day longer, but hopefully she can still get rid of it tomorrow, fingers crossed there. Now she has to wear a glove on her left hand for the night to ensure that there will be no more tugging on things that should not be yanked on.
I think tonight will be another night of good rest for Colbey Raye, and hopefully that means a good nights rest for mommy and daddy too! We are all tired and ready for bed! In fact miss Raye is already fast asleep. Off to bed we go. Praying tomorrow is another day filled with even more improvements, and less/no setback events.

One Year Ago…

It is crazy, hard, emotional and a little unbelievable to think that one year ago exactly we were rushing our sweet girl to the ER in a state of confusion and panic. One year ago we were spending Memorial Day weekend at our family cabin enjoying the time together playing games, enjoying good food, and just hanging out. Our sweet Colbey Raye was just 6 weeks old and she was as mellow and sweet and sleepy as ever. I will never forget the way I felt that Sunday after my brother noticed the odd blinking and peculiar face Colbey Raye was making on the way to church. I’d seen this same face just a few days before, thinking to myself that was odd but tried to brush it off as we had vacation plans for the weekend. But after my brother brought it to my attention I could no longer ignore the mothers instinct and for the rest of the day my mind was completely distracted and my phone was on YouTube and Google trying to decide if these episodes were, what I though to be, seizures. I truly believed they were!! I video taped an episode that day and had convinced myself she was seizing. A few family members thought I may be right, but it was after all a holiday weekend and who wants to go sit in the ER for something that might be nothing right? So they advised me to wait until morning to see if these behaviors stopped. Others thought I was over reacting, so I let the day continue, my mind distracted, and we cut our vacation a day short and headed home Sunday afternoon, the weather was quite crummy anyways. My sister and I had planned to go see “The Great Gatsby” and because Colbey Raye was just 6 weeks old I drug her along in the front pack while Josh stayed home with Austyn Jayne. The first 20 minutes of the movie I was still completely distracted and panicked about what Colbey Raye had done earlier that day. I kept watching her, staring at her, and after a little while she began to fuss, it was time to nurse! She was nursing just fine and all of the sudden she began to shake, her body stiffened and she projectile vomited all over me and the floor, a few times. I couldn’t control her shaking and I knew in that moment I was taking her to the hospital, I no longer cared what anyone else thought, I knew something was wrong. I called Josh, he took Austyn Jayne to my parents and my sister and I left the theater. I called the on call nurse and while waiting to hear back Josh, now holding Colbey Raye, saw and felt what I had been seeing and he began to panic. 11:30 Sunday night, the day before Memorial Day we drove to our local Hospital for what would become one of the longest, life changing weeks of our life. And the beginning of a journey we never knew we were strong enough to be on.
In the waiting room another seizure, and I feared the doctors and nurses wouldn’t see one and would just send us home assuming I was that “over reacting first time mom.” But I wasn’t, I’m not and over reactor, and this wasn’t my first baby. After about a half hour in the ER, the nurse hadn’t witnessed anything out of the ordinary and the doctor came in with the intention to send us home. In the middle of her “we haven’t noticed anything abnormal speech” I felt Colbey Raye tens up, and I interrupted the doctor saying “she is going to have a seizure now.” After the 5 minute seizure ended the doctor had shear panic written all over her face. No poker face, no attempt to hide her worry, she excused herself from our room saying she needed to make a call. Over the next 8 hours in the ER tests were run, anti epileptic were started, imaging, more seizures etc… And no answers. Finally we were admitted to a room around 9am, the pediatric floor at our hospital had been closed due to no patients at the time. We spent the next 24 hours there, more tests, higher doses of meds and still constant seizing. I hadn’t slept in over 48 hours and I still remember those days as if they were yesterday. Can one ever forget the feeling of helplessness?
We were transferred to Seattle children’s hospital Tuesday morning and would remain there for an entire week trying to control the seizures. Her EEGs were abnormal, and by the grace of God, and a diligent MRI reader, an abnormal area was discovered on her brain. She was diagnosed with Focal Cortical Dysplasia and when the neurologist came in to explain what it was he started with the best case and ended with the worst case scenarios. he began by explaining that these thickened areas were causing miscommunications and therefore causing the seizures. His hope and best case scenario was that we would be able to control her seizures with 1 or 2 anti epileptics and that she would be able to be seizure free after that. His worst case scenario, one he made very clear was not going to happen, but he wanted to inform us that in some “rare” cases brain surgery was possible when children were getting to be on 3, 4 medications and still seizing. He made it “clear” that if for some strange reason Colbey Raye would need to under go a surgery like that it would be after she was a year or two of age and told us not to worry or put much thought into it as he was very confident she would be okay after we got her onto the right mix of medications. Now, just one year later Colbey Raye has under gone 2 brain surgery, she hasn’t just received a resection but a hemispherectomy, she is on not 1, not 2 but 4 very high doses of anti epileptics and her seizure were not controlled even when on all these medications, and she is just 13 months old. We were just as hopeful as her first neurologist was in the beginning, but after adding medication after medication and still having seizures almost daily we knew surgery was needed. After pushing and pushing, getting more and more neurologists to check on her we finally got her approved for her original surgery. Just 2 short months after surgery number 1 the seizures returned and more medication would not control the seizures so surgery number 2 was suggested and much easier to be approved for. Having the surgeon on our side made convincing our team of neurologist much easier. So here we are, exactly one year after her seizures began, 2 surgeries down, and 4 anti epileptics being used, we are hopeful and excited to see what the future holds for miss Colbey Raye. We know there are no guarantees, we know the possibility of seizures to still return is there, but we are hopeful still, and so thankful to be where we are with the wonderful team of doctors we have on our side, wanting what is best for our sweet girl and fighting so hard to give her the best she can have.
A few photos from her first hospital stay.

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Update on day 3-4:
Colbey Raye is doing really well most of the time. She’s been pretty content, with some out breaks of irritation and discomfort, but she is handling it all very well! She has begun to associate to much movement with pain so she has been staying very still, just looking around with her eyes to see what is happening around her. She’s very sore and I can tell her head is hurting a lot, she keeps pushing on it and pulling her hair but she is being very mellow about it. She cries out now and again but is quiet most of the time. She still isn’t smiling, or talking, and has barely moved her right arm and is not moving her left leg. Shes taking all of her medications orally except her steroids, those are given via IV, and because she is not drinking from her sippy any more she is getting fluids through IV as well. She still does not have much of an appetite, her diet consisted of Apple sauce and pop sickles! She has had a hard morning again, irritable, in pain and has vomited twice. Because of the vomiting Dr. Ojemann decided not to remove the intracranial drain today, but maybe tomorrow or Wednesday depending on how she does.
Josh and I are hanging in there, between puzzles and red boxes we are trying to keep ourselves entertained and sane 😋, taking turn making coffee runs and getting out to stretch our legs. We did have a visit from my family and from Austyn Jayne yesterday! It was a fun time and Colbey Raye was happy to see her big sister 😊. I got to go get lunch with her and the family while Josh stayed with Colbey Raye. It was wonderful seeing them all especially our Little Lady. Austyn Jayne was a little clingy and emotional but she has been doing really good for my parents and is happy and enjoying her time with the aunts, uncles and her grandparents. Another highlight of the day yesterday, I got to hold miss Raye for over a half hour! It was heaven for me and I think Colbey Raye enjoyed it too, she fell asleep and seemed to be comfy all snuggled up in mommies arms!
A huge thank you to all those who have helped during the last few days, we appreciate everything so much!

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A very content day ❤️

Today has been a wonderful day for Colbey Raye. As wonderful of a day as anyone could have after undergoing one of the most invasive surgery there is, just over 24 hours ago. She is really doing great and everyone, doctors, nurses, Josh and I are all thrilled with how she has acted so far today.
Once we got her pain to a tolerable level her night went very smoothly, she woke up every so often and would just casually look at us, then doze back off to sleep. She took all of her anti seizure medication orally and without any problems, and is now taking all pain medication orally as well! This morning she drank some juice and ate a small amount of yogurt, happy she is getting something in her belly. Her fever is gone and she seems to be tolerating the pain well, and was only given Tylenol during the night and this morning. I was under the impression that she would be receiving morphine regularly though the night, but I was wrong, and she had not had any morphine since yesterday at 6pm! I was a little unhappy that she was not being given more pain medication, but that’s now resolved.
Colbey Raye has been doing so well we were able to be moved out of the PICU around 12:30 and are all settled into our new cozy room in the surgical unit! Colbey Raye had spent most of the afternoon awake and content just enjoying watching and listening to me, josh and her auntie Mckinsey talking around her. She started acting a bit uncomfortable, very shaky and fidgety a little later on and was having a difficult time napping so I had the nurse give her some oxycodone and now she’s resting well again! She is still not moving her fingers, leg, and is barely moving her toes if we tickle her feet, but time and stimulation will help. Dr. Ojemann said not to expect much movement out of the leg, arm or hand for a few weeks BUT She’s been moving her right arm, just a tiny bit when she is in pain, but non the less it is still movement and Dr. Ojemann is happily surprised that she has already moved her arm a little.
The Cerebrospinal fluid is clearing up nicely, and the amount of blood that is mixed in is already less than expected. Finger crossed that this means she will be able to have the tube removed sooner than later so we can hold her again! For the time being she is on strict bed rest until the tube is removed, according to today’s nurse, but I’m determined to hold her so I will be asking again after shift change to snuggle my sweet miss Colbey Raye! OT has already come in to evaluate Colbey Raye and already wants us working on stimulating her right leg and arm by touching and rubbing them, and has suggested we spend more time taking to her on her right side in hopes that she will begin to try and look that direction. For now she will only keep her head turned to the left, Dr. Ojemann said this is common as she can not see what is on her left, he called it right sided neglect, the lack of feeling, movement and vision on the right side can cause people to forget about and neglect what is on that side.
The swelling is starting to increase and I feel that by tomorrow the bruising and swollen eye will be more apparent, but so far Colbey Raye is looking much better, and is much more content than after her last surgery! She is consolable, only requesting close hugs and snuggles every once in a while and is so sweet and content with her blanket, wubbanub and substitute kitty. Praying this attitude continues through the night and the rest of our stay. She’s up for visitors now that we are out of the PICU and has been happy to see new and familiar faces already today! Josh and I both are still running on very few hours of sleep but we now have a bed, and if Colbey Raye stays content I see us both being able to snag a few more hours of sleep tonight. As for now coffee for me and monsters for Josh as we pass the time working on a 1000pc jigsaw puzzle with auntie Mouse!

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Surgery round two

Today was the big day we have been trying to prepare for these past few weeks. I’m quite exhausted from all the adrenalin rushes, stress, little sleep involved with preparing and thinking about all that needed to get done and thinking about what this surgery means for our sweet girl so this post may be shorter and to the point!
We woke miss Raye up at 5:10am to have her take her medication before surgery. She started off all smiles, but by the time we checked in for surgery at 6:15am she was hungry and tired. We held her and snuggled for the next 45 minutes and she finally fell back asleep!

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She slept then until we took her back with the anesthesia team so we could be with her as the sent her off to sleep. At 7:30am Josh and I left our sleeping angel and began the dreaded waiting process. We were told to expect a page around 8:30am that surgery was starting, but we did not receive the call until 10:15am. Surgery began about 10 and things were just getting going! We had some lunch, walked around, and were enjoying the sun and time together trying to keep our minds busy and not focus to hard on the events taking place. All the while constantly praying for a safe successful surgery. We were successful in keeping ourselves entertained as I missed the first page!! I did not expect such a quick call, and such a fast surgery but it was done! And at 12:45 we rushed back to the ICU to meet with Dr. Ojemann and hear how she was doing. Josh beat me there and by the time I made it (literally a minute maybe two after Josh) Dr. O was already gone and running to another appointment. A little sad, I listened to all he had told Josh, which wasn’t much but he promised to come back soon to inform me/us more about what went on. Around 2pm he was back and explained more in depth what he accomplished and what he saw. He successfully completed the functional hemispherectomy, removing a lot of the frontal and parietal lobes, some from other areas and then disconnecting the rest. There were many very abnormal areas of her brain, most severely abnormal was the motor cortex and that all was removed. Dr. Ojemann said “if I were to have tried to save some of her motor function I can guarantee she would continue to have seizures the area was so abnormal.” He said this in hopes to reassure us that this aggressive full hemispherectomy was the way to go, we agree with him 100%!
Finally around 2:30-3pm we were able to go into the PICU to stay with our girl! She looked very good, peaceful and happy for the next little while, but her peaceful face changed as she woke up.

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Her little left are was shaking rapidly and she was just crying out in pain, she was very uncomfortable. Since then we have been giving her morphine more regularly as well as Tylenol to help keep the pain, and her fever down. Fevers are to be expected after this surgery as well as pain. She is going to be uncomfortable and grumpy for a few days, but she looks very good for what she had been through today! She has a drain for the fluid in her brain, hopefully this will be able to come out in the next few days. She has not moved her right arm or leg at all yet, and Dr. Ojemann said she probably won’t for a while. We are keeping a close eye on her, she is getting a lot of rest and is clingy tight to her binky, even though she’s not much into sucking on it as of yet. She will be getting her anti epileptics around 9, and we are really hoping she will be up for taking them orally, otherwise a feeding tube will have to be placed in order to get them into her system. All in all we are feeling hopeful, blessed and anxious for the days to come. Miracles do happen and we witnessed one today. This journey is just beginning and a “new normal” is once again in our future. The Smith family thanks all those who have blessed Colbey Raye and our family with prayers, support, and good thoughts.

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In preparation for surgery number two. Thurs May 22nd

Both girls are sleeping in! Finally found my opportunity to get this blog finished! Fingers crossed I’m done before they wake 😋.
This week brings back A lot of memories. This week one year ago I started to notice changes in Colbey Raye’s behavior. At about 4 weeks old Colbey Raye had started to sleep less and interact more, she began making the change from a “newborn” to an infant and she seemed to be right on track! But just a week later at 5 weeks old I noticed an increase in her sleeping habits, and a huge increase at that. She was very unstable and still needed a lot of extra head support and she began projectile vomiting at least once a day if not 2 or 3 times each day. I knew (mothers intuition maybe) that something was different about Colbey Raye and these behaviors were not normal. But I tried to brush the excess sleeping off as a growth spurt and the vomiting, well maybe she had reflux that was now just a billion times worse?! And the wobbly head and floppy body? Well she was still only 5 weeks old maybe she’s just a rag doll like baby? I asked my cousin who’s baby is just 2 weeks older than Colbey Raye what Charlee was able to do, how much she slept etc… And was more worried about Colbey Raye’s new sleeping patterns. I’d noticed before that Colbey Raye would do this excessive blinking for a few seconds, zone out a little and then come back to her normal self. On Friday May 24th I witnessed one of Colbey Raye’s seizures for the first time. She was blinking, twitching and non responsive for about 20-30 seconds and I tried pinching, shaking and talking her out of this state, nothing I did worked but eventually she snapped out of it and returned to her normal sleepy self. I again brushed this off, but I said to myself “that looked like a seizure.” Just two days later she was admitted to the hospital, but that flashback will be saved for another day.
So now events that started a year ago have placed us on this journey that has brought us to where we are today, Undergoing surgery number 2. Josh, Colbey and I will be headed to stay the night in Seattle on Wednesday, and then surgery is first thing Thursday morning. At this time in 4 days we will be sitting, waiting wondering, praying, hoping that everything is going smoothly in the operating room. We will have already said our goodbyes and our sweet little miss will be in the hands of God and her wonderful surgeons. This will be a much longer procedure, and I know from how I felt during the last surgery (it lasted 6.5 hours) this one will feel like an eternity. Trying to keep my mind off the situation, trying to keep my thoughts in prayer, and trying not to stare constantly at the pager will be my goal. Stress will be high, but strength is something I’m good at keeping. Some days I wish I was not so strong, but on these days I’m beyond grateful I am. It my be small, but this is my entire world, being a mommy is my entire world, and I feel this world is resting on my shoulders. From one baby in surgery and the other far away from me strength, prayer and faith are my lifelines.
Many family, friends and acquaintances have asked how they can help. We definitely could use all the prayers you can throw our way!prayer is so powerful and we appreciate every one of them. Starbucks gift cards are the most helpful thing for our stays at Children’s! There are 3 locations and we are able to get meals if needed and coffee, much needed coffee. It is hard to leave the room, even for a few minutes but the Starbucks is so close a coffee run can take less that 5 minutes. I have an extremely hard time leaving the room. Even if there is someone else to stay with Colbey Raye, I do not want to miss a conversation with a doctor, I do not want to miss a seizure, and I do not want to miss a moment with her, especially when she is so helpless. Safeway gift cards have been helpful as well. Towards the end of our stay josh will be traveling to and from Seattle a lot and Safeway is a good place to get gas and or groceries. It is hard to pack food for a 10 day trip so Safeway runs will probably happen a few times. In these times anything helps and all is so greatly appreciated!
This will be a 10+ day stay, and from experience I can say I begin to go a little stir crazy. 8 days has been our longest stay prior to this upcoming surgery and I know 10+ days will be pressing hard on my sanity! Other things, we will be great to have visitors, if you want to visit feel free, we do not mind the company at all! all I ask is that we do not have many visitors while Colbey Raye is in the ICU, as only 2 people will be allowed in the ICU room with her at a time. Last time we were just in the ICU 1 night, but I will keep everyone updated as to when we move out of the ICU. Thank you all for the constant support, prayers, and love, we wouldn’t be here without all of it, we and especially miss Colbey Raye are beyond blessed.

Writing helps me clear my head, finding the time is hard but much needed. This may be the last post I’m able to get in until post surgery so thank you all again! Just a little update on Colbey Raye, she’s still have multiple seizures almost daily, even with the increase in medications. She’s very extra tired and is having a bit of a hard week. Clingy to mommy a lot, but that I do not mind 😊. We are getting our snuggles in, our giggles out and some special family time racked up before the big day. ❤️

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