Monthly Archives: June 2014

Colbey Raye’s progress

Girls are in bed, Josh is at the M’s game and Phoebe and I are snuggled up on the couch. Our “mellow week has come to an end and the weekend brings on the hustle and bustle and starts the next week off with a bang! Next week is our first week that Colbey Raye will be doing her therapy routine where she sees each therapist! With schedules changes, other appointments and our therapists being out, we are finally starting the new normal routine! Mondays OT, Tuesdays PT and Speech/feeding and Thursdays OT again. Colbey Raye is doing so great for her OT and cooperating well for almost the entire 45 minute sessions! And her OT is very impressed with her visual awareness of her right side. We agree though that Colbey Raye is experiencing less sensation and feeling in her right arm, causing her to continue to rarely move it. She has begun to “mirror” her left arm so to say, and if she’s gripping tightly to something with her left, she is making a tight fist with her right. And if she’s on her back she will bring her right hand up close to her mouth when she’s bringing her left to her mouth. All good, but there is still a lot of practicing to be done! We have not seen PT much, but we are finally set on up with a weekly time slot so I’m looking forward to seeing how this helps improve Colbey Raye’s abilities. Speech and feeing is going amazingly to say the least! Colbey Raye eats like I champ, she’s not afraid to get dirty with food 😋, and this is a good thing as her therapist says she does not seem to have any sensory issues! Many kids with hemis can tend to have sensory issues. As for the speech did e of things Colbey Raye still isn’t saying many words but I’m amazed by her understanding and her mimicking abilities!! We have been working with her animal sounds and she can repeat what a pig, cow, duck and owl says! The pig sound she makes is my favorite 😊. She’s understanding more and more the emotions of other, and today while Austyn Jayne was crying, Colbey Raye made a face of sympathy. This is the first time she’s connected crying to something sad instead of just giggling and thinking Austyn Jayne is trying to talk to her. And when she bites me (oh gosh she’s a biter!) and I scold her she pats my back and kisses me. So sweet! But then she bites me again a little while later and the cycle repeats! She has also started throwing her food on the floor as some sort of game, but today when I would not give her crackers back a second time she became very upset and I think she learned a little because she did not throw any of her dinner on the floor, purposefully that is! We will see how breakfast goes tomorrow 😊. Getting Miss Raye to take her medicine is still being a challenge. I’ve started mixing it more with yogurt and letting her sip
It from a big girl cup. This worked really well until she got ahold of the cup and dumped her medicine/yogurt cocktail all over her high chair tray. I swear she has elasti-girl powers in the left arm! How she reached ahold of her cup I have no idea, but she did and it was a mess. I saved as much as I could, but I was feeling nervous as I do not know how much of her medication she actually got this morning 😕. She took it all really well tonight so hopefully everything will be okay.
Back to our busy week, with therapy in full swing Colbey and I will be running around a lot, but the time spent is well worth the progress Colbey Raye is making. I cannot believe June is pretty much over and Colbey Raye is already 5 weeks post op! We are looking forward to the Stars and Stripes pub run being put on to help Colbey Raye on July 3rd! It will be a lot of fun, a three mile run/walk and raffles and more at the finish! Just a reminder this is a 21+ event. Colbey Raye will be there at the start of the event to see everyone off sporting her cute red white and blue! But because the end location does not allow children into the building she will be leaving after the run begins. Also I wanted to make a shout out to who is hosting a fundraiser for Colbey Raye as well! She has created this beautiful bracelet in honor of Colbey Raye and the proceeds go towards helping is help Colbey Raye receive all the medical treatment she requires. Also you can find her on Facebook at and this is the bracelet –

Thank you all for the continued support and prayers! We are truly blessed, and Colbey Raye would give kisses to all if she could 😘.



A little about a lot!

This could turn into a chapter book really fast if my babies stay asleep as long as I’d like them to! It’s been almost a week since my last update? And I do have a few different topics I wanted to touch base on! This past week has been a busy one full of appointments, scheduling, parties, car shopping, big news sharing and more! So I’ve had barley any time to sit let alone put together a blog for all to enjoy 😊. So today, even though my house is not clean and my laundry room is over flowing I’m going to take the next few minutes to release some thoughts, news and update everyone on miss Colbey Raye!
I already touched on the visit we had with her rehab doctors, and all went amazingly well there! Our goal is still to try and have “rehab without walls” come and do intensive therapy with Colbey Raye, but we have to wait until July 1 to venture down that road. Fingers crossed we will not hit any road blocks this time around and will be granted the in home rehab therapy we want Colbey Raye to receive! As far as outpatient therapy goes, we just finally got the schedule set in stone and all therapies coordinating well! For now Colbey Raye will be receiving two 45 minute OT sessions per week, one 45 minute PT session each week and one 45 minute speech/feeding session each week. We have coupled PT and speech/feeding together so we only have to venture out of the house 3 days a week! And we were able to work really well around Colbey Raye’s new napping schedule so that she is at her happiest point in the day when undergoing therapy woohoo!! We are still working hard to find extra state help for Colbey Raye as our allotted therapy visits will soon be depleted with the frequency Colbey Raye is going. Our resources with the early intervention/birth to three program we are a part of have not helped us in that area much yet, and it’s becoming quite a hassle to try and find the extra funds to help with therapy. I have a few numbers to call and contacts to look into to see what options would be available for Colbey, but I had hoped there was more the birth to three program could do for her. And I believe there is much more they can do!! But we have to jump through a million hoops first and exhaust every other option before anything else is offered. But that could just be my opinion (based on the information I learned from the recourse nurse at Children’s). Today we had OT, and even though there is an over abundance of things we are to work on with miss Raye, her OT was very impressed with the improvements she’s made in the last week! Her tone in the right arm is getting much better, and she is trying to use it more for balance and stability. She’s not weight bearing on it unless we position her in a way that she needs to, but she is trying to use it to break her falls (when sitting). Colbey Raye has been braking out in a rash from sleeping in her wrist brace, so out OT doesn’t want her using it any more, we are going to try having her grip an object when she sleeps, but this could be a challenge with how much Colbey Raye moves during the night! Speech/feeding is also going amazingly well!! Colbey Raye is still on thickened liquids but she’s been cleared to eat most anything! Her facial weakness is still very noticeable when she smiles and tries to talk, but her awareness of food in her mouth is much better! She’s not choking or forgetting that there is food in the right side of her mouth, and she uses her tongue very well to move food from side to side. She’s decided that feeding herself is way better than being fed, so getting her to take her medicine has been a little more challenging depending on the day. We try to make sure she is good and hungry at medication time! Colbey Raye has also started to communicate and understand A LOT more! Since this surgery she has begun to let us know what it is she’s wanting, and she has stated to understand situations better as well as communicate in her own way. Her word skills are still stuck on saying “dada” and “ha” but she’s mimicking so many new sounds! She says “mmmmmm…” when she likes something she is eating, and she grabs onto faces if she wants to give kisses. She understands words such as, time to eat, kiss mommy, say hi, say bye, do you want more, are you all done, are you tired etc. where as before surgery she did not understand any of those phrases or questions. I’m so amazed at her cognitive jump since this surgery! She is one smart, bright, ambitious girl, and wants to learn so badly! She pays very close attention to noises and facial expressions trying to copy them and understand what they mean. She still refuses to say “mama” and I think part of that is because she likes to teas me 😋. She continue to amaze me every day, and she is such a wonderful sweet miracle in all of our lives! After talking to another family in a similar but different situation I’ve discovered they Colbey Raye is my hobby, and she is a wonderful hobby to have!!! 😊
We have been so go go go this past week, it’s been a whirl wind of stuff, but finally mellowing out, and no trips to Seattle this week, no events to attend during the week, no extra appointments for me or Colbey Raye and no car shopping to be done! I’m feeling relieved! So a recap of our busy last week. We had one trip to Seattle for Colbey Raye’s rehab visit, and already talked about that so moving on! On Thursday my cousin hosted a fundraiser for miss Raye, and it was a lovely day for it! Every year Jacki (my cousin) hosts a lemonade stand on honor of “Alex’s lemonade stand” to help raise money for childhood cancer at her in home daycare, and this year she decided to change it up a little and have the funds from the lemonade stand go towards helping Colbey Raye! We attended in the afternoon and had a fun time serving lemonade with all the kids, and raised $374! What a lovely day! We are receiving so much love, help and support in our cause to help Colbey Raye it is amazing. The next fundraiser coming up is the Pub Run on July 3rd! Colbey Raye, josh and myself will be attending and it sounds like such a blast! More info at it should be a lot of fun!! Come run/walk from pub to pub and enjoy some good drinks, food and raffles! And all though we will be attending, I will have to refrain from consuming the delicious beverages as we are happy to announce that the Smith family is being blessed with another little one, due to arrive early November.


Life will be crazy, busy, maybe a little hectic, but oh so fun. Although this was a big surprise to us, and a bit sooner that we were planning, God’s plan is bigger and better and we are excited for what He has in store! Babies are a blessing, a joy and who doesn’t love to snuggle up with a sweet soft and squishy newborn?!?! A new baby means a 3rd car seat, and a 3rd car seat requires a bigger vehicle (believe me, I tried my hardest to figure out how to get 3 car seats into the back of my blazer, no such luck!). Yet again, another event we were not planning on, but God will provide and we will survive! Austyn Jayne is loving the fact that she can now get in and out of moms car all by herself and only needs help getting buckled up! She thinks she’s all big and grown up now 😊.
It is amazing how the time slips away from us, we are already 4.5 weeks post op, and adjusting well to the new changes! We are looking forward to summer weather, fun at the lake, time with family and continued success for miss Colbey Raye. Prayer is a powerful thing and Colbey Raye is proof of that! She’s our little miracle girl, and brings so much joy to everyone she meets! If you need a pick me up just come see Colbey Raye, her smile can brighten anyone’s day!!!



Born to be strong

I have to start off by saying, in a very excited voice, our rehab follow up went so much better than I expected!!! I was thinking they were going to want Colbey Raye to return for impatient rehab, but instead the doctors thought that Colbey Raye has improved immensely on her verbal/communication skills and strength that they feel she is better to stay at home in her comfortable environment! I can’t explain how happy this makes me and our family. I was just feeling sick over the thought of having to leave Austyn Jayne again, she is just finally back to her “normal” spitfire self and her emotional ups and downs are so much better than they were a week ago. I did not want to burden her with the anxiety of us being away again. She does love staying with her grandparents, don’t get me wrong, but moving in with them for a few weeks, and going days without mommy and daddy would be rough on any little almost 3 year old. So for her sake I’m praising God we get to stay home! Also I am so glad the doctors feel that Colbey Raye is doing well. They were so impressed with her confidence and strength with sitting up, and were surprised to see her moving her arm now and then. Still no finger or wrist movement but she is lifting using her bicep muscles and is moving her shoulder now and again. The only down side to this is that we need to start doing more out patient therapy at home. We have only been doing PT, OT and speech each once a week and the doctors really want her doing PT and OT at least twice a week each. So we will be adjusting our schedules again to make this happen for our sweet girl. Whatever helps her and keeps her home and improving!! Our biggest concern is still the limit of therapy visits we are “allotted” by our insurance. A huge thank you to all who have helped us in our goals to fund these needed extras for Colbey Raye. We’ve been blessed so much and everything helps so much in getting us closer to being able to continue to provide Colbey Raye with the needed help she is going to be receiving for quite some time.
Since surgery miss Raye has learned how to sign “more” (with one hand 😋) say “hi,” give kisses on demand, give high fives, wave hello and goodbye, sign “all done” and she is trying to copy words like “love you” and “tickle tickle” along with mimicking sounds and faces we make at/to her. Colbey Raye has been such a fighter though all of this. She has her eye on the prize and she is so determined to independently take hold of that prize. She is still getting frustrated that her mobility is not what it used to be, but is learning to cope with it. She tries and tries to get her self moving around, but will sit and play if Austyn Jayne sits with her 😊, she loves her big sister so much! Austyn Jayne is so happy Colbey Raye is sitting to play again too! Colbey’s right leg strength is improving a lot, she will stand (with me helping support her) and bear weight on both legs for a little while before buckling her right knee to try and sit again. She is as happy and smiley as always! She’s one lover of life and no matter the challenges thrown her way she smiles through them and pushes on with a “come get me” attitude! Her strength is encouraging and so amazing. She was born strong, she was created so perfectly! Keep pushing baby girl, “you can do all things through Christ who strengthens you.” Philippians 4:13


Our first week home! And more…

I know I have been slacking on the updates! We have had a very busy week being home and settling back into our “normal” routines. It is hard to find the extra free time I can call my own, but I’m determined to finish this update today so all can hear how miss Colbey Raye has been since she’s been home. It will be one week tomorrow since she was discharged and on Thursday 3 weeks will have already passed since her surgery! I’m amazed at how fast this week has gone by, I feel like I have a million and two things to say and share, but I will try to limit myself as to not create a novel for all of you reading. Okay, here it goes!
Last week on wednesday Colbey Raye was discharged and we headed home, feeding tube free and on a purée/thickened liquid diet. So far she has done great with this diet and does not seem to mind at all that mommy now has to feed her everything again. She is also back to drinking plenty of almond milk, it is just now thickened and coming from a bottle instead of a sippy. I tried to skip the bottle and go straight from breast feeding to a sippy cup but I was okay with the bottle if it meant we could be NG tube free! Being the independent miss she is, she will only drink for something she can hold onto by herself, and now that she can only use her left had a bottle is skinnier and easier to manage with just one hand! Her first days home have wonderful, she’s eating, drinking and has slept through the night! Her napping schedule has been a little harder to regulate, but she calls the shots there and we let her nap when she chooses. Spoiled I think 😋. We even took her down to Josh’s families camp site and she enjoyed the sun and fresh air Saturday! It was a fun weekend, and maybe ended up being a little to much for her. The sun and extra stimulation made for one tired Colbey Raye by Saturday night, she slept all the way home and did not wake up when we put her to bed once home. Sunday was another eventful day, and Colbey Raye rolled over all by herself! She got her arm stuck under her but after a little help she found a comfortable way to stay on her belly, until she rolled right back onto her back! A little later she started moving her right arm up and down purposefully, using the bicep muscle. This is a huge improvement! She also has began to kick out her right leg and will even bear some weight on it if I make her stand. She wiggles her toes and ankle but still has not moved her fingers much at all. She had her first OT appointment on Monday and it went really well. Colbey Raye participated with some whines and cries but over all did very well. Her OT was impressed with her awareness on the right side even with the visual field cut and weakness and was happy to see Colbey Raye is still determined to refigure everything out. PT and speech start next week! Impatient rehab is still an option, this will be discussed when we return to Children’s next week for a follow up in that department. This morning Colbey Raye sat all by herself for a good 20 seconds!! She looses her balance quite easily due to the weakness on the right side, but she’s trying so hard to strengthen it. The transition to coming home this time around has been so much easier on us and on Colbey. The extra time in the hospital was well worth it. Her determination amazes me all the time! She is such a fighter and is so willing to push herself as far as she can to be able to achieve the goals she wants. She’s the sweetest snuggly baby I know, but she is also the most free spirited and independent also. These make for one strong girl and I know time will help her achieve all these goals her little heart is set on.

As for us and Austyn Jayne, being home has been refreshing but a challenge at the same time! Things are harder, and things are much more time consuming, but we are all so happy to be home I wouldn’t change any of it! Austyn Jayne is better day by day and I know she is beyond happy we are home and with her, but she has been a little emotional, and challenging. It has to be extremely hard on a 2 year old to go 2 weeks away form home without her parents, but she did wonderful and is slowly getting back to her “big girl” self 😊. She is still as sweet as can be to Colbey Raye! Whenever Colbey Raye is tired Austyn Jayne covers Colbey up with her blanket, and Austyn Jayne is not one to share her blankets! She wants to play with Colbey Raye so badly but still has not grasped the fact that Colbey Raye can no longer just sit and play, or crawl around with her. Austyn Jayne told me she was going to teach Colbey Raye to crawl again, and got down and all fours and started crawling around the yard, stood up and said “see Co Rayzee, that’s how you do it!” I love her to prices! Even though she can drive me a little crazy 😊. It’s been an adjustment making all of Colbey Rayes food, I’ve gotten better and prepping everything before she lets me know she is hungry! I can tell she gets a little frustrated being moved from seat to seat, lap to lap, and can’t just crawl off and play as she used to. But we are all adjusting, and we are so glad to be home. Next week is when the crazy, busy, routines, all set in. We will be doing PT, OT and speech up to 2 time each per week, and we have follow ups, fundraisers and summer hitting all at the same time! Colbey Raye is going to be tired from all the work, as will this momma! But it is all worth it, and will bless our girl so much!

Colbey Raye had a routine follow up visit with her neurologist today. It went very well, and Her neurologist is impressed with how well Colbey Raye looks and how happy she is. She wants us to have her eyes checked as her right pupil is still quite often more dilated than the left. Both constrict when light hits them so She is not extremely concerned at this point, but still thinks it’s worth having it looked into. We found out today that Colbey’s neurologists fellowship is ending at Seattle children’s and will no longer be following Colbey Raye’s case, we are sad to see her go as she has done a lovely job helping to treat Colbey Raye, but I am beyond excited because Colbey Raye’s “new” doctor is the one doctor I have been wanting to switch to for a while now! I’m so happy to have him overseeing Colbey Raye’s case and could not be happier than I am with this transition! We will start seeing him at our next routine follow up.

This time in our life has been one crazy roller coaster of emotions, and a struggle to find the time, energy and finances to maintain all that one needs to maintain since Colbey Raye’s diagnosis. I am so thankful to all those how have prayed and helped us this far and will continue to be thankful for the future help and support we receive. I am not one to ask for help, it is not in my nature, but in this time in our life I feel it is important for me to do so. I am going to attach a link to a Go Fund Me account that my sister-in-law set up for Colbey Raye, and ask that you help and share our story. This is a difficult time, and medical bills, therapies and medications, time away from work and frequent long drives to Seattle take a toll on our family not just emotionally and physically but also financially. If you are able to help, either by sharing or contributing we are beyond grateful! Our sincerest thank you to all!


Discharge in the works!

While we are waiting for all the paper work to go through, and medications to be filled I decided to take the last few “free” moments I have to post a quick, if I can even do quick, update on Colbey Raye and the plan for now! We have hit a few road blocks on our outpatient therapy options, due to our uncooperative insurance company we are not approved for Rehab Without Walls 😢, so Colbey Raye will have to go to an outpatient facility for therapy 4-5days a week. This is going to be taxing on mommy and Colbey Raye but I know it is well worth it and so needed to help miss Raye get back to baseline and even surpass her previous baseline! We will continue PT and OT but now we will be doing both 2x per week! Plus we will be adding on speech and eating therapy 2x per week. This is a massive amount of therapy, and time for such a tiny easily tuckered out little girl to concur but we love our current therapists and they know her stamina level so I am not worried, they will listen to Colbey Raye’s “I’m done” cues and are flexible with her tired points. The speech therapist we have been working with while in hospital is very impressed with Colbey Rayes progress and has deemed her “every speech therapists dream” so I see her doing well in this area of therapy once we are home :). She has started saying “hi” already, this is brand new post op! She never said hi prior to this surgery, and she says hi as she waves! She is also signing “all done” when she is finished eating or drinking! This is also new and wonderful as it helps us keep Colbey from aspirating or eating to much and then throwing up. She is currently on a strictly purée diet, along with thickened liquids, as she had microscopic aspirations with the normal liquids. This is due to the right sided facial weakness she’s had post op. We will have a repeat swallow study in a few weeks to asses and see if she can start having solids and thin liquids again, but I’m just happy that we do not have to go home with an NG tube in place!! As for PT and OT in hospital Colbey Raye has not been as cooperative. They have come and tried to work with her but miss stubborn and independent Colbey Raye did not like being touched Andy forced to do things she did not want to do. She has been throwing her head backwards if we try to make her sit, she just wants to rest, and she has been getting very upset when we try to have her use her right arm. She has tolerated us moving her right leg around just fine though! My hope is that once we are home, in her comfort zone she will be more willing to work with the familiar faces at St. Peter’s outpatient therapy! She loves her therapists there and knows them, so I’m feeling hopeful!
Colbey Raye will remain on the same doses of seizure meds she was on pre surgery, these doses will not be adjusted for some time to make sure the seizures are well controlled. We will be having an abundant amount of post op appointments coming up, such as a follow us with rehab, nutrition, another swallow study, opthamology, neurology, neurosurgery, neuropsychology and probably a few I’m forgetting! Life is going to be VERY busy, busy, busy for a while!
This little girl is so determined, so smart, and has such a great desire to be independent that I know she will start making huge leaps soon. She is the most courageous, inspiring little miss, and I’ve learned so much from her strength! I also wanted to share a link with everyone reading the blog, it’s for a fundraiser run for Colbey Raye! With all of the missed work, medical stuff, trips/gas to Seattle and the fact that Colbey Raye will be needing massive amounts of therapies and our insurance only covers 20 visits (these will be up in just 2 months with the amount Colbey Raye is going to require) finances are tight and this run will help so much! Check out the details at
And also my cousin will be hosting a lemonade stand in honor of Colbey Raye! This will be taking place June 19th at Spurgeon Creek daycare. We are so ready to be heading home after a long 2 week stay at Children’s! And are beyond blessed by all the help and support we have had while here. Thank you to everyone who has helped!


NG Tube, MRI, seizures…

I began to write up this blog yesterday, but by the time I was getting back to it to finish I was just to tired, and my thoughts were still a bit scrambled, I didn’t know how to really express the events of the day.
Yesterday is a harder day to describe. Was it a good day? It looks like Colbey Raye is feeling better, is she? How is Colbey Raye doing today? All these questions were a little bit harder to put a definitive answer to, as Colbey Raye does appear to be feeling much better and is acting so much happier too! So, yes, Colbey Raye did have a really good day yesterday! She was full, happy, all sorts of smiles and a bundle of snuggles! She’s off the IV fluids, so during the day she is a “free” girl and we snuggled with her bunches. She is on a slow drip through her NG tube from 4pm until 8am so for the afternoon she is a little more tied up but is still free to roam around and sit with us and snuggle the evening away. The feedings have helped with her spirits a lot! She’s been up for a lot more and her energy level is a little better also. All good and all helping her maintain a happy mood!
On Saturday morning Colbey Raye received a quick MRI to check and make sure everything looked normal, her fluid collection had increased a little after the EVD came out and it was just a precaution my make sure nothing was abnormal. The results came back clean and great, since Saturday the swelling has lessened tremendously and now the swelling is hardly noticeable. Still soft to the touch, and will be for a while, but the bulge of fluid is pretty much gone.
Today Colbey Raye is supposed to be receiving a video Swallow study, but so far we have just been working with the speech therapist on getting her to drink enough fluids to be able to undergo the study. We found that Colbey Raye wants to be a big girl now and would only drink out of the cup! But any drinking is fine with me, I can take the time to hold a cup and help her drink if it will help us rid her of the feeding tube! Speech is coming back around 12:30 to try again, fingers crossed she can get 2 ounces down without coughing!
And now for the part that I’m having difficulty expressing. Yesterday around 1pm Colbey Raye had her first post op seizure. It was a little bit different than her typical seizures, it started off with blinking and then her body stiffened as usual but her head turned to the left (usually her head turns to the right) and she did not shake during but was shaky afterwards. She was in a very postictal state afterwards where she was week, would only look to the left and her body was limp and very wobbly. Her right pupil was extremely dilated and she was confused and disoriented. She remained in this state for about 5 minutes and then slowly returned to a more normal state followed by a long refreshing nap! Colbey Raye is still in the post op window of time where this seizure does not mean one thing over the other, it could just as easily be a post op seizure due to all that she’s been through this past week and a half, or it could be the first signs of continued epileptic seizures for Colbey Raye. This is another one of the “time will tell” moments and we cannot jump to any conclusions one way or the other. But I feel so hopeful this time!! I’m not sure what is different about this event, but I didn’t panic, I haven’t felt to upset, worried, or like I’m constantly looking over my shoulder at her now. After Colbey Raye’s first surgery back in December she had a seizure just 3 days post op, and that seizure changed my whole outlook during that stay. The first few days I felt a huge weight lifted off my shoulders until thst first seizure hit, my world, my hopes of seizure freedom came crashing down around me, so it felt, and I returned to a constant state of cation, watching her every second and worrying about the next event striking. Why this time it’s different I do not know, maybe I have accepted this journey more fully, maybe my faith is a little bit stronger, maybe I’ve placed my trust in Gods plan, whatever the case may be I’m so much more hopeful this surgery will bring peace to Colbey Raye, and I’m so happy to see her beautiful goofy smile, my hope is high, my trust is deep and my faith is strong.
We are ready to being this baby girl home!!