Monthly Archives: July 2014

9 weeks post op today!

I just need to say a few things about Colbey Raye to update everyone on her progress and abilities. My last post was more about Austyn Jayne than anything else 😊, and I wanted to get some exciting info out about miss Rayzee as today is her 9th week post op!
I was looking back at pictures of surgery last night and remembering all of the trials, worries, stress, struggles, confusion, pain, joy, excitement, anticipation etc… That we felt while awaiting surgery, and after surgery (I’ve been extra emotional lately so the tears kept/keep rolling!) It was such an emotional time, and looking back it was such a wonderful time too. Some of the most difficult times help us become better people, stronger parents, and more loving caring natured. This girl has changed my life and I strive daily to change hers in the best ways possible! That being said, the choice we made to put her through surgery, a surgery that would limit her physical abilities, cause her to have a visual field cut, more difficulty with speaking and so on was by far the best choice (in my husband and my opinion) we could have ever made
For our sweet little girl. The damage the surgery has caused is far less than the damage the seizures were causing! I’m so happy to say that Colbey Raye is now 7.5 weeks seizure free! This is the LONGEST period of seizure freedom Colbey Raye has ever experienced. She is still on the same medication doses as she was prior to surgery, but hopefully we can start weaning her down in a month or two. I know there is still that chance they will return, and I fear that day will come but I’m also very hopeful it never will and that our girl will remain seizure free! Even though we are having struggles boosting her right arm and leg into action, her cognitive ability is jumping more every day! She is also relearning how to sit herself back up, rolls over to both sides, will stand with weight on both legs (with support and help getting up to the standing position) and she’s still the happiest smily kid around! Nothing gets her down. She’s now only doing OT once a week instead of twice, and still does PT and speech once a week as well. We make a trip to Seattle on the 30th for an MRI, a follow up with the surgeon, and a swallow study (fingers tightly crossed that she passes so she can come off the thickener). We return to Seattle on the 7th for an eye exam and then get a break until early September! My superb eater is starting to show preference in foods, her favorites are berries, all kinda, and she love all fruit and veggies. She’s beginning to push away her breads and crackers in hopes to get more fruit 😊, silly girl! But she’s still not picky, will eat whatever I give her unless I have to feed it to her!! She wants to do it herself. This girl is so determined to be independent it amazes me. She’s still my snuggler, and wants me to hold her constantly! She will sit and play with sister, and alone if I make her, but as soon as I walk by again she’s squawking at me demanding up! She waves that left are gesturing up so hard sometimes she will fall backwards. She wants to be the center of attention, she has a serious love of music and dancing, she will make your day, make you smile and laugh with her super goofy new funny faces! I’m feeling so blessed by her, her sister, her daddy and all those around us!
Changes around here are being made to better help me help raise my family, and with all of the extra time Colbey Raye requires we have decided this momma needs to work less and focus more on our children. There are always pros and cons to everything, and after weighing them out, we decided my time and energy is better spent giving Colbey Raye the best chance at improvement as well as being much more present for Austyn Jayne, and for the soon to be new youngest. Hard to believe baby number 3 will be here in just 15weeks… Time to spend time with my girlies. Thank you all for the support and encouragement, please take the time to continue to share Colbey Raye’s Go Fund Me account http://www.gofundme.com/a32o1c with the new changes we are making as a family our financial situation changes and will become more difficult. As of now with therapy the way it is, visits will run out, splints will need to be made, braces fitted, learning materials purchased and so much more. We are doing the best we can to help out our little miss Colbey Raye! She’s a blessing, and worth every second of every minute spent helping, working, pushing her towards improvement. It’s a full time job being a mother! And it’s much added over time being a mother and caregiver to a little baby with special needs. I would not change a second of this life for anything, and I would choose this life over any other. Nothing makes me happier than knowing my life, children and family are my greatest work!

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Summer, progress, life

Summer is just full to the brim and time is seldom found, I still am in aww that today is the 22nd of July! What have I been doing to pass the time so quickly?! When you jam as much excitement into each day as possible, I guess that’s what happens, days slip away and before you know it summers almost gone. The past few weeks have been a fun busy blur, yet I remember the most important/fun events.
Austyn Jayne is now 3! She had her third birthday a week and a half ago and it was a huge success! She had the best day of her life and her smile went ear to ear the entire day! We celebrated a few days early to accommodate the busy schedules of family, and it was perfect. She knew the day was all about her and she was sweet, happy, kind and loving towards everyone. It came as a huge eye opener to me, I need to make things just about Austyn Jayne more often and have special stuff revolved around her. She’s still miss Sassy, and her little attitude is just hilarious (as her parent I probably shouldn’t laugh though) and so far, even though it’s only been 10 days, I have to say age 3 is better than 2!

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Colbey Raye is now a big 15month old! Austyn Jayne says all the time “Colbey Raye can’t do that yet, but she’s getting bigger girl, I teach her how.” These two are the best of friends and Austyn Jayne is so nice to Colbey Raye it is adorable. She never gets upset (unless Rayzee pulls her hair) and she’s always the first to offer to help Colbey Raye. Colbey Raye brings out the best side of Austyn Jayne, the sweet, caring, overly loving side that Austyn Jayne only shows to extra special people 😋. Now back to our little 15 month old! She’s growing up so fast and is learning new tricks all the time still! Her progress in OT, PT and speech have amazed her therapists so much! She’s now only doing each type of therapy once a week. Her OT has been so thrilled with her progress she only needs to see her once week now. Colbey Raye has the best group of therapists, and they sure know how to make a mom feel adequate for the job! With the busyness of life, the fatigue of caring for two small children and the fact that in just 15 weeks we will be welcoming our third, this momma is tired and some times does not feel like she’s meeting all the needs of her family. The encouragement from Colbey Rayes therapists is amazing. I know I’ve been slacking in my home therapy with Colbey Raye, but they seem to think I do an over abundant amount of work with her and go as far as saying “superb” “exceptional” and mentioning I should become an OT or PT myself. It’s uplifting to hear, but I just do what I can to help my baby girl be the best she can be! She’s stubborn and tough and I know she’s up for the challenge so I challenge her daily.
Colbey Raye is starting to understand and comprehend so much more since her surgery! She will be 9 weeks post op on Thursday and if you didn’t know her, you could hardly tell! Yes she is lacking in areas, and her mannerisms and cognitive level is more of a 10-11 month old, she’s blossoming and no one looks at her as if she’s “slow” or “different.” She’s finally saying “mama”!! Still will not say it on demand and much prefers to day “dada” but when she’s mad and feeling ignored or tired out comes the yell for “mama!” She knows who we are taking about when we say “sister” and Colbey Raye will look all around for Austyn Jayne until she spots her, and always give a huge smile when she does. Colbey Raye has begun to pretend to be shy around strangers, even though she will reach out to the closest stranger in the store wanting to be held by them. Her stranger danger instincts are at a large 0! But it makes for easy pleasant doctor visits 😊. She will still let ANYONE hold her, but she’s started to always want me close by or holding her if she can see me. Her sassy attitude is slowly making it’s way out, and her form of communicating what she wants is a very “pleasant” yell. We are working with her on signs and language to help her get her needs met but she’s satisfied with the screech so for now we answer to it. She will be sitting on the floor squawking at me to pick her up and once I do she begins to give me multiple open mouth kisses as a thank you. How can one be upset by the squawk when she thanks you in the most adorable way?! Her sassy little yells and demands are usually only directed to me. If she’s in a little fit and someone else walks by, she instantly stops yelling, begins smiling and waving at the new face. Helping me realize that she has mastered the art of faking her distress in order to get what she wants. She’s learning wonderful new tricks 😊. I feel like I could go on and on about this adorable sweet thing, where do I stop?!
Now that summer is half way gone, my babies are getting so big, including the one in my belly, I’m feeling behind and overwhelmed a little with the demands of our busy life. It’s time to make a few adjustments for the family, some easy some hard, but all we feel are for the best! I’ve come to see how much Austyn Jayne needs my time and attention, and with Colbey Raye’s busy schedule it’s been hard, but also having her seizure free for the past 7 weeks has helped me be able to relax a little more and take some eyes off of Colbey Raye and place them on Austyn Jayne. Life is full, life is busy, but life is wonderful!

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A typical day in the Smith house and pub run results

I’ve been thinking a lot about how a typical day goes around our little house these days. With summer here and the hustle and bustle of fun I’ve heard hear, there and everywhere about how BUSY everyone’s lives are. How much can one pack in a day? For us, our days are pretty typical, at least our Monday-Friday is pretty typical.
Colbey Raye is my alarm, she’s generally up between 6-6:30am, and we begin our morning! Josh gets up around 6:30, I get up, take a shower and Josh gets Colbey Raye all settled in downstairs until I come down so he can be off to work by 7:00. Colbey Raye gets her morning bottle, I begin prepping breakfast, or starting a load of laundry, or picking up what I didn’t get to the night before. At 7:30am we welcome our first little daycare boy into the mix, and breakfast is being served by 7:45! Colbey Raye and her little friend eat up and Austyn Jayne slowly makes her way into the mix between 7:30-9, whenever she decided to wake up 😋. Around 8am, Colbey Raye gets her medication/yogurt cocktail, she’s been fighting this so it can take almost a half hour before she’s finished with the mixture. In the mean time, my assistant comes around 8am as well as the other little daycare girl, Austyn Jayne gets her breakfast and then I proceed to clean up the breakfast kitchen mess! Next it’s time to get my kiddos dressed while we have morning play time. After clothes are on it’s time to make a bottle and put Colbey Raye down for her morning nap, it’s now about 9:30am. From 9:30 until 10:30 the kids play, or we do crafts and read books, and on really nice mornings we take an outside adventure! Colbey Raye is up about 10:30 for a small little snack and then her and I are off to our (3xs a week) therapy session by 11:00! On Tuesdays we have to leave the house a little earlier as her PT starts at 10:30, instead of 11:15 like all the other days! 11:15-12pm we participate in OT, PT or speech, which ever takes place that day and head home for lunch! While we were out at therapy the other ones back home clean up, have lunch and are prepping for nap time when Colbey and I get back. We eat our lunch and between 1-1:30pm Colbey Raye is headed back down for her nap. On some days Austyn Jayne will go down for a nap too, but she’s beginning to grow out of her naps, sigh… Oh well, it gives her and I some special time together! All the kids are up around 2:30-3pm and we have a snack and then head to the door for some fun in the sun! At 4 we slowly make our way back inside for a little down time before daycare closes at 4:30pm. We play quietly with toys, read some stories or occasionally watch a short show. After all the kids, that attend daycare, are headed to their own homes for the night and we go back outside to water the garden and check the mail! Josh gets home between 5-6, and I begin making dinner. My girls are both very grumpy hungry kids and if dinner isn’t ready around 6:30pm they can get a bit sassy and grumpy with me 😋. Colbey Raye has started letting me know she NEEDS FOOD NOW! by throwing little whiny grunty fits until dinner is served, and Austyn Jayne will just “help” me cook so she can snack on whatever veggie I’m chopping up to go with dinner. After dinner Josh does the dishes, with the very helpful help of Austyn Jayne! And I clean up, and put away all the food while Colbey Raye plays on the floor. Next we do a number of things, depending on the night. It’s either bath time, snuggles with daddy on the couch while I do laundry, play time with toys or whatever else needs/wants to be done before bed time! I do our therapy homework with Colbey Raye until she’s to tired to continue and at about 8pm Colbey Raye gets her second medication cocktail. This mixture also takes about a half hour to get her to eat so by the time she’s done it is time for pjs and up to brush teeth and snuggle up into bed, for the kiddos! Two nights a week I head back down stairs to help assist my disabled sister with a shower, and Josh generally waits up for me. The other nights we are cleaning up, getting the house ready to start our next day! The weekends are quit a bit different and spastic and who knows what we will be doing! But our typical days goes like that, with all the normal tantrums, smiles, learning, fun, tiredness, and love thrown in all around! It’s a fun busy life, full of surprises, joys and our share of trials 😊. This is a “typical” day. It sounds packed, scheduled and smooth, but there is so much more “life” that happens in between those “scheduled” events, our days are full, full of love, fun, therapy and children!
There are days we throw in trips to Seattle Children’s for follow ups or to pick up medications, days where we throw in prenatal appoints or wellness checks, nightly grocery shopping, meetings Josh and I have to attend, or nights Josh has to work until 7pm or later! By bed time , for Josh and I, we are both pretty tired and ready for a good nights sleep! But between Colbey Rayes nightly wake ups (due to her arm falling asleep) and the constant urge to use the restroom, this momma is up a few times a night helping either myself or miss Raye return to a comfortable pain free sleeping position. And through the busy, the hustle and bustle of life I cannot help but feel extremely blessed! We have a beautiful home, a wonderful family, and a fun exciting life. Colbey Raye gets to attend therapy often and has improved immensely in all areas! We get to see amazing doctors only an hour and a half from our home, and I get to spend every moment of everyday with my children! My children to get learn and play with friends, they get social interaction daily, and learn life lessons along with scholastic lessons. Embracing life one day at a time, because it is a lovely one!

I have to take a moment to mention the fundraiser that took place for Colbey Raye on the 3rd! We’ve been so busy having fun with the holiday weekend that I am just now getting the time to make a post. For all those who know and don’t know, there was a pub run fundraiser held in honor of Colbey Raye. There were raffles, donations, a BBQ and a little running and drinking involved 😋(none of either for me though of course!).The P3 running group held the event, thank you so much for coordinating it all! A huge thank you to all who donated the raffle prizes, and an especially big thank you to my Aunt Suzi who asked that this event be held in honor of Colbey Raye. The event raised over $3000 to help us help Colbey Raye, and it broke the record for most money raised by the P3 running group. Amazing! This little girl is one blessed and loved sweet thing 😊. Thank you for helping us make Colbey Raye’s road to recovery even stronger! I do not know how to express our thanks and gratitude enough! We are feeling so blessed.

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