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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