Yet again I’ve been trying to get a post up! Between the lack of time and energy and our busy end of summer schedule it’s been hard to sit long enough to concoct a post, let alone sit for a breather! But here it goes, if this goes up on the blog then amazingly enough I found just enough time between events to put it all together!
Last week on Tuesday the Colbey Raye and Team Coate fundraiser took place. It was a lot of fun for the whole family! We got to spend time visiting with family, introducing Colbey Raye to new faces, and Austyn Jayne had so much fun jumping in the bounce houses, having her face painted and eating lots of yummy spaghetti! The turn out was amazing as well! So many people came to enjoy and support these two kidos, it was moving, exciting and amazing to see so many happy to help. A huge thank you to all that volunteered, and to the Oaklands for coordinating, planning, and heading up the whole event!
Colbey Raye is learning more and more every day! This past week+ she’s taken a leap in her communication abilities! She now knows a handful of signs, and is perfecting them daily. Her favorite is “milk” of course! She signs milk when she wants a bottle, or when she wants what someone around her is eating or drinking. She has also started saying “mmmm” (for more) when she wants more food, likes what she is eating, or what’s the food someone else is eating! She really likes herself some food 😋. Another sound that is associated with drinking is “ahhh,” usually only used when she wants what I am drinking! All of these are new and a huge help in understanding the needs of Colbey Raye! The squawking still takes place often, but now I can ask her what it is she wants and she can sign or make sounds to help us figure it out. Along with signing milk, Colbey Raye also signs please, thank you, more, all done, eat, and if tired she will nod her head rapidly when you ask her if she is ready for bed! She was confusing herself and would sign every single sign she knew when she wanted something, but now she has gotten them pretty much figured out and is yelling at us so much less. I think this has made all of us a little less frustrated and much happier. Austyn Jayne has been signing also, so we give praise to both girls often 😊.
Still enjoying being the center of attention Colbey Raye responds very well to laughter and applause! But she still could care less when scolded. Colbey Raye pulls her sisters hair, and does not care to stop! She throws her food onto the floor and the only thing that fazes her is when we take the rest of her food away! All normal, one year old things to do! But her newest trick has me worried. we are trying so hard to stop this but she has found a huge enjoyment in throwing her head back hoping someone is behind her to catch her. She will do the head throw over and over again when Austyn Jayne sits with her and Austyn Jayne usually catches her, but there have been a few times where no one has been behind her and she has hit her head pretty hard 😕, or conked heads with her sister. Resulting in tears, and then more head throwing! How do we stop this?! I know it is give her a head ache, she will hold her head a lot after the bonk, but still continues to do it. I would hate to have Austyn Jayne stop holding her, but that is usually the start of the head throws. The girls LOVE to sit together, they laugh and play and it’s adorable, but I’m worried about Colbey Raye hitting her head so much. Tough times…
The butt scooting has begun! And Colbey Raye can get from room to room scooting around on her bottom. She pulls with her left hand, and pulls with her left foot while dragging her right arm and leg behind her. It’s cute to watch but sure looks like a lot of work! She is happy being able to move around a little more and I am happy for her, she’s a strong willed little girl, and I’m so proud of her determination. Her right leg has begun to show a little more strength, and she has been using it a little bit more. Her right arm is still kind of there, toting along at her side and resting on her leg as she plays. She has been holding it up more, and her wrist isn’t as floppy as before, the kinesio tape is helping her wrist a lot. Working, working, working hard to strengthen that right side!
Miss Raye has come such a long way, over 3 months post op and 3 months seizure free as of yesterday! September is here, new things happening and we (I) and so excited for fall! Austyn Jayne is starting preschool at home, Colbey Raye is starting a new therapy schedule, and we finally get to see the surgeon for a follow up next week! We will be discussing medication changes soon, finger crossed we can start going down on a dose or two but we will see! Excited for this time in our life, looking back I don’t know if I ever was able to truly imagine life without seizures. I’m still jumpy at the sight of something “off” and worry myself when Colbey Raye stirs at night or stairs off, but a difference going 3 months with out a seizure makes! I’m enjoying this time and trying so hard to soak it up, praying the seizures stay away forever and that Colbey Raye continues to make leaps and bounds in her development. We all grow everyday, and we are all enjoying this happy time!