Josh and I were talking a few nights ago and he asked me ” do you ever think about what if there was something we could have done differently during your pregnancy with Colbey Raye to have changed the outcome.” We talked about his feelings on what ifs and maybe he could have helped more or I could have rested more and so on. I have to say, yes, I have thought about the what ifs. More so back in the beginning when we were faced with all of this brand new foreign information! The shocking reality and the simple fact that this is just how Colbey Raye was created, I did step back and think to myself, was there something I could have done during those 9 months of development to change her fate? No, no I do not believe there is anything I or anyone else could have done to change this reality. There is nothing I or anyone else could have done to “fix” or prevent Colbey Rayes brain from forming “imperfectly.” Now, do not take this the wrong way, but I would not change anything about the journey we have been on since we were blessed with Colbey Raye two and a half years ago! I’ve never experienced anything more exhausting, anything more challenging, heartbreaking or life changing than the diagnosis Colbey Raye received at just 6 weeks old, but I would not go back and change a thing. Why you may ask? Because all though it has been hard it has been the most rewarding experience. I am able to be the stay at home mommy I always wanted to be, we have made amazing friendships through all of the therapies and doctor visits and Colbey has taught me how to love selflessly and how to place my trust in a higher power when I am no longer able to control a situation. I have become so much stronger, so much more faithful and our family has grown together in ways we other wise may not have. Colbey Raye has blessed us so much and challenged us to learn and to grow, I would not trade my perfect sweet baby Raye for anything, I love her just the way she is because she is mine and God made her perfect! I am thankful to have this strong tiny fighter to call my own, and I am thankful for the smile on her face everyday that brightens every room she enters! I am thankful she is stubborn and determined to be the best she can be, I am thankful for the good days and even the bad days, I am thankful for Colbey Raye.
I do not blog often enough. But then again, with three little littles it is hard to find the time. I have countless begginings written up but usually fall asleep before finishing them and then I never get back to the topic I was writing about! I love to write, I enjoy it, it is a huge outlet for me. And so many times I will write an entire blog post and never publish it! Why? Because the simple act of writing my thoughts down onto paper (or typing them into a screen) can sometimes be a huge relief, and other times I am not yet truly ready to share those deep feelings with anyone but myself. I’m an “I’m doing great” kind of person even if that really is not the whole truth…
Miss Colbey Raye, boy has she grown and blossomed into a wonderful little girl! The ups and downs never seem to get in her way. She always finds a way around the obstacles, no mater how much myself or her therapists wish she’d do a few things differently, she adapts so well in her very own unique ways! It truely is amazing to watch her learn how to do some things that just come naturally to us, she is so determined to keep up. And she does! She can scoot across the floor faster than Beauden can crawl! She will win the race every time, even if it means tripping her brother 😋. She is fiesty, she is way to smart! She has recently figured out that by saying “owe” we will stop doing whatever it is we are doing to make sure she’s okay. Well we have caught on! And she cannot fool us now. Even the tears can be turned on by demand! She really could be an actress she’s pretty good at the waterworks and convincing rolls! We can add comedian to the list too, she’s funny and she knows it!
PT is coming along really well! Her anckle orthotics have helped tremendously with her stability and strength. She has a new gait trainer and actually enjoys using it! I think a break from her old one was good for her and now she realizes what she can do when she stands on her own to feet. But have I mentioned she is stubborn? Oh, well now you know! She wants to walk very badly, and not just walk, she wants to independently walk. But she is still not strong enough, stable enough or straight enough. Now when I hold her hand to walk she will try to push my hand away so she can do it by herself, and this always results in a fall. She will now pull herself to stand at the couch turn to face outward and take two steps way from the couch before crashing to the ground. 99% of the time we catch her or she purposfully sits down when she no longer has balance control. But now and then she will fall, but she always gets back up to do it again and again and again. I think she is determined to walk before Beau. And at this rate she might! He has zero interest in learning to walk!
Speech is also going good. Colbey Raye has been putting two words together more and more often. The two words chosen are usually in her top 10 most used words but it is still a huge improvement. Among these two word favorite frases are “baba nigh-nigh,” “Buber nigh-nigh,” “Jojo back,” “dada bye,” “bye nini!” And other similar things using those same words mix and matched. But her favorite things to say are “MINE!” “Buber,” “that,” and “more.” Her vocabulary has grown so very much. She does knows more words than she can easily retrieve, but seeing things helps her remember what the word is to be said.
And OT, this Also is going good. We have seen improvements I had begun to feel would never come. We have seen progress, slight maybe but progress, in her right arm. She has so much more sensation! She can feel a lot more and can recognize exactly where the pain or pressure applied to righty is coming from. She will remover righty (by grabbing it with lefty) from an uncomfortable position and she will also place righty (again by grabbing with lefty) into different places and pull righty out of places when needed or asked. The ESTIM we use with righty has helped immensely and I have seen a huge change in the short time we have been actively using it. We are still striving for more use from that right arm, but trying to be patient in the process. The visual side of things has been suffering again more since this past seizure, hopefully time will heal, but we will be having some more eye exams soon. Over all Colbey Raye is improving! There are a few areas that have taken a hit since the seizure erupted, but nothing a little time cannot heal.
I just have to say, Colbey Raye is beyond blessed to have such an amazing team of people fighting this fight with her! Pushing her to new heights helping her raise the bar and climb the mountains. Our schedule is a little busy, but I would not trade it. Colbey Rayes group of therapists work so hard, have researched so much just for ways to help Colbey Raye it is amazing. I may be a little lost in this crazy world of Colbey Raye with out them. They are like family and they love Colbey Raye like she is their own! So no wonder she works so hard and tries so hard to reach the goals. She knows she is so loved and looked out for.