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 https://m.facebook.com/events/1429715317297615/?ref=22 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!!!