I have this new (new to me at least) app on my phone called TimeHop and it’s a fun app to have but the other day it popped up with a picture that took me back, back to the beginning and I couldn’t help but recap the events. So I myself took a moment to scroll back through the 4000+ photos on my phone to view these emotional events that had consumed my life this last year. I looked at all the pictures from hospital stays, I could tell you a million details about what went on during each specific stay, and I cannot let go of the feelings I felt during those days. Some just a day or two, others a week or more but each significant in our life and each have left a deep impression on my heart I will never forget. While looking at these pictures I came across one that stood out to me a lot, it was a picture taken at home so one I was not looking for intentionally. It may be hard to notice for many but for me it’s a stamped moment in my head I will never ever be able to forget. This picture captured a moment I was not trying to capture. If you follow me on FB or IG you know that Colbey Raye is usual full of smiles! And I remember this day way back, trying to catch one of her big grins and I caught something else. The face she was making was the face she always made at the start of a seizure, I snapped the picture and realized what was coming, so I switched over to video to catch the event on camera.
I have a bunch of videos of Colbey Raye seizing, and I’ve re watched some of them in the past, but after seeing that picture I did not want to view any videos of the sort. I can replay the events so vividly in my head, there is no need to view them on my phone. Today makes 2 whole months Colbey Raye has been seizure free! Everyday forward without a seizure is a record breaking day for Colbey Raye! She has had a cold (over 4th of July weekend) and she is just getting over a 103 fever this past week. Prior to her most recent surgery both of these events would have sent Colbey Raye into uncontrollable seizures, a hospital stay, and most likely more medication. As well as tests, meetings, different options to consider and the list could go on forever. I’ve been a little edgy this week, worried the seizures will return, watching Colbey Raye extra closely, staring at her through naps and jumping at the sight of anything “funny” looking. But I couldn’t be happier to anounce that there have been no seizures, no seizure like activity, and no real issues! This fever has set her back a little bit, missing PT and Speech this week as well as being to tired and emotional to really participate in OT, but she is still seizure free! She has been more off balance, falling over while sitting, something she has not done in a while, and she has been moving her right arm and leg much less the last few days. Also her facial weakness has been worse again since the fever, her cheek is puffy and droopy and her smile and eye are back to her very noticeable “pop eye” look. Hopefully she will recover quickly and be back to her determined self again soon, with a little extra rest and time. Her OT wasn’t surprised by any of this given that she had such a high fever for a few days, and is very certain Colbey Raye won’t take long to adjust back to making good progress soon! We will be working extra hard at home to give a lot of input to the right side, arm, leg, mouth, all of it trying to help stimulate the desire to move. Because of the fever we had to cancel all of Colbey Raye’s follow up appointments and now have had to reschedule. A bit of a pain, and now a few added extra trips to Seattle but worth every mile driven to ensure Colbey Raye’s recovering right on track! The lists of questions are piling up, so I hope our surgeon is prepared for the upcoming visit with us 😋. This next week we see the ophthalmologist and speech therapist for Colbey Raye’s swallow study. Please pray she passes, thickening her liquids is not hard, but our insurance will not cover the cost of the thickener so we are really hoping to not have to order more.
As for the rest of us here in the Smith house, Austyn Jayne is wanting to help Colbey Raye learn so badly! She is her little cheer leader and claps whenever Colbey Raye does something (old or new) and will sit and play with Colbey Raye’s arms trying to teach her to move them. Austyn Jayne has also informed me that she only wants Colbey Raye, she has no desire to have another sibling and thinks Colbey Raye should be my only baby! She adores Colbey Raye so much I think she feels how I felt when I found out Austyn Jayne wasn’t going to be my only baby any more! I remember being worried abut loving my second (Colbey Raye) as much as I loved Austyn Jayne, and boy can ones heart grow massively! I know Austyn Jayne will just love this new little bundle so much, as will the rest of us. With all that’s gone on the past few months I’ve hardly thought about the fact that another Smith is joining us soon, really soon!! Just 3 more months and I’ve hardly put any thought into it. Time for this momma to start getting attached to the idea of having more kids than arms, and two that will be needing to be carried every where! I’m worried Colbey Raye will have a hard time adjusting to a new baby around, she’s my hip hugger and constant companion every where I go! It will be an adjustment for us all, but I think it’s going to be the biggest adjustment for Colbey Raye, our baby is being bumped to the “middle child” slot, and she has no idea what is coming!! She will love being a big sister I just know it, and Austyn Jayne will too x2!!! Josh is the most excited for the baby, he talks about it all the time 😊, and says he can’t wait to have another tiny thing to snuggle up with. There will definitely not be a shortage of snuggles around here soon! Thank you all for the continued prayers, support and love. We are blessed abundantly in so many ways!