Monthly Archives: October 2015

Healthy again and feeling more herself

It’s taken me some time to collect my feelings to be able to write this post. Even though I’m still unsure what my true emotions are, most likely a mixture of many, I’m finally able to say that Colbey Raye is back to her self! It took a little over a week but she is finally her cheerful, friend, social self, giving out smiles left and right, With plenty to say and a “do it myself” attitude! I’ve been so far behind in my updates I feel there is so much to say! But let’s just get some milestone markers and highlight some bullet points!

Colbey Raye was fitted for her first set of anckle orthotics! She wears them during PT twice a week while we work on strengthening her legs and she also uses them at home when we spend time standing and walking! The have helped her improve her balance and she has a stronger more sturdy step since using the orthotics. She will be getting a new walker in the next week or two and I’m beyond excited!! We have been trying to find the perfect match for her, she isn’t s fan of using one, and our fingers are crossed this new one will be magical! Her speech has taken off!! She still speaks in one word sentences usually but she does have a few phrases she likes to say! Such as “bubber nigh nigh?” “Dada bye?” “Mine baba!” Those types of phrases! She can answer questions, and understands pretty much everything we say to her! She is so much better at communicating her wants and needs and is very good at letting us know what she does not like! No might be her current favorite word, second to “MINE!!” That is.

We have been using an electrical simulation machine on her right arm and it has increased her awareness and feeling so much. She can now tell where the pain is coming from and assist righty in escaping said pain! This is a huge improvement to her sensation and awareness. We use it twice a week during OT as well as on our “off” days at home. The goal is to have her use “righty” functionally while hooked up to the Estem and so far Colbey Raye has responded well to it! She eats Cheetos by holding the cheeto (we place it in righty) and using lefty to pick up righty and guid it to her mouth. Getting righty to become a helper hand is a work in progress, but we are really hopeful that Colbey Raye will be able to use it functionally in time, but most likely just for slight assistance and a little support. Only time will tell with this.

With Colbey Raye feeling so much better I finally feel a sense of ease settling in. The ability to relax a little more, I’m not carrying the monitor on my person at all times, and sleeping is becoming easier. I say that and it’s 1am and I’m still up… I’m trying to get back to my usual sleeping habits, but Colbey is still restless during the night off and on so I’m still struggling there. It’s been a hard adjustment for me. I’m okay, I’m confused, trying to sort out what this all means for the future and our hopes of a med free/seizure free life for Colbey Raye. After a year of being seizure free this past weeks event hit me harder then I imagined it would. In the moment, while she seized, I knew exactly what to do. It’s ingrained in me, I’ll never forget how to handle that situation in the moment! I can do that, it almost felt like second nature, I didn’t hesitate I was “prepared.” What I wasn’t prepared for was the effects that minute long seizure would have on me after the fact! I feel a little broken inside, a little bit confused, maybe scared? Possibly angry, and sad, but also hopeful. Hopeful it was just fever related and that the medication change isn’t a factor. I’ve cried inside so many times but I haven’t shed a tear. I want to break down, let out a good cry and feel better! But it won’t come, the tears won’t flow and when asked how I’m doing my mind is saying “I’m not handling it well” but my mouth says “I’m good!” Followed by a smile. When I write I feel comfortable, safe and able to let the inside come out more easily. I’m the strong one, I keep it together even when I’d rather not. I can usually pinpoint my emotions and I cannot. A battle within that I cannot seem to overcome. Through out Colbey Rayes little life I’ve felt so many emotions! But this one, this one is different, and I do not know why.



Adding to the album

Blank… I am feeling so many different emotions right now, my mind is racing with memories, swirling with thoughts, yet I feel blank, surreal and a little numb.

Wednesday we were sitting in neurology discussing how far Colbey Raye has come! How great she lookes, how she is more verbal than ever and how she has done so well weaning off one of her meds! Yes, Colbey Raye has made a huge step and has come off of her zonisomide all together and is now only on 3 anti seizure meds! Since Wednesday I’ve been meaning to get on here, post a blog bragging about how far Colbey Raye has come since my last post (it has been way to long I apologize) and tell you all about the medication weaning process, how we plan to continue weaning more Meds and what her therapists have been working on (we have some amazing new therapy routines that have help produce massive improvements). Let me just say it is a lot of great things and an abundant of information. But now, after today, in this moment, I cannot even bring myself to go there. I cannot search my brain for those wonderful glorious statements of aww and praise, of hopes and dreams and goals. My thoughts have shifted and a new battle burns inside.

I am in an all to familiar place, my mind is in hyperdrive and I know these feelings all to well. Like second nature, instincts kick in and I’m back to a state of mind I had hung up in the closet. Today I reached in, grabbed this old suit out and slipped into it, almost like I never truly left it. So why can I not bring myself to say what it is I want to say? I haven’t cried yet. I haven’t broke down, but I cannot seem to close my eyes or let my shoulders relax, a 5 minute flash back is in my head on repeat. In the moment I didn’t think, I acted, I didn’t hesitate I knew what to do! I was ready for this moment even though I didn’t expect it at all. But I am not ready at the same time. I cannot go into detail, I cannot let it out, I will hold it in as a memory until I am willing to accept it as a fact.

The dust has come off of   the album and I have a new photograph to add. A day that won’t be easily forgotten, a day I prayed would never come. 10/03/15 the day Colbey Raye had her first post hemi seizure.