Colbey Raye passed! And meds are being weaned

The girls are asleep, and the baby has me tied to the couch for the next fifteen minutes so I thought I would seize the moment and update all on Colbey Raye’s results from her many appointments over the last week! I will try to write another post about everything else going on in Colbey Raye’s life but for now I just have time to stick with the appointment results!

To start, let’s go back a week ago, Colbey Raye had an ophthalmology appointment to make sure everything is moving along well and also to check on the lagging/drifting episodes her right eye has been having. We all know that Colbey Raye suffers from Homonymous hemianopia (vision loss in the right side of both her left and right eye) causing her to have a severe visual field cut on the right side, but the lagging/drifting episodes are not related to her vision loss so we wanted to figure out the cause. Her eye drift is knows as Exotropia of the right eye, and this basically means that she sometimes does not use her right eye and therefore it wanders outwards similar to that of a lazy eye. Happens most often when she relaxes and is tired, but her ophthalmologist is not extremely concerned because when we try to get Colbey Raye’s attention or make a loud noise she can refocus and pull her eyes back together! According to Dr. H this Exotropia of the eye is not to uncommon among little ones, and is most likely related to the fact that her right brain is trying to put all the pieces together making up for the missing left hemisphere and quirky things will happen in the process. Mean while, to help the right eye stop drifting and to help bring it up to the same level of vision the left eye has, Colbey Raye now has to wear an eye patch for an hour a day. I am amazed at how well she keeps it on! It took a day of constant tearing it off, but now she wears it like s champ for the entire hour! Good job miss Raye!

Next up, her follow up appointments with Neurosurgery, Neurology, and a swallow study. All of these appointments took place yesterday and we are excited about the discussions we had! We were so happy daddy was able to come with us this time, it’s a lot different having a second baby tag along for all the appointments and Josh’s presence was so helpful!! Mind you, now that Colbey Raye has hit the “toddler” stage, she’s the more difficult of the two in these types of settings! Out perfect patient has become more of an impatient patient 😜, and would much rather be doing something other than listening to mommy and daddy talk to all the doctors about her! And she’d much prefer to be the one being talked TO! The appointment with Dr. Ojeman went great! He is happy and impressed with where Colbey Raye is at cognitively, and feels confident she will continue to learn and grow on her own curve, developing behind the pack, but still developing according to her “new normal.” He was a little concerned about the severity of Colbey Rayes poor circulation, he mentioned he has seen this before but never this severe. Other than watching it and trying extra hard to keep it warm (as we already do) he did not have any suggestions on what other options we have.

Neurology with doctor Owens went great as well! He has no concerns or worries at the moment and is thrilled that Colbey Raye is still seizure free. He is so happy with her progress and is now ready to start the medication taper! We will start with Zonisamide and a slow wean that will take about 6 months to have her off the Zonisamide completely. If this medication wean goes well we will start a second wean after Colbey Raye is one year post op. Gosh I cannot believe she will be 7 months post op on Monday! What a crazy wonderful thing 😊.

Lastly the swallow study… SHE PASSED! How much relief that brings is amazing! We will gradually take Colbey off of the thickener, and in about a month she will be thickener free and able to drink any no thickened liquid she pleases! We will have more options on how to give her her medications and broaden her liquid selection a little. We will have to watch her and keep an eye on her response to the i thickened liquids but we, and the doctor are optimistic that she will not have to return to using the thickener and will improve her swallowing day by day!

We are feeling blessed with Christmas season! And I am amazed by what a different season this has been in comparison to last year. Good new, happy news, amazing progress! And to think one year ago I was trying to hold our entire family together and prepare for one of the scariest days of our lives. 7 months post left Hemi, and we are creating up on one year since Colbey Raye’s first brain surgery! God is good, we are blessed, and Colbey Raye is one miracle baby! Bringing joy to our lives every single day.



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