Life is a little different when you are Colbey Raye

Before I start speaking what is on my heart, I want to say that no matter the struggle of having a special needs child, no matter the trials and tribulations I would never trade it. There has been so much love through this, so much learning and growing and an over abundance of joy that has come from Colbey Raye that nothing could make me wish for a different her, nothing at all! But, it’s a hard road to walk.
Home, comfortable with my three little kids it is easy to watch the days come go and fade away. We play, grow, learn and have such a great time being young and spending so much time together. Austyn Jayne, a crazy, chatty, busy three year old. Colbey Raye, a butt scooting, squaker, who loves to make everyone laugh and enjoys constant attention and to be the center of attention. And baby Beauden, just hanging out, watching, growing and trying to figure this whole world out! We go about our days as “normal” is for us and love it! Our normal is different than most, medicine here, appointments there, 3 kids in 3 years and a load of love! But it’s our normal and we have adjusted and have so much to be thankful for. But, at times, when other people’s normals flow in, and other children’s milestones follow the “typical” growing pattern I can’t help but feel a little sad inside. Not just for me, not just for Colbey Raye but also Austyn Jayne. I see pictures of little ones who are younger than Colbey Raye helping their parents bake cookies! They stand on stools, hold cookie cutters and are able to participate in these activities. Things a typical 18-20 month old should be able to do! But Colbey Raye cannot. She cannot run around and play, let alone stand up on a stool to help cut out cookies! She cannot follow the other kids up stairs and enjoy playing with them, instead she is gated off and stuck to roam the downstairs with the adults. When we hang out with the cousins that are the same age as Colbey, it is hard for me to accept that Colbey Raye is not at the same level. The ones I thought Colbey would be best friends with through life just continue to pass her by and instead seem to be closer to Austyn Jayne. I envisioned Austyn Jayne and Colbey Raye playing dolls together, plotting adventures together and running amuck outside as I watched from the side lines. After Colbey Raye’s diagnosis my tears blurred the lines and my visions became a dream, one I wasn’t sure would ever come true. But I have one amazing three year old. She is the best big sister, she includes her little sisters when others do not. Austyn Jayne helps Colbey Raye to reach things, Austyn Jayne shares her treats with Colbey Raye, and wants so badly for Colbey Raye to do good! She applauds her and defends her. Yes they are sisters and fight, and Austyn Jayne gets mad when Colbey Raye destroys her castles and pulls her hair! But in Austyn Jaynes eyes Colbey Raye is more than perfect, she’s her little sister and Austyn Jayne loves her for who she is! But Austyn Jayne sees the difference in Colbey Raye. She knows she’s “younger” and has always called Colbey Raye a baby. When those around us began to get older, cousins walked, friends talked they began to to transform into “kids” and no longer were babies to Austyn Jayne, but Colbey Raye remained a “baby” to Her sister. Colbey Raye has just begun to try to use a fork, and now that she has passed her swallow study we have explained to Austyn Jayne that Colbey Raye can now have “regular” milk. Finally, The switch! Austyn Jayne looked a Beau, and said “Beau can’t eat food because he has no teeth and is a baby right?” Right! So then she looks at Colbey and exclaims “Colbey Raye is not a baby!! She has teeth!” Austyn Jayne is right, Colbey Raye is not a baby, but Colbey Raye is.
Others do not see it, they do not understand. From the outside Colbey Raye is the size (maybe even bigger) of an average 20 month old! She says a few words, and blows kisses to everyone! She points and pretends to be shy, and people view her as “normal” until they realize I never set her down. Josh and I are asked almost every time we take her out in public if she walks. When we answer no, we then get “oh how old is she?!” She is 20 months. Then, “and she doesn’t walk?” Then we have to explain… I do not want to label Colbey Raye, I do not want to hold her back or treat her as if she is different! She is such a funny, happy spirit full of charm and spunk. She is unique in the best of ways and even though she cannot do what the typical 1.5 year old can she can do so much more and is so determined! As she learns and grows and learns at her own pace on her own curve I can’t help but be truly amazed by what she can do after all she’s been through. Would I trade it? Not in a million years!! But it is okay to feel sad at times, it is okay to think about what could be different, it is okay! Colbey Raye you amaze me, and you have blessed our growing family in more ways than I ever imagined one child could. The smiles you bring us are countless, and your personality will help you soar!

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.