4 weeks post op

Today marks the 4th week since Colbey Raye’s brain resection. It is amazing how time can slip away from us and the feelings from weeks ago still feel near and dear as if they were yesterday. The way I felt when we left her that morning, the way I felt when we first saw her that afternoon, will forever stay with me. She’s beyond amazing, her recovery has been wonderful in regards to healing, and she’s back to her smily go lucky self, and even has learned a few new “tricks,” such as screaming until she receives what she wants, spinning in a circle while sitting on her bottom, picking up food with her thumb and pointer finger and is back to clapping again! She now recognizes that I’m her mommy and when she’s tired or upset she wants me! She is still overly content with anyone willing to snuggle her but if she’s feeling hungry or is over tired she wants mommy or daddy loves. Austyn Jayne is such a sweet big sister, she wants to read to Colbey Raye, and snuggle with her and play with her, but Austyn Jayne does not enjoy how much Colbey Raye pulls hair! They have a big disagreement there 😋, Colbey Raye thinks it’s so fun, Austyn Jayne would beg to differ! Colbey Raye has discovered that finger food is amazing! She ate more this weekend than ever and loved every bite of it :), though she still wants to nurse ALL the time, especially during the night. But I try not to complain, I get snuggles, and loves and even at 2 am I can find pure joy in those snuggles. I wouldn’t mind a stretch of sleep lasting longer than 3 hours though :).
As far is the seizures go, we raised the zonisomide to help control the seizures and since then Colbey Raye has now been seizure free for 10 days! We are truly feeling blessed for this window, and are hopeful it will continue to last a while longer. Last week on Tuesday Colbey Raye received another MRI and on Wednesday we met with Dr. Ojemann to go over the results and discus what our next steps in better seizure control will be. Her MRI showed no extra fluid or abnormal swelling, all good news, but this also leads them to believe the seizures she has been having are not post surgery related and that she will most likely need to undergo a second surgery. Dr. Ojemann feels this period of time is another honeymoon phase so we are working towards obtaining all the needed information to plan for the next course of action. Tomorrow we head to Seattle for a prolonged EEG, and hopefully this will relay some of the information needed to help map out our next steps. The goal is to have as much information as possible before a surgery is decided upon as the best next option, again.
One step at a time, one moment at a time, trying not to blink, these days are treasures and before you know it the seconds pass and tomorrow becomes yesterday.



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