Sitting here holding my sweet baby it is hard not to think about what the future holds for her. What will she get to do, what will she miss out on etc… Today we went to the park and Colbey Raye got to enjoy swinging for the first time! She just loved it :).
She is just now strong enough again to hold herself steady while rocking, small pushes brought the biggest smiles to her little face! She is so full of joy it is incredible! She is strong and I know she will work extra hard to try and keep up with her wild busy big sister as she continues to grow, And I know Austyn Jayne will slow down to help teach Colbey Raye how to do these things. Colbey Raye will definitely be teaching Austyn Jayne patients, that is for sure 😊.
Today was a good day for Colbey Raye! She hasn’t had any seizures today that we’ve seen so far, the first day without a seizure in over a week. On top of the daily seizures she has been experiencing suspicious twitching spells that are in question. These “twitching spells” show signs that suggest possible seizure activity is going on, even though she is not having a visible true seizure these spells are very concerning to me as well as to Colbey Raye’s doctors. Another EEG has been ordered to see if we can gain more knowledge about these sporadic spells. They have been much less frequent the last 2 days, but still come and go occasionally.
Tuesday Colbey Raye gets another MRI and Wednesday we meet with Dr. Ojemann again and will go over the MRI results. We are still between a rock and a hard place as Colbey Raye’s doctor stated on Friday, our next steps are unknown right now and we are all questioning what should happen now. Yet again time will tell, and test results will hopefully help point us in the right direction. Controlling the seizures is still first priority, the question is how? A fourth medication, rufinamide (Banzel), is being considered, a second surgery has been mentioned, and we listen, consider, ponder all the options we are presented with, pros, cons, and try to decide what is best for our little girl. It is hard being the one to choose the fate of someone so small, helpless and precious, she is truly precious. Our time with her is precious, every smile, giggle, even her cry. I try to soak it all up, I kiss her and love on her constantly, I wish I could just fold her up and keep her safe in my pocket, protect her until this storm passes. But God has a plan greater than I can imagine, she’s his little one too, and He has blessed and entrusted me with her. This storm will pass,
2 Corinthians 4: 17-18
“For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever. So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”