Macayla's Grace

I sat down to update this blog and was about to write how Macayla seems to have finally found some rest after staying awake most of the night. I was about to write how she finally sounded like she was breathing fine and didn't need suctioning for the thousandth time. I was about to write about how peaceful she looks. But she came out of sleep to cough and sputter once again. I just wish we could make it better.

She's had a better week overall. She's been on an every-other-week schedule with seizures and this past week was her week to have them. But, at the suggestion of our neurologist, we increased her morning dose of Clonapin to help control her myoclonic jerks. It seems that if we control these early enough she does not progress into full seizures. So, each morning this past week she would wake up with significant jerking and I gave her the larger dose of Clonapin. Within two hours her jerking would slow or stop and we saw no large seizures. But, she has struggled with drainage and mucus making it hard for her to breathe well. She coughs a lot and we have to suction often. We do not pull a lot out of her with suction machine and she seems to be choking on less material than normal. This may be a consequence of the Clonapin as it may be making her throat muscles more relaxed and less able to deal with the amount of mucus she normally can handle. It becomes a balancing act of controlling seizures vs. letting her have stronger throat muscles.

Still, we will take the good we saw this week. She smiles in response to our interaction with her. She will even coo and wiggle in excitement. Even now, she is smiling with Jennifer as she does some chest PT to loosen up any junk in her lungs. I'm watching them on the video monitor. Macayla's smile is such a sign of her grace. She certainly has limited understanding at this point, but she maintains that smile. I would not be so composed. But it reminds me of another kind of grace, the one Macayla gets her middle name from. God's grace. His unmerited favor and blessing. His grace is the only way our family makes it through this. His grace gives strength we do not possess. His grace not only saves us from our sins, but teaches us to avoid sin in the future. His grace is a promise of ultimate healing and fulfillment. His grace reminds us that we are not alone. His grace moves us and others to help one another. Macayla's name is a phonetic spelling of Michaela, the feminine Hebrew for "Who is like God". It is the name given to the archangel Michael in Scripture. Macayla's life is a reflection of God's grace and she too is a messenger of His grace. Thus, her middle name is fitting. Macayla Grace is certainly a reflection of God's grace, power and love.