My dear family, friends and prayer warriors,
As you might recall, Nora started a 7-week steroid treatment a little over two weeks ago. We were informed that we would most likely know if this treatment was effective within these two weeks.
Here is an update for you:
Over the last 15 days we have actually seen an increase in Nora’s seizure clusters but these clusters appear less intense than those Nora was experiencing before the steroid treatment. It seems like these less intense clusters have left Nora with more energy which enables her to engage more freely with her environment; cooing with her parents, batting her toys with her hands and sitting up in her new play saucer. It has been a blessing and a joy to see her fueled by fresh energy over the past couple of weeks. Although we have seen some improvements for Nora, the neurologists made it clear that they were hoping for a better response from this treatment as the goal was to stop Nora’s seizures. Unfortunately it is impossible to predict how Nora’s seizures might evolve or what new treatment options we will be pursuing in the weeks to come. As a family we are trying to take each day as it comes. Some days are better than others.
Last night the on call neurologist explained to me that, “when we see babies with malformed brains like hers, we often see..…..” Of course the relevant information was lost as my mind froze on that one word.
God, it stung.
I got off the phone and whimpered to Tyler, “can’t he use another word beside malformed?” I started to cry (nope, don’t feel bad for me. I was long overdue for a good cry.)
Tyler rubbed my back and said, “Her brain is unusual Jess, not malformed.” Then he got down on his knees where Nora was laying on her play mat, rubbed noses with her and said, “You’re perfect, in every way.”
She loves eskimo kisses from Daddy.
I want to thank you all for your continued wonderful and faithful prayers. For those of you who have prayed against the negative side effects of the steroid treatment, so far Nora has responded well. She is currently healthy, her blood pressure is stable, her temperament is sweet and smiley and her appetite is hardy but not overzealous. Of course we know that all of this is variable. So we encourage you to remain faithful and pray for baby Nora and for our family in the weeks to come as we continue the steroid treatment and continue to explore treatment options. And as always, please pray for Nora’s developmental growth.
Blessings to you and yours,
Tyler, Jesse and Baby Nora
Photo credit: Jessica Rice Photography