Hannah has REALLY grown up in the past year! She is an absolutely amazing little girl. She is quite strong-willed! We’ve gotten in trouble in preschool a few times, because she is so independent and she wants to do her own thing. So we’ve been really working on following directions! She has improved leaps and bounds, and hardly ever has any behavioral issues anymore (at least in preschool). We’re still working on following directions at home. 🙂
Her problem solving skills are simply amazing. She has such focus, such determination, even with the smallest of things. Her latest challenge has been to figure out how buttons work. She will sit on the floor for an hour buttoning and unbuttoning her shirt. She is infatuated with the moon. Every night, I’ll take her outside and we try to find the moon and the stars. The first star we see, we break out and sing “Twinkle Twinkle Little Star”. Such priceless moments shared with daddy!
Her last checkup in February was the best yet! Her shortening fraction has increased to 41%! PRAISE THE LORD!!! Her cardiologist wants to go ahead and begin weaning her from her meds again. This time, it will be over the course of 6 months. Last time we tried to wean her meds it didn’t work out so well — we ended back up in PICU getting back on Amiodarone. We’re praying that the more gradual weaning process will be more successful. Of course, it doesn’t matter if it works or not, we know that God has a plan and a purpose for her life that we WILL see come to pass. We’re a month into the weaning process. She’ll wear a holter monitor sometime in May to make sure she’s not having any arrhythmia breakthroughs. All her enzyme levels and bloodwork have continued to be great. There are a couple of enzyme levels that are slightly elevated, but nothing serious enough to alter her medication or treatment. Thank you Jesus!
Another amazing thing about Hannah’s story… When Hannah presented with Dilated Cardiomyopathy, we were told that the only two things it could be were a virus that attacked her heart or a genetic anomaly. Nobody ever thought it could be caused by an arrhythmia. Since Hannah’s diagnosis with the arrhythmia, her cardiologist has caught 3 MORE CASES of Dilated Cardiomyopathy caused by an arrhythmia! So instead of spending months in PICU potentially waiting for a heart transplant, these babies were able to be immediately put on the same Amiodarone/Propranolol medication, and they all went home within a week! God is using Hannah to save the lives of others. We are seeing Hannah’s miracle multiply before our very eyes!
God continues to amaze us as we believe for her TOTAL HEALING! Please pray over the next few months that the weaning process will continue to be successful, and that the arrhythmia will be GONE FOR GOOD!!!