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I hesitate to know what to write about our sweet boy today.?? Just prior to Christmas, the Doctor transitioned Landen’s care to Hospice.?? Not because “all was lost”.?? Because medical science had reached it’s farthest limit and Landen could get just as good care at home (short of having to intubate him).??

This was a VERY hard transition for the Jolley family (thus the reason I waited until now to mention it).?? It’s hard to say where things stand right now.?? No one can answer that question.?? The last two weeks Landen has been struggling with increasing seizures and apnea.?? The apnea has been very severe and “rescuing” him has become very difficult.?? Ferris and Susie are getting little to no sleep as Landen has a harder time at night and they are beyond exhausted.?? They have a hospice nurse that has been great but still….a mama just can’t sleep through this stuff.?? Landen’s seizure alarms are going off all through the day and night.?? In the last two weeks the longest break between any seizures has been 4 hours.?? Last night, the alarm was going off nearly the entire night.??

Landen has also been sick.?? He had a chest xray today to determine if he has pneumonia.?? The test came back negative but he does have bronchitis.???? The obvious question in everyone’s mind and heart is “What now?”.??

Surgery is “out” for now.?? Because of his illness and bloodwork, he is not a candidate for surgery at this time and won’t likely be in “that place” of readiness for quite some time.?? In the meantime, the Doctors best advice was to keep him home and comfortable and enjoy every minute with him.?? I can’t bare to elaborate anymore on that.

There is still hope.?? If Landen can get over his illness and his bloodwork can come back looking better, he may still qualify for the surgery.?? One issue though is originally we were told he could have surgery IF he had at least an 11 hour seizure free window.?? He has not had this in a couple of months.?? If that is still going to be the criteria (which is questionable)…that may be the biggest hurdle yet.?? The bottom line is, Landen is in the Lord’s hands and only He can turn this situation around if He so desires.??

Over the last couple of weeks there have been glimpses of our sparkly little guy.?? On Christmas Eve he woke to Ty’s voice and was more awake than he had been in 3 weeks.?? He was smiling and interacting – not speaking – but clearly “with us”.?? I have pictures of him during those few precious minutes posted in the winter album.?? The man in the picture with him is our dear friend Brandley.?? He is my brother David’s best friend and??also a??paramedic.

This week, he woke briefly and his nurse got him to take a few steps.?? THAT was amazing too.?? Because he is kept so heavily sedated, it??has been difficult to know what’s going on inside his little mind.?? These moments – short as they are – let us know that (as Susie would say) “He is still in there!”

Thank you so much for your continued prayer.?? It means so much to the Jolley’s.