A quick update on how our Elijah is doing. I know I dont post of his struggles often, or his current condition. Truth is we quite often see the ways in which Batten is affecting his body but choose to focus on what his spirit is winning in the fight. Today is his first day on oxygen, we hooked his pulse ox up to monitor how the oxygen changes his stats. This is as good as we have gotten, he has recently been running 74 on pulse regularly and while sleeping is keeping it up above that. His heart rate has been more erratic in recent weeks jumping into the high 120s and falling quickly down as low as 38. This disease continues to progress. We still fight seizures daily but are able to make it some days without rescue medicine only extra doses of other meds. Elijah still has days with a lot of sleep but some days he fights sleep and tries to stay awake all day. We see the toll this spirit takes and that is usually when we get a full day of sleep following. Still adjusting to new normals often. We covet your prayers and thank you for you commitment to our journey!
Posted on: Tue, 23 Dec 2014 17:30:32 +0000