Posted (Tina) in All Posts on December-27-2008

Last night, Ella did not sleep well. She coughed a lot during the night and woke up several times. Her “numbers” did not look that great either. It was just a confirmation that she was likely accumulating fluid.

The nurse did not visit our home yesterday due to the holidays, so we did not have weight as a factor in determining if this was going on. But a higher heart rate and requiring more oxygen is pretty straight-forward.

So around 12 noon, we gave Ella a dose of Bumex (it has been 2 weeks and 1 day since her last dose). Within the next few hours, she had 2 large diapers. This just shows that she really did need the diuretic. For the rest of the day, she seemed in a good mood. We tried doing “exercises” with her, but she seemed like she knew that it was Saturday and didn’t seem up for it. It was like she was telling us that she wanted a break. So it became a lazy and relaxed day for the West household.

It was sunny outside and looked nice, but the temperature gave a clear reminder: 23 degrees. I long for the summer days when it is warmer and we can take Ella outside again. Heck, I long to be able to take Ella out in public places and not be so concerned about her health.

But we praise God for where Ella is right now. Looking back over the blog this morning provided a reality check. Ella has endured so much and has made so much progress over the past year. It blows my mind when I think of what a true miracle we have been given. And although the days can be tough, it is so worth it.

Galatians 6:9 (NIV)
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.