Well...

It has been a surreal and long three days. Each day we did not think Macayla would make it, but she has kept going. Multiple times today, she stopped breathing for a couple of minutes only to start again. We really thought she would not make it past today, but she is within an hour of getting to May 23rd.

Today was her birthday. We celebrated it last night just in case she was not with us today. Pictures will follow soon. But she kept going. As the day has gone on, her respiration rate has dropped and her heart beat has become very irregular. In fact, it stopped briefly a few minutes ago, but then started again when she gasped. She has kept us guessing and she is fighting to hang on.

Some may read these words and think it is good she is fighting that hard and staying with us. It is and it isn't. We do not want to loser her, but watching her over the last 72 hours has been terrible. At this point, we want her to go home. We want her to be completely healed. We want the struggle and suffering to stop. We love her and have reassured her that we are going to be alright and she is too. Jacob has been handling things at his own pace and he gave us some indication tonight that he is handling things better than we thought. He's such a special man and I am so proud of him and Macayla. She has been his little sister in many ways, but she is his big sister and has really taught him and the rest of us so much.

Please pray for full restoration for Macayla. We know that will mean she is in heaven, unless, of course, God decided to completely heal her here. We'd take it any way we can get it, as long as she is restored. Barring any miracle, Battens is 100% fatal. Nothing we do now will change that. We just want her to be as comfortable as possible.