Seventeen Days

Haley has had a rough several days. Her fainting has gotten more and more frequent. She had another trip to the ER on Wednesday night (into early Thursday morning) for severe headache and continued fainting. It's so hard for her and so stressful for those of us who are around her when she faints. She is black and blue all over from falling on the hard ground. Can you imagine seeing your child constantly hurting herself and not being able to do anything to prevent it? Larry and I are on eggshells whenever she tries to get up.  My nephew, Michael, who is living with us, has been such a help to us.

We spoke with Dr. Henderson on Thanksgiving day, and he said he wants to see her "in an expedited fashion." I got an email this morning from his scheduler, and her appointment with him is December 18th. Seventeen days away. It seems like a long time. Hopefully it will fly by. Dr. H thinks that it's likely that her neck bones have shifted and that's the reason for the fainting, but he also said that it's more than likely two or three things all related to her Ehlers-Danlos syndrome.

We have a wheelchair in the house again, but it's emotionally hard for Haley to use it much. She says it feels like she's going backward to a very sad place. (I sure understand.) We have talked about putting a bed in the living room again, but she flatly refuses. It's too depressing for her. So, we have to escort her upstairs when it's time to go to bed at night.

We have been in touch with the leadership at our church, and are planning to ask for volunteers (again) to check in on her while we are at work.  Boy, it is so humbling and also such a blessing to be cared for like this. But we absolutely can't let her be alone. It's too risky. If she faints with her collar on, her face usually lands with her nose and mouth pressed against the floor making breathing difficult (or impossible), as the neck brace makes it impossible to turn her head to the left or the right.

Thanks, again for your love, concern and prayers for our girl and for us!