Wednesday, September 16, 2009

Inquiring minds want to know

I was asked to give an update on Emma. I guess I don't do a very good job of keeping you up to speed on her physical condition. Frankly, I guess I don't realize how much her condition changes from day to day or week to week. When I do realize it I guess it's not one of the things on the top of my list of favorite things to talk about. With that said, I will try to do better. Emma is hanging in there. She is such a little trooper. She got a new hairdo yesterday and looks adorable, of course! We have a hospice group for children called Compassionate Care who sends a nurse out once or twice a week to check on her. Hospice for kids is a little bit different than hospice for adults. They only provide services for terminal patients, yet realize the child may have several more years to live. They are there mainly to make life easier for the family by giving support in whatever way they can, and to help make Emma as comfortable as possible. They are the liaison between all of the doctors and the family so that everyone is on the same page with meds and care for Emma. They are wonderful! Emma hasn't been doing liquids well at all for a while now. I was giving her Tylenol last night and she choked really badly. We have to mix liquids with baby food or thicken them with a thickener. She only eats pureed or baby food, and sometimes feedings are a challenge for her. She tends to hold the food on the roof of her mouth or her tongue pushes it out. She grows tired quickly, so her occupational and physical therapy sessions, teacher, eating, bathing and any other activity make her ready for a nap. Sometimes she sleeps well and other times not so much. Constipation is a constant battle. It seems she gets lined out for a day or two, then we go from one extreme to the other. Of course medications are a source of constipation, so they contribute to the vicious cycle. She can't sit unassisted, can't hold her head up for more than a few seconds and battles with spasticity where her arms and legs stiffen which seems to give her pain or discomfort. We have also learned just recently she has a very irregular heartbeat which is probably due to that part of her brain malfunctioning. Even as miserable as she sometimes seems, we still see an occasional smile, a slight grin or a sweet expression. Those moments are treasured. Thanks for your continued prayers.

1 comment:

  1. Thanks for updating us....i know that is not easy for you to talk about. We are always praying for Emma and you guys!!!

    ReplyDelete

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