Thursday, July 2, 2009

Locking down the sleep walker!

This morning when I arrived there were sheets tied to the rails of the bed criss crossed over Haven and bed against the wall and Kris on the other side. When I asked what was up I was told we had a bit of a sleep walking issue last night.

Kris tied two sheets in a X over Haven but not touching her. So that when she started to get it up it would push her back down and he'd wake up. He didn't get to sleep until about 5am. She kept trying to climb over the side of the bed.

The nurses and doctors were concerned and have ordered a "tent" to go over Haven's bed. This will keep her zipped up in the bed at night. When it arrives I will share a photo of what I'm talking about. But I think this will definitely work and will help to give them both a better night sleep.

Dr. Cooke came to see us today - he is our Endocrine doctor. He was off for the day but wanted to come visit Haven and see how she was doing. He gave us an update on some of her labs that he ran last week. Her cortisol was a bit off but not at all alarming, growth hormone is just a tad under what it should be, and ACTH came back great and no signs Adrenal Insufficiency.

Our friend Sophia has been showing signs of AI and is being monitored for that now so I knew exactly what he was talking about.

I also talked with Julie for about an hour the other night about her meeting with Mason's doctor. They were able to talk to Haven's doctors about her treatment and how they came to the conclusion of what to use. It looks as though Mason may start on a testing program of many of the same medications Haven has tried over the past 2 years.

Thank you to all of our friends for constantly checking in on Miss Haven and sending her cards and gifts. We have been receiving the gifts but as of now we just can't bring them in. As soon as I can give them to her I will! :)

Love to all
M

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