Swallowing & Hallucinations

Dear Friends (old and new) & Family,

The past week or so has been a mixed bag. The nights are better due to the use of a new sleeping medication. Other than a few requests for water (small sponge to wet her tongue) Allie's been getting a pretty deep sleep until about 5 am. We hate the use of the strong stuff, but at this point sleep is crucial to her physical as well as emotional well being. It's always a toss up. The mornings continue to be rough. Allie wakes up every morning to find that her "condition" is not just a bad dream but real. She's sad and then complains of a stomach ache. She and I are talking more about the sadness. She refers to herself as broken and that she will never be normal. I tell her that it will get better and that it already has (although she has no memory of the first few weeks and can't imagine anything worse than right now). We both shed a couple tears and then talk about the goals for the day.

The last couple of days have been better than the week or so before. On Saturday morning she was complaining of pain and was agitated. So she was given a new medication (Klonopin). Her reaction to the med. was to have scary hallucinations for the next five hours. In spite of this she managed to let us get her into her wheelchair for some time outside in the fresh air.

Yesterday she had a swallow test. She went down to have a scan video taken while given fluids with dye in them. She did pretty good. She was cleared for small ice chips, teaspoons of juice and 7up. Her swallow is not quite strong enough yet and there is some residuals getting hung up, so a bit more work before she can sip from a cup or straw. She was less than pleased about that. She wants to drink a glass of water something fierce. I think a lot of the stomach pain is due to her only source of nourishment being liquid through a feeding tube directly into her stomach. It will be a day for celebration when she can drink and eat like the rest of us!!

She continues to have pain, though not quite as bad. She is on several pain medications including Neurontin for the "nerve pain" (thank you Katie for the heads-up-she's actually be on it for quite a while but I always appreciate anything you have to offer, just in case). Her time up out of bed and in the wheelchair is up to 3 hours now, which is awesome.

We saw a few smiles this last couple of days which is what keeps me going. She's been pretty bleak but sometimes when friends show up or she finds out one of her two favorite nurses is coming on shift, she'll show us that beautiful smile.

Ron, Adam and I continue to be incredibly touched by the support and help of our friends and family (not to mention the prayers from people we don't even know!!). Anjel went by the preschool and was blown away by the incredible baskets that have been donated for the Rally for Allie fundraiser (again thank you Stacy for putting this together). The generosity is not something I can even begin to adequately thank you all for. A special thank you to my boss, Curtis who has been incredibly supportive. As some of you know, I started a new job in February.

I feel in my heart and soul that Allie is healing. In time she will overcome her current disabilities. As always thank you all for the prayers, visits, meals, cards, donations, posters, pet care, wishes of strength, etc.

Love, Peace & Happiness
-Deborah