May 2nd 2010
1550 Hours

As you know we started Darlene’s new medication yesterday, maybe I’m being a bit optimistic but in the last few minutes it seems like she is trying to say some words and making some vocal sounds that have long been missed.

Dr. D told me that we could start seeing some results in a couple of days once the medication was started. The medication, Amantadine is not an anti depressant; it is an “activating agent”. As I am told the most rare side effect is over stimuli.

I truly hope this will be helpful for Dar.

Peggy I have to say thank you for your words the other day. I really needed to hear and read them. I am glad that in John’s case it was effective.

I am so glad to read how well he is doing. We miss you all so much. I have so many vivid memories that are forever engraved in my mind and heart. Times of joy, sorrow, anger, humor, excitement and probably the most important of all love. The love of new friends made by accident but has grown to be life long friendships.

From our time together at Kentfield and then CareMeridian. Life long friendships with you the Murphy’s, the Spitzers and the Stewarts. I will always carry these memories with me for the rest of my life. Distance cannot take away these video pictures in my head. Please tell John how proud of him we are.

Darlene had a very short visit with Dr Darwin on Friday, everything looks pretty good and she wrote a couple of 90 day scripts, one for the Amantadine and one for a new breathing treatment medication that we will add to the one we use now. The new med is sorta like a steroid for her breathing.

Yesterday and today Dar got a special treat, she had some tapioca pudding yesterday and chocolate pudding today. She really enjoyed this “recreational” food. We will try to give her this special treat on a daily basis. The advantages to this are two fold; it gives Dar something to look forward to and also helps and assists her in her swallowing efforts.

Both are very important.

During my emails with Dr. D last week the subject of how I was holding up came up. Having to be honest I told Dr D that here of late I have been having my own difficulties holding it all together.

School coming close to an end for the year, the students being wound up tighter that an 8 day clock, all add to an already stressful day.

It was Dr. D’s very strong opinion that I need to get away for at least a week if not two, as far away as I can. Well, two weeks is impossible and doing anything before school gets out is also impossible.

I have decided that I am going to plan a week beginning June 5th to take the trailer and the boat to one of our nearby lakes. If it all works out I can use my lake choice as a base to do several types of fishing. It’s not about catching fish this time; it’s all about resting and filling or refilling myself.

I told Dr D that I am a strong, I want to do this, I can do this, I want Dar to be at home, I just have to face the hard reality that it is starting to take a toll on me. I know I have to keep it together in order to be the best for Dar.

If all goes well and I get all my ducks in a row, Jamiesue will move into the house and watch Dar during the day, Margie will do her Friday, weekend thing and Scotty, Jamie’s fiancé will help Jamie in the evenings and overnights.

Now the goal is to keep it all together through the month of May and the first week of June without loosing my marbles.

Certainly seeing Dar get more of her sparkling personality back will be a huge help. It tears at my heart to see her not feel well and not be able to tell us what it is that is making her feel that way.

Tomorrow I will be contacting Dr Spitzer’s office; Ryne’s dad has consented to reviewing all of Dar’s records, evaluations and videos related to her vocal cord and trach issues. If you recall, Dr Spitzer is an Ear Nose and Throat doctor. I am hoping he might be able to shed new light and possibly new ideas regarding Dar’s vocal cords. Maybe a new plan too.

We hope you have had a great weekend and we will keep you posted over the next days.

Love to all,
Dar/Danny/Jamiesue