Sunday, February 28, 2010

"From the Heart"

Sunday February 28, 2010
0719 Hours

Good morning to all.

It has been awhile since our last post. Not that there is anything wrong, quite the opposite. Darlene is doing very well.

We have been to see Dr. Arrogonte twice for pump titration and Botox injections for Dar’s arms, fingers and hands. Dar has been back to see Dr. Verma for a follow up visit to check her lungs and he has given her a “thumbs up”. He also wrote a script for Prednizone in the event that we might suspect something brewing.

This coming Friday, Jamie and Margie will be taking Dar back to Rehab to see Dr. Arrogonte for pump titration and with the help of Rod from Medtronic’s, Dr. Arrogonte is going to set up the bolace feature on Dar’s pump.

This feature will give a prescribed “boost” of Baclofen during the day so that Dar will have less “tone” and she will not have the side effects of the oral Baclofen we are giving her now.

We are excited to have this feature added. I had spoken to Dr Dawson about it and we thought it a good idea to present the idea to Dr Arrogonte. Amazingly, when I brought it up at our last visit, she was already thinking the same thing.

The last three week Dar has been fantastic, her attitude is great, when she is relaxed, usually just after she wakes up, she can speak a few words and even a short phrase.

Margie has been a very valuable addition to the team. Jamie is taking care of mom Monday-Thursday, Margie comes in on Fridays and every other weekend. After we have an additional form signed by Dr Verma we will get additional hours that can be assigned to and used for more help. I received a call last Wednesday from the State about our application for an IHSS waiver. It was a short telephone interview regarding Dar’s needs and limitations. The next step is the actual formal review. If we are granted this waiver, and it may still take awhile, we could get even more help around the clock.

The Dynavox computer has arrived and I have been able to spent some time looking into it’s software and programs. At this point we are lacking some important features, or maybe I have just not found them yet.

I have found the “access switches” and to my dismay there is not a “blink switch” of “mouth switch”. Wendy, from Dynavox is actively searching to find the appropriate hardware or software so we can continue with Dar’s training.

The actual programs on the computer seem to be geared more toward children and those that have their sight. Again, I am still looking and searching through its programs.

It has been very exciting these last three weeks having Dar home and so full of life. She is an amazing woman.

Steve and Tammy stopped by Sunday before last for a short visit; Dar was so excited to have friends stop by. We did get a scare from Maverick. I had taken all of his “jewelry” and bandana to give him his shower just as Steve and Tammy got here. Well, the little sneak, knowing he could not be heard snuck off and took a field trip through the neighborhood. We did not notice him gone for about 45 minutes. Well, this started a search for about an hour through the neighborhood. Dar was in tears, I was upset, Steve is driving all around the neighborhood, and Tammy is watching Dar while I drive around. Well I finally spotted the little “sneak” having a great ole time down the street running around visiting the neighbors. I just happened to get a glimpse of him as he darted across a driveway. Needless to say when we got him home and cleaned up, he goes nowhere without his “jingle jewelry” and dog tags Dar was very relieved to have the little “pud” back where he belonged.

There has been something weighing heavy on my heart, I have tried to sort out the feelings. I have spent hours trying to make sense of how I feel, am I wrong, am I being petty, am I just …………….. , I don’t know, but here it is.

If I have learned anything since December of 2008 it’s this.

Dar’s and my life at the time was like a beautiful mountain forest. Everything for the most part was just beautiful, we were healthy, have a home we both enjoy, work, and friends we love and spent time with.

Then, one day the unheard of happens, something so totally unexpected, so life changing.

A raging fire came through our “perfect” little forest and just ravaged our lives. It in many ways destroyed everything we have worked so hard for. This fire has changed our lives forever; it has “detoured” us and “derailed” us from what and where we thought we were going.

But as I look out the front window of the house we still have, the toys in the yard, the work I still do, the health we both still have, the marriage we still cherish, I ask myself, what’s missing?

I am so thankful, I have been so blessed, and God has shown me so many miracles. I have no reason, no right to feel the way I do sometimes, it is wrong, I’m being selfish, I being jealous, envious, petty, a whiner. I should not be missing anything but yet I am or at least I think I am.

My view of our “forest” has changed; the trees that we surrounded ourselves with are different. Some have been destroyed; some have died and gone to heaven. Some have just moved on.

But, as I look further into “our forest” I see some trees are still standing, not wavering and even as I look deeper I can see the “sprouts” of new, growing trees.

We miss our friends; you all mean so much to us. We love you all, and I apologize for this brief “pity party”, it is my hope that as I am given the chance to “pay it forward” I will bring honor to God and my/our friends.

At the end of the day, what do we have?

“Our faith, our family and our friends”

My prayer, my commitment to you my friends,

“I will do all in my power to be the best friend I can be to you at all times and especially when you need it most”

We love you all and hope you have a super Sunday.

With all our love,

Dar/Danny/Jamiesue

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