"Baclofen Test Is Scheduled"

August 25, 2009
1834 Hours

Well here it is almost the middle of the week. The second week of school has started and the kids are settling into their routines. For me the added pressures of the kids return with all the projects I have going keeps me very busy during the day.

We have successfully added the “netbook” to Dar’s room. I used it twice on Sunday and have called at least once each of the regular work weekdays.

The audio works very well but we are having some difficulty with the video. Don’t know if it is related to the low pixel rating of the web cam, the distance the image is traveling or what. There is a definitive lapse between the time Dar says something and I actually see the image on the screen. It is like the audio and the video are not in sync. Maybe nothing I can do about it but if anyone has an idea please shoot me a comment. I guess the important thing is that Dar be able to still hear me on a regular basis and we keep her spirits up. We still work on our “tasks” and do our “chores”, I just have to remember to wait to see her reaction on the camera. I wonder if adding a USB Web Cam might have a better result. Someone talk to me. I’m pretty good with computers but this one is a little out of my league when it comes to Skype and web cams. Help me out.

Well, we are officially scheduled for the Baclofen trial test. We will discharge from Caremeridian on Monday and admit to Marin General Hospital, Dar will spend the night and have the Baclofen injection on Tuesday morning at 7:00 am. Evaluations regarding her tone will be done both before and after the injection. Dar will spend the night Tuesday and we hope to return back to CareMeridian on Wednesday. I am not sure if I will be able to stay with Dar in her room, if she will have a private room or what. If she shares I will not be able to stay with her due to HIPPA regulations. So at this point I will take a cot and a sleeping bag and stay in the truck if I need to. Probably could stay in the waiting room if need be, just have to wait and see.

You are probably aware that as of today I am very optimistic about this trial. With what I have seen since the increase of the oral medication I find it hard to believe that we will not have a good test result and move towards the implantation of the Baclofen Pump, something that could for all we know could give her back her mobility and allow her to move more freely. Please, prayer warriors, its time to go to work!!!!!!!!

I initially got pretty upset about having to discharge from one setting, admitting to another and then re-admitting back to where we came. I am somewhat better put still concerned about the whole thing. I have spoken to my Anthem Case Manager and she is doing everything she can to ease my fears. I wrote a letter to several medical people regarding Dar’s issues that I feel need to be addressed before she comes home. These issues to me are the very issues that need to be looked at and further evaluated before and while she is in a medical facility so that when Dar does come home she is at her “optimum” level and not needing a bunch of further test or evals. My case manager asked me to email this same letter to her so that she could forward and speak to the review doctor from Anthem and bring him up to speed on issues that I believe he may not be aware of at this point in time.

Folks again, I ask you and invite you to go see Dar. I realize things are a little up in the air at this time but when they settle down please if you have been at all wanting to go see her, please, please do it. Dar needs to see and hear your voices, she needs your encouragement, CareMeridian invites friends and family to come to see the residents, they encourage it, want it and it is part of the healing process. I’ve said it before and I will plead again, go see Dar.

Robyn Sousa and her merry band of friends are putting together something incredible. Robyn, Joe, Stacy and Jesse Sousa are dear friends of Dar’s and mine. We camp together, fish together and have become very close over the years. Robyn called me a few weeks ago with a burden on her heart to do something for Dar. Having just gone through something similar with a friend of both of ours Robyn saw first hand the things that come up financially that we often times don’t figure into the equation of bringing a loved one home that is going to require 24 hour care. Robyn asked me if I would object if she and her merry band of friends put together a fund raiser to help with those unexpected and always overwhelming costs that will surely arise. Even I, the one who has tried so diligently to think of everything did not think about things like pillows, a roll away chest to store medicines in, the plastic cups to dispense into, the syringes needed to administer the medication, the diapers and wet naps, the list goes on forever, these are just some of the things off the top of my head, the things that I don’t know if insurance is going to cover. Will it cover formula, will it cover linens, will it cover, will it cover.

Robyn is tentatively planning a huge event on the 12th of September. Depending on all things coming together this is when she would like to do it. If needed she will move towards an October “blow out”

She is talking about a huge yard sale, bar-b-que, live music, bake sale; raffle of great gifts, the list goes on. The event will take place at Joe’s Auto and Truck Shop in Oroville.

Dar and I would like to take this moment, this opportunity to say thank you to Robyn, Joe, Stacy, Jesse and Angel. We Love you and thank you and your entire merry band of helpers for what you are doing for Dar and I and wanting to “pay it forward”. The angels are dancing in heaven and I truly believe that He will bless each and every one of you.

Okay, now I’m losing it so I am going to post this for all to read. We love you all and thank each of you for your prayers, your monetary gifts for Dar’s bathroom remodel, her electrical outlets in the front room and just for being our friends. We love you all.

Love ya, good night

Darlene/Danny