November 13, 2009
I must apologize to you, Dar’s faithful readers.
Since the passing of my father a mere 5 hours before I left to bring Dar home from the bay area, getting Dar settled at home for only a day and a half before heading to Enloe Rehab, for what has proved to be a very good thing, dealing with dad’s estate, working and visiting Dar on a daily basis, life at the Mardilla house is anything but quiet. In fact it is more chaotic, hurry-scurry, and totally without a moment to catch my breath.
Laundry to do, bills to pay, sleep when I get a moment, house to keep in order, dawg that wants attention, yeehaw, and I thought I did not like roller coasters, guess what, I’m on one.
Am I complaining, nope, not at all. This is my life; this is what I am supposed to be doing. God has been gracious to me too. He has given me the strength to persevere, to go and go like the energizer bunny, he has brought my daughter Jamiesue back into my life and given her a compassion and drive that I can only describe as “heaven sent”.
This young lady has spent everyday at Enloe with Dar since the day she was admitted. Jamiesue spends 8/9 hours a day, Monday through Friday learning and taking care of Dar. She is totally prepared and capable of taking care of Dar during the day when step-mom comes home. She too has been blessed by this ordeal and everyday I have the joy of seeing God work in her life. She has become quiet the young lady and I am so proud of her.
As I began, I so apologize for the gap in posts; I will do my best to be more diligent in keeping you up to date with Dar’s progress.
Okay, here’s what’s been happening since I last posted
As of yesterday, Dar’s pump has been turned up to 370mics/24 hours. She has been weaned off 3 of her medications. Dar is no longer taking the Sinamet, Dantrium and the Provigil. The Dantrium is used to reduce tone and spastisity and the other two were for alertness during the day. What this means now is that when Dar comes home she will only be taking her Keppra, for seizures, her Singular for allergies and her Zoloft. These will be the only pharmacy meds; all other meds will be over the counter. This will be really sweet.
Bolace feedings were started late last week. Bolace feedings replace the use of the “pump” and the need for Dar to have a continuous feeding for 20 hours a day. Now, we “pop” open a can of her supper 5 times a day and basically pour her “supper or breakfast” into her stomach through her “G-Tube”. When Dar comes home we hope to have our feeding and med schedule to a point where Dar will be ready for “lights out” by 10::00 pm. This new way of giving nourishment will big a big help.
Therapies have really taken off in the last few days. Dar is really working hard in each of them. She is spending a lot of time in her chair and finally enjoying it. We ran a spell recently that for some unknown reason Dar did not like her chair one little bit. We really have not figured this one out. I am just glad to see her back in it and having fun.
We have been, once again blessed in a special way.
While Jamiesue has been with Dar these many days, she has been training with a Hoyer lift. The lift is used to get Dar in and out of bed, to and from her wheelchair or shower chair. We have the same lift at home as does the hospital and Jamiesue does not like it at all. She does not feel safe, nor does she feel Dar is safe. Jamiesue asked my to please try to find the same lift we were both trained on at CareMeridian. Needless to say dad was on a mission to find an Arjo Trixie Lift. The hunt began and although I found a couple and only a couple they were all on the east coast and just recently sold. These lifts are very expensive and usually very hard to find, new or used. Insurance does not normally cover the cost of used equipment if it is not sold by a contract vendor. I had already made up my mind that I was going to find one and would pay out of pocket for it. Dar’s and Jamie’s safety are the most important thing.
To make a long story a little shorter, I found the lift we were/are supposed to have. It is the same as what we trained on, it is about a year and a half old, has battery charger, two batteries, manuals and even the same sling as what Dar was using at CareMeridian.
Unfortunately, we ran into a little problem, but once again God provide the answer. The lift is in Phoenix Arizona and the seller does not want to go through the hassle of shipping. “Come and get it and bring cash”, that’s what I was told. Okay, now what. I then remembered that I have two very good friends from Bangor that are working in the Vegas area, Linda and Les Rominger. Many years ago, I was fortunate enough to be part of the recovery and healing of their son Todd. Todd was the victim of an accidental shooting.
I was fortunate to be able to be part of many fundraisers with my DJ services from years ago. The Rominger family and I have been blessed to still have a very close relationship that they know I will be there for them at any time. Just say when and I am there.
I called Linda and asked if they might be able to help. Without hesitation Linda said that they would drive to Phoenix, some 5 hours one way, check out the lift, call me and go through the mechanics of the lift and if it measured up………..make the purchase and bring it to us when they come home for Thanksgiving.
Right now it is 0446 in the morning, Saturday, and Linda and Les are on their way to Phoenix. Dar’s Dream Team just grew by three, Linda and Les and Laura from Phoenix Arizona. Thank you all, you have made Dar’s life much safer and easier.
There is still more to tell you about. This should get your taste buds going and I am going to leave you with these great bits of info for this morning. I need to get a few things done before heading to Chico for the day.
Dar’s mom and dad, Diane and Roger are here for the weekend to see Dar.
When I return later today or tomorrow I will share with you some of the plans and thoughts that doctor has, Dar’s recent and upcoming Botox injections, and other good stuff. Stay tuned everyone and again I am so sorry for the long delay. I feel like a puppy dog chasing his tail.
God has been gracious to the Mardilla family. As we approach Thanksgiving, from Darlene, myself, Maverick and Jamiesue, we wish you all joy, happiness, love and peace.
More to come in a few hours’ folks, God bless and have a wonderful day. Linda, Les, drive safe and we love ya.
Dar/Danny
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