"Opps My Bad"

November 29,2009
1541 Hours

Nurse Julie was over today, part of our planned weekly visits. Dar is in good health, and continues her good spirits.

Julie plans on showing me how to replace Dar's "G Tube" in the event we had a problem or accidently pulled her's out. I learned that part of the Foley catheter can be used temporarily in most cases. This wil be valuable information to have.

Dar still continues to show some signs of Thrush, a common problem in infants. We have been treating it twice daily and are going to increase it to 4 times per day.

I really messed up this morning, Julie was supposed to take a blood draw for Dr. Garretson and dum dum me forgot that Dar was supposed to "fast" for 12 hours prior. I can't believe I forgot. I have only been reminding Jamie for days, and then I forget. My bad!!!

Julie will stop by in the morning around 10:00 and try again. I won't forget this time.

Kerry, from Carpets Galore stopped by around 5:00 yesterday and we pulled a section of the carpet around Dar's bed to find what we were hoping for. The most beautiful origional hardwood floor, I know now that it goes throughout the whole house. I cleaned the area this morning and tomorrow in the am one of Kerry's staff will be out to but the metal carpet edge down. I was really pleased to see this beautiful floor.

Apria medical will be out also to replace Dar's matteress with a 12 inch "low flow" mattress and compressor. This will be a good switch as the mattress we have now is not tall enough to allow the standard heighth of the bed to go high enough for Jamie and I to comfortably attend Dar.
We will also be taking a trip to town to have Dar's chest x-ray.

Jamie is spending the day in Butte Meadows hunting for a Christmas tree, I hope she has a good time.

Dar's sister Diane called from Oregon using her new Skype program and had a good time with Dar. In fact Maverick had fun too, he got to see Dar's cat Lizzy on the computer and all but tried to climb into the silly screen to get to Lizzy, was quite funny.

Well I hope you all had a great weekend with friends and family over the holiday

Take care and we will talk again soon,

Love to all,

Dar/Danny/Jamiesue/Mav

"A Taste of Our New Life"

11-28,2009
0400 Hours

Good morning to everyone,

I promised some days ago that I would try to be more diligent in reporting Dar’s progress. Little did I know that when I made that promise just how hectic things could be around here?

Since Dar’s return home Jamiesue and I have been so busy that we hardly have time to catch a breath. We have had equipment issues, beds that don’t go high enough so I have to build pedestals for the legs, a foley catheter that decides to leak so we have to have the Home Health Nurse come out and place a new one, only to return two days later cuz it appears that Dar was having “bladder spasms”. “That scared the crap out of me”.

Jamie and I have been arranging Dar’s suite to best accommodate all her new equipment. Putting this here and putting that over there, we have probably changed the front room around 16 times before we finally got it close to right. I think Jamiesue probably thinks her dad is just a little “nuts”.

Dar’s lift is in place, ready to be used when needed, in fact we have used it several times already and have found that with a little help from our friend Kerry at Carpets Galore in Oroville it will work even better. Kerry is coming over later this afternoon and he and I are going to take a section of carpet directly around Dar’s bed out and expose the natural wood floors of this house that was built in 1959, I hope the floor is in as good of shape as the two bedrooms. If so maybe just a little polishing and we will be good to go. If not Kerry suggested a section of floating laminate.

The tilt table, generously donated for use by Ryne Spitzer’s mom and dad, raised to a 30-inch height by Phil Atchison is placed and ready for use. The new 4x7 mat table, designed by me to go over the antique coffee table was built by Better Builders Inc and upholstered by Ernie’s Custom Upholstery has become Maverick’s new bed and “crows nest” for watching out the front window was delivered on Thanksgiving Day.

A typical day, if there is such a thing for me begins around 1:00 am when I arise to the first of two alarm clocks. At 1:00 I get up and reposition Dar and check her splints and make sure she is comfortable. At 4:00 am when the other alarm goes off I arise and yet again reposition Dar and check to see that she is ok. Normally 4:00 am is my usual time to get up, although for the last 11 months it seems that it can vary from 2:30 to 4:00. At 5:00 am I give Dar her first bit of nourishment, she is fed 5 times a day at 4-hour intervals. At 6:30 Jamie arrives and it is off to work for me.

Sounds fairly simple, doesn’t it. Boy, were we in for a surprise. All it takes is just one little hick-up; one little unexpected surprise and we are running around like chickens with our heads off. Jamie is responsible for many of the daily things we would normally do without a thought. Teeth brushing, hair combing, getting dressed, using the bathroom, showering and lastly getting Dar in her chair so she too can enjoy the day.

I have to say that my hat goes off to Jamiesue; she has and is the “rock” around this house. She has stepped up and taken the “role” of “caregiver” for step-mom very seriously and quite frankly is amazing.

Thanksgiving Day I have to say my daughter saw a side of her dad that to be honest sort of hit home for me. Jamie, I now know has always believed that her dad could do just about “anything”, well, I have to admit she saw her dad totally loose it and get absolutely frazzeled over something as simple as changing Dar’s britches. Yep you read correctly, changing britches.

I remember Jamie as an infant, changes britches was no big deal, a cakewalk. Well the other day changing Dar was like an elephant in a clothes closet. I could not get a handle on the process to save my life, I new the basics, I knew how it was supposed to work, but for the life of me I could not get it. It was like I had tree stumps for hands, I could not get that silly thing on, or at the least in the right place. I ended up calling Jamie in my frustration. Steadfast to a tee, Jamie got me calmed down, walked me through it, and I still could not get it right. You have to remember, here I am with Dar in a totally uncomfortable position, worried about all kinds of things and I can’t get this silly thing on right. Jamie dropped what she was doing and came over and pulled her dad out of the fire and gave me another lesson in the art of “britches”.

I guess, up till the other day, I never thought my daughter looked at me as “my dad can do anything”, made me stop and think a whole lot.

Back to our story;

Jamie works till I get home about 3:45, Monday through Friday, Nights and weekends belong to me.

The changes we have seen in Dar make all the “hiccups”, all the “monkey wrenches”, all the “opps, I was not expecting that” worth it. Dar is so happy to be home, back in her own house, those two things alone have made a world of difference in her attitude and recovery.

We have been able to find new and different ways to communicate, I am learning her sleeping habits, her awake times, her signals that she uses to communicate with us. It is a never ending, always-different journey. Never routine, never like the day before and always and I do mean always, a joy to be around.

We traveled to the doctors the other day in the new van and Dar had a great time being out. Her doctor ordered up a chest x-ray and a blood draw. We will get the x-ray this next week and Sunday Julie from Home Health will do the blood draw.

Occupational Therapy was out yesterday and worked with Dar for about an hour. Jamie and I learned some new things we can do to help Dar with her “tone’ issues in her arms. Ms. Merlin was very nice and worked with quite conversation to Darlene.

Speech Therapy comes out today just before Kerry from Carpets Galore gets here to remove the carpet. It will be exciting to see what this new therapist has to offer to the game plan.

I may try to work with Dar on the mat table at some point today and try out the new foam wedges that we got from Square Deal Mattress Factory in Chico. I remembered some of the pads and wedges that were used for Dar at Caremeridian and had them duplicated for her to use in her gym.

We did get a bit of great news the other day. I received a letter from the Calif Dept of Human Services that stated that Dar’s Medical benefits were being reinstated. You may remember that she lost those benefits when she came home because “my income and resources” were too high, and because she and I are married, she would not qualify for continuing benefits unless she stayed out of the home. Well you know how that went over in this house.

It was these Medical Benefits (Medical is required) that would have enabled us to apply for In Home Support Services that would have and ‘do” provide additional help in our home based on the needs of the “client”, in fact this program would pay for Jamie to take care of mom, it would help by paying additional assistance at night while and so I can get some rest.

Well, one of the things we are doing and applying for is a wavier that would separate Dar’s income from mine, problem is that this application could take several months to clear and there is no guarantee. In the meantime I got this letter stating that Dar’s benefits, (not payment), were being reinstated until further notice to the contrary from the State or the County. By reason of a class action law suit and Dar’s benefits were taken away Dar is now considered a “beneficiary” of that lawsuit.

What this allows us to do and we have started, is to apply for In Home Support Services” for Dar. This process too can take several weeks but the doctor can backdate it to the date of signature.

This additional help is so important to us. Right now, because of all this “crap” as I call it, Jamiesue and I are the only ones taking care of Dar. We are both tired but realize this is the choice we made for Dar to be back in her home with loved ones and her own things around her.

Even a simple thing like a “companion sitter” during the night for a few hours while I sleep could be covered by this program and such a big help to our family.

Well, now you have a little taste of what our day is like.

God has been so good to us during this ordeal, so many blessings, so many things to be thankful for, so many people helping in whatever way they can, new relationships made, new friendships. As I write I feel as if there is really nothing I have a right to complain about. I have so many blessing to be thankful for and so many good thoughts and miracles to remember.

That said, to every one of you, Darlene and I thank you from the bottom of our hearts for what you have done for her and even myself. We look forward to seeing you at the house, she wants to have visitors, she needs to see and hear her friends, she needs to make that connection with all of you and I guarantee you it will be a blessing to you. You need not fear, you need not be worried, Darlene is so acutely aware of all that goes on around her and can participate in practically everything. She is beautiful, aware, and still Darlene, come see her soon………………she would appreciate it, and love it

As we say on Facebook…………….TTFN,,,,,,,,,,,Ta Ta For Now

We love you all,

Dar/Danny/Jamiesue/Mav

Darlene's new equipment,


New mat table, delivered today, built by Better Builders Inc, upholstered by Ernie's Custom Upholstery, Oroville Calif.

Arjo Trixie Lift, picked up by Linda and Les Rominger in Phoenix Arizona and brought home last weekend.

New tilt table, donated for use by Dr. Mark and Tammy Spitzer and son Ryne, height raised to 30 inches by Phil Atchison, thank you Phil and Christina.



The list is way too long to express how thankful we are to have Dar home. The joy she shows daily is infectious, hears my alarms at 1am and 4am, the floors creak and greets me with a smile cuz she knows I am coming to attend her. Maverick is sooooo attentive, sleeps with Dar every chance he gets. We are watching/listening to the Macy's parade this morning. . Happy Thanksgiving everyone.We love you all,

Will post more in the morning when Jamiesue arrives and I can spend more time on the computer.

Love to all,

Darlene/Danny/Jamiesue/Maverick

"Back from Merced"

My trip to Meced was great!!!!, van is beautiful, tilt table is still in wrapping/packing paper. A big thank you to my insurance agent Micheal Reilley, Mercury Insurance Chico, for going with and driving back again. Luv ya bro, Tammy, Mark thank you again for the table it is going to help so much,it was so good to see you both. Ryne looks great, your home is beautifull. Can't wait to take the new van and bring Dar to see you all. David Hooker, Fresno, thank you for the van, Randy Smart (relation), thank you for negotiating the price. Most of all thank you Lord.

Will post again later, my night shift with Dar has started, I'm pooped but doing well.

Love ya
Dar/Danny/Jamiesue/Mav

Ps.
Jamiesue as always, I love you, thank you for covering my Saturday, your the bomb!!!!

Headed to Merced tomorrow to pick up Dar's tilt table annnnnd her new wheelchair van. God has blesed us yet again, a beautiful 2001 Ford E150 Chateau ADA van, Dar will be much safer and Jamiesue will be able to transport to appointments and I will be saving my back not lifting Dar in and out of the Duramax.

Will keep you posted,

Love,

Dar/Danny/Jamiesue/Mav

"Not jusrt coming home......Dar is home!!!!!""

Nov 19,2009

This post was written this morning but just posted, as you can see Maverick has take his "sentry" position. Way to go Maverick!!!! Mom is home yeeehaw.

Darlene is coming home this afternoon, what a Thanksgiving blessing this is. Have to keep this short this morning, but wanted to also tell you this.

We just,last evening, have accquired a tilt table for Darlene, courtesy of Ryne's parents Dr. Mark and Tammy Spitzer. Now we have a full gym, mat and tilt tables. Next step is to figure out when I can get to their nome town of Merced while I am on Thanksgiving break from school. Boy will Dar's therapists be impressed. Thank you so very much Mark and Tammy. Love to all of you, hope to see you next week sometime, maybe Friday?????

Also, a message to Christy and Dennis, we would love to have you come see us soon and maybe spend some time with the "little whipper" sometimes know as "snicker puss".

I will be home tomorrow and probably Monday as Dar has her first regular doctors appointment on Monday afternoon. Her new primary physian is the one that found the blockage in Dar's ling and removed it allowing her to breatrh on her own way back in December of "08". Blessed once again to have Dr Garretson on the team, he is also a Pulmanry Specialist, again another blessing and miracle.

Love to all and I will write again very soon.

Love, Dar/Danny/Jamiesue/Mav

Yes, we are coming home tomorrow"

November 18th 2009

Dar continues to do well medically, her pump is now up to 450mics/24 hours.

We learned yestrerday that we might be headed home tomorrow afternoon. I believe Dar is ready and wanting to get back to her familiar suroundings.

We are having a new "fully" electric bed deliverd today. The semi-electric was just not cutting it. It would not raise high enough for Jamie and myself without hurting our backs. We too have to remain safe and healthy.

Dar's new wheelchair will be deliverd on Friday from the bay area. Her chair is built specifically to Dar's needs and size. We have been using a loner from the manufacture. This new chair will be a big asset to Dar's comfort.

Yesterday I stopped by our local medical supply house looking at inventory they have and asked about a "pulse-ox" meter. Shelia had several types but told me that she had something special I might be interestd in. She had some used, very high tech meters that would not only accomodate Dar's basic need for the meter, but would also gather data that we could download to our computer giving us information about her heart rate and oxygen levels at night while she sleeps. This could be invaluable information with regard to her sleep apnea. These machines are very expensive when purchased new and I am thankful to Shiela that we were able to purchase this unit for less than the price of a new finger monitor. Yes, another blessing and miracle.It may be a year or two old butt works very well and parts are readily available.

Well I will post again soon, must get off to work and prepare to have Dar's new bed delivered about 10:00 am this morning.

Dar's new Trixie lift will be here mid-week next, and we are very much looking forward to this piece of equipment.

Please keep us in your thought and prayers. To all of our frioends and loved ones, we love ya all.

Dar/Danny/Jamiesue/Maverick

Ps, post update.

We just this evening have accquired a tilt table for Darlene, courtesy of Ryne's parents Mark and Tammy Spitzer. Now we have a full gym, mat and tilt tables. Boy wil Dar's therapists be impressed. Thank you so very much Mark and Tammy. Love to all of you

"Thanksgiving is coming, We have been blessed"

Sunday, November 15, 2009
0448 AM

Good morning everyone. As I promised, I am trying to be a little more regular with progress reports on Dar.

Yesterday Dar was in a fantastic mood. Her mom, dad, sister and brother in law arrived just prior to my arrival at the hospital. Diane and Roger had stopped by briefly on Friday to see Dar for a moment before retiring to their motel.

Dar’s attendants had dressed her and Jesse was getting Dar in her chair when we all arrived.

We strolled out to the front lobby and everyone visited with Dar. Stories were shared and laughter abounded as Dar recounted in her mind many stories of childhood, marriage to a goof ball like me and thoughts of going home to her own house and surroundings.

We took a tour of the facility and ended up in the dining hall. Roger found a piano and began a concert in Dar’s honor. The room is very large and without acoustics, Roger’s attempts to play quietly failed and his sonnets could be heard throughout the facility. Dar sat in her chair in quiet contemplation of the “tunes” Roger played. With a perfect grin on her face, a gleam in her eyes it was clear she very much enjoyed Roger’s recital.

Dar’s dad found an area of the dining room devoted to jig saw puzzles so we lost him for a while during the concert.

Dar had been in her chair since about 9:30 and about 12:15 she began to show signs of being uncomfortable, so off to bed we went. I put her back in bed and removed her hand splints for an hour and all was good in her life again.

Dar’s family went to have a bite to eat and returned just as Dr. Park arrived to check in on Dar.

He asked me if Dar had received her Botox injections in her arms on Friday. I told him that Jamiesue had texted me about 3:30 Friday and informed me that she had indeed received them. When I arrived on Friday Jamiesue also told me that there is discussion about Botox for her legs, Dr Park added that there may also be injections for the feet and toes before Dar comes home. It will be 10-14 days before we see marked improvement in the arms. When we do, the injections should last about 4 months.

Dr Park calibrated Dar’s pump to 390mics/24 hours, she had been at 370 on Friday morning.

It is comforting to me as a loved one and caregiver to see Dar in so much less pain. The pump has been such a great asset to Dar’s recovery. Although it is not a perfect fix, nor is it a fix that reduces/relieves the “tone” issues 100% of the time, it is providing Dar a level of comfort that allows her to focus on healing in other areas 100% of the time.

I knew that we might not see the “robust” rewards to her upper extremities as we do to her lower, it is very obvious that Dar is in much less pain and discomfort in her arms, neck, hands and fingers. With the Botox injections to her arms I pray that Dar will see additional relief, especially in her hands and little fingers. They are better but there is still much room for improvement.

During conversation with Dr Filbrandt on Wednesday, he talked about possible weaning of the trach. Botox was also lightly discussed for muscle relief in the area of her vocal cords. This might allow Dar to use her vocal cords better thusly allowing her to speak better and more often. A very short test of Dar’s breathing will show if there has been any improvement to her “vocal cord spastisity”. By putting a O2 saturation monitor on Dar’s finger and simply capping her trach will show if there has been improvement. If prior to “capping” Dar’s “sats” are in the upper 90’s and upon “capping” and Dar having to breath with her mouth and nose, if her oxygen saturation level falls or starts to drop, we will know that her vocal cords are not opening as they should to allow her enough air to her lungs. If this were to happen as it has in the past, we would know that “trach removal” would not be a good idea. I pray there has been improvement.

Another positive note is this. We have successfully got Dar on a feeding schedule and med schedule that has all meds be given only once a day. Dar will receive her meds at 10:00 in the morning. As I told you yesterday we have eliminated 3 of her meds that were given at various times of the day. This is an exciting accomplishment.

I shared with you yesterday of my dear friends Linda and Les Rominger. Linda called yesterday about 10:00 in the morning to let me know that they had made it to Phoenix and had loaded the Trixie lift and were headed home, back to Vegas. Needless to say I was a little shocked when I heard this news, only because I though that they would call to ask questions and maybe ask for a lesson in how it worked. When I asked if the lift was all that I had hoped for, Linda said that it was “perfect” and in “pristine” condition. Laura, the seller was charging the battery pack and Les was able to work the lift enough to know that it was in perfect working order.

We will pick up the lift during the Thanksgiving holidays as Linda and Les will be returning home to Bangor to be with family for the holidays.

Again to Ms. Laura, I/we so appreciate this lift and thank you so much that we were able to purchase this from you. May God bless you and your family this holiday season. Darlene, Jamiesue and I wish you much joy and peace this holiday season.

It is now 5:45am, time to get showered and ready to return to see Dar, I hope that Dar and her family had a good continuing visit yesterday after I returned home. I could tell that they were very happy to see Dar in great spirits and happy to be closer to home and family. In the time that we were all together yesterday, Dar was “spot on” and it was nice for me to see the joy and happiness in her family.

Dar and I thank you all again for your prayers and support, as we get closer to the holidays, it is our prayer to all of you that you have a wonderful and joyous time with friends and family. For those with loved ones serving in our Armed Forces, we thank you and ask for special blessings for you and your family.

For those that might find themselves in situations similar to that of the Murphy’s, Spitzer’s, Reimer’s, the Farris’s family, the Stewart’s and us, we wish and pray for all of you a very special blessing from God. We love you all,

Dar/Danny/Jamiesue

"Yes, I know it has been awhile"

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

"Pump at 290mics/24 Hours as of Tonight

November 5, 2009

0430 Hours

Darlene continues to do well. It appears that we have had our stay extended another week. Not confirmed to me, but that is the rumor.

Pump titration is up to 280mics/24 hours. We started seeing noticeable results in Dar’s upper and lower arms and some small results in her fingers at 270mics. That was the day before yesterday.

Sinamet, used as a neuro stimulant has been stopped. It was the opinion of Dr Park that it might be having some affects that caused Dar to remain sleepy and too laid back. The life span of the med is about 3 hours, getting the med at 7 and 12, Dar was not getting bright eyed and bushy tailed till about 3-3:30. We notice an immediate change after reducing the med by half. Dar is currently not taking the med and is more alert and participatory in her therapies.

On Tuesday Dar stood in the “Standing Frame”, (which she hated at Kentfield) for 12 minutes. I am told she tolerated it very well.

Jamiesue has been at “momma’s side every day learning all kinds of new things that will help her as she takes care of Dar during the day when she returns home. I am so proud of this young lady and her commitment to Dar. Having gone through her own struggles in the past, Jamiesue has become not only a wonderful, thoughtful person she too is a testament that miracles happen everyday and God is alive and well in her life.

Last night at 9:00 pm, they started Dar on a new feeding schedule and technique, ikt is called “bolas feeding”. If all goes well, Dar will receive her food directly through the “G Tube” at specific times of the day. If she handles the transition well she will get food about 5 times a day thus eliminating the need for the “pump” and the tubes that go with it. This could be a big plus in her daily care and when we choose to venture out to see friends and family or go camping. No more need to bring the pump, the hanging tree for the pump, and no worries about power of re-charging the batteries on the pump. Just crack open a can of “supper”, pour it through the G-tube and away we go, kind of cool, huh.

Tomorrow I will be taking the school kids on a trip to Redding’s Turtle Bay, I am soooo tempted to take the fly fishing gear and walk about 100 yards to the Sacramento River and see if I can catch a big ol trout. Last time I was there, just before Dar’s accident I caught a couple of nice ones. We’ll have to wait and see how things go.

A rain front is headed our way and we certainly need the water.

Our prayers and joy go out to the Murphy’s as they prepare to bring John home in just 5 more days. Go John!!!!!!!

Tammy, Mark, Ryne, Nikki, Cayle, we think of all of you everyday and continue to pray for Ryne. We miss you all terribly.

Bonnie, glad to hear Ken continues to make progress, please call or drop a line sometime.

Latosha, how the heck are you and your parents doing? Let us know.

Have a wonderful weekend everyone, talk again soon,

Love,

Dar/Danny/Mav

"250mics/24 Hours"

CareMeridian's

Nurse Lissa

CM Director, Anne-Marie (Angel), Attardi

Love you all,

Danny

Titration on Dar's pump continues, she is now up to 250mics/24 hrs, starting to see small positive results, attitude and personality are fantastic, visitors encouraged, Rm 808b, hand splints ordered, lots of attention, finding her way into all the hearts that meet her, being weaned off one med that could be affecting her alertness, I cannot express how thankfull I am to Dr Giab for making this happen.

Lots of attention being given to swallowing, it is hoped that we can move towards Barium Swallowing Test to see if there has been improvement in her ability to protect the airway and maybe be able to give Dar special treats on ocasion.

O/T is moving toward splinting Dar's right hand to aid in relaxing her finger tendons, they are severley wanting to close and we to address this.

Speech has noticed that in addition to Dar's extremity tone she is even expierencing tone in her facial muscles and the neck. This will be addressed strait away. We hope that with the pump titration and lessoning of her body tone her neck and jaw muscles will follow, thus, vocalizing should improve.

Stay tuned, exciting times ahead, I/we are soooooo glad to be back home. We love you all.