January 23, 2010
12:22 Hours
I have to say that trying to find the time to do all that is needed has turned out to be a monumental task.
Since our last post Darlene has been doing pretty darn good. Although today she has a little bit of a fever. I am watching it closely.
We have taken Dar to Chico for calibration of her pump; she is now at a comfortable 273 mics per 24 hours. While we were there we also had our first outpatient speech therapy class. Since Dar found her ability to vocalize she actively works at saying all words. She is not always successful in her efforts, but when she does not get the word out she reverts to her famous laugh of agreement. On the day we saw Jennifer in therapy Dar was not able to get her word answers out so well, but her ability to answer all questions was fantastic. This particular session was to see if Dar would qualify for an alternative communication device called a “Dynavox”, it was clear by the end of the session that Dar would definitely benefit from this computer.We now move to the next step to find the right one.This may take time but we have begun our search. My Blue Cross case worker Camelia is on the hunt, go Camelia.
While we were with Jennifer I received a call from the office of Dr Amy Darwin. Dr Darwin will be our new primary doctor for Dar’s everyday needs. Unfortunately, Dr Darwin was headed home for the remainder of the day with a case of the flu. As this was to be our first visit with our new doctor and having to reschedule till the 28th of the month, we have found ourselves in a bit of a sticky wicket with regard to prescription refills. We contacted Enloe Rehab and Dr Arragonte graciously stepped in and helped us out.
In my opening sentence I refer to our monumental task. Jamiesue and I still find ourselves caring for Dar alone. Both of us are still fighting this nasty cold. We still have not heard anything definite from IHSS other than we will most likely receive hours for assistance, we don’t know how many. I guess this process can take up to a few weeks to finalize. At this moment we are about 45 days into our application, and are awaiting final approval.
So, as you can imagine, I find it sometimes difficult to find the time to sit down and put thoughts to pen. Up at 3:00 am, off to work by 6:00, work all day till 4:00, back home to care for Dar till 10:00pm when she is read to go to bed. As you can see it makes for a very long workweek, now throw in the weekend and Jamiesue is off that puts Dar in my care 24/7 till Monday morning.
You can bet that as much as I want to keep all informed, many times I find myself napping with Dar. I have gotten pretty good about “catnaps” in the recliner.
I may have to resolve to “hiring” some help either through our “home health agency” or other media means to find someone to assist during evening and overnight hours. Dar’s last feeding and meds are at 10:00 and then she is ready for sleep. She does not require a lot of attention but with her apnea I find myself getting up several times a night checking on her because she is setting her “sat monitor’ alarm off.
I hope if I have to resort to hiring “out of pocket”, that it would only be for a short time while our IHSS application and approval is completed.
If any of our followers have a suggestion or offer of thought or aide, I would truly be grateful. I knew bringing Dar home was going to be a big undertaking and I do not regret my choice but I do have to admit there are variables every day that can have a major impact on any given day or hour.
I guess if I were to be perfectly honest and forthcoming with a request it is this. (You have no idea how hard it is for me to ask for help). I/we, Dar, Jamiesue need someone that could be on call and fill in for Jamie if she were to get ill, this allows me to still go to work and take care of business, we need a person that could come in and just be here during the night a few days a week so that I can get some uninterrupted sleep. Weekends with Dar are a treat for me, I do enjoy them, but a weekend or a Saturday a month would go miles for my attitude and mental stability. A fishing trip with my buddies once in awhile would go a very long was to rejuvenating my spirit. Recently you may recall that I mentioned Margie, Margie is still hopefully going to be able to help out but she has had to take care of her own family with similar issues and is not available as of yet.
I was browsing Craigslist the other day and found it very interesting that for all the adds for day care and infant care, there were posting after postings for these services but did not find any adds for “companion sitters”, “ home healthcare assistance”, or the like. I know that when we are finished with our IHSS application it will be up to us to “hire” the person or persons from a list provided or find our own at which time if the “provider” is not signed up with IHSS there are a few small requirements that have to be met before wages are paid by the county.
None the less, and all this being said, if we are to get help in the near future I will most likely have to pay “out of pocket” as I am with Jamiesue. Please if anyone has an idea or suggestion please contact me through our blogsite or email me at: cntrydjpro@sbcglobal.net or call me at 530-693-0018. Any help you might provide will be and is greatly appreciated.
Ok, back to some of the good stuff Dar is doing. Every night we read out of a book series called Hank the Cowdog, just a silly primary grad series of books that have brought much enjoyment to Dar. A friend suggested this series of 50 books that Dar might enjoy. They were right; she loves to hear the adventures of Hank. In fact she has found a way on a nightly basis to let me know she is ready for a couple of chapters of Hank. Now you may think this a bit silly to be reading primary grade level books to a grown women but let me tell you, the rewards are priceless. To watch Dar follow the story line and even know what is going to happen before it does is something to see. She laughs before you get to the punch line in most case. The lightheartedness of this dog Hank and the way he tells his stories is just what Dar needs. It engages her mind, gives her the ability to react and comprehend, they are not heavy duty, just all out fun for her. I purchased books 1 and three from Barnes and Noble awhile back and borrowed book 33 from school. We have finished the first 2 and are on the last one. I had better find more in a hurry. There are 50 of them.
Well it is time for me to give Dar her 2:00pm feeding and take her temp. I truly will try to post more frequently but as you can see time is but a precious commodity in this house. Please forgive me, I want to keep you all updated and I know you look forward to hearing of Dar’s progress; I will try harder, maybe even if it is just something very short. DEAL, thank you.
Oh, one more thing, Jamie is taking Dar to Rehab on Monday to have her pump calibrated again, we will take her to 300 mics per 24 hours, nice and slow. This will be Jamie’s first solo trip with Dar and the van, she has said that she will have a co-pilot with her, and I think she will do fine. Normally we go together, but as doctor visits are popping up a bit more frequently it is good that Jamie get used to these adventures without me. I know she will do fine. Jamie has really been a great stepdaughter to Dar, and I am so very proud of her.
Please enjoy your weekend and pray that Dar’s fever goes down. Love to all and thank you.
Have a great day, with all our love,
Dar/Danny/Jamiesue
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