Tuesday, January 15, 2013

Day 72 Fish Oil Study and Frustration

Selah had a really good day today.  She did therapy out of her room and was relaxed.  Her doctor wanted to go up on the Bacifin (it relaxes her muslces) and she did by .5 and it made a big difference in Selah's arms and right leg. She is sleeping so nicely tonight.  But she had a really busy day and she was alert all day so we aren't worried that the med is making her sleepy.

Tomorrow the dose of Ritalin is being doubled. We have not really seen any signs of it working but it had to be given at a low dose to start with to make sure that she would not have an adverse reaction. If we see no change in a few days we will take her off of it.


The Frustration is we are sitting here in Jax, Selah in a hospital where she could get sick, my kids by themselves most of the day as we are with Selah, Jon not working, so many ramifications from finances to schooling....WAITING on home nursing care!!!  It would do no good for Jon to go home and go back to work as we can't be here as a family without him nor could they all be there at home as a family without me....and we don't "roll like that"   With the little ones, and all their needs, it takes two adults to split the time.  If he was gone, I'd have very little time with Selah because I'd have to do eye drops and everything by myself and I can't be at two places at the same time....

Basically our issue is where we live...supposedly our area is hard to get nurses for.  No agency has agreed to take our case.  We are expecting to get 24/7 nursing and that would require about 6 or 7 nurses to staff her.  I have called Tallahassee as she is now under Medicaid.  When I worked for the state, I worked with agencies that contracted with the state and they were REQUIRED to provide whatever services they had contracted OR they would lose their contract the next year.   I have had some very helpful folks working with me in the Medicaid office but it seems like we are not getting anywhere.....  if you are in any position to help me, please contact me. theclanton5@aol.com   This is ridiculous and all of our lives are on hold at this point.  I know that Selah needs to come home and believe she will do better once she is home!  At this point, I may have to contact Tallahassee once again.

If you live in the central Florida area and are licenced as a nurse and interested in working for our family through a nursing agency please contact   at click on their http://www.psahealthcare.com/job_search.html   career section and apply.  Please note I would not feel comfortable with a male nurse in our home....sorry I know "beggers can't be choosers" but that would make me uncomfortable.
We are almost out of our mixture that goes with the fish oil, it basically coats the stomach and intestines and allows for the fish oil to be absorbed better.  It also protects the plastic syringe and tubing from the fish oil.  Well Dr Sears' office needs the doctor here to order it, the doctor here won't order it since she didn't order it to begin with....I can't go back to the original doctor as she has no jurisdiction over her medical care now.....more frustration.....

And my blog is not allowing pictures to post.....things like that annoy me!

Good thing I wrote a spiritual post earlier....LOL  this is my real life and I'm not feeling it......



5 comments:

  1. Wow, lots of frustrations, and such big ones, too! I wish I could help you in some way, but since I can't, I will just keep praying. Tonight, I'm praying that tomorrow will be a more encouraging day for you regarding some of these issues that need to come together.

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  2. Frustrating ... The only thing I can help with is the photos. I too am having trouble posting pics ... Try clicking to HTML and uploading pics there before clicking back to compose!

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  3. So sorry about all of the frustration you are going through. This is the first time I have ever wished that I was licensed in Florida!! Sending much love and many, many prayers for Selah and all of you.

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  4. That is a lot to be frustrated about. Our family will continue to pray for Selah's continual improvement, but I'll remind my family and FB friends to pray for good nursing care as a priority again. Selah is prayed for by me, your faithful groupy, daily, but my 6 year old chimed in quickly, followed by my 12 year old and husband. My son also prayed for Ivan and Putin, and all the babies that need homes because of your posts. I'm hoping that we get back to Florida (from Kentucky) sometime that doesn't seem like forever from now and see Kandi. I'd love to get to meet you and your family sometime. :) Understand if that is not reciprocated! LOL

    I was wondering if you'd tell me the details about how much fish oil you are actually persoanlly taking, and what kinds of changes you've seen in you. Also, if you too are smelling fishy!

    Many more prayers coming your way, I'm certain.

    Lori R.

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    1. http://www.zonehealth.com/theclantonfamily
      This is our link to Dr Sear's fish oil. It's on the blog on the upper right side. We use his in capsule form NOT liquid:) We take 4 a day and dont' smell fishy ( I hope not LOL) They are so pure they also do not upset the tummy at all unlike some we have used over the counter before. I'd love to meet any friend of Kandi's:)

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