Tuesday, January 8, 2013

Day 65 Fish Oil Study

Selah had a good day today.  She  got very angry when we put her arms splint on.  She did something we had never seen her do.  She raised her arm, with elbow bent and brought it down several times. like a judge would!  She evidently got so mad that her heart rate went up to the 160s but since it was because she was upset, she calmed down after the splints were taken off.    We are using these splints because at times her hands/arms are drawing in.  Last week we had that odd episode where her arm was out to the side.  That was very unusual and hasn't happened again.   If anything she tends to draws her elbow in towards her sides.  We first noticed it right before we left NY but it has gotten worse on some days.  She did prior to the accident, have a strange way she held her arms.  It caused her to be diagnosed with Cerebral Palsy in Ukraine.  Our pediatrician and the therapists who evaluated her when we got home did not feel she had CP, she had full range of motion she just had an unusual way of moving.  At first we thought she was just putting her arms/hands into the old positions but it seems she has gone beyond those positions. 

Last night I bought several of the heat up thingys....Selah had some cute ones that I had bought up in NY.  But she had an accident on them and they had to be thrown away.  I found her 2 that are like long scarfs that can be wrapped around her legs.  I also got a heat up neck pillow.  Today I warmed them up and used them on her legs.  She sat up in her chair for about 45 minutes working with the heat up pillows.  I was able to get some good range of motion on her legs.  When she sits up in the car seat, gravity helps bring her legs down into a more normal position.  Then the heat and weight of the pillows help her legs relax some. 

We are still waiting for the MRI results, we were in and out today so we missed getting the copy.  We are also waiting on the blood test results. 

We have been waiting on get Selah's nursing set up.  Since we live in a rural area, it has been difficult to say the least!  We've had a social worker here working hard on it for weeks and she has just been given the run around by different agencies.  So today I called the Governor's office....I was listened to and then sent to the head of the Medicaid dept there in Tallahassee.  The person I spoke to said our case was serious and they would work on it.  Within the hour I got a call from an administrative person in our county who assured me that would work on our case tomorrow (it was very close to 5 pm)  Every agency has said because of where we live, they can't service her.  Since they all have contracts with the State to care for patients within our county, there is some obligation to do that!  I understand contracts with the state ....at one point I worked for a contracted agency and then later when I worked for the state, I worked with contracted agencies and did reviews on them.  I also know what happened when we'd get a call from the Governor's office regarding a case.....we JUMPED!   I know I worked within the criminal justice system but it is the same overall rules.  So I'm not as worried as some might be over this...I feel like it will be resolved.

I'd been thinking about the flu vaccinations and read today how bad the flu season is this year so I found where we could get flu shots.  We went to the Health Dept and we all got our shots.  The nurses and the staff there were amazing and so kind.  They got us in and out as fast as they could.  We have been getting flu shots for years, all of us and never have had any issues.  It's late in the season to get flu shots but we have been a bit busy.  I would encourage you all to get your flu shot.  I grew up not getting vaccinated for anything.  I almost died from the whooping cough, I was sick for months and months.  I had every childhood disease....it was AWFUL!  I am the absolute opposite of my family, my kids get every vaccine out there! None of my kids have ever had any problems from any shot, not even a fever....  And even if they did have a slight reaction, it is still worth it to be protected!!!  And my poor adopted kids....they come home and go to the doctor and their first visit included 6-7 shots!!  Today we were even able to get Sarah's Hep A and B boosters! She wasn't too thrilled with it!

We had some friends come over tonight and then we finished the night watching  "Domesday Preppers" ~ my favorite show:)  And then Diggers, makes me want to go buy a metal detector!  Looks like fun!

Several folks have asked about my back/shoulders.  I am still having problems with it!  A friend of a friend sent me a gift for me to go and get a massage and I did last week at http://www.southerncomforttherapeuticmassage.com/#  thank you friend!  And thank you Southern Comfort, I had some relief for awhile!  Jon wants me to go to the doctor but honestly I don't even know where to start....maybe if we ever get home.....  I hope to go back to Southern Comfort thanks to my friend's generous gift!!!

Please pray for Selah...she is still not at the point she was at before we moved her.  We are wondering more and more if the regression is not tied to her whole institutional autism.  Could she be so upset from the move that she has regressed?  That certainly doesn't seem to explain everything....I just want to get her home but I want to be safe about it.  I know my limitations....I'm only one person, Jon works two jobs and can be called in to the prison for an emergency ( and has been called in numerous times)  and of course as a pastor, he has to be ready to go to member's if they need him!  We need reliable nursing care!

Just pray for her, we want her to interact with us more, we want her back to "SELAH"  We need God's mercy!!!


  1. Thanks as always for the update...I will pray for His mercy..After all, His mercies are new every morning and His grace and love and everything else....
    Rest in Him
    Love from NC

  2. YES, institutional autism. I would bet my precious RN license on it...and I am NOT a betting woman!!
    Sending lots of love and prayers, and praying mightily that you will find the right home care staff.

  3. I know it is hard not knowing the path ahead....especially since Selah has regressed. But....with the improvement on her MRI and now that you got her fish oil straightened out, she could do those things again.

    I will continue my prayers for her and that you get the nursing care you deserve!!

    Hang in there mama.....