Sunday, December 16, 2012

Day 42 Fish Oil Study

 
We went to Mandarin United Methodist this morning and was asked to share in their Sunday School class that has been such a blessing to us.  It was really a blessing and we enjoyed being with everyone and felt surrounded by love & concern.  Then we joined them for their Christmas Cantata and it was beautiful.  It was a Celtic theme and Sam loved it!  He enjoyed it so much, he was enthralled the whole time. 
 
After lunch I went and stayed with Selah this afternoon.  I took her out by myself for the first time and really enjoyed it.  They have a small park on the campus of the rehab and we went there.  I wasn't nervous at all with her by myself.  The weather is beautiful and warm (so sorry to my northern friends!!)   She did not have any therapy today so I did range of motion on all her limbs and was able to move her knees better than I ever have before.  This is her 2nd day on the new drug and in my opinion she seemed more aware.  One thing I noticed is, while I was talking to her nurse, Selah was looking away from me.  I began to rub her arm and she turned her eyes and head towards me!  I've never noticed her move quite like that when touched.  She also seemed to move her head back and to alot more than usual.  I am pretty realistic and try not to exaggerate anything but I really think I see a difference!  Maybe tomorrow it will be clearer if she is responding as that is the 3rd day and the day when most of the responses start from this med. 
 
She seems to be much better now that she is on meds for the infection she had.  We're not seeing as much guck coming out of her trach.  Hopefully she will be able to go back on the "speaking valve" tomorrow.  She seemed like she was moving her mouth today both sides of her mouth.  Sometimes we have just seen the muscles move on the right side but today I saw them move on both side and her tongue move but without having the speaking valve on, she can't make a noise. 
 
I know several folks have asked me to explain about where Selah is in her coma.  We had been told by our doctors in NY that she was in a level 3 or 4 coma based on the coma scale they use.  Here the doctors have said she is in a persistent vegetative coma (which is what Terry Shiva was in)  We had felt Selah had progressed beyond that stage.  I think it is hard for people to really put her in a certain box because of where she was before the accident.  So if I understand correctly, the doctors here ( or really the psychologist) feels she is out of the coma but in the PVS which is not a good thing....  who knows....
 
So please pray for us tomorrow as we work out more details for Selah.  We are not happy with several things including the plan to discharge her on Christmas Day!  We want her to be worked off the trach and we want to see much more therapy.  Please pray for Selah for that this new med will make her more alert daily. 
 
I had fun tonight at the church's Joy fellowship's Christmas party!  It was good to get out and get to know my new friends better:)

9 comments:


  1. Hi, Yvonne,
    Selah looks more alert in today's photo. I'm guessing, from the info above, that they use the Rancho Amigo scale in Rochester. I have used this scale with many patients. I have a family info link for you, below, which I hope that you will find helpful. Based on what you write, I tend to agree with the Rochester assessment, and, being a world-class hospital, they surely have a lot of experience with this. Please don't let the Jax staff compare her with Terry Schiavo or anyone else! They should only compare her to her pre-accident level of function, and I know that this is what you advocate for Selah. If they must compare her to an "average" person, they have to choose "average" for her DEVELOPMENTAL age, not even her CHRONOLOGICAL age, or comparison with an adult. See if they will give you a pediatric developmental scale, and try marking very specifically what she could & could not do before the accident. This may help them assess her more accurately.
    Meanwhile, sending lots of love and prayers for Selah and all of you. Praying for great news on day #3.


    http://www.rancho.org/research/bi_cognition.pdf

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    1. thank you Sher! i absolutely agree with you! I'd love to talk to you sometime my cell is 863 712 1734

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  2. This is a link to the CDC's Growth and Developmental information. Please see the Milestones checklist. (Check before printing...it is in English and Spanish, and will generate many extra pages if you print it out.) I hope this is helpful.

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  3. Thanx for ur post and giving us a hugefull information, i also read somewhere The omega-3 fatty acids found in Fish Oil possesses many health benefits.and recomended by many Health Autorities as a part of Balanced Diet. Fish Oil contains Omega-3 Fatty Acids, specifically Docosahexaenoic Acid (DHA) and Eicosapentaenoic Acid (EPA). One of the Health Benefits linked to Fish Oil is a low risk of Heart Attack. very healpfull for Blood Circulations. is this true..????

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    1. yes it is helpful for the heart!

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    2. My husband is on fish oil due to a family risk of heart disease. It can lower clotting so it's not recommended if you are on blood thinners. It's also very good for arthritis/inflammation and for some eye conditions (like dry eye).

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  4. Yvonne,
    I have followed Selah's story for a while and pray for her continued progress. I have a special needs child too and I can in a small way relate to the fight for services. I wanted to share this link that you might find interesting. http://www.developmentalmovement.org/. We work with this lady for trauma/ADHD and a variety of issues for my daughter. However, I know she also works with kids with severe brain injuries. The theory is about rebuilding the brain from the bottom up. You are such a devoted mom I think this therapy would be a good fit for you. And as a bonus this lady comes to Florida for appts.
    Carol (in cold Michigan)

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  5. From Wikipedia's article on PBS: " Misdiagnosis of PVS is not uncommon. One study of 40 patients in the United Kingdom reported that 43% of those patients classified as in a PVS were misdiagnosed and another 33% able to recover whilst the study was underway. Some cases of PVS may actually be cases of patients being in an undiagnosed minimally conscious state. Since the exact diagnostic criteria of the minimally conscious state were formulated only in 2002, there may be chronic patients diagnosed as PVS before the notion of the minimally conscious state became known."

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  6. I will be praying HARD!!!! I can't believe they want to discharge her so soon :(

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