Friday, December 14, 2012

Day 40 fish oil study

Our first full day in Florida.  We went with Selah to all her therapies.  She certainly was "off" again.  She had thick green guck coming out of the trach and was still on oxygen.  the culture came back positive and now she is on antibiotics.  It bothers me that this was not noticed until we got here and I started pointing things out to the staff.   Obviously she is not doing all the things she normally does but we did see her do one new thing.  When quickly moved to her right side ( to mimic a fall) she does startle and reacts in an alarmed way. 

We had a long conference with our main doctor and staff to get clarity on some issues.  Our main concern is that she gets rehabilitated, and gets as much services as possible while she is here.  She was placed in a 2 week "evaluation program"  That is not exactly what we agreed on during the conference call we had.  We did agree to start with that with the belief that reasonable goals would be set and achieved and she would meet the requirements for the insurance to keep her here.  Once we got here, it seemed that only the two week evaluation program was being considered for her.  There is definitely a difference in opinions between us and them.  It was explained to us that her brain is slowly healing and that no therapy would help her get better any quicker.  Therefore rehab won't do much for her at this time.   That is NOT our opinion nor is it the opinion of various therapists we have had over the years for Sam.  (in fact most of the time I've felt that Sam had been pushed too hard at times) 

I am not sure what is going to happen.  We do get some positive feelings here and I think if she were higher functioning they would give her more but they don't because of her lower functioning ability.  That bothers me.   We did like the doctor's approach to the meds, she is interested in taking her off of as much as possible that could give her sedation!  I'm thrilled with that and all for it!  Also tomorrow she will be started on a new drug called Amantadine this is a drug that seems to help children with brain injuries.  In a study 63% of the children saw significant changes within 3 days.  The changes included increased alertness, initiations and verbalization and decreased agitation.  Please pray that this will work significantly for Selah without any bad side affects!!!!!!!!!!

In my opinion, the outlook for Selah by the staff here is not good.  They seem to think she will have increased problems with the spacity (stiffness) and may need a pump placed inside to give her continuous meds to combat the stiffness as well as other issues.  Although they are very respectful and pharse their statements gently, it is depressing.  They tend to point out the negatives and not the positives.  We are realistic, please do not get me wrong- I am the Queen of Realism but we also have hope.  I told them in our meeting that we have seen how far she has come, without any regression (until now) and that only gives us hope for the future. 

My philosophy as a parent of a child with disabilities is to give the child as much therapy as possible and work the body, which in turn stimulates the brain.  I've been told that by other therapists and doctors.  I've done that with Sam and if you know us, you know how far Sam has come, much farther than anyone ever thought he would.   This philosophy that they are sharing with us goes against my gut feelings and everything I've been told for the past almost 9 years. 

There is not alot of options for us to be honest.  Our insurances will only cover so much and obviously we can't afford to just go anywhere we want to get therapy.  If you have any real suggestions, or if you are a millionaire and would like to pay her therapy (lol) , please feel free to share with me.  Believe me, if there were any real options to go to after here, I would be doing them.

I'm confident in God tonight, He has led us these past 19 weeks and He will continue to work things out for Selah.  If you know me, you know I'm not naturally "at peace" with things if I don't agree with them.  I will continue to advocate for Selah and I believe I know what is best for her and I will go with my gut instinct about things.  Please pray that she will respond more and that they will see the potential in Selah, not just the negatives.  Pray that the staff will see our commitment to bring Selah back as far as possible and want to work with us in a stronger more pro-active way.  Pray that this new medicine will work mightily in her brain!  And that she will 100% tolerate the decrease in some of the other meds and this new one being added with no side effects.  This has not been the easiest day for us.  Jon is sick and feels down, which is not how he usually is either.   We have so much responsibility on us, it is easy to feel alone.

The other kids had a great time today in our hotel suite, they fixed lunch and watched tv:)  They called us to tell us what all they were doing. they are loving it here!  (but they miss their RMH friends as do we!  The hotel is wonderful but we do miss the interaction with our friends! But are loving the privacy!!!! )

14 comments:

  1. I have followed your blog over the last several months, after seeing a prayer request on Facebook.
    I have prayed for your beautiful Selah and all of your family. I also live in FL and at one time worked as an RN at a pediatric rehab facility run by the Elks clubs. The facility is no longer open but the FL Ellks clubs do finance mobile pediatric therapy units that come to your home. Is this something you have ever applied for? It may not be useful information right now but something to look into. It is free for those that qualify. My prayers will continue for your family.

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    1. That is interesting! Can you get me some more info on it? We live in Pasco Co. thanks!!

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  2. I want you to know that you have no idea how much your story ministers to me. I know it won't be revealed until eternity, the vastness of God's plan in all of this, but I think back on the days of small beginnings when Selah didn't even respond to the cornea scratch test...if I'm wording it right...and had no gag reflex, didn't swallow, or cough and there was seemingly no hope. I know I'm not in the "midst" of the trial you are in so it's easy for me to say, but I really believe God is using and will continue to use Selah to change the way brain injuries are looked at and dealt with. I believe God will show the people working with her, things they've never seen, and this will change how they deal with people in the future. I'm very much a realist also and not given to emotionalism, name it and claim it and such. I just really believe it! It's also my daily prayer for your family...that Selah will be better in the end than she ever would have been had this accident never happened. Always praying! Corey...girl

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    1. thank you. I pray that she will recover and be even better too.... oh I hope so!

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  3. Praying mightily for all that you requested. Sending lots of love along with the prayers.

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    1. Sher thanks for all your sweet remarks!

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  4. I just read part of your post for today...I so do not like drugs that have funny names...I looked up this drug that they want to put her on and I am praying that it doesn't harm her...It is an anti-parkinson drug for the most part....and that pump to have meds in her at all times....HMM...I will pray for her protection...
    I don't mean to be an alarmist when I don't have all the facts, but my husband has taken some drug for one thing and it caused a ton of problems that I believe are still affecting him a year later...
    Please forgive my guarded feelings about this stuff...Believe me when I say that I will PRAY more before the Lord than before....
    And thanks for letting me share my feelings...
    Love from NC

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    1. Amantadine is also used for the flu (like when you first feel it coming on). I'm not disagreeing with you Sandy--as one who is on meds all the time, it's a fine line on the benefits vs the risks. But I wanted to let Yvonne know that was another use for it.

      As for an internal pump....it can be a good thing as well. I normally hear about them for pain medication.

      And I know what an amazing advocate Yvonne is for her kids (just from "knowing" her the past 19 weeks) so I know she'll do her research as well as get many opinions before anyone does anything to her precious jewel!

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  6. You are not resting easy b/c your gut is telling you something. Take time to assess it all and your mind will follow on what to do. No matter what just pushing for the sake of your daughter is nothing any person can be upset or disagree with. Change is always difficult and you all have just experienced so much change in just moving there so give yourself some major credit and get ready for this next phase - you can do this!!

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  7. I am definitely praying HARD for sweet Selah!!!

    If we had won the powerball (sigh) you were one of our top priorities! I'm sorry we didn't and can't help in a financial way right now.

    You are never alone. Of course God is with you always, and we--your online friends--are here for you too. Sending you lots of love and hugs.

    xoxoxo

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  8. Just prayed for each of the specific things you requested, and continuing in prayer!

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  9. Just prayed for each of the things you requested, and continuing in prayer!

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  10. I know that recovery from a brain injury takes time and that rest is important, at least at first. Now I'm not sure about 19 weeks later, but I do know that it's completely different from trying to help a child with developmental delays from other causes.

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