Wednesday, January 9, 2013

Day 66 Fish Oil Study

Have you ever eaten crow?  I may have to...got Selah's blood work back on the inflammation and she is at .6  that means she went down from 1.1 .  Not at all what we were expecting.  It does not line up with where she is at.  She should not have regressed with the level going down.  It is actually too low at this point and we are cutting back on her fish oil by 5 ml a dose! 

She has had a great calm day although her tone seems high.  We do not know what to think about this new info.  We also did find out something else interesting, not only did the MRI show less damage in the white matter.  Also the front of her brain looks better.  How is that for me giving you the unscientific news?  I don't have the report with me so it is hard to remember but it is a good thing.

With all this good news, I feel she should be doing better overall.  We can't explain it.  The hospital certainly ran every test to check on anything that could possibly be causing this regression.  There is nothing....

Today we were told our primary insurance Blue Cross will not allow her to stay here past Friday...for some reason I am completely calm about this.  No there is no nursing set up for her.  There are lots of folks working on it.  We have put in an appeal to BC so we are waiting on many people to get back to us.  I don't know if this is supernatural or if I am past worrying ..... but it is very odd!  Now I can not imagine taking her home on our own on Friday.....but.....

Today I finished the book "Reckless Faith" by Beth Guckenberger.  I would recommend it....
In chapter 10 she writes
" Faith is the gas that makes your spiritual car go.  How reckless can your faith actually get?  It's measured by the extent to which you really believe God's plan for you is the best.  It requires the kind of faith that believes that God's words are not empty promises, meant for someone else.  It's the kind of faith that says "Everything will work out in the end"`even if "the end" is eternity.

Over and Over again God teaches me that for those with reckless faith, the story is never over.  It's childish to throw in the towel, pout, get frustrated,or walk away.  Life's isn't a puzzle that too hard or a toy you can't figure out.  But so often, I'm tempted to lose faith when I'm confronted with a setback.

When I relax my control on the plot line of my life & give in to the journey God has prepared for me.  I lose myself in all the great stories swirling around me.  When I stomp my feet and say "that's not fair!" or "it wasn't supposed to happen this way" then I run out of gas and my spiritual journey stalls.

But God is teaching me, one child at a time, that He is the Author of life and can redeem and write any story He wants"  (boldness added by me)

This particular passage really spoke to me.  So much so I just typed it all out for you to read.  It mirrors my heart right now.

You know my life wasn't supposed to be like this....this accident, these last 5 months away from home~ tomorrow is 5 months since we left home....now this, going home with a very sick little girl....   I serve God, I try to be faithful, I'm a good person... I've embraced the difficulties that God has allowed in my life believing it will work a bigger purpose....  Somewhere along the line, God could have stepped in....He could have changed things, but He didn't completely do what I wanted Him to do.  I should be home right now getting supper but instead I'm in a hospital room with my husband sitting Selah up in her bed as her heart rate rises, my kids are at the hotel waiting for us....no this is not what I would have wanted...but I'm learning to let go... God is in control, He can write this story,  I am not in control of how things work out. 

When we were adopting the children, I knew that my life would change.  There were a few times that I would have the feeling that "my life as I know it is over"  but then I discovered, it really wasn't much different than the life we already had!  Now I think it will be much much different....  I had decided that if God gave us the children, He would give me the grace to serve them the rest of my life.  I thought serving would mean one thing...it's going to mean something quite different once we get home....It's scary...you have NO idea how afraid I am.  I already have more responsibilities than most folks have and I've gladly embraced it.  These new responsibilities....it is a scary thing.  But the same God who prepared us for the two new little girls will prepare us for this next step.  I have no doubt of that.   Does that mean I am doing cartwheels down the hall?  Not really!  It is a heavy load on my shoulders and on my mind.  In the natural, I have NO idea how things will all work out.  Not just the few things we have to get clarification on but life, day to day....Life.  I didn't ask for the life that lies ahead but I know one thing...I'm going to trust God and I'm going to serve Selah and my other children. 

I'm learning to let God write the story of my life...as a young woman, I had a PLAN for my life, really a plan with 5 yr and 10 yr goals....and I met those goals....  Now I don't have a plan for tomorrow....we had a meeting today and I was asked "what's the plan?"  I wanted to start laughing hysterically...I haven't had a plan for the last 5 months and not much of one before that!  I've been "winging it" for the pat year, not knowing where I'd be the next week.  

I'm not saying NOT to have a plan for your life don't get me wrong!  But I'm just sharing what I'm learning in my life. 

So the "story is not over " for us or for Selah!  I don't know what the story will read but it's not over yet....

Please pray for us and Selah!

18 comments:

  1. Continued prayers here for Selah, the home nursing situation to be resolved, and for you to get home and settled in. Just curious....have you been able to speak with Dr. Sears about any of Selah's progress and subsequent regression?

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    1. Yes I have spoken/emailed his office several times. They are a bit perplexed at how good her numbers are and how she is not responding. We didn't expect her numbers to be down.... the MRI report is great too, I don't think the good report was expected but yet she is not progressing....it makes no sense

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  2. You know how people always say you need to be able to go with Plan B? We joke that we are on Plan Z!! You are right - it is not our plan, it is God's plan. As the "do-er" I know you are, it is difficult to sit by and go with God's plan. Perhaps Selah is just resting up while in Jacksonville - she might just want to be home as much as the rest of the family! God has a plan for her. Her numbers are going down. Her brain is healing. God is working his magic. The big reveal is yet to come! Love you guys!

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  3. I have followed your blog since the accident! You are an inspiration and as a pediatric nurse I have seen many moms do just as much with their kids as I do! You will be the best "medicine" that your daughter needs. Her storms will calm once she is home and has your gentle touch once again. I wish I was closer as I would be first in line to volunteer my nursing service and expertise. Thank you for sharing all of your feelings with us! Sincerely, Naomi

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  4. Prayers being said for all of you.

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  5. You mentioned her tone, I was wondering if she is on any medication such as Baclofen? I follow a Facebook group supporting a 2 year old boy who has a traumatic brain injury due to a tree limb falling on his head. He was getting Baclofen daily, but they did a trial where they injected the medication directly into his spine and they said the change was incredible. Tomorrow he is undergoing surgery to implant a pump in his stomach which will deliver the Baclofen directly into his system. His tone was very high, he would sometimes be stiffer than a board, his back would be arched off the bed, but with the Baclofen injected directly into his spinal column, he was so loose and calm and seemed much happier and more comfortable. Let me know if you want the address for the Facebook group following his recovery. They actually aren't too far away from you, in the grand scheme of the United States - they are at a rehab facility in Atlanta, GA.

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  6. You mentioned her tone, I was wondering if she is on any medication such as Baclofen? I follow a Facebook group supporting a 2 year old boy who has a traumatic brain injury due to a tree limb falling on his head. He was getting Baclofen daily, but they did a trial where they injected the medication directly into his spine and they said the change was incredible. Tomorrow he is undergoing surgery to implant a pump in his stomach which will deliver the Baclofen directly into his system. His tone was very high, he would sometimes be stiffer than a board, his back would be arched off the bed, but with the Baclofen injected directly into his spinal column, he was so loose and calm and seemed much happier and more comfortable. Let me know if you want the address for the Facebook group following his recovery. They actually aren't too far away from you, in the grand scheme of the United States - they are at a rehab facility in Atlanta, GA.

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    1. she is on that med. we do not want her to go on the pump, there are many side affects and health risks to it. we may have to but most doctors recomend waiting a year from the accident to do it. I had had their story sent to me and I read that they did it and was shocked. both NY and here say the wait should be a year because that is such a big step. But TMI's like he had are different than the kind of brain injury Selah had. We are going to try and wait for her. Once we are home I am going to work more with her with her heated pillows and even with a foot spa and see if the warmth wil help. I notice an improvement when I do it in the hosptial and wonder if it could be on a more regular scheule if that will help along with prayer and less stimulation. We are going up 5 ml on Bactrifine daily to see if that little increase will help

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    2. Thank you so much for responding! It's ironic that you had been sent their story, because I actually contacted them about Dr. Sears and fish oil after seeing how it has helped Selah! They are already giving him fish oil, though not the same, I don't think. The Internet is such a great place for sharing information! I work closely with children with autism, and although congenital autism is different than the institutional variety, there are also many similarities and I think you are SO correct!! Once she gets home in a less stimulating and more nurturing environment, she will start to improve once again! By the way, I am from Lockport, NY - about an hour west of Rochester, and when my son was an infant, we made weekly trips to Strong's orthopedic outpatient department for 4 months because he had congenital plagiocephaly (a misshapen skull that didn't "round out" as babies' heads often do). He wore a reminding helmet for 4 months and they were so amazing there. I love Strong Hospital!!

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    3. Thank you so much for responding! It's ironic that you had been sent their story, because I actually contacted them about Dr. Sears and fish oil after seeing how it has helped Selah! They are already giving him fish oil, though not the same, I don't think. The Internet is such a great place for sharing information! I work closely with children with autism, and although congenital autism is different than the institutional variety, there are also many similarities and I think you are SO correct!! Once she gets home in a less stimulating and more nurturing environment, she will start to improve once again! By the way, I am from Lockport, NY - about an hour west of Rochester, and when my son was an infant, we made weekly trips to Strong's orthopedic outpatient department for 4 months because he had congenital plagiocephaly (a misshapen skull that didn't "round out" as babies' heads often do). He wore a reminding helmet for 4 months and they were so amazing there. I love Strong Hospital!! (I am SO sorry if this posted multiple times, I was having trouble posting a reply)

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    4. That should say "cranial remolding helmet" not reminding LOL

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  7. Praying for you all as always! This is just how I feel in my heart...I feel that she just doesn't like it there. I feel that possible she is treated different then in NY. I think she can sense...I guess you might put in the hearts of others. Call me off the wall but I'm Pentecostal & I believe that there's no telling what kind of people have been thru that place & that are there & the spirits they carry with them or have left behind. It makes a big difference when I place is full of Christian people. I have faith that when she gets home & gets settled that des going to blow your minds. I think God had this all under control & He working His plan & that's why your not so worried about her coming home. He's speaking peace for what is to come!!! :) I can't wait to hear about it!!

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  8. My post had lost of typos but my phone wouldn't let me go back & change them lol. I think you can figure it out though lol " smart phone" just isn't so smart some times lol

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  9. It's the autism. She has had so many, huge life-changing things happening in such a short time! Change, even very positive change, translates into stress, even for someone who is neurotypical. I have seen children with autism, institutional or otherwise, have either "meltdown" or " extreme withdrawal" episodes that last for hours with the tiniest change. (for example, I knew one child who would cry and scream for several hours, in real distress, if his mother parked in "Dad's parking space." If he didn't scream, he did the opposite...became totally unresponsive for hours. Compare that very tiny change with what Selah has gone through in less than a year!! Now, just as she is adapting a little, her world will change profoundly again. Poor little tyke...the world is a scary place, where everything turns upside down and inside out, over and over.
    The fact that her MRI & inflammation levels show definite improvement shouts "autism" to me.
    Continuing to send love and maximum prayers to all.

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  10. Maybe Selah is simply uncomfortable with the environment she is in? It will be so interesting to see how she responds to coming home! Hoping for all the best for you, and strength and peace of mind!

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  11. Let me say how over the moon I am about the tests and improvments with Selah (on the scientific side). I pray for continued improvement! I am at a loss about her regression however. The brain is such an amazing organ that we know so little about. Maybe she is 'waking' up and her mind is now on a overload. Who knows? I am sure you have had a million questions running through your mind as to explain why. Take comfort, Mama. I will be praying. God Bless Selah!

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  12. I believe that peace you have is from God. And I'm glad to hear her scans/tests are good. She can get better--back to where she was. I do believe that. It just may take more time for her.

    I know all about planning and God deciding He has different plans. It is hard to give up that control, give up on plans that you thought were perfect. I never knew that at 25 I'd be hit with illness....and that at 42 I would be disabled. Who can plan for that? But I'm trying to see God's hand in this.

    Praying always that your Selah will continue to heal.

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  13. Dear Yvonne, I can imagine the fear that these tremendous responsibilities, changes, and uncertainties bring. I know the struggle that it is to choose to keep putting your faith and hope in God, minute by minutes, over and over again. I'm thankful you have had peace, too. I pray you continue to see his faithfulness, know his goodness, and remember what he has done.

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