Thursday, January 3, 2013

Day 60 Fish Oil study

Back on Day 1, I thought by Day 60 Selah would be so far ahead than what she is today.

We had our weekly meeting today.  Basically it comes down to we are not happy nor do we have the same level of teamwork/trust as we had in NY.  We asked to be transferred but that is almost impossible since she is not acutely ill.  We already understood that but had hoped they may want to transfer us so we put it out as an option.  We are hoping for a release date of Monday and alot of things are falling into place so that might just happen.  Jon & I are going over training/discharge paperwork in order to leave on Monday if the nursing is set up.  That all is being worked on by different agencies.  Pray that we will have everything in place by Monday with 24 hour nursing as we have requested due to our circumstances.  Thankfully in our state, they do have to take into consideration our other children.  I'm not sure how often they've had a family with three disabled children.  But everyone seems to think that will tip the scales in our favor.

Selah had a storm at 3:30 PM her new regular time.  Then she got her meds.  The storm only lasted about 10 minutes.  But then at 4:30 pm it started again.  It took her about 45 minutes to bring herself down.  We have no idea why she is having storms again.  All I say is once she had started the fish oil study on Day 1 she went from storming several times a day to no storming again until a couple of weeks ago.  The fish oil bottle was changed (we thought it had been compromised) and she didn't have another storm until this past Tuesday. 

She was evaluated by a neurologist who was called in.  In a nutshell the neuro basically said Selah was at the same place as she was in NY according to their (NY) records....The neuro said it was "how she was viewed or how it was interpreted or read"   Basically that means Selah is the same, we all misunderstood her in NY......    If it was not so asinine, I would have to laugh but at this point I just want to cry....I can't even discuss how we feel about this but to say we do NOT agree that she is the same as she was in NY!  Two major documented differences...1. she had quit storming in NY  2. she was swallowing in NY...  Those aren't things that are open to interpretation or subjective views......

Jon and I just have our heads down and are plodding along, making sure we have everything ready for her release on Monday.  We are beat down and discouraged in a way we have not been before.  At least during the hard times in NY we had confidence in those who were working with Selah.  That makes a huge difference when you feel everything that can be done is being done.  If there were any questions about her health, they turned over every stone to make sure she had proper care!  We didn't have to ask for it, it happened in the course of treatment!  Can I say again how much we love Strong's Hospital in Rochester NY!  We knew we were in the best hands and had confidence in that!  We do appreciate the nurses who have been working with Selah here, we have three lovely ladies who do the majority of her nursing and they are great and caring.  One is from Eastern Europe herself, one from Morocco and one homegrown:)  But this is far different than Strong's

So our prayer request is that everything comes together in the way we need in order for us to be most comfortable in bringing her home.  We really want to go home on Monday with her.  Our family needs to be home.  Up until this past week or so I've not even let myself think about going home and actually living there with our family.  I am so ready.....  I think we are all at a breaking point, Jon, me and the kids.  The kids have all been so great and have had wonderful attitudes through this whole ordeal but they need structure in their lives again.  I'm really proud of Steve and Shad, they have not complained at all about losing their room and having to sleep on the floor.  Honestly not one word or grumble, they've treated it like an adventure:)  They've all "gone with the flow"  Last night Sarah had a nightmare and woke up screaming and shaking.  I had to hold her and sing to her for her to calm down.  She was doing the long shuddering breaths....she finally calmed down.  I think we haven't given her enough attention the last few days.  I stayed home with them this morning and held her and fed her and talked to her...  I think just a few months ago she was living in a mental institution.  Now she just goes with the flow and has adapted so well to everything but some days she just needs Mama!  And I need her and her sweet laugh!!!  But we are all ready to be home, even tho home will be so different......

I have never tried to say what I thought our future looked like....we hope and pray for Selah's healing.  I can't believe this is the ending we will have....  but I don't know....  I cry out to Jesus every night and every morning when I wake up. It comes welling up from inside of me.  Sometimes when I am half asleep, I find myself fervently praying for Selah without evern thinking about it.   I ask for His mercy over Selah....  I ask for Grace to walk whatever path that lies in front of us.  I don't understand why others have had a recovery and Selah hasn't....  But I am still going to trust God. 

These past almost 5 months have been the hardest walk I've ever had...and there is no end in sight right now.  Please pray for Jon & me, we need your prayers, now more than ever.... 

Thank you all again for your prayers and for your many kindnesses to our family.  I am beyond behind on thank yous but please know we do not take anything for granted.  We have learned by the outpouring of love to know how much it means to be reached out to.   There has been times in other's situations that I thought maybe I should send a card or something but figured it wouldn't mean that much, probably so many others were doing it ....OH but it does mean so much !!!!!   I'll never squash that impulse again even if I barely know the person or even if I don't know the person!    So thank you all! 


  1. I am so very sorry to hear this...praying that God brings you wisdom for her, and doctors that believe in HIM and her!!!

    Storming heaven on your behalf!!

  2. Prayers being said for Selah's healing and for peace and joy in your family. Sending hugs, too.

  3. Without words....just praying and groaning in spirit....
    One comment: I dislike neuros who think that they are
    superior in their thinking....happened to me and it urks
    me to NO END how great they think they are with all their
    knowledge...I don't think that for one minute you got it
    wrong with what the team at Strong's was saying to you and
    the results were not wrong either, and videos
    don't lie when they clearly show progress with Selah...
    God's knowledge is the BEST and will put
    the world's knowledge to shame....God is Faithful.....
    Love from NC

  4. I am really praying for you guys. Praying, praying, praying that she can come home and be in the capable hands of her loving family.

  5. I have come to love you and your family and especially Selah through out the last few months. Praying praying praying for you Much love from Georgia.

  6. Do not be afraid. God is with you, Selah, and your family. More importantly, YOU and yours are with God. God was with the folks at Strong's, and they were with Him. Those who weren't initially were brought to Him through the miracles of Selah's survival, recovery, and progress. Everyone involved with her came to believe in her, and through her in God. They were invested in her from the moment her lifeless body arrived.

    The folks at this rehab place are not invested in Selah, or in anyone else in a "hopeless" (as they and their Bioethics see it) situation in their care. God is with you, and you with Him. God is with the rehab staff, but they are not with Him. Their hearts are hardened. They do not believe in Selah, or in miracles. They have seen too much pain, too much failure to recover, and the enemy has used this to whittle away at their belief, their hope. They are bitter, jaded, completely hopeless, and therefore lean upon their own understanding and conceit.

    Do not be afraid. Soon you will have her home, with you and with God, immersed in love and faith and hope again. Then you will see miracles - again.

  7. Oh this has got to be so frustrating!
    We are praying for you in Texas!

  8. I'm having MAJOR problems with my browser!! Just sent you a lengthy reply, and I'm not sure it went through. :-( If you did not receive it, please let me know, and I will re-do it to the best of my ability.

  9. I agree with you and Jon 100% and it makes me so sad and so sick they are in the position of power to make you feel so discouraged!

    Praying hard for you to get HOME. This isn't an ending, just a new beginning. Don't ever give up. God is with you all.

    Love to you all

  10. Greetings from Finland! I have followed your blog since the accident. You don't know me and I don't know you. But, it doesn't matter. You just wrote the words " ....OH but it does mean so much !!!!! I'll never squash that impulse again even if I barely know the person or even if I don't know the person!"

    So, blessings to all of you. HE is still on the throne!

    1. thank you for your comment! Thanks for the prayers !

  11. We are praying. Is it possible for you to contact the people at Strongs? Just wondering if someone there could advocate for Selah.