Monday, February 4, 2013

Day 92 Fish Oil Study ~Look at these legs!

 
LOOK at her left leg!
 
 
 
 
Right leg

 
Our nurse was just holding it in place for the picture, no pressure on it!   And for the pictures, she moved her hands so I could show how much her knees bend, don't worry her knees were supported during the stretching.  BTW, you can tell her legs have not withered up!  LOL  She is as plump as she can be:)
 
 
These pictures might not mean much to you unless you understand TONE and how it is affected by a brain injury.  Basically when the brain is injured, a child or a person will be effected by too little tone and be floppy or too much tone and be stiff.  Selah has had too much tone.   About two days after the accident she went stiff from the waist down and was like a board.  There was some tiny bit of range of motion that could be achieved at times but since she left NY, she seemed to even lose that little bit.  But look now!  She has NEVER been this flexible since the accident.  She is not normal in her legs/knees and certainly not at all in her ankles (they seem no better) but her upper body/arms/hands and knees are so much better!
 
We really do not know what to think....I wondered about it last night and decided to call the doctor at Brooks Rehab and go over all her medications with her.  I started thinking perhaps in all the various people and confusion of the big move/change, she has been given a higher dose of one of the meds by accident.  I also thought maybe the doctor may have gone up on one of the meds right before we left...  So Dr P graciously went over the prescriptions with me and we have the dosages right and everything is good.  Dr P had gone up on Valium about a week before we left for home but we wouldn't be seeing the effects of that now.  Plus she has now lowered her night dose back to .5 ml which is nothing, just a little relaxing. 
 
I even asked our nurse to count all the Bactfine pills to make sure no one gave her anything twice and they counted out perfectly. 
 
So what to think?????
 
Well she is on day 92 of the fish oil ....
 
And you all know Selah has had many prayers offered up on her behalf..
 
I'll be honest, I don't know what is going on.  Call me shell shocked but I'm a little hesitant to call it a "miracle", for me she would have to recover completely to her old self for me to call it a "miracle"  I feel that word gets thrown around too lightly especially in some charismatic/pentecostal circles.  I'm not going to throw it around until I know for sure.   When Jesus healed in the Bible it was complete and it was instantaneous....
 
For all of you who are reading this and thinking I'm doubting Thomas or just not trusting God, please know I am living this and I will never exaggerate anything because to me, that is wrong.  God is big enough, He doesn't need me trying to prove something that may or may not be happening....  I'll just report to you what we are seeing and experiencing.   God is bigger than any of my thoughts or doubts...and is not dependant on me or my words to heal Selah. 
 
It could be that she is more cognitive than what anyone thinks and she "shut down" and thought she was back in the institution and now that she is home, she is allowing herself to relax again.  I dont' know.....
 
BUT IT IS WONDERFUL!
 
So in spite of all the good things that are happening...I had some down moments today.  We don't have a bath chair for Selah yet so I went looking for a child's lawn chair (the kind that folds out)  I went to Kmart and just about lost it.  I'm not a Kmart girl, haven't really ever liked the store but someone had given me a gift card from there for the girls and I went there over the summer and got Selah her pink ride in car and some clothes for both of them and found I did like the store more than I thought!  That was all could think about as I was in the store looking for a chair to sit her in so she could have a bath....  big contrast...big aching hole in my heart....  I never really found a chair like we needed...if anyone sees one of them let me know!
 
I live on an emotional roller coaster....
 
 
Someone asked in a comment if Selah smiles, in the light coma or the state she is in...well NO Selah doesn't smile, she does frown and did today when her knees were ranged but she has not smiled.  She was NOT a smiler before.  Smiles were rare and few from Selah.  We caught a few on camera and I'm so very glad of them but she had had little to smile about for 7 years and was just starting to smile.  It usually happened more with one of the other children than with us.  She did not necessarily cry alot either but emotions were new to her.  Some children do smile even when they are recovering but she hasn't yet. 
 
So please don't stop praying for Selah.  I'm glad for this change but I'm a little unsure of what it means.  We have seen no cognitive changes but she did swallow for us today and surprised us, it just happened as we both were in the room.  I wish we were seeing some other changes at the same time.  She seemed sleepier yesterday and today and that was another reason I wanted to check her dosages.  We did not get her the afternoon Valium at all and she was a bit more alert for the rest of the afternoon.  The dose she takes is very low and the nurse documented that she wasn't giving it due to her sleepiness.  So it's all a big mystery to us.
 
Selah means "to pause and reflect on god/God's word"  we say we named her well, she causes us to "pause and reflect" quite a bit! 
 
 
 
 
 

17 comments:

  1. Ok, I noticed her relaxed arms/hands even before really looking at her knees! AWESOME!!!! We continue to pray for Selah. I pray that one day you will see her smile. A smile, that connection to your child, can really change things.

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  2. Praying, as always, for Selah and that any improvement is not temporary and is for the best!

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  3. I have a rifton bath seat (medium). It is used, but clean. We just got a new one for my daughter, she has cerebral palsy. I can send you a picture, and mail it if you want it. Insurance covers it too, but it may take a little time.

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    1. we need it! could you send me a picture at theclanton5@aol.com that would be great!

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  4. I just wanted to thank you for having the courage to share your family's story/life! Selah is truly a blessing and I love seeing/reading about new details. I can't imagine how it feels to actually be living this roller coaster. But it takes a lot of courage to share everything that has happened, both the good and bad, but to have it out and show such faith in God is truly inspiring. I have no doubt that Selah's story (and that of your family) will touch more than one person somewhere that didn't even know God was looking to speak to them!

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  5. What a blessing! God is with you, and YOU are with God! There is something WRONG in that rehab place. I know I said this before, exactly one month ago, but to recap:

    "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."

    God is good!

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    1. We did have some good folks there but overall they were NOT invested in Selah like Rochester/Strongs' was....there was a huge difference!

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  6. I never thought about her thinking she was back in an institution! I am sure her being home has made a huge difference!

    Always praying for your sweet girl--and your amazing family!!
    xo

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  7. I'm not sure if my comment went through last night, but I have a Rifton special needs bath seat you can have. My daughter (she has cerebral palsy) just got a new one. Insurance covers these (under durable medical equipment), but I can send you this one in the mean time. If you order one, I reccomend the Manatee instead of Rifton. It's softer, and I really like it, but the rifton is good and it helps a lot!

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  8. Hi, I have been reading your blog since I seen your story in the news but never commented. Your little girl is amazing and is so blessed to have such wonderful parents. I wanted to let you know that I have one of these kids chairs you are talking about. It is low to the ground and cloth material, like one of the adult beach chairs that sits low to the ground. I have no use for this chair and would be more than happy to send it to Selah to use. The only thing is it is "blue", not the best color for a sweet little princess. If you would like to contact me I can send you a picture of it and see if it is what you are looking for. You can contact me at hounddogmom(DOT)jeakins(AT)gmail(DOT)com. God Bless, Sherri

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    1. I had someone offer a bath chair but thank you so much!!!!!! Love your google name:) thanks for the prayers!

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  9. I have been praying for Selah and your family for several months now. I saw something on the news today about an infant that developed white holes in the brain from an infection. They were told he would only have brain stem activity for te remainder of his life. The link to the news story is here. http://www.wfaa.com/news/health/A-Cure-for-Tristan-jannati-plm-meningitis-periventricular-leukomalacia-hansen-189708711.html

    I thought you might want to watch in case there is some new cutting edge therapy here that Selah too might benefit from.

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  10. Sorry my system was acting flakey. You might know about everything this family has tried or is trying however, I wanted to send it along just in case there was something new in the story.

    Prayers for continued healing from Texas!

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  11. Her legs look great. So much better than the last time I saw them. Something is working and I can only pray that you continue to see recovery.

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    1. Meg, I don't know what to think....it's unreal in a wonderful way!

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  12. hello are you a pro spanking family

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  13. hello are you a pro spanking family if so how

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