Monday, February 4, 2013
Day 92 Fish Oil Study ~Look at these legs!
LOOK at her left 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!