Reality, Physical Therapy and Some Answers!!!

“Man often becomes what he believes himself to be. If I keep on saying to myself that I cannot do a certain thing, it is possible that I may end by really becoming incapable of doing it. On the contrary, if I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning.”

- Mahatma Gandhi

Today Chris and I were smacked with a large dose of reality. Obviously we know the road that lies ahead. we knew what we were facing going into today. we had a diagnosis. we had heard all of the issues that were of concern. so we had a pretty good handle on what was ahead, at least i thought.  Through this whole process i have watched my husband go through a range of emotions. We have held each others hand through so many nights where we were drowning in tears. There has been so much said between us without either of us saying a word. We have developed this look over the past 2 weeks....when we see khloe having spasms or fluctuating her tone (she goes from a high muscle tone to a low muscle tone--basically meaning she gets very limp and lethargic to overly stiff to where we cannot move her) or using her muscles 'the wrong way'  (most kids realize that they can control there body when their limbs are bent and are able to use balance to help them maintain the position they are in--Khloe uses her high muscle tone (stiffness) to sit,roll,and move around, which is adding to her spastic movements in her limbs- her brain is not communicating properly with her body to tell her she CAN do these things while maintaining a normal range of muscle tone...if that makes sense) chris and i have this look that we give each other when we notice these things. its a look that says so much. Its a look of pain. worry. frustration. concern. and most of all wonder. I have began to accept that this is the hand of cards we were delt. i have learned to make the best of it (and i am still very much learning), I have learned that this is not going to be easy, but find great comfort in all of you who support us, the Lord, and mostly the comfort of my husbands hand. He just knows when to reach over and hold my hand. its a reminder that im not alone. i have another physical being, beside me, who just knows. Maybe i had assumed he had found some peace as well. his tears faded. his smile returned. he was coping.  or at least i thought he was. Today after the PT left, i watched a grown man fall to his knees.  I saw all of the air expel out of him like he had been hit with the hardest punch imaginable.  my natural reaction was to run to him, but i stopped, because for the first time ever, i watched him cry out to the LORD. I know my husband prays. he has great faith. he is born again. he believes. but today, i watched a grown man cry such a scared cry, and beg the LORD for an answer. I listened to him repeat "why is this happening" over and over again in the next room.  I dried my own tears, and i prayed and searched for an answer. GOD please tell me something. give me something to offer him. when i was able to gain control over my own emotions, i went to calm him. after hugging him, he looked at me and said..."so this is it ... this is part of our life now" . reality had hit him hard. yes this is our life. therapy will be part of it forever. he calmed down. we ate dinner, watched some tv, and put the kids to bed. i could still sense something was bothering him, so after talking, i said to him...yes chris, this is our life. it may not be the life we imagined. but this is our life. and what better life to have? we have 3 HEALTHY kids. 1 may have some limitations currently, but she is HEALTHY! we have 3 brilliant children. at times, wise way beyond their years. we have each other.  we have a bond that some will never understand. a love people spend their whole lives searching for. we have GOD. we have faith. what more do we need? this is our life.  I did explain to him that while Khloe was diligently working in the living room, he was in the kitchen and lexi's room with Lexi and Moose, he was only hearing what was going on. he couldnt see all this little girl was doing. he was hearing me ask the questions i needed to ask, and he was getting discouraged at the answers. he was hearing negative things, but not actually seeing his baby girl sit up with her knees bent, the way she is suppose to. he heard them say she will most likely need a brace on her left leg because its not working the proper way, but he didnt see her stand up and put weight on those little stick legs, the proper way, not using her spastic movements, but starting from sitting and slooooowly introducing the weight. so what he thought was an unsuccessful session, was the most eye opening. once i explained this, and woke Khloe up to show daddy what she could do...his big ol' heart was like a big bowl of puddin' ...all mushy!!!

So Amy, the PT, was amazing. i really like her. i like her ideas. i like that she is optimistic and she doesnt limit Khloe. she never once said 'she probably wont walk' she never ever lost sight of how determined Khloe is. she was amazed at how receptive khloe was to all of these exercises. Khloe did  scream through most of it, but not because she was in pain, just because she became tired quickly. which Amy assured me was very normal given she has barely any muscle through out her body. Her whole body is being effected by her CP. I was hopeful that it was just her legs, but it is throughout. Khloe shows a dominant weakness on her left side. When she is standing and receiving weight through her legs, her left leg bends, and her foot turns in, almost as if her leg is trying to turn backwards. we have noticed this before, so it was not a surprise. Her balance is off, which could also be because she is cross-eyed (which is stemming from the low muscle tone (weakness or limpness) through her body) it WILL NOT correct itself. ever. those muscles, because of her CP will not get stronger. she will need surgery. we are in the  LONG process of attaining an ophthalmologist that her insurance will cover, and that is not too far away, and one that our pediatrician is comfortable sending us to. We also learned that Khloe will more than likely wear a brace on her left leg to help correct her leg, and allow her to retrain her leg so she can use it properly.  after watching Khloe today, i am so amazed. amazed at what this little girl has already trained her body to do in order to accomplish what she wants. NOW we must break those bad habits!!! I watched Khloe stand for the first time today, the CORRECT way. she went from sitting to standing (with help, she didnt stand on her own) she wasnt standing because we pulled her up, and she stiffened to maintain her stance. she did it the correct way!! she sat up, alone, unassisted, the correct way.  GOD is good.

So yes, we got some answers on how to help her. we got some answers on what is being effected. we learned that there is some hope that she will walk. Amy is confident that she will walk. she did say- it probably wont be on her own, but she will get there.  

Khloe before PT with the anointed cloth we got as a gift to help heal her.

I should say, the other day a woman my mother works with gave her a cloth for Khloe that had been anointed and prayed over.  She was very adamant on the fact that this would help khloe. I have never been one to believe in that sort of thing. i mean, i believe in miracles, but never on holy water, or things blessed. Before this session chris and i prayed with Khloe while she held the cloth. I rubbed it all over her--i mean hey, im willing to try anything. while we were waiting, i was taking pics and chris grabbed khloe buy the hands, and she put weight on her legs. i thought it was a coincidence until she continued to do it, the proper way, through out therapy.  i should also tell you that my mother received some poor test results regarding her health, results that could be life threatening, this woman also gave her a cloth...the day the cloth was given to her, she went for a follow up apt to figure out a plan as far as how they would address this health issue, the doctor tells my mother her previous dr read the results wrong. she was fine.  it could all be a coincidence-i chose to say its the divine work of my LORD!!!