...That is the question.
I am a bit baffled and confused and yet very pleased to say that we received the report from the SECOND MRI on H's brain and it is completely normal. There is NO brain damage. This is pretty significant being that the first report we received from AoH when we accepted her referral was that she had mild to moderate mental retardation and mild to moderate CP.
I had assumed this appt, which was up at the CP clinic at our Children's Hospital, was specifically for her legs and feet. I was hoping we'd hear that H does NOT need surgery and that she's ready to walk with a walker. Our doctor did confirm that H does not need surgery, her rickets is cleared up, and she was measured for ankle braces. But oru doctor also told us that he is "not convinced it is CP". Certainly H has CP like symptoms but they are not consistent with CP.
H has no symptoms of CP in her legs. She has trunkal hypotonia and her right arm is hypertonal. But her left arm seems "normal". Typically with CP one side of the body is completely affected or both legs, or the entire body. With these conditions, there is usually brain damage to the area of the brain controlling motor skills, causing spasticity and/or hypertonal muscles.
So why the CP-like symptoms?
Well, according to our doctor, two things could be going on. The more likely cause of her symptoms is a neurotoxin. Some type of poisoning in her body affecting her neurological functions. Ie. lead poisoning, mercury poisoning, bad vaccinations, yellow fever, malaria, etc. Our doctor told us that it would be a stab in the dark trying to figure out what toxin has affected her so adversely. There are only so many things that can be tested and hundreds of thousands of possibilities. He seemed very bleak that we would find an answer. He said most neurotoxins cannot be purged from the body and do damage immediately.
The second possibility is cysts or tumors on the spinal column. We will have a spinal MRI in the next two weeks. There is a possibility that, if there are abnormal growths, they can be removed and restore complete control of her limbs to H. We were told the procedure would be dangerous as it could have more adverse affects.
There is a 10% likelihood that what ever is causing her symptoms can be fully reversed. Meaning H could fully recover complete use of her entire body.
What are we doing?
Well, we saw another doctor who tested her for 3, yes, only 3 toxins. She said that was all they could test her for by blood. If these results come back normal, she will consider hair testing and skin testing. I asked if we could just do all the tests at once. She said, "let's just wait and see how these tests come back and we'll move forward from there. I can't imagine it would make a difference. Sometimes CP is just unexplained, there is no known reason for it"
As you can imagine, I am not satisfied with that. I am not satisfied with being so passive. I was hoping for a more proactive response. I mean, this is my daughter here and we've just been told that her disabling condition may be treatable, possibly curable. Not to mention that if she has a poison in her body, I want it out.
Well, I have scheduled H for a full biofeedback screening at a whole health clinic about 45 minutes north of us. It is a Christian clinic and they are very familiar with neurotoxicity. Within 1.5 hours they will be able to test H for thousands of toxins.
Processing...
I honestly don't know what to think. We knew, and KNOW that God created H to be our daughter. What ever condition she has comes with her and we will LOVE her no matter what. We would choose her a million times over regardless of whatever condition, prognosis, etc. She came home to us with a diagnosis of mental retardation and quadriplegic CP and with these we believe God created her perfect according to His glory. For these reasons, I have always felt I couldn't pray for complete healing. Knowing what CP is, I felt like asking for complete healing would be saying, "she's not good enough, Lord." or, "it's too hard, Lord." Ridiculous, I know. However, for the past weeks, possibly months, I have felt and urgency to pray for complete healing, but have been resistant.
During our family prayer times, C consistently prays, "Jesus, make the sickness to move from H's body so that she will walk and so that she will be just fine."
So many times I have tried to correct C and tell him that H is NOT sick but that she has brain damage that is permanent, etc. After our doctor's appt. at the CP clinic. I buckled the kids in the van, climbed into the front seat, in a fog, and cried for a bit repeating C's prayer, over and over again, quietly.
Why the Biofeedback?
Now, I know that God is fully able to heal, and that sometimes He chooses to use medical technology to heal. I believe God gives the gift of healing to many doctors. I know that sometimes he heals with no intervention. I also know He has created our bodies mysteriously and intricately and that He created our bodies to be able to heal themselves. I have been reading so much about biofeedback and I admit, I started off rather hesitant about the whole thing. But as I was asking the Lord for wisdom to know the right course, this came to my mind (which is interesting b/c we "came across" this in our devotions as well!!!):
Mark 5
24And He went off with him; and a large crowd was following Him and pressing in on Him.
25A woman who had had a hemorrhage for twelve years,
26and had endured much at the hands of many physicians, and had spent all that she had and was not helped at all, but rather had grown worse--
27after hearing about Jesus, she came up in the crowd behind Him and touched His cloak.
28For she thought, "If I just touch His garments, I will get well."
29Immediately the flow of her blood was dried up; and she felt in her body that she was healed of her (Y)affliction.
30Immediately Jesus, perceiving in Himself that (Z)the power proceeding from Him had gone forth, turned around in the crowd and said, "Who touched My garments?"
I love that this woman had the faith that if she simply touched the robe of our Lord she would be healed. I love that she felt the sickness move from her body. I love that Jesus felt the power leave him and go into her. I love this passage. I know that is was because of her faith that she was healed. I know I will not articulate this well, at this point, but here it goes anyway. I am not going to try to scientifically explain how Jesus was able to heal by touch, or how the woman was healed simply by touching a piece of clothing worn by Jesus Christ, nor am I going to attempt to theologically explain why Jesus felt the power leave his body. I am simply going to assert that the aforementioned passage points to something amazing about our bodies that GOD CREATED and that I believe there is some level of accuracy and truth to biofeedback.
So, our prayer, now, is this, "Jesus, move the sickness from H's body so that she will walk and be just fine. But, Lord only do what will bring YOU the most glory." We are praying in faith that God will heal our daughter, fully! Whether by homeopathics, doctors, or surgery. We are praying the the Lord will do in H, and our family, what would bring HIM the MOST glory.
Please join us in prayer, if you will!
