Rehab Medicine Visit Yesterday
You may remember that last summer I asked a great doctor at Shriner’s Hospital to review all of Jian’s records and give an opinion of whether he thought surgery would help her. Basically, he said that whether we did surgery or not, he thought that Jian would always need to walk with her crutches. So I told myself that I had my answer and that we could just move forward. Well, the way my obsessive mind works doesn’t really let me just drop things. So as we have been working with Jian’s physical therapist, he has been recommending that she do a Gait Study where they would use electrodes to identify exactly which muscles are working and what future potential she may have. He has also been encouraging us to go through with surgery when Jian feels ready to give her the best chance at more independence as she gets older. She has been adamantly opposed to having surgery, and I told her that we would only do it if and when she was ready. We were scheduled for the Gait Study a month or so ago, and the day before our appointment, they called and cancelled, explaining that her pediatrician could not give the referral. I got a sinking feeling at that time as if this were not going to go well.
We made an appointment with a Rehab Medicine doctor who could give the referral and went yesterday. She is a very kind doctor that we saw about a year ago. At that time, Jian would not talk or really demonstrate how she could walk holding my hand. Yesterday, everyone in the office was amazed at how Jian could run with her crutches, how she was funny and that her personality was really showing. At one point, she sat in the receptionist’s desk and pretended to be an employee there and had everyone laughing! Also, Jian had gained about 20 pounds since coming home 21 months ago. She has gone from wearing a size 3 to a 10-12 shirt. All of these things are great.
But the doctor took me into another room and spelled out a report from the neurologist that I had misinterpreted. She said that no muscles in Jian’s left leg are innervated by her nerves and have no potential of ever working at all. She would not agree to give us a prescription for the gait study, because she felt that it would not help anything. All of the hope I had stored up for the past 3 years came flooding out of my eyes. She explained that she thought that we had done and are doing everything in our power to help Jian. Jian is happy and strong and will live an independent life. But, according to medicine, her left left will never get stronger. When I told Daniel, in order to protect himself, he made some positive statement like, “Well, you never know what medical advancements will be made in a few years.” But I know that no one is going to spend millions of dollars in research to study polio which is almost non existent today. The doctor said that the other kids she sees with polio are confined to wheelchairs or have involvement in all 4 limbs. I am also aware that many children who contracted polio in the orphanage likely did not survive.
I know that we are blessed and that Jian is blessed, but I was still hopeful that she wouldn’t have to have this obstacle for the duration of her life. I am reminded about the Apostle Paul who prayed that the thorn in his flesh would be removed, but God did not see fit to do so. I am aware that by having this difference, our family is a bit more visible and has more of an opportunity to spread God’s message. I also know that the Bible says that “With God all things are possible.” I did not tell Jian everything the doctor said yesterday. Only that she did not recommend surgery, which she was delighted to hear. It is nothing short of miraculous that she has been able to compensate and accomplish all that she has done with basically her core strength to make it appear as if the left leg is functioning. I also know that Jian has a will and determination unlike anything I’ve ever seen, and I’m not about to extinguish it. So, if you will, please keep us in your prayers. Mainly for my hurting mommy’s heart to heal. And maybe don’t mention any of this to your kids or to Jian. Because even if the left leg never gets stronger, she will continue to set and achieve new goals as long as she believes that they are possible.