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Jan 7, 2018 Latest post:
Apr 6, 2018
We thank God that He has brought you here to Rebekah's page. We hope your faith will be strengthened in Christ Jesus and that you will grow in the work of prayer for Rebekah and for many others for whom the Lord has planned for you to stand in the gap.
Rebekah was diagnosed by a Children's Orthopedic surgeon on Dec 20, 2017 with Complex Regional Pain Syndrome. The diagnosis was confirmed by our great Pediatrician who has 35 years of experience and also by a doctor with Scottish Rite Pain Center. This is a dreadful neurological disease, which brings constant, intense pain. We have been going through stages of grief. First came denial, "maybe it's a misdiagnosis". Second came anger, "God why our daughter?" Third came bargaining (this is the toughest one for me), thinking that if I pray the right way (no unconfessed sin, praying for her healing so she can be a missionary for the glory of God) that God must then heal her. Fourth came depression. We have certainly had moments to cry as we come to grips with the truth that it is possible Rebekah may have to suffer in great pain all her days on this earth. Fifth we are coming to acceptance. As we think of the cross, we know God is full of grace and we are, without question, loved. Our loving Father will walk with us and give us grace for whatever He leads us through. In reality, any given day is a mixture of all five of these experiences for us.
The level of pain caused by CRPS is measured as one of the most severe on the McGill University Pain Scale (more painful than unprepared child birth or having a finger amputated....that is hard for me to write and think about). Rebekah describes the pain as burning, crushing, and sometimes like a knife is digging around inside her (my eyes tear up and a lump suddenly appears in my throat as I write). Her pain is constantly a 9 out of 10 and goes to a 10 out of 10 whenever her affected area is touched, even ever so slightly with a cotton ball. Her pain started in her left toes, foot and ankle (Dec 15, 2017). It has now spread up her left leg and has reached several inches above her knee. It has recently spread to her right side toes and foot. Literature and doctors both say there is no know cure for this syndrome. But we know that while many things are impossible with man, nothing is impossible for God!
But the Lord has been so gracious to us during the past 3 weeks. Our hope is in the Lord not in the healing we hope the Lord graciously brings (though we do hope longingly and in faith). We took Rebekah to elder prayer, Saturday 1/6/18, at our church and were truly blessed by the love, comfort, and intercession the Lord provided through His people. One elder asked Rebekah today, "when you are alone in your room, what questions do you have for God?" Rebekah thought and answered, eyes tearing up, "Just will I have this for the rest of my life?" It is obviously a question mom and dad have pondered as well.
For treatment, we are currently doing mirror therapy at home 3 times a day. Please pray Rebekah's brain will be tricked into thinking her affected leg is ok and the nerves will reset. We have a decision to make this coming week about whether to go back to intense physical therapy everyday at home 4-5 hours of putting her through crab walks, pushups, desensitizing rubbing, foot massaging, etc (these all cause her tremendous pain and have many times sent Jan to weeping as she has had to put Rebekah through these therapies herself). If we return to these therapies it will be dad's turn to be the therapist (and I dread it) since Jan's teaching job has resumed. We are scheduled to travel to Kansas Mercy Hospital Feb 8 for a consultation appointment and possibly be placed onto a waiting list for a program of 3 weeks of intense (7 hours a day) physical therapy there. The doctor who trained them began this program in Philadelphia and has had a 90% remission rate with teenagers.
Would you please take a minute right now to stop and pray with us? Please pray for: 1. GLORY. Jesus' glory to be spotlighted through this trial (what a waste if our painful times failed to bring him glory and honor)! 2. HEALING. Rebekah's nervous system would be reset to a state of shalom. 3. WISDOM. The Lord to direct our steps to the best treatment option (Intense PT for weeks out of state, Acupuncture, Hyperbaric chamber, etc.) 4. PROVISION. It is unclear if our insurance will cover treatment. Pray for the Lord to move hearts of decision makers to approve quickly. 5. STRENGTH. This trial is affecting our entire family. Other kids feel neglected. We are tired.
We love you all and thank God for the loving family into which He has adopted us!
Paul, Jan, Rebekah, Roman, Hudson, Ellie, Samson, and most importantly Jesus ("I am with you always to the end of the age" Matt 28:20)