Ashlyn is our special 14 year old. She was a happy and healthy baby. We didn’t know until she was 6 weeks old that she had a chromosomal abnormality. We couldn’t get into a pediatric geneticist until she was 3 months old. It was then that we learned that a piece of her 6th chromosome was missing. This was very rare with less than 25 cases in the world similar to hers and none on record just like her. I felt amazed that God would trust me with such a special little girl. This also meant that no one knew what the outcomes would be for her.
“Wait and see,” is what they said. Chris and I were sure that she would be almost normal.
We were wrong.
With each passing month, each passing year it became more and more clear how wrong we were. I asked God for wisdom. I read What to do with Your Brain Injured Child by Glenn Doman and it became my guide.
I let Ashlyn lay on her belly all the time. It seemed like forever until she lifted her head, but she did it! I made a crawling track for her and eventually she started to scoot! That is, after many excruciating months in a brace to fix a right dislocated hip. Still, that right side didn’t seem quite right. She would drag that leg behind her while using the left leg to move forward across the floor.
It took many years and a trip to the Family Hope Center to get Ashlyn to start the cross-pattern crawling. Learning to climb up the stairs is what did it for her. I was overjoyed! I was ecstatic! I didn’t care how long she crawled. I knew she would get up and walk eventually.
Again, I was wrong.
She didn’t get up and bear weight on her feet. Slowly, ever so slowly, a mysterious and invisible force inside of her body began to pull her feet inward, the right more than the left. The legs began to become internally rotated on the hip sockets, the right more that the left. I didn’t notice and neither did all the doctors and specialists that she went to.
Finally we recognized a progressive club foot deformity. We employed many different types of therapies and braces which allowed her to stand independently for the first time when she was almost 9 years old and take 11 steps by herself by age 10.
We built her a walking track and she worked up to over a hundred trips a day! She could walk independently around the house.
However, that invisible force kept on pulling, robbing her of all the progress she had made. Now the only option left is surgery. I hate the thought of surgery. The pain. The 8-12 weeks of recovery and non-weight being. The bulky and difficult casts. The unknown outcome. The scar tissue and possible pain and arthritis later in life. I asked God for wisdom and I figured that we had to give Ashlyn the chance to walk.
No surgery would mean no walking.
I decided to get two opinions on Ashlyn’s case. The first with Dr. Sorenson at Hershey Bone and Joint Institute and the second with Dr. Herzenberg at the Rubin Institute for Advanced Orthopedics in Maryland. We saw Dr. Sorensen first. I like him so much! He recommended a Posterior Medial Release for the left foot and a Talectomy for the right foot (removing of the talus bone.) He had gotten a medial release when he was 12 years old and it has been great for him. He thought that Ashlyn would be able to walk just fine! I was so encouraged and left his office with hope.
I don’t ever remember leaving a doctor’s office with so much hope!
I researched the two doctors online and my heart sank. Dr. Herzenber had around 30 years more experience that Dr. Sorenson. I didn’t want to travel all the way to Maryland to see him, but I felt like I would be a horrible mother if I didn’t.
Thankfully Chris came with me on the day of the appointment. The drive was long. The wait in the office was even longer – 2 ½ hours in the room! Dr. Herzenberg sure knew his stuff! He said he had done many talecomies over the years but came to realize that a triple arthrodesis produced better results. A telectomy didn’t leave a joint at all, just scar tissue between two bones that didn’t fit together. This was not good for a major weight bearing part of the body. A triple arthrodesis would fuse three smaller joints but reform the talus bone into a working joint.
I left that visit feeling like this surgery would be totally impossible!
I had to give Ashlyn the best surgeon and the best option, but I could never drive back and forth to Baltimore time and time again for pre and post-op visits. I could never stay away from my family for the days that she would be in the hospital.
I decided to talk all of this over with Dr. Sorenson. I didn’t know how he would react. Some doctors bristle when you question their authority and opinion. I prayed and prayed. When I told him that I had taken Ashlyn to see Dr. Herzenberg for a second opinion he said, “Oh really! He is wonderful. I actually went to see him for a second opinion when I needed knee surgery.”
I showed him the report of Ashlyn’s appointment and Dr. Herzenberg’s recommendations. He sat down and read the entire report, WORD FOR WORD! I never expected that! It was clear that he admired this other doctor greatly.
When he had finished, he said, “I see his point with the triple arthrodesis.” He examined Ashlyn’s feet again and declared, “Yes, I think that would really work! Yes, I agree. I could do the surgery here for you or you could go see Dr. Herzenberg. I wouldn’t be offended at all.”
I told him that I would much rather do the procedure here in Hershey with him as the doctor. We talked about all the details; four weeks of casting prior to surgery to stretch the muscles as much as possible, three days in the hospital, 4-6 weeks in castes, 4-6 weeks in special boots.
“I am so glad you went for a second opinion,” he said at the end of the appointment.
I was overjoyed! I liked this doctor and the office much more than the Baltimore option, but I never dreamed that it would work out so well! I thanked God over and over for this humble and wonderful Dr. Sorenson. I prayed that God would make him brilliant beyond his own abilities!
As I thought about writing this article in hopes of raising a prayer army for Ashlyn, I realized something. I wasn’t really expecting this surgery to work, to actually give Ashlyn the ability to walk. I was doing it because to not do it would seem like neglect. But my expectations were of pain and suffering for Ashlyn, myself, and the entire family; not of a breakthrough. There were two reasons for my dismal outlook.
- There were other issues that made walking difficult, her hips and the 50% curvature of her spine that would not be addressed in this surgery.
- Everytime we had followed instructions that were supposed to help Ashlyn’s feet, it failed to do so. Doctors, therapist, and The Family Hope Center had prescribed 8 different therapies or equipement to use and here Ashlyn is…a 14 year old who can’t walk.
God has been coaxing me away from my expectations rooted in the past. He is bringing me into faith.
Faith that the future could hold more healing and more promise than I can see right now.
I am also asking Him for miraculous healing since I know that He is the great Physician and that He would do a perfect job with no pain or scar tissue! I am taking Ashlyn to a healing room this Saturday and hope to take her To Randy Clark’s healing service on Good Friday.
Ashlyn goes for her first casting on March 21st. Her second casting is April 4th. Her surgery will be on April 19th at Hershey Med Center. Could you please pray for God’s amazing healing to be displayed and for peace and comfort for Ashlyn and the rest of the family as well! I am not sure how I am going to deal with showers and potty-time with Ashlyn in two casts, unable to stand or walk at all. Pray for God’s wisdom and grace! Thank you for standing with us and expecting wonderful things!