You got a lot of nerve!

I don't have the nerves for this. 

We knew the nerve damage was bad, we knew her legs didn't "work" like others, we even knew that she would always have trouble with her legs. We didn't know how much damage though, we needed to know if she could feel, if the brain signals were reaching her legs, and which nerves were working and which ones weren't. 

I introduce you to the NCV or Nerve Conduction Velocity test. 

A nerve conduction velocity (NCV) test - also called a nerve conduction study (NCS) - measures how fast an electrical impulse moves through hour nerve. NCV can identify nerve damage. During the test, your nerve is stimulated, usually with electrode patches attached to your skin. (Hopkins, 2021) www.hopkinsmedicine.org 

A test that literally shoots electric shock impulses through the skin to see which nerves react and how much damage there is. I know what you're thinking, because I was thinking it too. You're brain just said "wait, so..." Yes, electricity to my baby's legs. I don't have the nerves for this. 

The test began with a local anesthetic given to her legs. They needed a ground base to determine her normal nerve function. I was O.K. with that because it meant she wouldn't feel it, BUT, it would wear off and she would feel the next part. 

I know as parents we all want to take any and all pain that our children would ever feel, anything from a paper cut to a bike fall. We'd take the pain, well, I don't know about paper cuts, those things HURT! LOL. The point is though that the thought of our babies going through pain puts us in a lot of pain and we'd do anything to prevent them from getting hurt. 

My parenting skills were about to be put to the test. I would have to hold my baby girl down while they sent electrical impulses to her legs. It was gonna hurt and the face that she would see would be mine. It was a necessary evil, we had to know just how damaged  the nerves were. I held her tight and prayed so hard that it would be over quickly and that it would provide us with the necessary information. It was over in a blink or at least it felt like that, God was there holding both of us because just like us, he is a parent and doesn't want us to feel pain. He would've taken our pain if he could. 

The test was over and the sweet volunteers at Texas Scottish Rite Hospital stitched Valencia a beautiful quilt that I quickly wrapped her up in and held her tight to calm her down. A week later we got the results, the doctor informed us that the test was a success but the damage was extensive, it was as though someone took a knife to her nerves and cut them off from the thigh down. She could feel touches, pain and numbness. Some nerve signals could through but not all and that is where our journey continues. 

Casting Director

Grasping the Casting

After visiting with our pediatrician he immediately referred us to Texas Scottish Rite Hospital for Children. Of course being a Dallas native I had heard of this Hospital and the wonderful work they do for kids, never did I imagine we would become a Rite Family.

You can imagine the fear, shock, thoughts, that were circulating through my head. I didn't know what to expect. Valencia was born with her legs so twisted and wrapped in the bands that her legs were so misshapen and we weren't even sure if she could feel them. I remember keeping them covered even back then, I didn't want others to look at me in judgement. They didn't know that her pregnancy was normal up until she was born, they didn't know that I was dealing with daily guilt thinking that I caused this. They didn't need to know and by they I of course mean strangers, Valencia has had a village of supporters since she was born, they never judged, never questioned, just helped whenever and wherever needed. I tear up when I think about the amount of support we've had, the hugs, prayers, money, and time that everyone has helped with is nothing short of a miracle sent to us from God, he knew we were gonna need it. I digress, back to our Scottish Rite initial visit. 

 We got a call a couple of days after the referral to schedule an appointment. They make everything as smooth as possible for the families, I guess they know that we are freaking out on the inside. I mean wouldn't you? My mom of course accompanied me to her visit and every visit their after, I am so grateful to her. When we arrived Valencia was only 1 week old and after x-rays, ultrasound and numerous physical assessments, we were told the treatment plan. 

She would need to have full leg casts on her legs for the first six weeks of life with us visiting every week so they can change them out. Each time they would hold her legs in a different way in order to hopefully correct the misshapen contour. She wasn't in pain as far we could tell, she did hate having the casts removed though, it was done by Art and he was so awesome, the vibration would scare V so bad she'd just scream but only for a minute, she's never been a complainer for any procedures and that continues throughout all other procedures as you'll learn about later on. Doctors have always been so impressed with her ability to handle procedures and/or surgeries. 

Her casts gave her middle name Bella a whole new meaning, she would sometimes sound like a bell. When she had her casts on and when you'd pick her up you had to be careful because if you didn't hold her just right her casts would clink together and sound just like a bell. Each time it happened she would smile and if the saying is true "each time a bell rings an angel gets their wings" V has given a lot of angels wings. Her journey continues after the casts were off and each process we've learned so much. 

If your child also need casts on, just remember it is nerve wracking but only to us families, the babies are so resilient and don't even notice them, well hardly, refer to previous paragraph for bell sound! Keep in mind that it is only temporary and that it is working for the greater good of your baby. Feel free to comment below with questions and/or your experience with casting. 

O.k. so now what?

 O.k. So, now what?

You can imagine the shock after realizing that Valencia's legs were so close to being amputated. There were no warning signs. No distress, no pain, nothing. When Valencia all the sudden had to be out and her legs were so wrapped up they were the color of blueberries, with as tiny as she was the sight was scary even scarier if it's your daughter's legs you're looking at. Once her legs began to regain color the relief was overwhelming, but, now what? The questions flooded my mind. Can she feel them? Will she walk? Can it be fixed or corrected? Is the rest of her o.k.? So many questions, but all I could do was listen. I listened to every doctor that came in and would overload my pre-degree brain with words that only google could help me understand. 

I was a new mom with a baby with a health condition (still didn't know what it was) so scared was no where near what I was feeling I was simply put OVERWHELMED. I knew one thing the first step that any new mom has to make and that was to choose her pediatrician. I knew that doctor that saw her in the surgery room was the the doctor I wanted, after all he was the first one to see her legs in their first light so he knew the uphill battle we would be facing. I wanted him. If there was nothing else I knew I at least knew that. I called the doctor's office and they immediately got me in. Apparently he told his office to anticipate my phone call and to schedule me immediately.  I was too excited to know that there was an opening. 

We stayed only two days in the hospital and Valencia had constant check ups while there. I would just listen to all the doctors, I would take notes, I would take pictures, I've always known that knowledge is power but in this instance I had none. I felt helpless.  I only knew I had to get this new knowledge and quickly I knew that our journey was just beginning and I needed to know everything I could so that we would know how to care for and handle Valencia. 

If you are facing the same situation with a child of yours my advice right now is to start a binder, have lots of notebook paper and write down EVERYTHING, questions, notes, what doctors say, everything write it down and keep it all. You will be amazed one day how far your family has come, I'm thankful for my notes and it's helped me with so many doctor visits.