Good to go or so I thought

So she's walking with a dinosaur how awesome I thought! She's good we no longer have to worry, boy was I wrong. As she took those steps with the walker my mom and I could still see there was a problem. Her right foot was entirely on it's side as she walked, like flat on the side. Try to picture it if you can, just thinking about it brings pain to my feet, we didn't know how she was doing it. Didn't it hurt? Wasn't it sore? 

Now the thoughts really got worse, what if she CAN'T feel it? Uh-oh!! You wanna talk about a racing mind, mine certainly didn't stop. I put a call into the neurologist and orthopedic surgeon right away. What happens next is still one of the most traumatizing procedures that she has ever had to endure but, you want to know the really shocking part (ha, shocking - that joke will make more sense in a minute) she doesn't even remember it. The trauma happened to me!!! Allow me to explain. 

After setting appointments with her teams of doctors we went to show them her progress. They were happy but concerned. We had to see the Neurologist, they had to do what is known as a NCV test 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 your nerve. (hopkinsmedicine.org, 2022)

So, the test is a little different for a two year old though as you can imagine, they have to sedate her, they must get a baseline study for how her nerves react when they are at rest and then when they are not. The sedation part alone to me is bad enough but it gets a little worse. She's asleep and I am holding her while they shoot little burst of electricity through her legs to see which nerves react and which ones don't. This is important because like I said earlier our thoughts were can she even feel her foot pain? BUT, then they have to wake her up!  In order for the tests to be done correctly and for us to truly know the extent of nerve damage that the amniotic bands may have caused they have to WAKE HER UP!! Y'all what?? My heart was saying absolutely not you will not electrocute my babies legs to find out nuthin' ( Yes I spelled that correctly). My brain being more logical obviously than my heart said that it was necessary and they are literally neurologist aka brain surgeons so clearly they know what they are doing. 

Last warning to skip ahead before the trauma part, o.k. you've been warned. 

They slowly wake her up and give me instructions to cross her arms across her chest and to hold her as still as I can because they will be sending electrical impulses through her skin to her nerves and she may feel some discomfort. Um, excuse me allow me to send electrical impulses to you and see how much discomfort you feel but I digress. The procedure continues and my baby is jolted awake while I'm restricting her movement. I'm crying, she's crying, it's a mess and just as quickly as Valencia and I got ourselves into a traumatic fit, it was over. Please don't let the below picture fool you, V and I were not this calm. This picture is for research purposes only. I was too emotional to take a picture of our ordeal. LOL

The nurses were the absolute sweetest and even handed Valencia a homemade quilt to keep that the volunteers from Scottish Rite made. Yes, she still has it and uses it in the winter time. The tests results came back and Valencia did have extensive nerve damage in her legs, which didn't allow for some brain signals to reach them. This is why her legs do not always work the way she wants them too, but as even my logic was able to tell based off the crying she was most definitely able to feel them! 

*they also reassured me that it was just discomfort and not actual pain, no way anyone would actually electrocute my baby

Trauma over, well, until the next story 😉

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.