Showing posts with label blog. Show all posts
Showing posts with label blog. Show all posts

Saturday, January 14, 2023

Heel to the no!!

O.k. so electrocution test over, now we know, some nerves do not allow the brain signals to get through. Imagine giving someone directions over the phone, only the phone disconnected and you didn't know it so you just give the directions anyway only to realize that the person on the other end never received those directions. Yea, it's like that only there is no GPS to get you there. Some signals can get through but not all. Good part of that is she can feel things bad part, her legs don't move on their own. 

One of Valencia's heels was so tight, it allowed for no movement at all, brain signal or not. So, her doctor recommended a heel clip procedure. At first I was like oh "hell no," so they went into the explaining process. They go in and clip the tendon and reattach to allow for more elasticity and flexibility. They have to put her under general anesthesia (which is scary for any parent), I become internally terrified and worry about the healing process from the heel procedure, ha, sorry but the educator in me loves a good homophone*! 

It's an outpatient procedure and I love how the doctor's talk so nonchalantly about surgeries and babies and how this is their norm and it's totally fine. BLAH! BLAH! BLAH! All I hear is we have to put your baby to sleep and cut open her flesh and take apart her heel. I know I'm dramatic but in my mind if I prepare for the scary then I get pleasantly met with the serene. I digress. 

Valencia is a soldier, by soldier I mean the Special Forces. Everything she has endured up to this point she hasn't even cried or whined about. She really is so special. This procedure is no different. They took her in and put her to sleep with ease, she came out of it with ease and even picked a bright color for her cast. Pink, which was once her favorite color now it's blue. Valencia defines strength to me, her resiliency through everything, has changed me in ways she may never understand but her character is totally #goals. 


*words that sound the same but have different meanings

Sunday, April 3, 2022

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 😉


Monday, March 21, 2022

Bueller?

Life happens sometimes. It's important to understand that if you wanna make God tell laugh then tell him your plan! 

A lot can happen and suddenly, so I apologize for my absence and lack of blog posts. I just wanted to let you know that the blog will be back up and running and Valencia's story will continue to be told. 

Thank you all for your continued support of our blog and Valencia. If raising a child takes a village than I am more than grateful that Valencia has a whole state for her.