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 😉

 We are "WALKING" and "ROLLING"

Fast forward to when she is 2 years old and she still isn't' walking, crawling sure but walking no. She would get around however she found a way and she was still small enough to be carried around or put into one of those little umbrella strollers when necessary. Until one day...

My mom and I used to love to go to garage sales, so we would do that on pretty Saturdays whenever we could. Well we came across a little dinosaur walker that doubled as a seat scooter exactly like the one pictured below, she bought it for like $5.00. When we got it home we cleaned it up and put it front of V. We showed her how she could scoot on it and then showed her how she could use it to push it, (she used to knee walk so we thought she could push it instead of use it as a "walker" since she wasn't doin that yet) or so we thought. She stood up using the dinosaur walking and took off walking, just like that. No walking behind so she wouldn't fall, no stumbling, nothing. She stood up and walked with that little dinosaur everywhere around the house. My mom and I just stood their in disbelief tears rolling down our cheeks because this was the first time we saw Valencia using her legs to walk. We were stunned and completely happy. 

That little 5 dollar dinosaur became such a blessing to us that day. Valencia was walking, with a walker (per se) sure but she was still up moving those little legs they way God intended. It was a beautiful day and one we do not forget or take for granted. One thing to remember when dealing with a disability is that you always need to focus on the abilities. The little points of movement that otherwise weren't there, the smiles that can come unexpectedly, just the small victories that most can take for granted. Yes, we've been walking and rolling through our abilities ever since. 

All of this before she's one?!

She had already endured more in her first 6 months than most have in their entire lifetime.

Valencia as a girl's name is of Latin origin meaning "strong or healthy". It derives from Valentinus, a saint's name. It is also a place name for the city on the Mediterranean coast of Spain, known for its oranges.

    I named her correctly. She is strong, stronger than many people I've met. Within her first six months of life, she has already endured more than most have and will endure in their entire lifespan. I am in awe of her spirit whenever we are faced with a challenge. She not only takes it head on but also does it with a smile.    

    So, just to recap we have had six weeks of casts on both legs, six weeks of a Ponseti brace with a bar keeping legs separated, a NCV test and multiple blood tests as well as multiple other tests to check all areas of Valencia's body. Whew! And we are still enduring more. 

    I wanted to take a break from the procedures though to tell about the victories too. V is for Valencia and is V for victory. (Yes, I'm an educator at heart). 

    I remember this day as if it was yesterday cliché to say I know but it's true, because it's one of the happy days. One of the days, we got good news from the doctors and not more procedures or test to do. We got to take the casts and braces off, her little legs would get a break *no pun intended. 

    This was her first car ride home without a brace, a cast, or a wrap. Based off her look I don't even think she believed it! We were excited on this day, it gave a sense of "normalcy" little did we know that our normal would always look a little different from others. It is a life we have learned to love and continue to learn from each day. Things may look different for us but we have embraced it and share the victories as well as the setbacks with all. 

To ask or not to ask, is that even a question?

Valencia was once asked by a fellow student "what's wrong with you?" without hesitation she responded with a "nothing, what's wrong with you?" I turned my face and giggled, I was both amused and proud of her response. 👏 We never discussed how to handle situations like this so her response was genuine and funny. If you know my daughter then you know that her heart is sincere. 

It did raise an interesting point however, how should one ask about her journey? 🤔 Whats the proper way and how do we welcome the conversation. We have no trouble discussing her journey but the way it is asked can be critical in the return response. 

Here are the best ways to ask should you wonder about anyone's health/ life/condition.

• Would you tell me about your journey? 

• What happened?

• Was she born this way or was there an injury?

Here is how NOT to ask unless you want the south side of where G and I come from to come out!  

• What's wrong with her? (Side note: nothing)

• Did she fall or something? (Yes, this has been asked)

• She can walk why does she need a wheelchair. ( insert eyeroll here) 

Remember that with most disabilities or families with disabilities, we are more than willing to share and discuss our stories (ie. Our blog). What we are NOT willing to accept is the fact that someone may think that there is anything wrong with them, because there isn't. They were made special, beautiful and different BUT not weaker! Ask away.