It takes a village

Valencia is gonna go to big kid school

Valencia is headed to kindergarten, big kid school! I'm excited and happy about this new milestone. She's gonna go to the same school as me, so it will be a lot easier in the mornings and I'm there should she need anything. It's gonna be so great!

One small, teeny, tiny issue. Our campus is large for a five year old, especially for a five year old that doesn't walk well for long distances. She can walk around a classroom just fine but to ask her to walk from the classroom to specials, (ie. PE, Art, Music) and to and from the cafeteria, is a difficult task to ask. She needs a wheelchair. Oh, my goodness. I have sooo many thoughts right now;

    

• How do we get her a wheelchair?
• Will it be made in time for her to begin school with?
• How much does this costs?
• How are we going to do this God?

I'd like to say that I'm a sane parent, I don't panic, I don't cry out in stress, I don't worry about things that I have no control over. Psst, who am I kidding? Yes I do!! and in this moment panic and pain were real not just some mythical greek creatures made up to tell the story of Hercules.

We got Valencia measured for her wheelchair and it has to be made specifically for her due to her body and her needs. Insurance can cover a large portion but our out of pocket quote had us in shock. Our out of pocket portion was gonna be $5,000.00. Now, many of you might not know this but we do not receive disability benefits for V. The government states that I make too much to be eligible to receive any kind of assistance for her. I won't bore you with my soap box on the disability drama for now (saved for a later post) but needless to say we weren't gonna be getting help there. We were on a time limit to pay the out of pocket amount because her wheelchair had to be made in time for school to start so we only had two months. Enter her village, someone suggested starting a go fund me. 

We are huge proponents of our daughter, so our responsibility. Asking for assistance was never one of our go to's so this option was messing with us mentally. Up until this point we've been able to provide everything Valencia has needed and wanted so realizing that we couldn't provide one of her major needs was difficult to admit. We ultimately had no choice, our time was running out and her wheelchair needed to be ordered ASAP. I did it, I created the go fund me and put it out to our social media platforms. When I say within 24 hours, literally 24 hours of us creating the go fund me, we had the money raised. 

God did it, he showed us to trust him as always and he would provide. Even now 7 years later as I type this I'm in tears thinking of how people who I hadn't spoken to since high school donated, people who I only knew through social media donated, people who I know didn't have much to give still donated what they could. I stay in amazement even still. 

Thank you again to her village, for providing when we couldn't, for helping when we needed it, for continuing to support V even though it means just reading and sharing her story. Thank you, truly. 

We payed our out of pocket, ordered her wheelchair, V inherited a new nickname and we inherited a new worry. Everyone say hello to Nascar! 

Her first day in her wheelchair

Growing Pains

 A new concern means a new doctor    

Valencia is now five years old and growing quickly, maybe a little too quickly. At her yearly check up her pediatrician noticed how fast Valencia was growing and became concerned. Not worried but just concerned, with doctors' the difference between those two words is big. I prefer the later. He requested a referral for us to go see an endocrinologist. Endocrinology is the branch of medicine concerned with endocrine glands and hormones. Off we go to another doctor with new tests. 

As a mother, or rather a person in general I've always had this fear of the unknown. I am a deep firm believer that knowledge really is power, that's one reason why I love teaching so much. I am a continuous life-long learner. The more knowledge I have about topics the more prepared I feel. It helps to ease my anxiety when new situations come up. I'll be the first person to take a deep dive into research and absorb all I can about a new topic. For example, I have a very deep rooted fear of spiders,(IYKYK) I now am very aware of how many species exist in the world (45,000) and how many of those are jumping spiders (4,000). This new found knowledge did not help my fear, shocker I know, hello 45,000! but it did allow me to be more aware of the different species thereby keeping me prepared and ultimately easing my fear level from dead on sight of spiders to just running away from them instead. Do to this research based fear I now know the most random things about the most unusual of topics. I'm a lot of fun at trivia nights, lol. This ridiculous fear aka unnecessary skill kicked in handy for this new physician.

I dove head first into what exactly endocrinology is and all possible reasons for having to see one. Since I knew her physician's concern was her growth chart, I had a feeling her condition would just be monitored. Again, knowledge is power and it helped to walk into a new visit with some background knowledge. 

The testing for the endocrinologist wasn't so bad, a blood test and an X-ray was what he needed to let us know that she has premature adrenarche. "Adrenarche is a lot like puberty; it's characterized by changes in the body as your child enters her teen years. Premature adrenarche is when these changes begin early, before age 8 for girls and age 9 for boys. It's usually nothing serious, simply your child's body maturing in its own time." Children's Hospital, 2023. Basically, her physical hormones and bones are growing faster than her actual age. So when we said she's growing fast, she literally was. This new diagnosis would have to be monitored through X-ray's every six months but that would be the extent of this treatment. New doctor added to Valencia's team ✓ and this doctor would prove to be a saving grace in the months to come, I just didn't know it yet. 

Waiting for Endocrinology

First steps, can't be?!

3, that's how old Valencia is, just three years old. Already she has endured so much, casting, bracing, surgery, testing, you name it she had it. She had a medical record file equivalent to an eighty year old. She had a file full of all the things that make the next milestone possible. Valencia would soon be walking!

Up until now, Valencia hasn't walked yet. She didn't really have an opportunity to learn how what with casts, braces, and surgeries her legs were never really "free" long enough to learn. Developmentally we knew she would be behind, but considering everything she had to go through we were never really sure if she'd be able to walk or how well. Imagine our surprise to see her just kind of take off one day. She remembered the feeling from the dinosaur walker and she did it her way, Valencia's way. 

Now, it's awesome to be able to tell you that we have had both then and now an amazing village of supporters through all of her trials and successes. This was no different. I remember walking into work all excited to share that Valencia took her first official steps on her own, everyone immediately cheering, except for one. This one particular mom had a baby around the same age as Valencia and upon hearing of my news made the statement, "She just started walking at 3?, my daughter was 1 when she started walking." Y'all I'm not ashamed to say that I saved her life that day. Tehe.🤣 Just no sooner she said those words my village of supporters were ready to jump and take her down! They were shocked that anyone would be so oblivious to the fact of exactly how monumental this moment truly was. I stepped in the way of them and said wait, maybe she doesn't know all there is to know about Valencia and her trials, let's give her the benefit of the doubt. We've worked together all year, and anyone who knows me knows that I share pretty much everything about V, but hey, some people like to live in their own bubble and forget there is a whole world with other people in it. 

Yep, it was a double victory kind of week, Valencia started walking and I was out there saving lives. in the words of Ice Cube, "today was a good day." 😎

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. 

 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.

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. 

Brace yourself

 Brace Yourself for what comes next

    O.k. whew! We got through casting. Her feet looked dramatically different and that only took six weeks. The amniotic bands that were wrapped around caused bilateral clubfeet and that was just one condition. The casting worked though, I kept saying that to myself because I knew deep down that we weren't done but I wanted what my baby just went through to be over, no more procedures, "We're done right?" I would ask the doctors. I.WAS.SO.WRONG!!! We were just beginning. 

    So, her feet looked so much better but as I stated we were just beginning. She now had to be in what's called a Ponseti brace (named after the inventor). This brace would have to be worn 24/7 for 3 months only to be taken off for baths. When I tell you children are the epitome of resilience they absolutely are. This brace wouldn't be worn by the strongest of men or woman today without a full fit and yet here my 3 month old baby was wearing it daily with a smile. She learned how to crawl with this brace and would just happily mosey around the house, she learned how to sleep on her side while leaning the brace against her crib, she even taught me how to hold her and carry her without a worry while in this brace. Yes, resilience is born in every child and somehow as we grow older we grow out of it, that's one trait that 2020 retaught us for sure.

    One take away that I hope we all get from learning about Valencia's journey is the trait of resilience. We all have it, it's what we do with it that makes a difference. 

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. 

To amputate or not

We've been walking and rolling since 2010!

Valencia's story begins on the morning of June 4th 2010. I remember I had the day off and I was looking forward to getting a lot of stuff done that day. Valencia had other plans and so did God. They say you wanna hear God laugh then tell him your plans. 

It began like any other pregnancy I went into the hospital and quickly wanted an epidural I didn't want to feel not one single pain. No, I'm serious NOT.ONE.SINGLE. pain. lol. Valencia had other plans again, this little girl has been working on her own schedule since then. 

As I was dressed in my gown and awaiting little girl's arrival I heard a very scary noise. The machines started to beep and make an alarming sound (ya know the kind you don't want to hear when you are plugged up to them) doctors came and and I was quickly told that my baby was in distress and we needed to do a C-section ASAP. I went from calm to scared within seconds, everything was changing. Flashes occurred where I thought about her room and how I spent all that time making everything "just right" as if she'd actually give an opinion about her room lol but I wanted it to feel right. It was Winnie the Pooh and felt like a calming spa that I knew she'd be able to feel the love in. I wanted so much for her to experience it but at the time of the emergency my fear was that she never would. They rushed me into surgery to get her out as quickly as possible, that's when the real root of the problem was discovered. She was out within seconds and her heartrate was back to normal. A new discovery was made that would impact our lives and teach us the power of prayer, pride, and persistence. 

Valencia was wrapped up in both the umbical cord and the amniotic bands that were wrapped around her legs so tight they were nearly cutting off her legs. They immediately started to call in other doctors and began talks of having to amputate her legs. As I lay there unable to move (thanks spinal tap) they were checking her out and seeing what would need to be done. I remember just praying and praying please God keep her legs, keep her legs. I was scared and for the first time among many future feelings felt the first "mom guilt." Did I cause this? Did I do something wrong? The thoughts filled my head so fast I could barely keep count of all the doctors in the room. Let's also keep in mind I still hadn't seen her at this point, when the last pediatrician came in her legs were slowly starting to gain color back. Her legs would be saved.

They wrapped her up and put her next to my face so I could see her, she just licked my face as if to claim her property. Yes baby girl I am yours and you are mine and thus begins our journey.