Brave, Strong Girls is a series from cuteheads that aims to shine the spotlight on special girls who have faced challenges in their young lives and continue to be examples to their friends and strangers alike. Through this series, we hope to show that different is beautiful and that the things that make us unique make us special.
Each girl will have a special dress designed and named for her and a photoshoot just for her. Dresses will be sold at cuteheads.com and all the profits from the sales of these dresses will be donated to the charity of the mother’s choice.
The charity of choice for this installment is Lily’s Toy Box, an organization that provides toys to children going through a difficult time.
Victoria is a beautiful four year old with a permanent smile on her face. I’ve gotten to know her mom Cara through social media, and we eventually got to meet in person at a recent cuteheads photoshoot.
Little did I know, that at that photoshoot, I was meeting an extra-special girl who has faced some pretty major challenges in her short life.
Victoria is immunocompromised. Her exact condition isn’t known yet, but she must undergo test after test and exercise extreme measures to stay safe on a normal day.
During a pandemic? The measures she and her family must take are extraordinary.
It’s easy to take for granted a healthy immune system in the midst of the COVID-19 outbreak. Many of us assume that, even if we get coronavirus, we’ll eventually be okay. That our immune systems are strong enough to protect us.
But what if the system that’s supposed to keep you safe is compromised?
I wanted to sit down (virtually, because you know… social distancing) to shed some light on what it’s really like for the immunocompromised during this time, and show you how brave and strong Victoria is. We chose this little girls pink tulle unicorn dress for Victoria because it captured her bright, happy spirit and love of twirling.
cuteheads: Can you tell me a little about what Victoria’s condition is?
Cara: Victoria has been constantly sick since she was a week and a half old. Doctors always thought it was normal sickness that children get. Because it was causing so many ear infections, she got her first set of tubes at 8 months old. After the tubes, she still had ear infections and was sick once if not twice a month.
When she was a year and a half old, they had to remove her tubes because they kept getting clogged and causing a lot of pain. They eventually granulated the tissue around the tube causing severe pain. Once the first set of tubes were removed and her ears healed, they put in her second set of tubes and removed her adenoids. We were hoping that would be the trick to getting her well. It was not.
She continued to get sick. They sent us to infectious disease specialists and immunology, who really did not do the most thorough work and ended up dismissing her. We found out last year that at time, she had low IGG that no one caught. After the second set of tubes and her adenoid removal, she continued to get sick and get strep. Doctors told us we should remove her tonsils.
The tonsil removal was supposed to be an outpatient procedure; however, it was not. She had trouble with the anesthesia and stopped breathing a few times. Once she woke, up she struggled to heal. We ended up in the hospital for 5 days and I truly feel like she never 100% recovered.
Since that surgery, she’s shown a lot of red flags. She’s always tired, has leg pain so intense she would want me to carry her everywhere, including to the bathroom, and she’s still always sick and throwing up at least once a month.
She ended up back in the hospital 2 times since her tonsil surgery. Last Easter, when we were in the ER at Texas Children’s, it just so happened the on call doctor there was an immunologist. I started explaining to him what had been going on and he decided to run a CBC, SED rate and C reactive protein test. Those results concerning and so he ordered more labs. Once we were able to leave, two days later I took her to her pediatrician who then sent us back to immunology. Immunology ran labs and again confirmed she has low IGG and had not responded to her vaccines. She also started growing gray hairs or her “Anna streak” as she likes to call it after the Frozen princess.
Right now we are in the process of getting a diagnosis for her and a plan to get her well.
cuteheads: How did you come to the decision to seek professional help to understand what was happening with your daughter?
Cara: We had been taking her to the doctor so much, I kind of went a little crazy and started researching her health records. I realized she has been to the doctor over 120 times since she was born. I always felt like something was off, but thought that the doctors knew what they were doing.
My family started saying “something is really wrong.” She kept ending up in the hospital. I think we really started pushing for more to be done for her.
cuteheads: We’re in the middle of a pandemic. These are crazy times. How are you feeling right now, knowing that your child is more at risk?
Cara: Frightened. Every time one of us has to get essential items, I cannot stop worrying that we have come in contact with someone that has COVID-19 or that it is on everything that just came in the house. I cannot seem to brush away the anxiety as I wipe down all of the grocery items with Lysol wipes and scrub the floors with bleach once the bags have been discarded.
cuteheads What extra precautions do you have to take?
Cara: Before the COVID-19 pandemic, Victoria had struggled with mouth ulcers for 3 months. Her rheumatologist finally put her on medication to get rid of them, so one of the first things I did was call and get a few months worth of the medicine. It is out sometimes so I wanted to make sure that she did not have to go without it during this time.
I pulled my oldest out of school a week before the schools actually closed in Houston because I was concerned that she would unknowingly bring the virus home. I had been watching the news and was confident that was the best thing to do. Thankfully, the school understood and put together work for us to start before all of the distant learning began. No guests. No shoes are to be worn inside, and if someone has to go to the store for essential items or prescriptions, they change immediately and shower once they are home. I was wearing a mask in the grocery stores the first week March and no one else was. It made me feel a little silly, but I knew that we could not risk getting this with Victoria’s condition.
I am thankful that we already had a good amount of mask and wipes stocked up since Victoria usually wears a mask when she has to go to her appointments and I am always constantly wiping things down.
cuteheads: What is your relationship like with your daughter? How does it differ from your relationship with your other daughter, Vivian?
Cara: Victoria and I are so close. She loves to help me do everything from making breakfast to folding the laundry or whatever she can do to be right by my side. Vivian is so sweet and we are also very close, but Vivian has more of an artistic side than Victoria does and she would rather spend most of her time drawing and creating things on her own. They are best friends and Vivian has really shown her little sister so much love and compassion. If Victoria is in the hospital they cry unless we let them stay together there. I remember one time we needed Vivian to go home and get rest and Victoria was so sad and crying so much the nurse asked if I would bring Vivian back.
cuteheads: What are some of the challenges your family faces when parenting Victoria?
Cara: This is a tough one for me. I really struggle to discipline her. Insert me cringing here. It is so hard for me. I am getting better at it though. I think the hardest thing is the ipad. When she is in the hospital I let her have the ipad, but when we are home I really do not like her on it and its hard for her to adjust to that. I feel bad because she doesn’t like to go outside and play like other children because she gets too hot or too tired very easily.
cuteheads: How have your other children reacted and adjusted to her condition?
Cara: Vivian my oldest is an old soul, she really does try to comfort her sister when we are having to do blood draws and when we get home she will lay with her and just be there for her. It is truly so sweet to see how much they care for one another.
cuteheads: Because of her condition, she isn’t able to go to school yet. What are the steps you’re taking to help her reach that goal?
Cara: We have her on a prophylactic antibiotic right now and we were hoping that would help, but so far it is not. We are going to more lab work as soon as we meet with immunology again, probably next week. They are monitoring her and trying to dig deeper into her immune system so that we are able to establish the best plan on care for her and she can go to school. The treatment that they will most likely end up doing is IVIG replacement therapy.
cuteheads: How have these challenges affected Victoria on a day to day basis?
Cara: Since Victoria has had 9 sets of labs drawn since Easter and been in the hospital so many times now she is afraid of everything and has panic attacks. She use to love getting her face painted and riding rides and now she wants to do it, but when it comes to be her turn she has a panic attack. It has been heart breaking to see her experience this and we are working on getting her into play therapy to help with it.
cuteheads: What have been some of the big wins for Victoria?
Cara: She is generally a happy kid. We haven’t really had any “winning” moments since this started, but we have had good days especially the day she got to let her little personality shine though when she was a model for Cuteheads. She was totally in her element and loved it!
cuteheads: How do you think Victoria can be a role model for others facing these challenges?
Cara: Victoria is such a strong little girl, even when she doesn’t want to be. Being so small and having to face so many doctors and iv’s and pokes, she really has been resilient. She is kind and caring and always includes others.
cuteheads: What do you want other parents to know about this condition? How can they help?
Cara: If your child is constantly sick, follow your gut feeling and dig deeper. I wish they would have done all of this when she was 2 when we originally went to immunology. Do your own research, ask questions and learn to read labs! I am constantly learning about the immune system now and all of the things that make it work. I have a notebook specifically for Victoria’s labs and doctors visits and it has really been a lifesaver for me. Sometimes the doctor even asks to make copies of the pages…. You have to be your child’s advocate!
cuteheads: What makes Victoria brave and strong?
Cara: When things don’t always go her way or it is a lab day she always finishes her day with a smile.
cuteheads: What do you want to be when you grow up?
Victoria: A mermaid
cuteheads: What is your favorite thing to do?
Victoria: Swim & help my dad make smoothies
cuteheads: What is your favorite thing to learn?
Victoria: About bunnies
cuteheads: What is your favorite thing to eat?
cuteheads: What is your favorite thing to wear?
Victoria: Unicorns dresses with rainbows
cuteheads: What makes you brave and strong?
Victoria: My sister
Purchase the Victoria little girls pink tulle unicorn dress now.