What is PFV?

Our Latest Adventures, Retina & Cataract Removal, Strabismus Surgery

Persistent Fetal Vasculature or PFV is a developmental disorder that occurs at birth. In utero, the eye is built by the body using different structures – called stalks. In a typical child, the stalk will regress or wither away when it is done building the eye. In people with PFV, the stalk fails to regress causing structural abnormalities that usually lead to impairment in their vision (ASRS). In most cases, PFV will only affect one eye.

When looking at the eye, you will first see the cornea, followed by the Pupil, Iris and lens. But, the structure doctors look at first when dealing with a PFV case is the Retina. The retina is a thin layer of nerve tissue that is very light-sensitive that sits at the back of the eye. When a person sees light, the light enters the eye through the Iris and heads to the back of the eye where the light is processed into images which are focused and reported up to the brain, producing sight. Since the connecting the retina to the front of the eye never retreated in people presenting with PFV, the light is unable to filter properly through the Iris and its trip to the retina is disrupted. This causes poor to no vision in these individuals. This disorder usually does not progress after birth but as the eye continues to grow, the stalk and its components will not grow with it. As the stalk holds back other structures of the eye, it may cause other issues moving forward. The stalk may cause the retina to detach or the person’s eye to develop cataracts.

As you can see from many discovery stories on our blog, diagnosis of PFV is hard to come by. Some are lucky enough to spot it at birth but in others, it may present itself in other ways that lead to misdiagnosis. For example, PFV can present itself as the child being cross eyed (Stabismus), having abnormal eye movements (nystagmus) and as having a lazy eye (amblyopia) (ASRS). In many people with PFV, the affected eye will appear smaller than the other, however this isn’t the case for everyone.  When a doctor believes the person may have PFV, they will look at the back of the eye to see if the stalk is present. Ultrasounds or MRI scans may be required to rule out other disease like Retinoblastoma – a rare tumor that may present itself on the back of the eye. 

When Retinoblastoma is ruled out, the doctor may suggest surgery to remove the lens, remove the stalk and in some cases, reattach the retina.  The surgery may not completely restore the childs’ vision to a state of “normal” but, without the stalk holding back the structures of the eye, the function of the eye can be improved and the affected eye may grow at a typical rate post surgery (ASRS). 

For most children and families, post surgery starts an entirely new journey. A contact lens is usually prescribed to children who had their lens removed during surgery. They may also get glasses to use instead of or in addition to the contact lens. Soon after surgery, your child may begin patching therapy to help with their strabismus or amblyopia. 

Unfortunately, peer reviewed studies of people with PFV are far and few between. When you do a general search of PFV, you will be directed to articles published that are full are very medical terms with a lot of conjecture and not many reliable numbers. The truth is, PFV is rare and doctors simply have not had the opportunity to study this disorder to its fullest potential. Until more research is done, we will continue to share what we have learned from these various medical journals and will continue to hope for more research moving forward!

“Be Brave Enough to Suck at Something New”

Our Latest Adventures, Uncategorized

I’m not very good at this. Yup, I said it. Blogging and talking our journey does not come easy to me.

You spend your entire life working towards the future. You spend your high-school years learning all the basics. You move on to college and find out who you are. You find your passion. When you get out of college and start your true adult life (I know, what a millennial thing to say right?), you find what you are truly good at and what works. You hone your skills. You earn a paycheck. 

This is the path I followed, with a few bumps along the way. I was always sure to pick subjects to study that I could excel at. Whether it was political science or speech and language, I absolutely loved earning both degrees because they lit a passion in me and I was good at them! My brain works in a black and white way when it comes to learning. Facts and ideas go hand in hand. I thrive following a directive and knowing the end result. 

1. Go to undergrad for Speech, Language, Hearing Sciences

2. Get my masters in Speech Pathology

3. Provide speech therapy to people

Clear cut directions to follow to achieve my goal – My kind of plan! 

But, when life throws lemons at your face, you pick them all up and make Lemon pie! 

When we got Olivia’s PFV diagnosis, we were also told we would have to patch her for at least 2 hours a day. Then she was diagnosed with 14 food allergies. So needless to say, our life changed and finishing graduate school at this time just wasn’t in the cards. And that’s okay! If I’ve learned anything with my career change it’s that the universe is going to push you in the direction you are supposed to be facing, you just have to have the courage to accept a new perspective.

But here’s the thing, my perfect plan, my perfect timeline of how to be successful, went out the window when I withdrew from graduate school and started my blog. I have always had a true love for writing and have a burning fire under me to advocate for other people with eye related issues and life threatening food allergies! But, I have no clue how to create a media platform that people want to read. I feel super uncomfortable in front of stories and really insecure that what I am talking about, is of no interest to anyone else but me!

And then I read this quote yesterday on social, “Be brave enough to suck at something new”

I realized right then that well, thats me! I do suck at this! And that’s okay, because this is something completely new. There is no manual telling you the 1, 2, 3’s of how to take off in blogging – if this exists, please DM the link! 

The good things in the life, the parts worth fighting for, are not going to be easy. You are not going to be good at this right away. I have learned so much in the past year about blogging sites and instagram platforms. Ive met lifelong friends that I’ve connected with on such a personal level. 

What I hope more than anything, is that I can create a platform that other food allergy moms, pfv moms, moms in general who might be struggling at this entire mom thing, can come to. I want my blog/instagram to be a place of support and a place to find a new perspective on life. No, it usually doesn’t go the way we planned. But that’s why life is so beautiful. Never in a million years would I have imagined I would be a stay at home mom, making homemade safe food for my amazing, beautiful toddler while she does her patch therapy. That I would spend my afternoon nap times (attempting) to create content and writing about how I feel in a blog that someone might want to read! I never imagined that this new way of life would leave me feeling fulfilled but here I am. A mom struggling to find her way, sucking at a new career but with each passing day, getting a little more confident in this new space (cue new baby, am I right?) 

So, here’s to a new beginning. Here’s to fully sucking at something new. A new perspective into our day to day life. Thanks for coming along for the ride.

PracMedic Bag – Sammie Medicine Case

Food Allergies, Our Latest Adventures

When Olivia was first diagnosed with food allergies, I didn’t even know where to start. First thing we did – get our Epi pen! I put the Epi pens in a small zip pouch and moved on with my day. Unfortunately, I would soon find out that this zip pouch was not a great place to store Olivia’s life saving medication. Our first trip to the beach with her Epi pens, the pouch got wet, hot and squished all in one day. Not good!

Little did I know, Epi pens need to stay cool and dry in order to stay viable. This became our #1 priority. So I started to do some research on the best Epi pen holder! I looked into several different brands but landed on the one that checked all my boxes and more.

PracMedic bags.

We ordered the Sammie Medicine Case in pink. Not only did this case have the best reviews but it was by far the cutest of them all! The entire case was pink with a little girl and outside, sunny day scene on the front. The first day we got the case in the mail, Olivia opened the box and ran! She wore the bag as a purse all night and kept saying she looked so “fashion”.

When I opened the bag up, I was even more impressed. Not only are there two pockets that fit two Auvi-Q perfectly, but there are more pockets to fit other medications you might need. In our case, we filled that side with Benadryl, a contact cup and contact solution. This allowed us to have all of Olivia’s medications in one spot, at all times! The bag zipped with ease and just like that, my anxiety went from 60 to 0 in a matter of minutes. All of Olivia’s supplies in one place – I couldn’t have asked for more.

We spent the summer going to sunny beaches and sweaty play gym classes and I never worried about her Epi pens. The case is insulated and padded to help keep the medicine inside at the right temperature. It’s even water resistant with an optional ice pack pocket for those days you know the temperatures are going to be really off the charts. When we would go to the beach for the entire day, I would throw the case in with an ice pack near by. Since the bag is water resistant, the medicine stayed dry and the ice pack helped it stay even cooler when the temperatures were over 90 outside! (I only use the ice pack on days of extreme heat. Most days we throw the case in my diaper bag and forget about it!)

My husband’s favorite feature to this bag? He can take it out of the diaper bag and attach it to his belt! He HATES carrying my giant diaper bag. As a food allergy mom, I am no stranger to a big bag! Of course I need a bag full of snacks and treats, extra clothes in case of emergency, hand wipes and seat covers! Rather than Dan having to take my giant bag when he has Olivia, he can just take the Sammie case out of the diaper bag and go on his way. This way he has her medications no matter where they go, without having to take the giant bag.

I have to mention the quality of these cases as well! Olivia has run around, thrown it everywhere, brought it out fishing, on hikes and even to Disney World. No matter the adventure, the case has stayed clean, in tacked and looking like new. The material is so durable that no matter what she’s thrown at it, it’s held up. We could not be more impressed.

Dealing with medications that could save your child’s life in an emergency require a lot of responsibility and sometimes it can feel very over whelming. Making sure you have all the medications, making sure they stay safe and temperature controlled – can be so stressful!The PracMedic cases and brand know how hard this can be and this is why they created this amazing product – to set our minds at ease. I have felt my anxiety melt away as I’ve watched Olivia carry this case with confidence. She’s proud to have her medication on her and feels so cute with the bag on her arm.

We cannot wait to try even more of PracMedic products – especially as Olivia is growing and getting older! Next we will be trying out the COMPACT Epi pen case! Stayed tuned to hear how we like the new bag!