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!

No Nut Butter and Jelly Sandwich

Food Allergies, Our Latest Adventures

Yes! It’s true! Even with food allergies, your kiddos can eat (almost) the same foods as everyone else! Today, we are going to talk about the typical Peanut Butter and Jelly sandwich, but this time, no nuts allowed! This recipe has no peanut, tree nuts, wheat/gluten, or dairy!

One of Olivia’s new favorite meals:

No nut butter sandwich on wheat free bread, avocados with salt and fresh raspberries. Seems so simple, but in a household where we never thought Olivia could eat typical food, this simple, regular lunch is anything but simple.

Udi’s soft white sandwich bread (contains eggs)

Polaner All Fruit grape jelly (confirmed via email from B&G Foods, Inc that this grape jelly is made in a facility that does not produce products that contain dairy or wheat and that their ingredient list and allergen information will let you know if anything changes)

Sunbutter or Wowbutter – Sunbutter is free of the top 8 allergens in their product and in their facility: peanuts, tree nuts, soy, dairy, eggs, wheat, fish and shellfish. Wowbutter contains soy but is free of peanut, gluten, egg and diary and is manufactured in a facility that only contains soy.

When your child has food allergies, it can sometimes feel like there are very few options when it comes to quick and easy meals! I hope this idea of a simple no nut butter and jelly sandwich gives you and your family some peace of mind and a full belly :).

Join us next Wednesday for another Allergy Friendly Wednesday!

“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.