Little Milestones

Our Latest Adventures, Our Patching Stories, Uncategorized

I remember when we were first told Olivia would need to put a patch over her dominant eye in strengthen her Nemo eye, I was horrified. So, as we all do, I took to Instagram to read about how other families deal with patching a baby/toddler and what types of accounts I could locate with some good advice. I came across one of the most popular and respected instagrams that showed an adorable little boy that was a master patcher – and his mom, of course is a saint. She had posted a video of her little patcher opening the patch all by himself to get ready for patch time and I was completely blown away! As our avid readers know, (hi moms 😉 ) when we put Olivia’s patch on in the mornings, it starts with a cute, catchy little song but almost always continues into a meltdown. I couldn’t even begin to imagine a time where Olivia would feel so comfortable with the patch and her eyes would be strong enough, to focus on such a small object, and open it on her own.

Since Olivia only has one eye with strong vision, she has very little to no depth perception. This makes some fine motor skills sometimes hard for her to grasp. So, in theory, using eyes to focus in on a small patch in front of her and having enough visual acuity and fine motor ability to peel apart the patch should be near impossible for this tiny human. But you guessed it…she took after her fellow patching friend and opened the patch all on her own!!

Now, there are both pros and cons to her new discovery. Pros: this shows that her eyes are getting stronger, her fine motor skills are improving and she isn’t afraid of the patches and what they represent! The cons: as many of you know, patches are really expensive! So we have to be super careful about leaving them around because she WILL open them, and stick them to her clothes, the iPad screen, or even the cat! She is starting to put together that every time I see her steal a patch and open it, it ends up on her eye and results in some serious patching hours – so she has slowed down a bit – our little smart cookie.

Since the surgery, our patching time has been significantly cut short so that her eye can properly heal. She has some residual swelling and redness which has required extra goopy ointment that makes her vision even more blurry. But, we are still hitting our 60 minutes a day until we get the all clear to work our way back up to 3 hours! Olivia is starting to become an active participant in everything patch time so you know what we are going to do…just keep patching :).

It’s been a year??

Our Latest Adventures, Uncategorized

January 24th, 2018. The date is burned into my head like the day she was born. We woke up on January 24th like any other day. I remember this morning so vividly because I had just put our 2 month old baby in the CUTEST Gymboree corduroys with a purple polar bear onesie – and yes, it even had a matching headband. I got her to take a nap BY HERSELF which was a huge feat for me 2 months post-pardem. Last minute, my mom had decided to come with me to our first ever optomology appointment. Not for any particular reason. We both knew something was off about Olivia’s eye but we expected them to confirm our suspicions she had a really lazy eye and would need glasses. So my mom was really just coming along to give me a hand with the car seat and watch the baby when I needed to fill out paper work. In pure newborn fashion – and this is the reason I remember that gorgeous outfit so vividly on this exact day – Olivia blew out her diaper right as we were walking out the door. My mom and I tag teamed giving her the quickest wipe down, new diaper, outfit change known to man, and got in the car on our way to a seemingly routine appointment. Little did we know, huh?

We went into the doctors office and I sat in the optomologist chair with such a nieve and giant smile on my face as the doctor looked into Olivia’s eyes. All of a sudden, the mood in the room changed from light and bubbly to heavy and stiff. The doctor took a deep breath and told me that she could see that Olivia had a cataract in her affected eye. I remember thinking to myself…WHAT?! Only people over the age of 80 get cataracts?! She explained to me, using a fancy diagram on the wall, that the cataract was like a film over her eye – that was blocking light from coming in. She explained that Olivia was unable to see through where the eye was blocked. She said the cataract was most likely caused by something called Persistent Hyperplastic Primary Vitreous also known as Persistent Fetal Vasculature and that this was extremely rare. The doctor left the room to get whatever pamphlet they had hidden away, covered in dust in the back of a forgotten filing cabiniet because she had never seen a child with this condition in her career.

This is where I thank God my mom had decided to come with me. She is very intuitive and must have known that we would need her on this specific day. My mind went completely black. As the door closed, I broke down into the deepest cry I have ever done. I squeezed my daughter and cried. At some point, my mom came up and took Olivia and I in an embrace I will forever be grateful for because it kept me from falling to the ground. I couldn’t believe what we had thought was a routine appointment had just turned our lives upside down. I called my husband as my mom cradled the baby and told him to get over to the doctors right away. He dropped everything and was there before the doctor returned with the informational packets – he works as a teacher at the school that was conveniently located down the road from this office. When the doctor came back in, she suggested we get a second opinion from one of her colleagues to be sure of the diagnosis. She left us with the next doctor we would be heading to see, a warning that surgery may be necessary and a request for us to come back and tell her how it all goes.

My husband and I hugged our little girl the tightest we ever had before. We thanked God that the little black spot the pediatrician had seen wasn’t cancer and that we finally had answers to why our baby’s eye wouldn’t focus straight on. We were going home with heavy hearts and tear stained faces but a plan moving forward. My mom drove us home and within the hour I had another appointment booked with the cataract specialist – for 2 hours later! My husband pulled into the driveway and jumped into my car to take the hour trek to Stratford. As you know from reading the blog 🙂 the next doctor confirmed that Olivia did indeed have PFV that caused her to develop a cataract in her Nemo eye.

From there, we went home ate so much ice cream (this was pre-dairy allergy), drank some wine and found comfort in each other. Our lives had changed forever. For some reason, the two of us still had hope this was all a nightmare and that when we got to the retina specialist in New York a couple days later, he would say Olivia was all better. We now know that was not what happened, but we found solace in hoping for the best.

Writing about how I felt one year ago has brought back how dark this day was for my family. We had just started our journey as parents and were thrust into a situation that even seasoned parents would be overwhelmed by. Looking back, I am so proud of how we handled this day. For as dark as it was, we never turned our back on each other. We took care of our little girl while also taking care of our marriage. When I started thinking that I caused Olivia to have PFV (as every PFV mom thinks at one point in diagnosis even though its completely ridiculous) my husband was there to remind me that there was no way that could be. When he would crumble and cry at the thought of putting our tiny two month old under anesthesia, I would pick him up and remind him it would be okay. It’s true that you never know how you will react in a crisis until you are dealt one – but ill tell you, I’m proud of who we were, how we dealt with impossible odds and how we lifted each other up.

Despite this dark day, I think about how far we have come. I would NEVER have expected one year ago that Olivia would be thriving the way that she is. I am shocked and impressed every day to see how she is crushing her developmental milestones, patched or not. We have gone through two major eye surgeries, constant three hour trips to New York, three hotel stays, countless hours of patching, multiple different eye drops and too many long nights to count – but we made it out the other side, together. We are only in the beginning of this journey but with these two by my side, and this tribe we have backing us – I know, we will just keep patching.

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.