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 :).
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.
On December 1st we made our first Christmas cookie of the season! I decided to start with the classic sugar cookie. Im not sure if you guys have watched ‘Christmas Cookie Challenge’ on the Food Network but it is my FAVORITE holiday show. I am in awe of watching how these bakers can make delicious cookies and then decorate them to perfection. In my area, there are not a lot of options for beautifully decorated allergy friendly cookies. That is my goal this year. I want to learn how to decorate safe cookies! So I have to start somewhere!
We decided to make a classic sugar cookie by taking a recipe for a typical sugar cookie and subbing out the butter and wheat flour for safe options. Here is the recipe below! Adapted from the incredible Sally’s Baking Addiction!
Allergy Friendly Sugar Cookie
2 and 1/4 cups of Gluten Free flour
We used King Arthur flour. There is a ‘shared lines’ warning on the bag but after researching their cleaning procedures and calling the company, I feel safe giving it to Olivia and we haven’t had any problems!
1/2 teaspoon baking powder
1/4 season salt
3/4 cup Earth Balance butter, room temperature
We used the one containing soy, but there is an option that is free of soy!
3/4 cup sugar
1 egg, room temperature
2 teaspoons vanilla extract
Combine the flour, baking powder and salt together in a medium sized bowl. Put that bowl to the side – we don’t need it yet!
Using a stand mixer with a paddle attachment or a hand mixer, beat the butter and sugar together at high speed. Then add the egg and vanilla and beat until all the wet ingredients are combined.
Remember that first bowl of dry ingredients? Go grab it! Add the dry ingredients to the wet ingredients. If the dough feels a little too sticky, add a pinch more flour to the batter.
Separate the dough into 2 equal parts and place one of the halves to the side. Place a piece of parchment paper on your surface and lightly coat with gluten free flour.
If you are baking with a toddler, beware! “Sprinkle with flour” to a toddler means pour an entire cup of flour onto the entire counter and floor…
Lightly coat the rolling pin with gluten free flour and roll out the first half of the dough onto the parchment paper, to about a 1/4 inch thickness. Put this on a cookie sheet. Do the same to the second half of dough but this time you dont need another cookie sheet!
Place a new piece of parchment paper on top of the first rolled out dough, and then place the parchment paper containing your second rolled out dough onto the first and new piece of parchment paper.
I included that second middle piece of parchment because with Olivias food allergies I like that extra barrier between food and what touched my counter. I know my surfaces are safe but for me, it just brings me peace of mind!
Cover this tower of doughs with tin foil and put it in the fridge to chill for at least 2 hours and up to 2 days!
When you are ready to bake, preheat the oven to 350 degrees. Line 2 cookie sheets with parchment paper. Using your favorite cookie cutters, cut the dough into festive shapes! Keep re rolling the extra dough to make more cookies into shapes! If you feel the dough is starting to get soft and sticky, put it back into the fridge for a few minutes to get it chilled back down!
I think if you are making these cookies on your own, you shouldn’t have to re-chill the dough, but with a toddler taking their sweet time to cut the cookies, our dough started to get really warm and loose its shape.
Put the beautifully shaped (or in our case mishappened cookies) onto the parchment paper prepared cookie sheets. Bake the cookies for 11-12 minutes.
Allow the cookies to cool and then enjoy!
In a perfect world, I would have then decorated these cookies with a safe royal icing but I am still looking for a good recipe to use! So for now, here is our recipe for a yummy gluten free sugar cookie!! They were Olivia and daddy approved!
Comment below how your cookies came out! Any suggestions for how we can make them even better??
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!
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.
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!