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.

Eye Update!

Our Latest Adventures, Our Patching Stories, Patching

Hi friends! It’s been a while since we talked about Olivia’s eye. It’s crazy to think that she was diagnosed almost 2 years ago (what!?) with Persistent Fetal Vasculature! When we received that diagnosis, here is what we were told:

  • Olivia is blind in her right eye
  • She can only see some light in her right eye – if anything
  • Because of her diagnosis, this is unlikely to change
  • BUT in an effort to gain some vision, she needs to patch daily for at least 4 hours a day

I remember feeling so defeated thinking she was unable to use her Nemo eye! But we came to terms with our new normal and continued on. Olivia is a rock star but I will be honest, we have NEVER hit 4 hours of patching in one day. I really don’t know how some parents do it. I have tried everything to get her to stay focused and tolerate the patch but so far, our best patch time is 3 hours a day – and I’ll take that! (and so much respect to those parents that can get their child to patch for half their waking hours – that’s the goal!) With the patch on, Olivia has always been able to maneuver her way around so we had some suspicions that maybe blind in her Nemo might have been a stretch…

Oh man, I’ve lost my point here! Back to our eye update 🙂 So after that catch up, you know we went into this appointment with these 4 ‘facts’ in our minds. Our expectations are always pretty low but we hope for the best. My husband had to work so my wonderful sister – otherwise known as YaYa – stepped in to come along for this appointment.

We headed to Olivia’s eye doctor/lens specialist early in the morning. One silver lining to Olivia growing up in these offices is that everyone knows and adores her. We walk in and their first response is “oh my goodness, you’ve gotten so big”. They knew her when she was just born and they’ve watched her grow into this independent little girl. Crazy to think how far she has come.

At previous appointments – being that Olivia was so young – the only way they would measure how much vision she has is with some special instruments. But this time, we were surprised with pictures! Dr. Mcleary handed Olivia a piece of paper with black and white pictures on them. Olivia was then told to point to the picture she could see on the screen. She practiced with both eyes and then the doctor covered her dominant eye, forcing her to use her Nemo to see. To the doctors’ surprise, she could do it. Mind you, the images were big but that doesn’t really matter! The fact is, she could see that piece of cake enough to identify it on the page in front of her! Even with my suspicions, I never dreamed she would be able to see an image that far away and be able to identify it. She was able to do a few rounds on the eye test before become completely agitated and ready to go play with the stickers she earned.

The doctor recored the data and spun her chair around. The air around us got so still. Then she said,

Your daughter is not blind.

Yup, you heard that right. She is not blind. She has terrible vision. Her prescription is so high in the double digits I didn’t even know they could go that high – but she is NOT blind. I cried right then and there. I couldn’t contain my excitement.

This means, the patching worked. It means the surgery was the right choice. It means, so far, in a field filled with so many unknowns, we are doing okay.

The doctor was sure to remind me that due to her condition, there is a limit to how much vision she is likely to gain. Since her retina was detached and was never able to completely finish developing her eye, she will always have a lot of trouble. But she’s getting better. She’s a fighter (usually fighting me to take the patch off but who’s counting) and we are going to keep fighting to get as much vision back in her Nemo eye as possible!

When Olivia received this diagnosis 2 years ago, we began going into these appointment with the idea to expect the worst but hope for the best. Even though I could see her getting around a little better with the patch on, and watching the iPad – no matter how close – I wouldn’t allow myself to believe she was truly gaining vision in her eye. So beyond ecstatic to have been wrong this time.

So, in this new year, we are going to just keep patching – hoping to increase our time per day! The doctor is having us wait on her next surgery since her eye is looking good and the ultimate goal is to get her a little bit older and bigger before they go back in. We left the appointment over the moon and headed over to Dee’s One Smart Cookie to get our brave girl an allergen-free cake pop.

Thanks for reading and stay tuned for more fun ways to get this girl to keep her patch on!!

Be Better, Netflix

Food Allergies, Our Latest Adventures

Alexa and Katie is about two best friends are how they navigate high-school, grades, boys, but most of all, how they deal when one of them is diagnosed with Cancer. It is one of my favorite shows to throw on. When I see the red ‘new episodes’ sign in the corner or the picture – I immediately curl in to binge watch them all – I mean they are only 20 minutes long! The show hits on some really sensitive subject matter. In between the light girl talk of boys and basketball are the issues of chemo, hair loss and all of the feelings that go along with that. This is a show I would be proud to show my daughter. It teaches kids and teens to be brave, inclusive and kind. It treats disabilities and challenges with respect. At least it did…

My husband and I were sitting down, relaxing after a long day, watching the Christmas episode of the latest season – Episode 5 – All I Want for Christmas is You – when all of a sudden we both froze. This show, about medical needs and acceptance, made an EPI pen joke. 

One of the customers in the coffee shop asks Katie (who works as a barista) for more foam on her latte. Katie being frazzled and frustrated grabs some nutmeg and sprinkles it all over her coffee. The customer then says “Nutmeg, eh I have my EPI Pen” – cue laugh track. And the show moves on. 

This is not funny. Laughing about an allergy or an EPI Pen is not a cool way to get laughs. You know what the show did do? It made light of something very serious. It let kids and teenagers and adults know “hey you can give me what could KILL me as long as I have my EPI pen.”

I wonder if Netflix or the show Alexa & Katie had any clue that every 3 minutes, a reaction due to food allergies sends someone to the Emergency Room. Did they know that if someone consumes their allergen, use of an EPI pen needs to be done within minutes and may need to be done with more than one EPI Pen. Finally, did they know that EPI pens do not work every time – or maybe I should send them over the list of children that have died because they didn’t have their EPI pen present or they didn’t get to it in time.

Did they know that 1 in 3 children – yes 1 in 3 kids – are bullied because of their food allergy and if the child has more than one food allergy, over half reported being bullied because of it. Take those facts and factor in that a widely watched television show finds that food allergies are okay to joke about and what do we have? More media making my daughter feel silly for her medical condition. More outlets making parents feel like they cant trust others because they may be looked down upon for protecting their child.

As a food allergy mom, I struggle with a lot of anxiety. And as I read through these food allergy facts, I learned that I am not alone. Parents of children under the age of 5 have significantly higher blood pressure and report high levels of psychosocial stress then moms of kids without food allergies. Most parents avoid restaurants all together. More than 1/4 of food allergy parents surveyed said that their kids don’t participate in sleep overs or camps, don’t go to restaurants and 10% avoid play dates with friends. This is all because of food allergies. These statistics should be enough to make the world stop joking about a world wide epidemic and start taking notice about how many families deal with this on a daily basis. 

This joke took up exactly 12 seconds of the show but is forever burned into my mind. To everyone who doesn’t deal with food allergies on a daily basis, this joke let their sub-conscience minds know that food allergies are curable and can be handled with the simple use of an EPI pen. And to all of us that deal with food allergies every single day, the joke increases that anxiety just that much more.

We can make the difference that the media is not having the courage to make. Take this opportunity to talk with your kids. Let them know how serious food allergies are. 

**Food Allergy Research and Education, Facts and Statistics**

Grocery Store: Our Local Mine Field…

Food Allergies, Our Latest Adventures

To most, these shelves are filled with all kinds of delicious treats – ice cream, chips, cheese and oh so many yummy snacks. I watch kids helping to push the carriage and grab all their favorite foods to lob into the cart. I watch as they answer “yes” when the deli counter attendants ask, “would you like to try a slice” or as they bask in all of the free samples meticulously placed outside each aisle. I watch with sadness behind my eyes because I watch these other families knowing that we are unable to walk around the grocery store with such ease. To us, the grocery store is more of a minefield than a fun outing.

When we get to the grocery store, we immediately must take every precaution to keep our daughter safe. First, we wipe the handle and seat down with our favorite Wet Ones wipes. Why you ask? Well, how many times have your children munched on a yummy snack while you pushed them around the grocery store? Even though that Starbucks Cake Pop tastes delicious (have you tried the new snowman one?), the allergen proteins that go from that cake pop to the seat are more than you can imagine. 

Next, we cover the seat with our handy dandy Target seat cover. I’ll be honest, before we had Olivia I judged other parents that had these, hard. I would think to myself, really? Your kid cant handle a few germs – I am embarrassed to think that used to be my thought process but it was. Now look at me! I could be the spokesperson why these covers are so amazing! Pushing aside the germs argument (have you looked at the highchairs at some restaurants? Yuck!), the seat cover is an extra level of protection for Olivia against any food that may have avoided my wipe. 

Finally, I give Olivia her bag of safe snacks and push her around the grocery store – keeping the cart far away from the nuts, which are so wonderfully placed in the same aisle as the BANANAS. Ugh, that subject is for another blog post…

Olivia knows her rules at the grocery store – we don’t touch the cart unless we wipe it down and we stay seated and in our seat. There is no walking around the grocery store for her – at least not until she is big enough to respect and understand how serious her food allergies are. For now, the wooden bear that protects the honey and allergy free aisle amazes her – don’t worry, we pet and greet him every time we go – and the robot that cleans the grocery store is a must see! 

For any new allergy moms – you will figure out how to navigate intimidating places like the local grocery store. Take every precaution to make yourself and your child feel at your most prepared and you will get in and out in one piece. And you will start creating your own traditions – who needs that deli cheese anyway?! Remember stay prepared – not paranoid. We got this.