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.
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.
A few months ago, we experienced our first food challenge. Long story short, it did not go well. We brought a wheat roll into the allergy office and it was separated up into 4 different doses for Olivia to eat. The first round went great, the second round went down with ease, but when we hit the third round of wheat, Olivia refused to swallow. She started to sneeze, cough and rub her eyes. Since her reaction to the wheat involved two different body systems, we knew she was in fact still allergic to wheat and was experiencing anaphylaxis. She was given Benedryl and watched very closly to be sure we stopped the food challenge in time and that no other system had been affected. We left that appointment in tears. We were so confident and sure se had outgrown her wheat allergy – more wishful thinking than anything. And when she had such a poor reaction, it really took the wind out of our sails.
Putting your baby through a food challenge feels like you are going into the doctors office just to feed them poison. I know that may seem a little drastic but at the end of the day, that is what these foods are to kids like Olivia. Wheat, dairy, eggs, peanuts or tree nuts COULD kill her if ingested. So going into the office to purposefully give her the food she is allergic to feels unnatural and cruel. Unfortunatly, food challenges are a necessary evil in the world of food allergies. Skin pricks and blood tests can only tell you so much – you have to actually eat the food before you know for sure if you are still allergic or not. Scary but necessary.
A few months have passed and our wounds and broken egos have healed from the wheat challenge and Olivia’s latest blood test showed it was time for the next challenge…EGGS!
We talked to Olivia about her food challenge coming up and that she would be able to try eggs and she was so excited! She woke up this morning like a kid on Christmas. Her eyes opened, she called for Dada and her first words were, “Dada cook eggs!” At least one of us was pumped up – Dan and I were a WRECK! It is so stressful that we found ourselves walking around the house aimlessly trying to get ready and out the door. Olivia wouldn’t leave without her Anna dress, Peppa Pig rain boots and ‘Livey baby’ but as soon as she had the essentials, she was ready to go! This time around, we had a much more realistic approach to the food challenge. We were going to take it step by step.
First: We got to the office and they do a skin prick test to see how her skin reacts to the food. She did show a small reaction to eggs – a small little hive where she had been pricked. This is the part of food allergies that is such a hard science to follow because that small hive could have been her eczema flaring because ya know, someone just pricked her skin and its irritating, rather than a true reaction to the egg The doctor deemed it small enough to proceed. So on to the next step.
Next: round one. Olivia was amped up to try eggs. Don’t worry; we didn’t forget the DipDip (ketchup)! She ate and loved the first dose and it went down with ease. She immediately asked for more and was disappointed when she had to wait 15 minutes before the next dose of eggs. Nothing a little Peppa Pig couldn’t fix.
Round two: this dose was a little bigger than the first but could still be eaten in one bite, covered in ketchup. Still asking for more…15 minutes on the clock…
Round three: This dose was even bigger than the first two. She had to take two bites with this one and by that second bite she was done with eggs. She tried to spit it out but that food had to go right back in! She kept the eggs in her mouth and swallowed, reluctantly. That excitement over eggs had now dissipated and we were left with a toddler who wanted out! To make matters worse, she developed a hive on her chin – AH! The doctor came in to check the hive and just told us to watch it closely. Thankfully, it wasn’t bad enough that we had to stop the challenge – just some extra anxiety for momma and dada. 15 minutes and counting…
Round four: this last dose of eggs came in and it was a doozy. The cup was almost filled to the top with scrambled eggs and Olivia wanted nothing to do with it; but she did want some of her sweet potatoes that we packed for lunch. My friends, I have never been more proud of myself than I am for what I did next. I hid the scrambled eggs in with a spoonful of sweet potatoes and she ate them without complaint. Now, the eggs had to be COMPLETELY hidden. I mean, if you could see any yellow, she would not take a bite. She would only eat the eggs if they were hidden in sweet potatoes and ketchup – but it didn’t matter how she ate them, just as long as she did. I held my breath the entire dose and didn’t relax until that last bite of egg went into her mouth AND was swallowed. We did it. Four rounds of a food that is essentially poisonous to Olivia, down the hatch! This time we had to wait 45 minutes…
During this 45 minutes, we played with the Doc. McStuffins doctor kit, watched Pepa Pig and 101 Dalmations on the iPad and even read some books – all while watching every little red mark, scratch or sneeze that came from this tiny little kiddo. After the 45 minutes were up, the doctor came in and gave us the good news – Olivia PASSED THE SCRAMBLED EGG CHALLENGE!
Now what does that mean? Well, because her skin still reacted to the egg i.e the scratch test reaction and the small hive on her chin, we should still avoid raw egg. So, we will still avoid Mayo (vegan Mayo is way better anyway!) and some frostings that contain raw egg. This means no over easy eggs or raw cookie dough for Olivia. BUT we can scramble up eggs for breakfast, make pancakes and cupcakes without having to substitute flaxseed or applesauce and she can go to her favorite bakery and order whatever she wants – not just from the egg free section!! For the next two weeks, I have to give Olivia 1 egg a day and watch her like a hawk…I know right? I have an exciting 2 weeks ahead…but once she does that for 2 weeks, we are in the clear and can just give her eggs as she wants them. She has officially outgrown egg and we couldn’t be more excited. So my friends, just keep challenging! Challenge the impossible every day – you never know what you may outgrow!
Everyone’s worst nightmare…a trip to the dentist!! At Olivia’s last pediatrician appointment we were told that it was time to take her to the dentist and my heart stopped. Not because they would be checking out her teeth but because they would have to put things in her mouth – things that could potentially contain her allergens! We have to be so meticulous about ingredients in everything that even comes close to her. We know every possible name for dairy, wheat, eggs, peanuts and tree nuts, but I had never had to worry about ingredients in a medicine or at a doctors’ office. Through the years, there have been a few stories where children were given a fluoride or toothpaste that contained their allergen and they had to go into pure survival mode – EPI included. I went home and started doing research.
Cue Google Search –> Food Allergies and the Dentist
I wrote down all of my questions, all of the names that could possibly mean the same as any of her allergens (ie Casein is another form of Dairy!) and had a plan of attack.
The morning of the dentist appointment, I told Olivia we were going to the Dentist so the doctor could check out her teeth and she couldn’t have been more excited. She pointed to her teeth all morning and kept yelling “momma, teeth!” It’s so funny how all the fear and anxiety I had been holding on to for this appointment can just melt away with one smile from that little girl. I took a page out of her book and we walked into the Dental office with all the confidence and courage I could muster.
We filled out our new patient paperwork and waited to be walked in. My stomach was in knots! When we were called back, the dental hygienist told me to avoid the dentist chair and sit Olivia on the bench next to the computer. She said most kids get really freaked out by the big, scary chair and they tend to shut down. She had obviously never met Olivia! She climbed right up onto the big girl dentist chair, with a smile so big it could be seen from the moon.
“Momma, look, chair” she would say followed by “Momma, teeth!”
While Olivia played in the chair, I pulled the hygienist over and asked her to see an ingredient list of anything they would be using on Olivia for this appointment. I needed to be 100% sure nothing contained her allergens. Unfortunately, the office didn’t have a printed list of the ingredients in their products, which threw me for a loop. My research had shown that they had to have the product ingredients available and the fact that they didn’t have them made me so nervous. Instead, they gave me samples of the Floride and cleaner to have it tested at the allergist to be sure it was safe. I settled for this solution but it did leave me underwhelmed.
Thankfully, the first appointment at this office simply consisted of a short medical history interview, a discussion about what types of foods and drinks are consumed and a quite look into the mouth! Olivia was a rock star and got her teeth checked out an the all clear from the dentist! When they were done checking her teeth, she kept signing more so they would keep going – she is the only kid that LOVES the dentist. I was relieved nothing was put in her mouth today – but to be honest, without knowing the product ingredients – nothing was going in her mouth regardless.
She picked out a stuffed animal prize and we took a trip to Dee’s One Smart Cookie for an allergy safe cake pop.
For any allergy parents that might be nervous for their child’s first dentist appointment – there’s nothing to worry about! The first appointment was very straight forward – interview and quick check with no products. Remember, if you can’t see ingredients or don’t have that reassurance that the product is safe, don’t let them use it. Just Keep Advocating!! And tell them why you aren’t able to proceed with your appointment and hopefully they will get you what you need to feel comfortable.