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.
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.
That’s what a mom I encountered just like week said to me. Here’s what happened…
Last week, my husband and I headed out to the park for a picnic. We packed Olivia sweet potatoes, Daiya vegan cheese and AppleGate deli ham. She ran around the grass at full speed for a solid 30 minutes, only stopping at the picnic blanket for a quick bite and sip of water. She gave the trees more hugs than I could keep track of and chased Dan to the lake and back until she needed a cookie break (Enjoy Life Chocolate Chip – her fav!). After she finished lunch, we headed over to the playscape so she could play on the swing and slide with her patch on. The playscape with the patch on is one of our go to actives. All of the different pieces of equipment keep her distracted and she’s gotten so comfortable playing on them, shes a pro at going down each and every slide. The park was packed with tons of families enjoying this glimpse of fall weather. Olivia was having the best time when all of a sudden a new family entered the playscape.
The family ran onto the train playscape activity with two dripping soft serve ice cream cones. And when I say dripping, I mean the ice cream was leaving a path behind the kids as they walked around. To make matters worse, the kids dropped their cones on the playscape and rather than cleaning them up and putting them in the garbage, their mom kicked them to the side and left them there.
Unfortunately, the ice cream being all over the playscape meant it was time for us to leave. We are already very cautious at the park – using wipes as necessary and wiping down surfaces when we need to. But seeing the actual food that could *kill* Olivia all over the equipment that is meant for all kids to play on, meant it was time to head out. So we abruptly packed Olivia up, ignoring her requests for one more time on the ‘side’ and walked to the car.
As you all probably know by now, I am one momma bear when it comes to my baby and food allergies. I couldn’t leave. I couldn’t let this go! Not because anyone was in trouble – but because maybe that parent just didn’t know! Maybe that mom didn’t realize the repercussions her child smearing the ice cream everywhere, had on other people. So I strapped Olivia into her car seat to hang out with her daddy and headed back to the playscape to talk with the parents of those kids. I was SO nervous – I don’t do confrontation but to be honest, not one ounce of me believed this type of conversation could escalate. I assumed this mom just didn’t know – before I had a child with food allergies, I didn’t realize the full magnitude or realize how serious food allergies were. My mission is to spread awareness and I figured, lets start with this momma! Boy was I wrong…
I walked up to the mom:
“Hi, did your kids bring those ice creams onto the playscape?”
“Oh Okay! (I said with a smile) I was wondering if you wouldn’t mind just grabbing the cones and throwing them in the garbage. My daughter has life threatening food allergies, and foods like ice cream that contain dairy are very dangerous for her and for many other children that use the playscape.”
“The birds will get it” — Imagine saying the word WHAT — that’s what my face looked like.
“Oh yeah, well we unforturtuantly had to leave the playscape because the ice cream went all over the train and walkways.”
“That’s not my problem and it’s not my kids problem”
To which I responded, cuz now my heart is PUMPING – “If my daughter were to touch that ice cream and it got anywhere near her face, it would kill her. She could die. 1 in 13 kids have life threatening food allergies – not just my daughter” – I’ve been doing a lot of reading!
“Listen, if you’re daughter can’t safely play at the park then you should just keep her home. Carry her around the playscape, I don’t care. What, does she walk on her hands or something? It’s not my problem that she has so many issues. It’s JUST food.” – she yelled this at me in front of a dozen other parents that were at the park that day. Everyone stared at us in awe.
At this point, I just smiled at her, turned and walked away. When I went to talk to this mom, my only goal was to hopefully get her to clean up the ice cream and explain to her why. Unfortunately, she did not take it that way. Rather than saying something like, “oh my goodness, I didn’t realize, I will make sure we don’t eat on the playscape in the future” or something as simple as “absolutely, no problem!” she got very defensive and mean. Sadly, this sort of reaction centered around food allergies is something I’ve read all to much about.
Under her breath, as she walked away, the mom said back, “ill put the ice cream into the garbage” to which I replied “that’s all I ask”. Did this encounter go as I hoped? No. But at the end of the day, the mom decided to do the right thing and just pick up after her kids. I’m proud of myself for standing up for my daughter and others like her – in this case, it paid off.
Food allergies are an invisible disability to so many. Olivia looks like such a typical kid that a stranger would never know that coming into contact with certain foods could kill her. A dime sized amount of that protein in her mouth, takes seconds to take action. A child with a disability on the outside like needing a wheelchair or another special accommodation would never be questioned but someone with food allergies is often seen as picky or intolerant. Food allergies, wheel chairs, glasses, or any other accommodation don’t hold these kids back – it’s our job to make the world a more inclusive place for all.
So no, it might not be your problem. It might not be your kids problem. But let’s change that! Let’s change our reactions from “that’s not my problem” to “lets find a solution”. The inclusion of others is our responsibility!
The next night, I met with the Parks and Rec department in my town to discuss a change at our park. Visit the blog in a couple days to check out the latest addition to the playground!
Today I should have walked down the aisle to receive my Masters in Communication Disorders. Today I should be starting my journey as a Speech Language Pathologist. Today I should have achieved my ultimate goal.
In 2013, I graduated from Eastern Connecticut State University with my bachelors in political science. But when I got out into the world and started working, I quickly realized that the field I had picked to pursue my career was definitely not for me! I decided to start working in different areas to really find what I wanted to do. Two years, my own home and a new husband later, I got a position working with special needs children and fell in love with my job. I especially loved the professionals that came in to work with them on their speech. I was mesmerized by their technique, passion and intellect. I knew right then and there, that one day I would be a speech language pathologist.
So I went home and started Google searching – “how to become a speech language pathologist”. I figured I already had a bachelors degree so how hard could it be right? I could not have been more wrong! The field of speech language pathology is one of the most competitive masters programs to get into! Not to mention, I had no background in the field or true experience. So, I made myself a master list and got to work. I got together my application, wrote my personal statement and submitted my lack luster GRE scores to the admission board at several different masters programs in Connecticut and neighboring states. Every letter came back as a rejection.
I didn’t give up. I applied and was accepted at the University of Connecticut as an undergraduate student, again – this time pursuing a bachelors degree in speech, language and hearing sciences. After just one class, I was validated. I knew this was my destiny. I graduated with my second bachelors degree from UCONN and I retook the GRE. I applied again. Another round of rejections.
I didn’t give up. I became a research assistant at the University of Connecticut, I took the GRE AGAIN – third times the charm (the GRE is by far, the worst standardized test in the entire world) and, thanks to my amazing mentor, I was able to enroll in one graduate level course in an attempt to show any admission board that I was capable of being successful in a graduate program! I applied again. This time, I knew I had put my entire heart and soul into this application. A few short weeks later, I received my waitlist letter in the mail to Southern Connecticut State University. I was in shock! My husband and I had sacraficed so much to get me into graduate school. He believed in me and I finally believed in myself. It was only a few weeks later that I got the final letter that I had been accepted in the class of 2019 Communication Disorders masters program!
I kid you not, it was one day later. The very next day, in the heat of a crazy winter storm that I took a pregnancy test. My jaw dropped. In a matter of a few short hours, I was told I was accepted into my dream program and that I was pregnant! But this news didn’t make me even skip a beat. I never questioned that I would finish my program. I knew that we would get it done. So, I spoke with my advisor that summer about how to proceed and was met with compassion and understanding. The school worked with me and went over and beyond. I took classes and read about apraxia and dysphasia and everything in between. I took 1,000 pee breaks and always had snacks at the ready. My classmates were wonderful and supportive. I gave birth to Olivia – you guessed it – the week before finals – she would have it no other way ;). My project groups waited for me to recover before presenting so that I wouldn’t be left out. We took Olivia home and I signed up for my next semester of classes – knowing that I have a wonderful support team at home – thanks moms 🙂 that would get me through the winter semester!
The day after the start of the spring semester was that faithful day. The day most of you have read about before – when the doctor diagnosed Olivia as legally blind in one eye, with a cataract and a rare condition known as Persistent Fetal Vasculature. After all of those years of studying, trying and failing, falling and climbing back up. It wasn’t until this diagnosis, that I finally broke. When we learned more about her condition and her therapy needs moving forward, I knew I would need to take a leave of absence from school. Her eye became priority number one. I did just that, with no issue at all. But then, as the Spring semester came to an end and the summer semester began another bomb shell was dropped on our family. It was last summer that Olivia was diagnosed with life threatening food allergies. It wasn’t until this diagnosis that I knew I had to take a step back and really look at what to do next. Olivia needed an entirely new kind of care now which meant big changes for our family.
It’s taken me this long to full accept the decision we made next. We knew the right thing to do was to keep me home with Olivia. This means that after everything we went through to get my masters degree, I lost my acceptance to SCSU. I have every intention of going back to school to finish what I started but until then, my new title is ‘Stay at Home Mom’. This decision is we one we did not take lightly – it took weeks to come to and many tears as it came to fruition but I can say with all the confidence in the world that we made the right decision.
When your child has something going on with them that could end their life, priorities and life plans change. Everyone told me that my life would change when you have a baby, and they were right. It’s changed in the best possible way.tx I would love to be Danielle Mikulak, SLP but instead I have the best title in the world: Danielle Mikulak, Momma.