Where have I been??

Our Latest Adventures

Hi friends! It’s been a minute!! So a few events have occurred since my last blog post and I promise, I have what I thought was a good reason for being MIA…

So I started this blog to raise awareness for both congenital eye disorders as well as for how serious food allergies are. Olivia was diagnosed with both of these conditions early on and my goal was to create a safe space where I could document our challenges, positive outcomes and adventures all around. For the most part, the response from people has been amazing. I feel like we have built a real community both on my blog as well as on Instagram and I am so incredibly thankful for that. Sometimes I write about experiences that may seem controversial like that woman we met at the park or my opinions about the show “Alexa and Katie”. I love getting both the positive and constructive comments about what I write! It keeps me grounded and in tone with how others in our community feel. It makes me take a deep breath and remember that I’m not alone in navigating these obstacles. But a little while ago, those constructive comments turned from just that, to mean spirited attacks on my character and the way I am raising my daughter. Rather than taking back my voice and letting it go, I let a keyboard crusader get under my skin and shake my confidence.

I started to wonder why I am even doing this. Was I wrong to document how we are dealing with these diagnoses? Was I exposing my family to this type of negativity for a good enough reason? Were they right? It took me a few tears, talks with my husband and time spent with our little warrior of a daughter to come up with the right answer and direction moving forward. My next steps? Keep doing what we are doing!! I know we are doing the right thing! I know this because of all of you! All of the incredible messages we receive, the videos of your kids and the comments directed to our community. I looked back through our DMs and comments and was reminded why we started this blog. I was a scared new mom. Dan was a confused new dad. Trying to navigate a world we knew nothing at all about. I wanted to create a space that we so desperately needed and I hope that is exactly what we are doing.

I am leaving those posts up. I now see them like a badge of honor, a proud display that my words mean something. Please don’t respond to those comments. I have realized that they are not worth the time.

Moving forward, in this difficult climate, we will continue to post content about patching (now from isolation – keep us in your thoughts patching a toddler, at home – ah!), food allergies and a new segment I am super excited to kick off later tonight! Stay tuned to see what that’s all about and remember, just keep patching friends.

PracMedic Bag – Sammie Medicine Case

Food Allergies, Our Latest Adventures

When Olivia was first diagnosed with food allergies, I didn’t even know where to start. First thing we did – get our Epi pen! I put the Epi pens in a small zip pouch and moved on with my day. Unfortunately, I would soon find out that this zip pouch was not a great place to store Olivia’s life saving medication. Our first trip to the beach with her Epi pens, the pouch got wet, hot and squished all in one day. Not good!

Little did I know, Epi pens need to stay cool and dry in order to stay viable. This became our #1 priority. So I started to do some research on the best Epi pen holder! I looked into several different brands but landed on the one that checked all my boxes and more.

PracMedic bags.

We ordered the Sammie Medicine Case in pink. Not only did this case have the best reviews but it was by far the cutest of them all! The entire case was pink with a little girl and outside, sunny day scene on the front. The first day we got the case in the mail, Olivia opened the box and ran! She wore the bag as a purse all night and kept saying she looked so “fashion”.

When I opened the bag up, I was even more impressed. Not only are there two pockets that fit two Auvi-Q perfectly, but there are more pockets to fit other medications you might need. In our case, we filled that side with Benadryl, a contact cup and contact solution. This allowed us to have all of Olivia’s medications in one spot, at all times! The bag zipped with ease and just like that, my anxiety went from 60 to 0 in a matter of minutes. All of Olivia’s supplies in one place – I couldn’t have asked for more.

We spent the summer going to sunny beaches and sweaty play gym classes and I never worried about her Epi pens. The case is insulated and padded to help keep the medicine inside at the right temperature. It’s even water resistant with an optional ice pack pocket for those days you know the temperatures are going to be really off the charts. When we would go to the beach for the entire day, I would throw the case in with an ice pack near by. Since the bag is water resistant, the medicine stayed dry and the ice pack helped it stay even cooler when the temperatures were over 90 outside! (I only use the ice pack on days of extreme heat. Most days we throw the case in my diaper bag and forget about it!)

My husband’s favorite feature to this bag? He can take it out of the diaper bag and attach it to his belt! He HATES carrying my giant diaper bag. As a food allergy mom, I am no stranger to a big bag! Of course I need a bag full of snacks and treats, extra clothes in case of emergency, hand wipes and seat covers! Rather than Dan having to take my giant bag when he has Olivia, he can just take the Sammie case out of the diaper bag and go on his way. This way he has her medications no matter where they go, without having to take the giant bag.

I have to mention the quality of these cases as well! Olivia has run around, thrown it everywhere, brought it out fishing, on hikes and even to Disney World. No matter the adventure, the case has stayed clean, in tacked and looking like new. The material is so durable that no matter what she’s thrown at it, it’s held up. We could not be more impressed.

Dealing with medications that could save your child’s life in an emergency require a lot of responsibility and sometimes it can feel very over whelming. Making sure you have all the medications, making sure they stay safe and temperature controlled – can be so stressful!The PracMedic cases and brand know how hard this can be and this is why they created this amazing product – to set our minds at ease. I have felt my anxiety melt away as I’ve watched Olivia carry this case with confidence. She’s proud to have her medication on her and feels so cute with the bag on her arm.

We cannot wait to try even more of PracMedic products – especially as Olivia is growing and getting older! Next we will be trying out the COMPACT Epi pen case! Stayed tuned to hear how we like the new bag!

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!!