Making the Right Choices...the When Everyone Has an Opinion Edition

I feel like I wrote THIS forever ago. But I stand by the message and everything that I said.

Being a parent is hard. Making decisions that are health related in regards to your child, is even harder. As an outsider, never think these choices are made easily or by flipping a coin. They are hard decisions that parents and their children have to live with every day, even after the decision is made.

Going down the rabbit hole of Google and all of its information has its good and bad. Obviously when making large or even small decisions, who does not want to be as fully informed as possible on the topic to make the most educated decision and feel comfortable doing so. Especially as a parent. Nothing makes me more irritated than the "I told you so's". If you are one of these people that like to gloat about being right or keep nailing in your sentiment while not considering the individual you are talking to (especially not having all the information), please stop and apologize to your friends and family members right now. The good is also the bad, just too much information...here's looking at you WebMD. Has anyone else had smallpox more than once according to them....I kid...kinda.

Something can be said for having so many people who truly love your kids like they are their own, but with this type of deep-rooted love also comes with a whole lot of opinions. Often unsolicited...lets be honest...98% unsolicited. I think with any kind of relationship, boundaries are healthy and boundaries need to be respected. This may mean that boundaries also need to be clarified. My mother and I do not agree on a lot of things, but I recognize everything that is said out of love and concern so if I feel the conversation is going in a direction that will have us arguing, I express it to her. If she continues, I calmly let her know I can no longer continue the conversation and hang up. Sometimes this involves also blocking her texts, since a onslaught of what she didn't get to finish will be sent. Of course my mom is text savvy enough to text, but not enough to know she's been blocked, so this is clarified too. Set. Your. Boundaries. It is good for not only your mental health, but for those around you since they won't have to listen to you rant and rave for an undisclosed amount of time.

The same came be said for friendships. Do not be afraid to express that you appreciate their concern or even their knowledge on the issue, but that you are prepared to make the best choice for your child. Again, if it continues...disengage. Normally on texts, I'll just stop texting altogether or respond with one-word answers until they pick up on my signal/cue. To me, it's never worth ending the relationship over because again, love is the drive leading the conversation, but I'm also not going to let anyone else decide how we parent either or make me feel admonished for our decision.

Anywho, I digress....

EV didn't always have glasses and really it was not until she was a little before one years old where I even began to see her eyes turn inward. Although looking back, I can see the slow progression.

In the beginning of watching the progression of her "lazy eye", I would touch my finger to the tip of her nose and watch her eyes straighten out. It only took a couple months past doing this where when I put my finger on her nose that her eyes no longer straightened. In fact, they just stayed inward.

I will never forget being at the Ale House with my best friend and her wife and my best friend who is an Optometrist calmly looking at me over her beer and saying "when is her next Ophthalmology appointment?" When I told her it was in another six months, she just as calmly glanced at EV looked back at me and said "make another". One of the many reasons I love EV's eye doctor is because he is never proud about what he does in the sense that if you see someone else and go to him, he is not offended with second-opinion conversations, so when I told him about the dinner date with my best friend and why I felt another appointment prior to our first year follow-up was necessary, he didn't even hesitate to tell us to make an appointment. I would say within the first two minutes of him seeing EV his response was that he was glad we didn't wait because she definitely needed to be brought in and five minutes after that she was in glasses.

EV was diagnosed at around 6-8 months with Strabismus, which you can read more about HERE.

It is incredibly common and there were no less than three of my friends who when I gave them EV's diagnosis told me that they had had it too.

I am sorry, but have you ever seen a cuter little person in glasses?! I may be a smidge bias...

Literally, one of my favorite pictures EVER. Baby EV facial expressions were the best!

Anyone that has spent any lengthy amount of time in the NICU can you tell the range of specialists that you will see while you are there and the multitude of individuals that will need to clear your newborn before you are able to take them home. While EV was in the NICU she saw an amazing Ophthalmologist who till this day is the only specialist from the NICU that we still see.

There is just something special about Dr. Kanterman. He is cool, collected and articulate in the way he speaks. Although, I can see where he would not be everyone's cup of tea because of this demeanor (not overly chatty or animated), but it is this exact personality that puts us at ease every time we talk to him on the phone or see him for an appointment. I love that he is the person that calls you back and does not leave his office manager to be his liaison (although she is just as informed). As you would assume from being a specialist, he is extremely well-versed regarding the information he is giving, easy to talk with and patient-centered (absolutely excellent with children). He just has this unbelievable way of communicating the information so that it does not appear as though he is "dumbing it down" but rather educating you. In doing so, it gives you the right amount of information you need (not overloading the senses), it allows you to retain the information (being able to repeat the information is detriment), and you will able to do your own research because it will be terminology that you will remember to look up on the old Google machine. He is also extremely calm about the information he is providing so even if you are freaking out on the inside (possibly on the outside too), his mannerism puts you at a place where you can be comfortable asking all the questions and feel confident about the answers.

Which brings me to the following tweet?! Twitter?! Whatever the cool kids are calling it, I don't have one, but it was on Instagram and it really struck a chord with me. So much so, that this is how my husband and I now communicate when we are having a particular rough day or having strong feelings about a particular issue. I not only love the message of this, but I think is a perfect way to communicate with loved ones as well assisting in setting those boundaries.

via @DrunkScribe

Lets keep in mind that Dr. Kanterman was not a stranger or a doctor that we found by happenstance, but he has been following EV as a patient since the NICU and he had to clear her and her eyesight for release. Everything he did and has done with EV was a slow and well though out progression.

First, it was glasses...

Then, it was an updated prescription (as you can see there is quite the timeframe...no pun intended...so again, no quick decisions were EVER made).

New Frames Who Dis?!

and here we are now...with surgery being our next step. Now by no means was this conversation brand new to us, in fact when we had brought EV to him prior to our yearly to discuss her strabismus, he had already prepared us for this conversation. We knew that surgery (although a last resort) was something we should prepare ourselves for. When EV was first put into glasses her eyes almost immediately straightened out or at least straightened more than we had seen them. It was when the second glasses with the upgraded prescription (pink glasses) were done that we began to notice that her eyes regardless of glasses were not staying straight for long periods of time. It isn't that they are inward all of the time, but it is more like they drift.

Although it may not seem like a big deal, you can distinctly see the difference of when she is "head on" versus the "drifting"

Also just for reference and this pictures was in the previous blog post as well, but this is what EV looks like without glasses. Yes, she can see fine and if I stand a good distance in front of her holding up fingers or objects she can tell me how many or what it is.

When the more extensive drifting began to occur we made another follow up with Dr. Kanterman. He promptly told us that surgery should be our next step/consideration. There are plenty of articles on the surgery and expectations, but THIS website is specific for pediatric optometry information. From what we are told, the surgery is outpatient (I won't go into the gory details of what they do, you can read that on your own), and after the surgery, kids traditionally need two days before feeling 'normal' and then their eye will be red for about 6-8 weeks, but everything else will be like they never had the surgery at all. We were informed that in small instances that another surgery farther down the line in her young adult life may need to be done, but other than that there wasn't much need for concern in regards to the healing process itself.

My best male friend actually had the surgery and although it has been many years since he has had it, I felt comforted in knowing that someone we knew had the surgery and that it turned out just fine. There are different surgical procedures that are used in strabismus patients. The surgery itself much like the diagnosis is common and I had not read anything that made me nervous or second guess EV having the surgery...until I began telling people and family members we were doing it. Why oh why do I do this to myself?! I 100% understand that it comes from a place of love, but it also comes from a place of people that did not spend 5 months in a NICU with me or know her medical history. My husband and I are the ones who have to live with this decision (and obviously EV) and no one else. Honestly the questions that should be asked here are; do you want my advice?! Please see above at said tweet for a great way to lead the conversation if you do not know how to enter the space.

Now I understand why some parents might be opposed to having a surgery conversation prior to even seeing if glasses were even going to resolve the issue, but both myself and my husband are not big on "not fun" surprises so we were more comfortable revisiting a topic rather than being blindsided. The original plan was to have the surgery the day before Thanksgiving (2020). I know not a lot of people would have gone for this route with upcoming holidays, but with my work schedule, I felt like I would have a good amount of time just being able to lay next to EV and let her heal without dealing with any stressors from work (especially since I am off 2.5 weeks for the Christmas break). However, in typical Florida fashion, there was a spike not only in COVID cases (we can never play well with others), but in the opinions of those around me.

Here is where I began to second guess our decisions. Even though I knew that that surgery complications were extremely low and that there was an extremely high chance of success, having to worry about taking EV out of the house she hadn't left since March was taking a toll along with everyone else's advice that were coming in waves.

Sooooo here we were with the surgery officially happening and then....the pandemic happened.

Because of the spike (and ::cough cough:: other things), Hubs and I had decided to push the surgery off until March (it is now scheduled for March 2nd) so that we could consider everything and get through the holidays. Vaccines have been released to medical first responders here in Florida and it has been confirmed that both Dr. Kanterman as well as the outpatient staff who will be with EV on her surgery have all been vaccinated. One concern at least from one person in our circle was now eliminated (check). Now I know the next question is whether or not we got a second opinion. I called for one twice and never received a callback and that included after I filled out a lengthy form. The reality is this, Dr. Kanterman is not only one of the top pediatric ophthalmologist 's in the state, but he is well known in neighboring states as well (Georgia, etc.) and patients drive/fly in just to see him. We feel 100% confident and as mentioned he has been with EV since the NICU and having to get the enormous amount of patient records to send to another office where we knew in the back of our minds was not going to change anything seemed counterintuitive. As far as looking into "therapy" was concerned, I do not feel I have to go into detail regarding our own reasonings why this was not more of a front-runner consideration. Since this might be a decision that you have made or would want to consider, it is not my place to talk you out or into it, it just was not on the agenda for us.

Remember that time I told you that you shouldn't have to explain yourself and then I went into a several paragraph rant explaining myself and my decisions....good times!

At the end of the day we made the decision to do what we felt was best for EV. One of the strongest deciding factors was that a majority of the the articles I was reading were basically saying that the younger you are the better healing recovery time you have and that you do not want to go too far past the age of four (this had also been told to us by Dr. Kanterman). I should say that having a doctorate myself (although not medical) comes with the extensive need to research and by research I mean journal articles not just sources that regurgitate information from other websites although many parent blogs that talked about their own experiences were just as good and personal experiences were equally important to us. Therefore, with EV just turning four we knew that our window was slim. This by no means made our choice rushed it just helped with the decision process.

Is it wrong that whenever I see EV's earlier pictures, I think of this....

via

Seriously....how do I unsee this?!

After talking to my best friend about his surgery all he seemed to recall was that there was a lovie waiting for him when he woke from the anesthesia. Who doesn't want this to be there only memory of when they had their first surgical procedure? Or at least one that she is not in the NICU for. I knew I wanted something special for EV to get as a present afterward. She has so many stuffed animals and characters that I didn't see or find anything that I thought was going to be special, however, I did see that Raya and the Last Dragon was going to be released as a Disney+ Premier Access movie. Normally its a movie that you pay for ($25-30) and it ends up releasing 3-4 months after as part of your subscription. Honestly, considering the timing I do not care about the price as it will be worth it and with as many times as EV watched Mulan, it was worth it when I paid for that too. Anyone that knows EV knows her love of Disney Warrior Princesses (Ahsoka, Mulan-live action only, Elena of Avalor, etc), so we were super excited that the release was going to be March 5th. We are hoping that it is a movie that EV loves as we pretty much got her surgery presents that directly relate to the movie, such as THIS costume and THIS necklace. The costume although not as expected is really cute and it says it is 4-6X, but there is absolutely no way. I would say it is for 3-4 years old (petite ones at that) and that is it! At the end of the day, EV would prefer a new Disney movie and matching outfit over anything else, so the timing for healing and Disney binging is perfect.

Hubs did go to the appointment prior to the surgery yesterday and asked all the questions, EV was given an "all clear" and basically told Dr. Kanterman about everyone else's questions where he calmly responded with "have them call me". Have I mentioned how much I love this man?!

The takeaway is this, and this goes back to the original post that I linked above and that is that no one knows your child better than you and therefore YOU are NOT CRAZY! Ask all the questions, get the second opinions, take the first opinion, listen to everyone, listen to no one, read the articles, stay away from Google and WebMD or use them as your only source of information...at the end of the day you have to follow your instinct in knowing what is best for you as a family and your child and how you proceed is solely up to you (and of course consulting with your physician because lets be honest some things have to medically be done without you being in agreement with it or not). EVERYONE is going to have an opinion on what you should do, but none of these people have to live with the decision the way you will have to. This also means that if you are the one giving the opinions, make sure that the individual wants them and that they are warranted. If you are giving opinions and you are recognizing that said person is not responsive to your advice...check on your person they are probably annoyed as hell and are afraid they are about to say things they are going to regret. See the opinions as just that....opinions, put them in a nice box with a ribbon around it and place that box (and put that box in another box...Emperor's Groove anyone?! Anyone?!) in the back of your closet where you do not even have to look at them...you may want to go through it later in life as you would old love letters or heck...you may want to throw it into a river never to surface again....the important thing as a parent is not regretting your choices because you feel as though the decisions you are making are not of your own choice but of others...

Now go hug on your littles while I prepare myself for next Tuesday and work on not vomiting that morning.