Ewelina Dalka – Mom Lifestyle Blog

Well, here we are. A year later and I am finally getting to this. But, better late than never right?

Life has been busy, lots has happened, but I am finally here to write it all out. Especially for my amazing BPES community, ya’ll want details and I am here to give them. The amount of people from all over the WORLD that reach out to me on a daily about either themselves, their kids, or someone in their family that have BPES is wild. BUT I think back to 3 years ago, when Mya was born, no one openly talked about it, or at least very little. One of the many reasons I share about my life, especially Mya’s journey, on social media. You are not alone.

But, if this is the first post you’re reading on my blog and you have questions on Mya’s journey from the beginning, please stop here and go back to read my other two posts, where I explain the beginning stages + an update. Those gives everything in detail, read those first if you haven’t already.

Moving forward, we have been seeing the eye surgeon + specialist (two different docs) consistently every 2-3 months or so. Because kids grow so much in their first few months and years, those appointments were crucial. Our eye specialist, he checked on her eyes, their health, vision, etc in depth. Does she need glasses? Is she using both of her eyes the same? Any eye problems? How is her vision? I mean all the things, they check for in detail. The surgeon checks her eyelids. How open are her eyes? Is she using her muscles? But also, How is her back/neck from having to constantly move her head up to see better. Those two doctors worked hand in hand and always communicated on the best course of action.

I can’t tell you enough how important it is to find doctors you trust and feel comfortable with. You read the original blog post, we did not have a great experience with the first doctor we saw. It’s ok to get a second opinion. It’s ok to question your doctors. It’s their job to explain everything and make you feel good about them taking care of your child.

We wanted to wait until Mya was a little older, for a few reasons. One being, surgery is a big deal no matter how small or big it is. Being put under anesthesia is a big deal, and the older she was, the better that would be for her. Two being, I mentioned this before, but kids grow soooo fast. She would have more muscle, more skin, stronger skin, would make a more successful surgery overall. Her vision was always great, never any issues, vision wise or externally, so there was ultimately no reason to rush anything. She is a perfect beautiful little girl, with little eyes, thats all.

However, if for any reason, either a concern of ours, or a concern for the doctors, if we decided surgery was needed sooner. We would have done it sooner. Ultimately, it is up to each family to make a decision based on what they feel is best for their child. There is no right or wrong answer. There is no right or wrong way to do it, we’re all just doing out best.

We also chatted about the different surgery options. Again, it was all dependent on the time of surgery, what age she was, etc. It was not a one size fits all. Not one type. It was all dependent on Mya and what would be best for her at the time to set her up for success for then and for the future.

Our original goal was 6 months, than 1 year, and Mya just kept showing all of us how great she was doing, in all the ways, which allowed us to wait until she was TWO YEARS OLD. As she got older, while her vision stayed great, she was becoming more aware to her surroundings and tripping more, not being able to see as far left and right without actually moving her head. Nothing where it stopped her from living a great life, she was the happiest bravest girl, but it was time to let her see more of the world.

We decided on the following surgery: ptosis repair via frontalis advancement and medical canthopexy.

The day of the surgery came before we knew it. My mama heart was so nervous on the inside but really strong on the outside. I tend to do that a lot lately. I have learned to actually be really calm in hard situations because being anxious won’t make the situation better. I’ll write a separate blog post about how I manage my anxiety.

We had a very early appointment, we were the first surgery scheduled that day. Thankfully because of course Mya could not eat or drink anything and girl always woke up hungry. She was in great spirits. I sat with her in the car, we had fun, we laughed, we read books, she was smiling the whole time.

We arrived at UIC and waited to be called in by the nurses. Our surgeon came in to say Hi to us, I think it’s so wild that the surgeons walk around so confident knowing they are about to perform surgeries, I think they are super heroes. We got called back in, he came to check up on us again, one of the many reasons we chose this team at UIC, they genuinely care. To all my fellow BPES mamas trying to find the right doctor, you will KNOW when you find the right one, you will get that feeling, you will trust your mom gut, you will know.

Our anesthesiologist came, she was a sweetheart. She made Mya (and us) feel so comfortable. She took the time to explain everything to us and answer any of our questions. Mya changed and got a cute UIC teddy bear to hold onto. We had fun in the room, we danced to her favorite songs, we made sure she was as happy as can be. She took her medicine which made her really sleepy. She was so silly, and then laid on her table and she was extra sleepy at this point, we gave her kisses and they wheeled her away. This moment was hard. Like really hard.

We went back to the waiting room. The surgery was going to take about 2 hours. It was forever long, that’s how it felt like. I kept staring at the monitors to see the status and if the surgery was done yet. 2 hours passed and nothing. We kept seeing nurses coming in to grab other patients to take them back, and no one was taking us back yet. I kept Mya’s rosary in my hand the whole time to pray.

Almost 3 hours later, we see our surgeon walking through the doors. My immediate thought was WHY IS HE COMING OUT AND NOT THE NURSES!! Is she ok, did something go wrong, I mean the MILLION thoughts that ran through my mind in the 5 seconds it took him to walk to us was insane.

He said “It went great” and the relief in my heart was out of this world. I just couldn’t wait to see her. He said the side of her eyes went great, they expanded it great. The top of her eyelid, they did as much as they could. He said he ultimately wanted to “open her eyes more” but she was fighting back, and he did not want to force her eyes open. I can’t tell you how much we appreciated this. We wanted her eyes to be more open so she can see better of course, trip less, not have to tilt her head back as much, etc. However, we did not want her eyes to be forced open.

If you read my previous posts, one of the things I’ll never forget the first doctor who told us she had BPES, told me. & I’ll share this over and over again. She asked me if I am concerned with the way she looks, the size of her eyes, or any scars that surgery would leave her with. I looked at her really confused and said NO. Why would I be? I just want her to be able to SEE. Her vision is most important to me, not physical appearance. She told me how many parents come to her and their only concern is how their child looks or will look. This makes me sad every day to think about. This is where bullying starts. This is where those parents are teaching their kids that how they look is not “normal” and we need to change it. Instead of teaching your kids that they are perfect the way God made them, and that other people are also perfect the way God made them. I know how strong Mya is already and I make sure every day she knows it.

There are SO many surgeries out there, so many options when it comes to the eyelids specifically. This one worked for Mya specifically. Your child may be different. Your reasons may be different. Your recovery may be different. Your choices may be different. & that is ok. Only YOU know what is best for your baby, don’t let others tell you what is right or wrong. You trust your gut, find doctors you trust. You’ll know the right thing to do, there is not one “best” or “right” thing out there. This one was right for us at the moment and time we were in.

Going back to surgery day, we went back with him to see her and she was crying Mama, and I held her in my arms so tight I was just so happy to see her. Not going to lie, she looked rough. Her eyes were full of stitches and she was in tears and of course coming out of anesthesia. She ended up calming down and took a nap on me for a little while. We were told to let her rest and we were to stay as long as we needed.

We had to make sure she was drinking before we were able to leave. When she woke up, she drank about 3 small apple juices. She was so thirsty! We got dressed, and headed home. She got home, ate some food. And you know what she wanted to do? PLAY!

The doctor told us to have her rest because she is going to be tired, to let her watch tv, lots of fluids, etc. Not this girl. She was ready to go and play. She didn’t want to watch tv. We went to the 4th of July parade the next day because she wanted to be outside. Acting totally normal like nothing happened. We had her sleep with us in bed so I can keep an eye out on her, and she slept just fine.

One of the things I owe to her recovery and making her extra strong for surgery is chiropractic care. You’ll hear me talking about PWC a lot, not only because I work there, but because it changes lives. Neurologically focused chiropractic is game changer. Not all chiropractors are created equal. Follow @pwcchiropractic and @pxdocs on instagram – good to educate yourself! I’ll write a separate blog post about this one too. But, we got her adjusted everyday for a week before and after surgery.

We went for a follow up after a week, and the doctor was so impressed with her healing. So were we all. My strong Mya girl, always was and always will be. We had follow up visits every month with him and then went down to 4 months. We just had our latest visit with him, and we are good to go for a YEAR. A fricken YEAR guys!! Of course we still see the eye specialist, because her vision and eye health needs to be monitored but not having to see the surgeon for a year is huge!

Plan moving forward? Unless something changes with her eye sight or eye health, she doesn’t need surgery as of now. They were originally thinking possibly another one before kindergarten but again, it all depends on how she grows. Every kid is so different. No one can tell you 10000000% that your BPES baby will never need another surgery. They’re still growing. Things can change. Maybe she will, maybe she won’t.

As far as her ovaries, we won’t know until she is a little older. The genetic tests came back inconclusive. We will tackle that road when we get there. One thing at a time, I am not going to stress about things I cannot control at the moment.

I am so glad she is able to close her eyes at night. One of the risks of opening too much was not being able to fully close her eyes, and then it causes dry eye and there are risks to that. Her scars, unless you really look so close, you don’t see them.

I know many of you are concerned about bullying and people staring. I know this is hard. We go through it too. People don’t know any better. Take this moment to educate people. Take this time to show your kids to be strong, confident. Will it always be easy? No. But kids bully and make fun of other kids for the silliest things, unfortunately. But it starts with us. I am actually going to make little cards for Mya, that say “Hi I’m Mya, I have BPES” and educate people on what it is and why she may look a little “different” I’ll give this to people as they ask, and they will ask, they will look, let’s tell them — this is where it starts, with us.

If you know Mya, she is just a JOY to be around!!

I hope this was helpful, please message me if you want to chat more or ask me any more questions. This is why I am here and share so much on social media, to be able to help people.

And if you have a BPES kiddo, remember, they are beautiful and perfect just the way they are!