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Why Do You Call It A Prosthetic Eye?

There are many phrases that we grow up with that just are what they are. Until having a child that needs a prosthetic eye, I had always called them glass eyes. I got this from my granny recounting stories of a family member who had a glass eye. Literally, it was made of glass as this was in the early 1900’s. It just is a phrase that is used without thought because that is what they were once made of. Now, I have been asked to think twice before I speak. I recently received an email from a young woman in Korea. This was not the typical email I receive through my blog or social media accounts. She was not a parent trying to find information on her child’s health conditions. This young woman was diagnosed with microphthalmia as an infant. She was asking me why there were so many terms for a prosthetic eye. Especially when those terms can make someone with one feel like their condition is not being fully recognized. She said that she specifically was searching with the term: prosthetic eye
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Katia is Three and Thriving!

Hello Friends!  I can’t remember where we left off but oh my! Time has flown. Katia is going on three this year (how?!)!  Since we last checked in, her prescription has yet again changed. She was lowered to a +15 and now has glasses with prescription strength to help her see from far away.  We are still aiming to patch 4 hours a day and although somedays are like a hot knife through butter. Other days are like cutting steak with a butter knife.  We traveled recently and it was our first actual “contact and patch” trip. I was SUPER nervous to say the least. We were travelling to Mexico so we wouldn’t have access to any extra contacts if they were to get lost and previously when on vacation, I never had to worry about time. I was able to take a back up contact with us and then ALL the patches. She did so well, and I felt like I almost stressed for nothing. We went swimming and she did great having her contact removed and because we were so busy patching was a breeze. It was a great opp
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An Update on Katia

Following our last post, life with Katia has been a whirlwind!  At our latest appointment her prescription was changed from +19 to +18 and I remain hopeful.  She has also started walking! OH MY! She used to crash into everything and walk on her tip toes, so we ordered her first pair of glasses for protection. We have still been patching for 4 hours a day and although, as the days go by it gets a little harder we continue to work toward those 4 hours.  Katia has learned that if she rips her patch off and sticks in her mouth to get it gooey, we can’t stick it back on!!  She has also learned to throw things away. Like I said, life with Katia is truly a surprise. She has reached all her milestones and loves to read!  Despite the fear of living each day wondering how much vision she will get back I know that she is a relentless, smart, vivacious little babe who will conquer anything that is put her way. I do not feel like her vision has affected much of her life, as this is what she knows.
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Katia's Journey

Our sweet girl was born on October 26, 2017 at 1:14PM. She was sassy, loud and very healthy, we named her Katia Zoe.  At around 4 months of age I started to notice that Katia’s right eye would not focus as well as her left eye. I know someone is always telling us to not compare to other kids, but you can’t help it when you have 3 other babies around her same age being able to focus both their eyes. I brought this up during her 4 month well child check and the pediatrician immediately referred us to Seattle Children’s and within less than a month we were seeing Dr. Baran. She gave us the diagnosis of PHPV or PFV and unilateral congenital cataract.  Of course, my husband and I had no idea what this meant. Dr. Baran went on to explain that we would try to gain as much vision as possible shooting for at least 20/200 and then the word legally blind was thrown at us… this was very overwhelming especially since the next step was surgery, on our perfect babe who wasn’t even a year old. It took
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Prosthetic Eye... Here We Come!

Life with a baby is hectic. I would love to say it is so amazing and wonderful all the time… but that’s not the truth. It has its moments of wonder, love, and warm fuzzy feelings. It also has dirty diapers, mountains of laundry and, if you have a child with a special need, lots of appointments. We love sharing our journey and wanted to give our PFV Family an update on what exactly Scarlett has been up to! In March, we had her exam under anesthesia where we learned that everything is going well with her left eye. She does need a little prescription but Dr Rama expects her to grow out of it. Dr Rama also confirmed that her micro eye is indeed getting smaller. This is something she told us to expect. She has told us that Scarlett’s condition is one of the most severe she has seen. This was one of the most stressful mornings I have had since she was in the NICU. To hand her over, was hard. I have major, major respect for the moms and dads who have had their little one go through eye surger
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Trust Your Mom Instinct: Scarlett's Discovery Story

Childbirth was a beautiful experience for me. From the moment they cradled Scarlett in my arms after her first bath, we immediately noticed her right eye looked different. We asked the pediatric RN who was taking care of her, the midwife and even my nurse about it. They all said the samething: it was swelling due to birth trauma. In the bliss of the moment, we didn’t question their answers. The pediatrician checked her out a few hours later during rounds and proclaimed all was well. Again, we asked about her right eye. She gave us the same answer we had already received. She was almost sunny side up, it was swelling from birth trauma. Surprisingly, this isn’t that uncommon for births with these conditions. At 27 hours old, Scarlett ended up being sent to the level two NICU in the hospital that I delivered her in. Long story short, she was experiencing pulmonary hypertension. She ended up on oxygen and was constantly monitored. On her second and third days in the NICU, she made so much
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Advocating When Nobody Listens

When Arthur was born , we noticed almost immediately that one of his eyes seemed a little swollen shut. He would open one eye and not the other. We asked the doctors about it while we were still in the hospital after his delivery. Our resident doctor assured us that it’s common for babies to have some swelling or similar symptoms, especially when they deliver “sunny-side-up”. The next day during the rounds, we continued to voice our concern over the disproportion and favoritism opening one eye and not the other. The overseeing physician repeated the advice we received already, and to be honest, it’s easy to listen to what you want to hear. Arthur passed all of his tests. I stayed in the room for each one. He aced his APGAR with a 10—crying before even being fully born. Chaos ensued at home , and we enjoyed our time together before making our way home. At his follow-up clinic appointment, we voiced our concerns again—nothing was improving, and we were able to look closer
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