Six months ago, I shared what Brandon and I had been going through with Karrington and her diagnosis of coloboma in both eyes. It is something that I have come to terms with and worry less about as time goes on. Instead, I am focusing and putting my energy into helping her overcome a visual disability to navigate a world through a different lens. Since then we have had several tests, doctor visits, and even a recent hospital stay. So much has taken place that the last post seems light years away!
Over the summer, we took Karrington to see a doctor at UC Davis that specializes in genetics. Sometimes those that have coloboma have kidney or heart problems as well that we wanted to rule out. After talking at length with a genetic counselor and the doctor, they thought Karrington likely didn’t have any of those issues. However, they recommended that we see a cardiologist, have genetic testing done, and have her kidney’s checked because of her small size. (Even at 14 months, she weighs in at under 15 pounds!!!) Thus, we started lab work, ultrasounds, and doctor visits that no baby should have to undergo. The appointments weren’t fun, but I think they were probably harder on us than they were on her! Fortunately, our prayers have been answered over and over again.
After seeing a cardiologist, we learned that Karrington does have a small hole in the upper portion of her heart. However, the doctor told us that about 10% of people have this and it is something that doesn’t concern him at all. Her heart is strong and doesn’t have any problems that should cause any concern. In addition, the ultrasound on her kidneys came back normal showing that there are no issues, and the extensive blood work taken (gene microarry) came back as completely normal as well. I thank those of you who have been praying for her as well as Brandon and I. It truly means the world and has given me so much comfort during long, difficult days.
Just last week before Christmas, we made a third visit to UC Davis to see Karrington’s ophthalmologist. Now that she is a little older, we were able to get a little more information in terms of how she can see. The doctor told us that in her right eye, she is legally blind. She really doesn’t have much vision at all in that eye which is why it crosses. In her left eye, Karrington has 20/100 vision. 20/100 vision is pretty poor and isn’t something that can be corrected. However, the doctor believes that she will be able to read large print and not have to learn braille which is HUGE! I know that she will be limited in what she can do, but the fact that she’ll be able to read large print is something I’ve prayed about every single day. It really is the best news that we could have hoped for. At this point, we are in the process of getting Karrington glasses to wear to protect her eyes. Since she doesn’t see as well as we do, she is more prone to accidents and potentially hurting or damaging her eyes with the eyesight she has so glasses will help with that. We definitely don’t want anything to happen to her left eye that she sees out of!
Besides going to different doctor appointments, Karrington has been enrolled in Nevada Early Intervention where she sees a vision specialist. This has helped me be optimistic and see how she is able to navigate her world. Karrington has scored really high in her cognitive and problem solving skills. Even though she scores low in vision, because of those high scores things somewhat level out in what she is able to do! The specialists she sees comment over and over at how well she is doing and how remarkable what she can do is with her limited vision. A few months ago, she started walking at 10 months old, which they said was the youngest they’ve ever seen a child walk with a visual disability. She’s on her way to breaking records and surprising those all around her with what she can do!
In an unrelated event, besides traveling to UC Davis for a doctor appointment last week, we also made a trip to the hospital with Karrington just a few days before Christmas. Karrington has started holding her breath since she turned one when she becomes really upset and will pass out. This has happened a handful of times during which she will start breathing normally again soon after. Well, Reagan accidentally ran into her and knocked her over going around a corner and Karrington immediately held her breath before going into a seizure. After one minute, we called an ambulance and even when they arrived at our house 9 minutes later, the seizure had not stopped. Those were the longest 9 minutes I’ve ever experienced and I hope nobody else has to go through with a their child. I recently learned that if a seizure does not stop on its own after 5 minutes, the chances of it stopping is slim to none. So, Karrington and I made our way in the ambulance to the hospital during which they were able to stop her seizure. After arriving there, she was admitted into the pediatric Intensive Care Unit where she had a handful of tests including a CT scan on her brain, an EEG, and a MRI on her brain. It was without at doubt the scariest day of my life to date. The reason I mention this whole thing is because all these tests came back normal which is amazing news! The cardiologist mentioned us possibly seeing a neurologist when we saw him due to her small size, so I’m happy to know that the tests on her brain came back normal and is not something that we should worry about. I’ve never been so excited or relieved to have a child with the word “normal” attached. I think sometimes as parents we want our children to be exceptional or “above average” in many ways but when you start seeing all sorts of doctors and having these experiences you realize that being normal is sometimes the best news you can hear! I am beyond thankful that Brandon just happened to have taken a day off of work that particular day and was home as well when it happened. Our big worry was possible brain damage, but the doctors told us that wouldn’t happen unless the seizure had gone on for a lot longer than it did. We are currently scheduled to follow up with a neurologist as to why she would have a seizure that would last as long as it did from holding her breath. I’m hoping and praying it will be an isolated incident.
I’ve learned a few things during the last six months and even the past week with our recent experience in the ICU. As I walked the halls this past week at the hospital and witnessed what other families are going through with their sick children, I was reminded that I have an abundance to be thankful for. I know things could be so much worse. Focusing on the positive, the victories, no matter how small or big they are is important. When you do this, every day is one to be thankful for and makes you look forward to the next day no matter what challenges await. Going through all these things really puts life in perspective for you and really shines a light on what is important. I also learned that situations you can’t imagine being in make you realize just how strong you are. With Him, I believe you can overcome any obstacle or hurdle life throws at you. Furthermore, I was reminded to always be kind and compassionate to those around you. You never know what others are going through and how a simple smile or kind gesture may help or affect them.
Life is chock-full of challenges, but it is comforting to know that we can lean on our family and friends during the rough patches. Thank you so much for checking in on us, and for your prayers. Your continued prayers have given us the answers we hoped for during the last six months of doctors visits and tests. I hope in six more months, I have even more good news to report on!