A little update on Connor and his beautiful eyes!
We went to UCLA 2 weeks ago for a checkup with the contact specialist and his opthamologist. He has been seeing his contact specialist every three weeks, but she asked if we would get an appointment with Dr. Demmer. Yep, okay! So we did and visited both of them in one day to make it easy on us. Not like it really is easy sitting in the office doing tests for 5 hours! But it is nicer to do them in one day and not be driving back and forth to UCLA. It is hard on Connor, but this day, you would have never known. He was the most cooperative patient ever! He sat in the chair all by himself, listened to the doctors, performed each and every test without a complaint (well the eye drops to dilate his eyes were a nightmare). And of course informed everyone that he is now 3 years old, a big boy! I was amazed, the trust he has grown with his doctor's is unreal. It makes me feel so confident that he is in the right place and he too knows they are helping him see better. Dr. Demmer, his opthamologist was known as Dr. Awesome for the day. So the BEST news from the day, since he was so cooperative, they will NOT have to put him under anesthesia this summer. WOOOO HOOOO!
We went to see Dr. Demmer because Dr. Woo, noticed in the past 6 weeks Connor's right eye was getting worse and she thought Connor was starting to shut his right eye down, using only his left eye (the stronger one) to see. This is something we could not tell while he was wearing contacts. However, Mike and I had both noticed if he was wearing his glasses or nothing at all he always closes his right eye to look at things. :( Not what we wanted to hear, but he was due for a check up in June anyways, so this was just a few weeks early.
Dr. Demmer really is awesome. He is so good with the kids, engaging Connor with new toys, movies, and stuffed animals. Connor was doing one of his eye exams and Dr. Demmer put on Tom & Jerry. Connor said, "Wow, Lightening McQueen". Man, I watch Connor everyday and look at how he interacts with things, but it still breaks my heart. I just tear up. It is SO hard to stay strong, when I need to. I am so grateful I always have a Grandma there with me, who stays strong and is so loving to me, Connor and Taylor! THANK YOU Sue and Mom, you woman are so powerful and strong. I really thank you for all your support attending these appointments with me. Connor knows his complete alphabet and will do the eye chart, naming the letters as they get smaller. He can not state which one is clearer yet, but we will get there. It is so hard to see him stop naming them when to my eyes, they are huge! He is seeing a bit better now. 20/60 in his left eye and 20/80 in his right eye, with contacts in. Both doctors are very happy with how well his contacts are working and fitting. Connor got a few breaks as they dilated his eyes. He LOVES to go outside and and have a snack while watching the construction trucks building the new hospital.
When we went back in with Dr. Demmer he checked his new prescription. He confirmed that Connor's eyes have gotten worse. :( Why? We do not know. It is heart breaking to not know the answer. To not know what his eyes will be like by the time he goes to Kindergarten. It truthfully is the worst. "Why Dr. Demmer? Why?" I think I said that over and over. I really just want to know. His answers to me, Connor may have Stickler's Syndrome and it just did not show up. He may have a disease we have not discovered yet. There is nothing else we can do, except give him corrective lenses and continue monitoring him closely. The best news is the medical field is progressing so quickly that hopefully we will find something soon. When my mom and I started asking about all the surgeries that can be done, he mentioned that there is no surgery that can correct Connor's eye sight. He said to me, I don't think you know how rare and severe your son's eye sight is. REALLY? Just what a mom wants to here! I told him I know, I think I just want an answer as to why. Dr. Demmer gave me some lenses to put over my eyes to see what Connor can see. WOW. I did not know how severe his eyes were. My heart stopped beating. A stream of tears rolled down my cheeks. Connor has learned his world as a blur. He has no clue of the beauty and definition of things. He has learned everything in his world like the colors in the rainbow blur together. And he is HAPPY! I am so very THANKFUL. He does not know anything to be different. I pray there is answers. I pray there will be a way to help his eye sight. I look forward to the day that it clicks for Connor, and he can see things clearly.
After the appointment we have ordered him new contacts and new glasses. He will be getting his first pair of big boy glasses (no back strap!) soon. I will update with a picture :D! They said to wait 20 days, as it takes a while to make his lenses. The worst part is his new prescription will not allow for transition lenses, which is a bummer because his eyes are so sensitive to sun light. Prescriptive sunglasses will be the next thing to order. He also just started swimming lessons again, which is hard for him because he wants his glasses so he can see and he is not allowed to wear his contacts in the water. I tried to order him prescriptive goggles, but they do not make them withi his prescription or even close to it. Ugh, so frustrating. He was having a very hard time at first in swimming, but I think he is building more trust with his teacher that the tears have lessened.
As for contacts...Did you know as of June 3rd, Connor has been in contacts for 1 year! I can't believe it. A year ago, Mike and I would have to hold him down. It would take about 45 minutes to get them in and ending with the whole family crying and hugging each other for an additional 45 minutes. We also ate LOTS and LOTS of popsicles to make us feel better! Thank God we are still not doing that. He is getting much better! We put them in every morning after breakfast and after our snuggle time when he wakes up from his nap. He puts up a fight 2 times out of 10, making the complete process 3-5 minutes. It has to be the same routine, same place every time. He has to sit on my bed, feet over the edge, hands down, and I have to do the blue one first, give it bubble kisses and then the green one with more bubble kisses. So it works, while we are home and he is doing good. He still says he does not like them and they bug him. But I can tell a huge difference in his behavior with others, his confidence in trying new things and the way he focus' with his toys. There are a lot of rules with his contacts and he knows them! He knows he is not allowed to dig in sand or dirt, go to the beach, take a shower or take a nap. There has been a few times I have asked him to get in the bath with his sister and he freaks out, "I can't, I have my contacts in!" Or we are driving somewhere and I ask him if he is getting tired and needs a nap. "I need to, but I can't. I have my contacts in." I give him 1 more year and he will be putting in his own contacts :D!
I may sound crazy...but I have put in orders for Connor's medical records with his eye doctors so we can see a few more doctors and get their opinions. I just don't want to settle on one doctor's opinion. I will keep you posted on those visits too.
Thanks again everyone! I have appreciated all of your suggestions, lending your ear, reaching out to find support groups, doing research to find answers, asking your friends and family for opinions and praying! Connor man is such a blessing to our family and we forever hope he will be able to participate and accomplish everything he wants to in life!
Much Love,
Connor's Mommy
