Glasses, EUA, and Cyst update

I figured it was time for another update since a lot has happened. Scott is now 4 and a half years old. His eye’s are doing amazing! We have been in full time aphakic glasses for a year now! I can’t believe its already been that long. We had so much trouble finding a good contact fit. It was finally decided that the shape of contact he needed only comes in adult sizes and his eye is too small for an adult contact.


We switched over to glasses only and even though most doctors discourage uni-cataract kids to wear aphakic glasses full time our doc has been very impressed.

In April Scott had an EUA.  He had a couple high pressure readings in the office and they wanted to get a better look at his eye without him fighting. He rocked the exam and his pressures ended up being great. YAY!


Our last Eye appointment was the Thursday before Christmas. Scott did such a great job! Scott’s vision is still improving and is 20/40 in his bad eye and 20/30 in his good eye. I can’t believe he held so still and was so happy. On the way home from the appointment he started complaining of a stomach ache.


Thursday Night: Scott’s stomach started hurting a lot. He cried most the night and didn’t sleep.

Friday: Scott was still in a LOT of pain. We took him to the pediatrician and she thought he might be very constipated. She sent us for an x-ray. While waiting for the results Scotts pain kept getting worse. We took him to the emergency room which took forever and in the end, send us home to do an enima. No one was very helpful and scott was hurting so much. Friday night Scott still was in a lot of pain. He cried, screamed and didn’t really sleep. He refused to eat.

Saturday (Christmas Eve): Scott was still in a lot of pain and we just felt like something wasn’t right. (always follow your gut feeling people!) We took him to the Dornbeckers children’s ER. If your kids are sick take them here. Such an amazing place. They got us in and talking with a doc in less than 5 minutes! We went though tons of test, x-ray, ultrasound and doctors. They didn’t know what it was but could possible be his appendix?We needed an MRI but scott wouldn’t hold still for one. At about 10pm they told us we could spend the night and see how he was doing in the morning, in the morning we could have him put under for an MRI or do a CT right then. We did the CT scan. Around midnight the doctor came in to tell us she found something abnormal on the scan! This is one of the scariest nights ever! She continued to show us the scan…. The HUGE dark area is a large mass surrounding his intestine! It was HUGE! They didn’t know what it was…



Sunday (Christmas day): We were admitted to the hospital early in the morning and given our own room. Scott was given a bunch of pain meds and was finally getting some much needed sleep. After a team of doctors had examined the scans they came to tell us they thought the mass could be a large cyst. We were told it was closing off his intestine and it needed to be removed. At about 11am Scott was visited by Santa. (I am so grateful for the AMAZING volunteers like this man who come and spend their Christmas mornings at children’s hospitals!)


Immediately after Santa came we were taken down to surgery. I never thought I would be spending Christmas morning in the Hospital waiting for my son to get out of surgery! So scary! Surgery went great and they were able to fully remove the cyst, part of his intestine and his appendix. Scott woke up hurting but happy. He even found the energy to put together his star wars lego from santa!


Monday: Scott was tired and hungry. We had to wait for his bowels to start working again so no food or drink. He was able to get up and walk all the way to the play room today.


Tuesday: Scott was really ready to eat and drink today. He was doing so well they decided he could start on clear liquids! YAY! He was so excited! Today our family came and we opened our Christmas presents. The kids were so happy to finally have Christmas!


Wednesday: Scott did so well on liquids that he got to eat! He was so happy to see some mac and cheese! We got to go home wednesday evening. Wahoo!



Now 2 weeks later Scott is doing AMAZING! He AMAZES me every day! We had our follow up with the surgeon and the final diagnosis is “lymphatic malformation”. It was hard enough knowing that scott was born with a congenital cataract but now to know he has another congenital defect type thing it hurts. Why does it always have to be a “no known cause” type thing! Its been a stressful, crazy couple weeks. I still wonder if this is somehow connected with his congenital cataract. Im going to have to do some research.

For now, remember parents. ALWAYS FOLLOW YOUR GUT FEELINGS!



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