Let's start with some big positives. JR's eye post-upper eyelid lift and lower lid reconstruction looks great! He no longer has a droopy look to his eye, and his lower lashes are no longer rubbing into the eye, hooray. These measures will improve JR's ability to use his eye and gain vision, and are a cosmetic boost as well. We noticed that JR's eye doesn't completely close now when he sleeps, but obviously that's no biggie.
Now for the tougher stuff. At age almost-three, taking JR to any medical appointment has become extremely challenging. His anxiety over anybody touching him in a medical setting is extreme. Can I paint you a picture? This very morning: We (JR, 5-month-old Charlotte, and I) were sitting in the packed waiting room of CHOP's opthalmology clinic. JR was standing since there weren't enough chairs. We'd been waiting about 30 minutes and I'd just begun to nurse the baby. The door opened and the nurse called John Ryan's name. JR immediately screamed "Noooooo!" and threw himself face down on the floor. I went to put Charlotte down, but she was not letting go. The nurse saw my situation and picked up the screaming and fighting JR and carried him towards the exam room. I trailed behind, awkwardly pushing an empty stroller with one hand while carrying the baby STILL ATTACHED to boob, since I didn't really want my nipple ripped off on top of everything else. A little morning entertainment for the masses in clinic. And all before the appointment even begun.
So, why two clinic visits this week? Over the weekend, JR's eye grew extremely inflamed and his sensitivity to light became extreme. He cried and held his hands up whenever exposed to sunlight, despite wearing sunglasses. The light indoors bothered him to where he requested wearing his shades in the house several times. He preferred to have his eye face down in a pillow to keep any light from hitting it upon waking up. Clearly something was up. And of course it was the weekend so our only option was to take him to CHOP through the ER (with a $400 co-pay). I didn't think it was serious enough for the ER, so we waited to be seen in clinic on Tuesday morning. After a battery of tests to rule out a variety of conditions (including retinal detachment and glaucoma), the team determined that JR was experiencing a recurrence of inflammation post-surgery. And the inflammation was causing heightened pain when his iris contracted when exposed to light. After cataract surgery you are supposed to be extremely mindful of your eye for several months. No bumping, rubbing, and, oh, try not to bend at the waist. Sure, no problem for my rambunctious pre-schooler who loves nothing more than piling up every pillow in the house and leaping into them, face-first. Bahhhh!
So, the doc prescribed two steroid drops that JR will be on for the next 6 weeks, every four hours. Then we had to return 48 hours later just to be sure the eye was improving and they could have confidence in their diagnosis. It was on this 48 hour return visit that JR very publicly protested the examination room. Can you really blame him? It takes 3-4 people to examine JR or put drops in his eyes. When JR is restrained and, in essence, being tortured by burning drops, or probes, or lights and devices in his sensitive eye, he is completely anguished. He has no idea how long it's going to last, so to him it feels like an eternity. This age is so very difficult. But, you want to know what is truly amazing? When it's over he gets a big special sticker from the nurses, and the first thing we do when we get home is eat a big spoonful of ice cream. When Daddy comes home and we talk about the day, JR says "I went to CHOP today. I got a sticker and ice cream!". And that is all he focuses on. So. Awesome. The process is hard, but when it's all said and done, he focuses on the stickers and ice cream. As always, I have a lot to learn from my boy.
So although it has been a hard week with unexpected CHOP days, we are very thankful that it does not appear to be a more serious condition than post surgery inflammation. We will be back to CHOP on Dec. 11th to be sure that the eye is healthy and make a plan to wean off the steroid drops. And then, hopefully, a break until January. January will bring JR's 20 month scans and an "EUA" (exam under anesthesia) by the ophthalmologist. I'm hopeful for a medical-free holiday season, focused on family and celebrating the birth and meaning of Christ.
In other news, I have received a job offer for what seems like the absolute perfect fit, and will officially be back in the workforce on December 1st! Shortly after we arrived and settled in Philadelphia (16 months ago), I began the hunt for a part-time position that would gratify me without overwhelming me. I primarily want to be home with my children, and continue to head the responsibilities of managing our family life, including John Ryan's medical care. I am far too enmeshed with JR's medical circumstances to ever miss an appointment. I know I'm not alone in feeling like my children are an extension of myself.
I have applied to approximately 30 positions over the past year and was granted an interview for exactly three. It is TOUGH out there, ladies and gentlemen. I share that to say that if you are job hunting or seeking your perfect role, keep at it! And pray. And keep your faith. I have prayed regularly since I began my search that God would place me in the exact right position at the exact right time. In May I had two interviews for a full-time counseling position at a private school 10 minutes from my home. I hadn't planned to go back to work full-time, but the salary and benefits, and major bonus that they had an on-site childcare facility was too good to pass up. I was extremely disappointed when I didn't get the job. But I discovered very quickly that it was, without a doubt, not the right fit. The position would have started in August. With JR's three surgeries and constant visits to CHOP in September and October, I know I'd have resigned just a few weeks in.
I have been hired as an academic counselor for students enrolled in a specialized program at Montgomery County Community College. I will be counseling students who are in recovery from mental health and/or substance abuse disorders. The students will be enrolled in a course as well as receive individual counseling to develop their educational and career paths. I will work 2 days per week (!). I think it is absolutely perfect. My mom is (very graciously) caring for the kids one day, and I have found a graduate student to care for the kids in our home on the other day. I am really excited and think it will be excellent once we get through the transitional weeks. I believe God answered my prayer and that His timing is perfect.
Well, it's taken me several days to complete this blog entry, and now we are into Thanksgiving week! I am feeling so blessed by my family and my life. Like JR, I am working on focusing on the stickers and ice cream of my life, and handing my burdens over to God. He knows just what to do with them. And I promise you, He uses pain, trials and tribulation to grow us and mold us towards who He created us to be. You are refined through the fire.
Wishing you a blessed Thanksgiving!
And Merry holiday season....