JR's admiration of Superheroes is growing --with Superman and Batman the current frontrunners. Brandon made JR a "very awesome" Batman patch for a Superhero birthday party. Looking good Buggie!
Char doing her best to help Spring is here and the sun is shining brighter and staying up later. And for the first time in my memory, the position of the sun, and which shades need to be adjusted in the house is not a daily concern. There is no more screaming in the car because the sun is too bright. And I'm not even sure where JR's sunglasses are, since he hasn't worn them in weeks. There is no more head tilt. No more burrowing into the couch or the shoulder of the one reading with him to protect or relax a painful and exhausted eye. JR no longer has to find the shady space on the carpet in his classroom, or eat his lunch at the small table in the back corner of the room, where the sunlight doesn't hit. Best of all, he can run and climb and play outside without the constant preoccupation of protecting his eye from light. While sun protection is important, he is no longer "in disguise" when going outdoors, even on the sunniest of days! All pain has been alleviated, and John Ryan has a sense of freedom and confidence about him that was lacking prior to his surgery.
Seeing our child blossom into the boy that he is without pain makes our hearts skip a beat every now and then. As you know, the decision to enucleate JR's eye was one of the harder decisions Brandon and I have had to make. As the surgery date approached we battled with cold feet and loads of anxiety. We expected the surgery day to be emotionally difficult--and boy was it-- but we were unprepared for how hard it would be on JR physically.
JR's PTSD is triggered in all medical settings, so going to CHOP is never easy. Until JR had his "happy juice" (anti-anxiety meds), he was very stressed and in fight or flight mode any time someone came near him. For us, the moment JR fell asleep and Brandon laid him on the table in the OR was impossibly difficult. We had to walk away, knowing our brave boy was going under surgery (again), and when we next saw him his eye would be gone for good. Not easy. Many tears were shed all around, but we had to trust our hearts and the decision we made with JR's medical team.
When we finally got back to our baby, he was sleeping soundly. The next 12 hours were unexpectedly frightening. We are accustomed to our resilient little guy bouncing back a few hours after waking up from anesthesia. Typically we celebrate with a Happy Meal and ice cream on the way home from the hospital. Previous surgeries have also led to quick, same-day recoveries. But this was different. JR took hours to wake up post-op, and when he finally did he was fearful and miserable, screaming that he couldn't see (at first he wouldn't open his healthy eye), wanted the bandage off --and every other monitor, IV etc. But the scariest part was his lethargy and constant vomiting. For the rest of the evening and night he slept, only waking briefly to vomit every hour or so. We were extremely concerned, and on the phone with his doctors every few hours. Thankfully JR slept well through the night (though I barely slept at all, checking him for signs of life every 30 minutes), and he was greatly improved by morning. To our relief, JR improved steadily over the next 48 hours and by day three or four, we had our boy back.
The past six weeks have been remarkable. All who know JR have witnessed the change in him. This part of him that has always been on guard has lifted, and he is living his life without having to protect himself from pain. We are so thankful that we made the decision that we did, and no longer have any doubt that this was absolutely the best choice for our child. He is FREE!
Seeing our child blossom into the boy that he is without pain makes our hearts skip a beat every now and then. As you know, the decision to enucleate JR's eye was one of the harder decisions Brandon and I have had to make. As the surgery date approached we battled with cold feet and loads of anxiety. We expected the surgery day to be emotionally difficult--and boy was it-- but we were unprepared for how hard it would be on JR physically.
JR's PTSD is triggered in all medical settings, so going to CHOP is never easy. Until JR had his "happy juice" (anti-anxiety meds), he was very stressed and in fight or flight mode any time someone came near him. For us, the moment JR fell asleep and Brandon laid him on the table in the OR was impossibly difficult. We had to walk away, knowing our brave boy was going under surgery (again), and when we next saw him his eye would be gone for good. Not easy. Many tears were shed all around, but we had to trust our hearts and the decision we made with JR's medical team.
When we finally got back to our baby, he was sleeping soundly. The next 12 hours were unexpectedly frightening. We are accustomed to our resilient little guy bouncing back a few hours after waking up from anesthesia. Typically we celebrate with a Happy Meal and ice cream on the way home from the hospital. Previous surgeries have also led to quick, same-day recoveries. But this was different. JR took hours to wake up post-op, and when he finally did he was fearful and miserable, screaming that he couldn't see (at first he wouldn't open his healthy eye), wanted the bandage off --and every other monitor, IV etc. But the scariest part was his lethargy and constant vomiting. For the rest of the evening and night he slept, only waking briefly to vomit every hour or so. We were extremely concerned, and on the phone with his doctors every few hours. Thankfully JR slept well through the night (though I barely slept at all, checking him for signs of life every 30 minutes), and he was greatly improved by morning. To our relief, JR improved steadily over the next 48 hours and by day three or four, we had our boy back.
The past six weeks have been remarkable. All who know JR have witnessed the change in him. This part of him that has always been on guard has lifted, and he is living his life without having to protect himself from pain. We are so thankful that we made the decision that we did, and no longer have any doubt that this was absolutely the best choice for our child. He is FREE!
JR and his "Elli" elephant, sent to JR by Kinder-Augen-Krebs-Stiftung, a non-profit in Germany. http://www.kinderaugenkrebsstiftung.de/en/homepage/elli/ April 24th is JR's prosthetic eye day. This phase without an eye has been mildly challenging. JR wanted to see his reflection almost immediately after having his bandage removed (one week post surgery). I was concerned that he would be upset and frightened by his appearance, but he took it amazingly well. We talk constantly about his eye and the process he is going through. The language we use is that his former eye was sick (from the cancer he had as a baby), and his eye was hurting him. He had surgery to prepare him for his new eye. Right now his eye is healing, and we call it his "healing eye", and now we are talking more and more about his "special eye", coming soon! He asks about where his old eye is (we say they doctors keep it at the hospital to study it and learn more about taking care of eyes). So we know he understands that his eye was removed, but he doesn't seem emotionally disturbed by this fact. When he saw his face for the first time, he asked why his eye was red, and we talked about the healing process, comparing it to the redness of a scrape. For now, JR wears a patch over the eye when he goes to school or is around other young children. He hates to wear the patch because he doesn't like the attention it draws. We help him practice saying "I wear this patch because my eye is healing." Already, at age 4, he is keenly aware that the patch makes him appear "different", and he is uncomfortable standing out. We are looking forward to JR having two eyes again!
The process of prosthetic eye making, to our surprise, will take place in one (long) day. JR and I will arrive at the ocularist's office at 9am on 4/24, and can expect to be there until 5pm. I expect aspects of the process to be difficult, and I'm most nervous about the making of the prosthetic mold. (This site outlines the steps involved in creating a prosthetic eye: http://carolinaeyeprosthetics.com/making-a-prosthetic-eye/). The ocularist will pour a substance into JR's eye socket to create the proper impression. Considering JR's anxiety over any type of medical touch, I don't anticipate this going well. We are talking to him about it in effort to prepare him -it will not hurt, but apparently it feels cold and "funny". We will have long breaks during the day while the mold sets, and eventually while it's painted. So we will go out to lunch and pack some fun surprises for the day. What I'm very excited about is the fact that we will go home with JR's eye! We will learn and practice cleaning it and taking it in and out quite a bit in the early weeks, until we are all used to it. I'm not sure what the care of the prosthetic entails going forward, but I do know it will be like nothing compared to the uphill battle of keeping his sick eye "healthy". So all in all, we are excited for this final phase!
In other medical updates, JR will have his 3-year remission scans on May 22nd (feels too soon!). Once that is behind us, we can -prayerfully- CELEBRATE, and look forward to (hopefully) 6 months with minimal appointments until the next MRI.
In closing, I want to send a big thanks to all for the outpouring of support during JR's surgery. The meals, gifts for JR, gifts to our family, and constant love and prayers went a long way in making us feel loved and supported through a very emotional and difficult chapter. We have been loved so well throughout all of JR's journey, and it has been one of our greatest blessings. The love, compassion and generosity I have experienced over these past 3 years has developed my own capacity for loving others well. It's been nothing short of amazing.
With Easter Sunday tomorrow, my heart is filled with gratitude for my family and the people God has placed in my life to walk alongside me through this crazy journey. And for God's assurance that He is in control of every detail, and He will work all things together for good when you trust Him.
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