Those are the words Joey's eye surgeon told us at his follow up appointment last week. He said he was sorry that Joey had to go through 3 eye surgeries this year, but then he said that he had learned so much from Joey's case and that Joey's various eye issues have "helped other children" because he will carry those lessons with him through the rest of his career. He said that each child and each surgery he performs helps him learn and that the uniqueness of Joey's case would be especially helpful to future cases and patients.
His words meant so much to us. It was a nice way to wrap up what has been almost 40 various trips up to the Cleveland Clinic Cole Eye institute in the past year. His words reminded us that sometimes Joey's journey is much larger than just Joey or our family- it goes beyond that. It goes to the other children his doctors treat, it goes to friends and family. His little life has grown beyond just us.
It Wasn't Brown Syndrome!!!
We found out after surgery that Joey does NOT have Brown syndrome! His surgeon was so shocked because he was convinced that Joey had it that he tested Joey's right eye 5 times and each time the eye moved seamlessly. At that point, they moved on to Plan B, which was to go back into the left eye (for the 3rd time) and operate on the upper muscle and try to tighten it to stop it from wandering and pulling way up to the left and off the grid.
Joey was the first case of the day and for the first time ever he came out of anesthesia with much less hoopla and anger. He was much more relaxed and calm. Is it because this was the third time? Maybe because he is older? We weren't sure, but things seemed to be easy, breezy, peezy (as Tommy says) as we were able to head back home to Akron early in the afternoon.
WHY CAN'T HE BREATH???
Easy, breezy, peezy didn't last very long. By Friday night he was coughing and having some trouble breathing. On Saturday it was worse. On Sunday, while he was napping he was coughing, so I went in to see him and he was literally foaming at the mouth because his airway was so restricted. I picked him, frantically called Tom who had gone into work and then Joey vomited all over me and was able to breath again. For a split second I thought about calling 911-- I'm not sure why I didn't. I always have that fear that I am being the crazy mom. Do you ever feel like that? How do you know when to make that call? How do you know when to go to the ER?
|What's up, Doc? Are we good here?|
By the time his follow up appointment rolled around he had started to breath better, but had us scared to death. We have slept with all bedroom doors open and the monitor volume on since the surgery and there have been a few nights where we brought up the old pack and play and had Joey sleep in our room with us. The funny thing is how big he looks in the pack and play!
Joey kicked off this week by refusing to cooperate during PT on Monday morning- I mean just refusing. It was one of those embarrassing refusals. The kind that make you feel like a failure as a parent who cannot "control" or convince her child to comply. I will just put this out there-- therapy is AMAZING for Joey, but it is a hot, stressful sweaty mess for me. I worry about him being a good little student. I worry about him doing well. I worry about being there on time. I worry about what we have to get to next. Monday was no exception, Joey was stubborn, he was crying, he would just lie on the ground and put his head in his little hands. "Oh for goodness sake, Joe," I kept thinking to myself. "Just do it already."
As the day progressed his attitude and spirit declined instead of improving and before I knew it his temperature was 102 degrees. Ugh. Why had I been so hard on him? Why had I been so annoyed and disappointed in him during therapy? Here he wasn't feeling well and was burning up.
The fever has lasted for three days now and Super Joe just isn't quite himself.
He napped from 1pm until 6pm on Tuesday and I finally went in and woke him up. He has been lying on the ground, falling asleep, crying and has not been himself.
We went into the doctor on Tuesday and he tested negative for the Strep Test and his lungs sounded pretty good, so they sent us home with a prescription for a chest x-ray and a CBC work up.
Today we had his ENT visit because one of his tubes has fallen out. Based on the past 8-12 weeks of continual sickness, his enlarged adenoids and swollen tonsils and his reactive airway disease, his ENT has decided that in the next 2-3 weeks we need to get Joey in to have his tonsils and adenoids removed and to have his ear tubes replaced.
The key will be getting Super Joe healthy enough for this to happen.
Then, post surgery, his doctor wants him to not to do any therapy for 2 weeks following the surgery. Ugh. No PT, OT, Speech, Horseback riding or swim therapy. UGH. UGH. UGH.
Therapy brings tears out in both of us. Joey cries through his discomfort and through being pushed to new levels and past his limits. I try to hold back tears and hide them as I argue with myself and tell myself not to save him, but to let him work through it because it is good for him. As a Mama Bear and a Warrior Mama-- I want to save Joey. I want to make life easier for him, but therapy and all of his various procedures are just necessary parts of our life right now that will all help make his life easier and better in the long run.
Do I want him to miss 2 entire weeks of therapy--NO! It stresses me out to even think of it, but if it helps Joey to feel better and be able to stop being sick all of the time, then it will be worth it.
Although his various appointments and therapy can be trying and can be tough-- we are always grateful for the amazing therapists and his amazing medical care. These are the people who are always looking for the best way for Joey to learn, the best way to keep him interested, the best way to bring out the best in him. I see Joey's therapists more than I see most people and they have become friends and confidants.
How do you help your kids or your family push through the hard times? Do you ever want to save them, but know you have to let them learn? How do you cope?
Have you seen the new HBO Documentary "Miss You Can Do It"? The next blog post will be about this new documentary. Wow. It hits home in so many ways. Watching these families and their journeys and their children's journeys....all I can say is, wow.
Hope you and your family have a wonderful Fourth of July!!!