Friday, March 20, 2015

Testing, Testing…123

Yesterday was Thursday. Thursdays are when myelo clinic is held at Akron Children's. We took the boys to meet with a team of doctors to make sure that what is still functioning in their bodies is doing so properly. 
The morning started out at 8am with a trip to radiology for CT scans and renal ultrasounds. Of course, we were running late and then Amos got off one road early so we waited in a line of what was most certainly hospital staff exiting to their nearest designated parking area. Amos was annoyed with me for being annoyed with him. Then I reminded him that he would definitely be annoyed with me if the tables were turned. He agreed and then we called a truce. I called radiology to tell them we'd be late. They politely told me they'd let the team know. I know they were probably rolling their eyes. I would too. Everybody seems to have a really good excuse and we're no different. Nevermind the fact that I woke up at 2:30am with Gabriel next to my bed, begging for a drink of water, at which point I discovered that Amos wasn't in bed. He was out delivering a dumpster really late so we didn't fall behind the next day. I noticed a missed call from him, but I had long fallen asleep. I of course assumed that he was dead somewhere, so I called his phone immediately and heard it ringing downstairs. Whew! At least he made it home alive. 
He also couldn't sleep, because he decided to drink a Mountain Dew, so he watched a movie. I freaked out at him for scaring me and he came up to bed… but didn't set the alarm clock.
Fast forward to a little after 7am. (We should have been up at 6:30 getting ourselves and the boys ready.) We scrambled to prepare. Our friend Diana was there, at our door, at 0700 hours, to get the kids on the bus for us and we were still in bed. Ridiculous, but not a complete surprise.
Finally, we managed to get out the door fifteen minutes before our appointment, but still have a 30-40 minute drive depending on traffic.
Amos dropped us off at the revolving door and Jonah and I made a mad dash to radiology. They got us right in. As I filled out forms, the intake person sitting in front of me was fielding calls from all sorts of late parents like us. At one point, the phone rang and she said "I'm not answering that" just loud enough for her co-workers (and me) to hear. I couldn't blame her.
While Amos parked, I filled out Gabriel's forms as well. Just as the boys walked in, it was time for Jonah to head back for his CT scan. Gabriel calls it the "donut machine" but not in a good way. Jonah and I made our way through the maze of hallways and entered the room of the donut machine. Jonah also disliked the looks of it and started wailing immediately. I laid him on the table and we velcroed his arms down with two layers of thick velcro straps. He screamed louder. I was supposed to hold his chin while simultaneously cheering him up. I held up his chin, but he hated me for it. I'm sure he would've slapped me if his arms were free.
Finally, our little torture session ended and we were free to wait in the small waiting room outside the ultrasound rooms. Amos came back with Gabriel. Both boys were slated to have their renal ultrasounds simultaneously, so I called dibs on Gabriel. I'm sure glad I did especially because I could hear Jonah screaming in the next room. 
Gabriel started questioning the ultrasound tech immediately. "What are you doing? What's your name? Where do you live? Do you like your family? Who's your family?" Then he went on to talking about guns and four wheelers. We learned a lot about Emily. We'll call her that, because I can't even remember her name, but I know that she saw a coyote recently and her fincee isn't a hunter, but her mom's boyfriend, Billy, is a hunter. And so on…
Finally, we made it up to clinic. Gabriel asked every single doctor if it was time to go home yet because he wanted to go to "Canera" which is Panera, for broccoli cheese soup.
Jonah wheeled his way back to the room in his zip zac. He had a following of women swooning over him that would've made the Beetles jealous. People poked their heads out of rooms as he passed. I think he knew it too, because he did a couple 360's which is always a crowd pleaser. He chased one nurse trying to hit her toes. He doesn't know that they don't know that that is a game played at home and was only discovered by accident because it really does hurt when he runs over your toes. I explained the game, but the nurse still ran the other way. By the time she stopped, he didn't want to run over her toes. He probably looked at those big medical clogs and thought "forget it."
Nurse Shannon got us back to our room and Gabriel sat on the table asking tons of questions. Then he said he wanted to give me a kiss. I leaned in and he licked my cheek. I love it when the kids decide to do weird stuff in public so that we look like total psycho's at home. I reminded him once again not to lick my face like a dog, because it's gross. It was too late, Amos and I were pegged as french kissing maniacs at home. Se la vie. Not even gonna explain that Gabriel is obsessed with nature shows and also just watched way too many dog movies this past weekend.
Dr. Hull came in to see the boys. Dr. Hull is the rare doctor that is so intelligent but actually takes parent concerns to heart and answers in the most honest and humble way. He's a great doctor. 
Then we saw Dr. Jones, the orthotist, and we also love him. He engages with the kids and is just all around pretty cool.
While Gabriel was waiting for Jonah to be evaluated, nurse Shannon raced Gabriel up and down the hallways. She's amazing. She got three rug burns and then showed up with toys and snacks. 
Gabriel hadn't gagged or vomited in days and things were looking up. Then, he downed three juice boxes and right at the time that neurosurgery came for evaluation, he started vomiting everywhere. Every.Where. About seven or eight times to be exact. We were trying to discuss the possibilities of what was happening as we busily mopped up piles of regurgitated juice and crackers. It felt like a scene from "I Love Lucy." So, now Gabriel has to have a shunt function study and possibly an MRI and we're dreading it. 
The boys were supposed to stick around for hip X-rays. We walked all the way to the cafeteria and it was packed. The boys were crying, whining and just completely miserable. At that moment, we looked at each other and decided it wasn't worth it, so we turned around and headed to the parking garage. Some other day we will deal with hip X-rays, just not today, we thought, not one more minute here.
We sat in the car and returned all the customer  phone calls we missed while at our appointment. When we got home, I filled in all the appointments in the schedule. Amos sat next to me in the office chair and fell into a deep sleep. 
Something inside of me was just so unsettled. I decided that it was Dr. X. That's what I'll call him. He was the one doc in particular that asked about Gabriel's PT that he was receiving. We told him about conductive education and he was already aware of it and then took a the time to basically tell us that he didn't endorse conductive education. Conductive education is like a regular emphasis on education while also incorporating an intense approach to physical learning. I was once the greatest opponent of conductive ed. Now, I'm trying to bring it to our locale. Since he started, Gabriel went from constantly sitting and crawling, to standing constantly. I don't think it's a fluke that he has gained sensation when he passes gas or has to void. It's not consistent, but prior to conductive ed, it was non existent. So, when Doctor X called conductive ed a "social movement" which at that point, I wanted to let him have it, but he wouldn't stop talking long enough for me to ask who died and made him king. He just yammered on about how it wasn't studied scientifically or proven, blah, blah, blah…
Well, my son is living proof and I don't really give a crap what the opinion of science is. Even Gabriel's public school teachers commented on the strength he's gained, that he stands straighter and is constantly standing at school. I really can't stand when doctor's just have to give you their half-a-million-dollar-opinion just because they can. From our standpoint, we see our little boy moving his toes in ways he never has, strength he didn't have a few months ago, and even learning to use canes. So put that in your pipe and smoke it all you nay-sayers. This is more than a "social movement." Good grief.
That being said, I am holding a meeting tonight in Seville, OH for conductive education, and if you or someone you know has a child age 3-5 with cerebral palsy or spina bifida who would like to learn to thrive in spite of their physical limitations, contact me on FaceBook or leave me your email address in the comments section.


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