>> Thursday, April 13, 2017
Haven't done either...yet. But the chickens are being fattened-up as I type.
Bug had a bad November. I will detail that later but it ended up pretty well. Now, however it has gone to shit. Complete and utter shit.
We thought we had developed a good relationship with our team there, but life outside of Hospital has been less than helpful. So why did we lose seizure-free? No clue BUT it seems to coincide with Bug walking again. Probably a coincidence entirely, but you never can know until you have facts in hand. With a nonverbal kid, facts are the ONLY thing you will ever have and if you don't go LOOK for them, you never get what you need to help him. Nothing will guide you, no complaint or off-the-cuff remark; you have to be proactive. A fair amount of medical professionals will make you feel like you are an overbearing, paranoid Mother for that. I am his advocate, like you should be, let's work on this together...instead...Mother Reports. This is peppered in Bug's medical record. Mother reports. Pfft.
When you spend as much time as Bug did in a prone position, your muscles stop functioning properly. PT came in and we developed a stretching routine which made great progress. We stretched his legs and feet everyday and it helped quite a bit. Let me back up: in late 2015 we discussed Bug's feet turning in with his Utah Doctor and we were aligning Botox to help relax the muscles and maybe straighten him out a bit. It didn't happen. We moved and moved again and by the time we had landed in Maryland, he was in Status and at Johns Hopkins.
When we got him stable and after a stint in rehab (I LOVE typing that...makes me giggle), he went home and began walking everywhere, slowly, but damn! We had to just follow him around to make sure he was safe, we could not stop him. He did NOT want to be down. Who could blame him? Within a week he was conquering the stairs like a champ.
Also, after a week of being home, he began seizing again. Honeymoon was over and depression set in. We made several appointments and met his team outside of Hopkins and changed the plan a little and added another plan. A plan that include foot surgery.
One day, I was whining on Facebook and this question was asked:
In the back and forth it became apparent that there is a good chance Bug has a tethered cord. I decided to ask the KBG families in our private group. This group has provided insight, support and been a great help for nearly the last 2 years, they are literally rewriting what is known about KBG. I harmlessly asked this:
We met the lovely Sherry (who should be mad at me right about now) with Erin and Dr. Devinsky. Lovely man and I nearly want to edit my blog post about his stance on CBD from a few years back, but I stand by my words and, contrary to popular belief I don't always have to be right. They were fantastic and asked me how everything was for Bug and did I have any problems I wanted to discuss? I said: One of you could call Hopkins and step up getting an MRI of his lower spine. Ha, Ha. Oh? They said, do tell. So, I telled. And walked out of the room with a prescription for an MRI! What the what, right? I told Erin if I couldn't get it scheduled with Hopkins within another week...JUST SCHEDULED...I would call her back. We laughed. It's not funny anymore.
On April 5th, the first day back after NYU, I called Nuerology again and Ortho called back. I was told that Bug didn't fit the criteria because his ortho problems started while in hospital in November. Uh...nope. We discussed the reality and Doc agreed it was good idea. A good idea! He would order the MRI and get a referral to a Neurosurgeon to go over results.
By April 10th, I had not heard from anyone so I called Hopkins radiology myself. They had no record of a request for sedated MRI. Push, shove, pull, grovel and I was told Neuro would call me back.
Today, the 13th, I called yet again after watching Bug wince his way down the stairs (I made him sit down and helped him lower himself one step at a time), I was told the order from NYU was there but I need to talk to someone else since he needed sedation.
This call caused me to cry. Not anything that was said, just...
This is Bug's life, over and over and over. Ask for test, told no, then told yes, then lose results, then get results, then find he does need treatment. Delay after delay after delay. It wouldn't be so upsetting but so far those treatments help him! They were delayed for whatever reasons and yet...ultimately helped him.
Regardless, now I wait for another call while I try not to cry sitting next to my happy boy spinning a Barbie car. He is fidgeting in his seat and all I can wonder is if he is in pain. He will sit like this for few moment and then move to the floor and lay on his side for awhile. I know pain, having been intimately involved on a daily basis for over 30 years and I can tell you: Bug is in pain. And only a few people seem to care about that. The really sad part: None of the people who care, can do anything about it. So we wait, and lose more faith.