Benjamin recovered wonderfully from his surgeries. He has been healthy, happy, and turning into a true toddler. He likes to shake his head no, and he throws down any toy you give him so you will have to pick it back up. (All with a big smile on his face) He is consistently swallowing with facilitation now, but it is still not strong enough to clear all the secretions. He is continuing to improve, and it was definitely the right choice to have his tonsils removed. (Sigh of relief)
I continue with the same minor battles with insurance, vendors, and pharmacies, but overall, things have been great. I have considered getting Benjamin his own phone, and I have realized that if companies will do what they are supposed to do, then our job as parents would be so much easier. One battle at a time. 🙂
Lennon and Isla have been pretty amazing too. I woke up last week to the sound of the suction machine, just to run in the room to find Isla suctioning Benjamin’s “sneezes.” Lennon frequently does Benjamin’s arm and leg exercises. They make sure to include him in their play, and even set up a third tent with a bed for a sleepover in the living room. I have been blessed with the most amazing kiddos. 🙂
Next week is Bridgette’s last week (nurse M-F). She will be impossible to replace, and I am very sad to see her go. I really don’t think Benjamin would be doing as well as he is if it wasn’t for Bridgette. We haven’t had any luck finding new nurses. We had another nurse stop by for a day, but she made it pretty clear she wasn’t returning. Really?! Oh and she nonchalantly made a comment about “if someone does on my watch, then it was their time to go.” Seriously?! I swear, sometimes I feel like we are in a reality show, but no one jumped out with a camera crew.
Wednesday May 1st, Benjamin, nurse Bridgette, and I attended the Disability Rights Rally in Baton Rouge at the state capital. We drove to Baton Rouge in the rain and drove home in the rain, but the heavens held an umbrella over the hundreds of yellow t-shirts that day. And thank goodness, because, Bridgette and I had to carry Benjamin and his chair up the steps of the capital (the middle levels are not accessible to wheelchairs), and I didn’t want to repeat this rushed and in the rain. It was a risk worth taking.
This was an amazing experience. It was definitely hard to hold back the tears as I listened to the inspirational young adults living with disabilities. They were truly “living.” Our local LACAN asked if I would approach a representative. (Not our local representative) This is definitely out of my comfort zone, but after seeing how these young adults were able to step out of their comfort zones, I took a deep breath and agreed.
To approach a representative, you write a note, send it by a messenger, and the representative decides whether or not they come to talk. So, you stand at the door, wait to approach someone that you don’t know, not sure of what they look like (thank goodness for Google Images), and pray you say the right thing. Thankfully, I stood next to a mom with many years of experience and a bit of an aggressive bone in her body. 🙂
After twenty minutes of waiting, our window of visiting with representatives was starting to close. I happened to spot who I thought I was looking for, and anxiously waited for him to come out. Waiting… waiting… well he didn’t come out so the mom next to me walked right onto the floor, spotted him, and scooted me on in to approach him. We wheeled Benjamin on up, introduced them, and quickly discussed the need for more wavers for our kiddos. Who knows if we were able to make a difference, but all we can do is try. If Benjamin’s sweet face can’t persuade you, then nothing will. 🙂