I am wildly behind on updating here…this is because when I write the words they are all true and until then I can play tricks on my mind (not really, just pretending)… so here are some highlights for you.
1. Q got a catheter (for temp dialysis) and a fistula (for long-term dialysis) a couple of weeks ago. is beginning dialysis next week at a clinic 3 times a week. She’s approved (basically) for a liver/kidney deceased donor transplant and they are just waiting on one piece of paper I will send tonight.
2. G had his final test today that Emory needed for him to have an official evaluation for a kidney transplant with (another) living donor and so I am hopeful that appointment will be soon. (O blood type)
3. J and I got away for the weekend and it was glorious. I hope to do it again someday.
4. Q and I were on the way to a Very Important Appointment (vascular surgeon) and we were rear-ended by a stand-up young man with great insurance and there is A LOT of damage to my well-loved and paid for (and old) Subaru.
5. Working on applications for programs to help with the shots that both kids need.
6. Still grateful, every single day, for the selfless acts of our first kidney donors Jody and Cheryl. We love you and your kidneys. These two pictures are from this weekend when we were able to take a boat ride. I note that the picture on the left is about how things are right now… wild, all over the place, and nothing is seemingly in control. On the right, is how we’re coping. We’re keeping it all together over here no matter what blows our way. We’ve got this, right? One organ at a time.
And… a week later, I bought a car on my American Express card. Because a) used 2) ya gotta move fast right now with purchasing used cars and 3) ya gotta move quickly if you’re in this family. Am I right? You know I am. Right now Q is being super brave having her first dialysis treatment. We are grateful for this option. DaVita Dialysis didn’t let me back with Q and so that wasn’t great. But she needed dialysis so we were at the mercy of their policies which we pointed out was taking rank over the LAW. We brought everything that spelled out the law. Didn’t matter. Was upsetting, but like most things in her life, Q chose to move forward. The clinic pointed out we had a “choice” to leave and do what, I wondered? “You can go to a hospital.
”Ummmm?
No. That’s not the solution. Since we are partial to her feeling better and to keep her alive, we stayed, obviously. We will regroup. Q is being made to transition into adult care at warp speed without the benefit of time, thoughtfulness and patience of the healthcare community around her. She will flourish because she’s Q, but not being able to do it at a reasonable pace is just sad. I leave you with a picture of our sweet Bo, now eight, but still energetic like a baby Bo. He’s napping here. Kinda like how fighting for disability rights makes you feel. We are spent. Looking forward to sleep. One organ at a time.
For light reading, here is an early February release from the Department of Health & Human Services that explains it all… but to break it down, no matter what crisis is going on throughout the country, the rights of people with disabilities still matter.
