Ryder has  been on dialysis for 2 weeks now… still struggling to find some sort of a new routine as it takes time to set up the machine… plug Ryder into the machine… have to sanitize like crazy… no doors open, no windows open, no heat, no air or fans running while doing this. Machine runs for 9 hours while he sleeps… very temperamental, alarms throughout the night… check patient line… not draining properly etc… then taking apart the machine in the morning… draining the 2 large bags of fluid waste… draining the unused 3 bags of fluid, tubing etc… it’s definitely a time consuming and stressful daily process… but we are all trying to keep a positive attitude for him which is not easy to do as we can not escape each other due to COVID!!

Ryder is down to 12 pills daily but still has the 2 injections per week… not fun!!

He is however back to being his silly self… scars are healing will now be able to ride his bike, exercise and swim!! Definitely positive things to be grateful for…

there are unfortunately other health issues that have arisen… will have to start on growth hormone daily injections to make sure his bones start to grow, before they fuse, Incase puberty never kicks in… currently Kaiser is in disagreement with Stanford on that issue so we have red tape health care issues and poor Rachel is playing middle man!!… possibility of knob knees… if so he’s looking at surgery for that…

Clinic will be once a month at Stanford… labs from time to time… have to redo many of his vaccinations as they didn’t take…

soon he will go on the active transplant list… and there is also the possibility of a living donor. With his blood type they say it’s about a year wait… He has been gaining time on the list ever since dialysis started… just giving him some time with all of what he’s just gone thru to pay off…