Hello everyone. I can’t believe it has almost been a month since I last posted anything. Trust me it’s not because nothing has been happening. Kendall is fine. It’s me that has been busy making appointments, canceling appointments, faxing, scanning and talking to at least 15 different people between both hospitals, consultants, therapists etc…. Thank God Damon was in the military because I write notes and phone numbers on any paper that is closest to me and then later on I’m struggling and overwhelmed trying to find it or can’t remember which notes belong to which person I’ve been talking to. So I know he’s tired of hearing me complain and be frustrated everyday so he has helped big time by organizing everything into separate files on the computer and in the file cabinet. That has taken a big load off. Most of my overwhelm comes from taking good notes and being confident I have the information, but having no clue which notebook, email, sticky note or random piece of paper I wrote it on. He’s helping me get better with that. It’s a process but I can see progress.
Kendall has turned 13 since the last time I posted. She is doing well. Has a lot of appointments coming up. She is now having zoom sessions with a therapist so that she can talk about her feelings, concerns and emotions about the transplant. We are still waiting for her home PT/OT to start but we have been given different exercises to do with her in the meantime. She has an appointment with the neurologist, pulmonary, and cardiologist this month( all in Detroit).
We are still waiting for the MRI. I have been very upset and frustrated because there has been a lack of communication between many parties and now they are telling us they are booked up until July. Since Kendall wants to be sedated during the MRI, cardiac anesthesia only assists with MRIs on Tuesdays and they don’t have any openings until then. She is on a cancelation list though so if there is an opening sooner they will call us. Whenever it happens, we will drive so we can get an estimate of how long of a drive it will be when we have to go at other times. Our transplant coordinator has had minimal contact with us for the last few months so I spoke with the manager and voiced me frustrations so we have been assigned a new coordinator that we will get acquainted with this week.
Today she had another zoom meeting with the therapist and on Friday we will have a family conference via “hospital version of zoom” so that Quentin, Sydney and my mom are included and the cardiologist, child life specialist, and psychologist will explain to them what to expect from A-Z. This will give them a better understanding of what is going on pre-transplant, post-transplant and years to go. They will also the an opportunity to ask questions.
Thank each and everyone of you for hanging in there with us.
I will be advertising/promoting the “Beautifully Scarred” t-shirts very soon. Deb Kayga gave me a great Idea that Kendall’s support team should wear her t-shirt on the day of her transplant, whenever that day comes. and I love the idea. Knowing that no one is going to be there with us, we would love to see posts and photos of everyone wearing the shirt, praying for her/us, and supporting our family.
Love to all of you
Cewanda
xoxoxoxoxoxoxoxoxoxoxoxo
#TeamKendallT
#heartwarrior
#BeKendallStrong
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