December 1, 2025
Thanks to a generous donation from the UUA Living Tradition Fund, combined with earlier funds received here and directly, we should be good to go for the mold remediation this week!! I'm lowering the goal, but still campaiging, because our first floor laundry project will still be out there, which will make Peter and me both able to aviod trecherous basement stairs and a continually damp basement.
March 22, 2025
Goals met -- for now. Thanks to several generous family and friends who donated directly to us, we've met our fundraising goals at this time. Thank you to everyone for your generosity! We may need to reopen this in the future when we get a good accounting of what the expenses have been, and certainly will when/if Peter gets on a transplant list, but we're feeling well cared-for at the moment.
March 16, 2025
Today is the third full day at home, and the first one without a visiting nurse or visiting physical therapist or occupational therapist, so the first one where we can relax a little, but it also means I (Cindy) have to do all the dressing changes and shots, so the relaxing hasn't actually begun yet. Thursday night, with help, we got the first Litter Robot installed. So far I'm only sure 1 of 3 cats is using it, and definitely sure our largest cat hasn't yet. The middle cat is close enough in weight to the youngest and sly enough in movement that I can't be sure about him. But having one less cat to scoop after is still helping my sore back! All the robots so far (Litter Robot & Roomba) come with apps that ask you to name the robot. Because of people with VADs being called VADers, I'm giving everything Star Wars names. The Litter Robot is "Ewok Box" and the Roomba is "Darth Roomba." If you have better suggestions, let me know! I'm thinking of renaming them both to robots -- like Roomba2D2 and BoxB8 or BB3 (for 3 cats). Yesterday we also had house cleaners come for the second time. My day of "relaxing" is actually going to probably be a day of figuring out where everything is now that it's cleaned up. Took me an hour last night to find what I needed to find before going to bed! Most of it was in our daughter's room in four big empty bins I had put in there for her to use in getting rid of stuff she no longer wants. (She comes home for spring break Thursday.) The cats, other than the youngest, are terrorized by visitors, so have been in hiding for most of the time Peter's been home except the evenings, when we're finally alone. I'm recognizing this is also slowing adjustment to the Ewok Box!During the last month, I've gotten used to living alone for the first time, and doing the providing & care for myself and the cats -- keeping us clean & fed. Now we add Peter to the mix. He's doing more and more for himself -- dressing, getting small things from the kitchen -- but I'm still doing a lot between meals and medicine and rearranging and moving things to make it convenient for his care. He came home so quickly that I wasn't completely done with what I wanted to accomplish, and while I am now about 80% there, it's slower going with taking care of the five of us (cats included). I take the breaks between meds and meals to do updates like this, or get some of those other little jobs done. I'm behind on a lot of the other tasks of life, but sometimes that's just life! Peter's doing amazingly well -- they said he'd be in the ICU a week to a week and a half minimum, and he was there exactly a week. They said he'd be in the hospital after surgery 2-4 weeks and then maybe rehab, and he left under the minimum at 13 days! But that doesn't mean there aren't set-backs and struggles. he's having trouble with his digestive system because of all the meds they put him on, and his blood is too think requiring extra meds including injections that also mean more visiting nurse appointments to check the blood. One or the other has come now with the unusual restriction: NO green vegetables!! I've realized that coming home on the earlier side also means you come home more tired and less prepared in a lot of ways -- he's still learning how to handle everything himself from his equipment and meds to what he can and can't do with his restrictions.
March 15, 2025
GeneticsThis is a longer update, so I thought I'd use this format to share it.When Peter was a child, his mother was told that his limb difference was not genetically based. We confirmed this again with her before we decided to have a child. So all this time, he's assumed it was something that happened in gestation.The heart team at Mass General, however, wondered about this more, and if it could be any genetic differences that impact the heart. So they called in, with Peter's agreement, a geneticist to meet with him, and so Dr. Lin met with him earlier this week.Genetics has come a long way since Peter was born over half a century ago. Before seeing him, Dr. Lin wondered if it was one specific genetic difference that does link limb difference and heart conditions, but upon a thorough look at him, it is not that. However, she thinks he has a different genetic difference that is not connected to his heart -- "SALL4-Related Disorders." Ironically, this was first published about the year our daughter was born, after conception but before birth."SALL-4 Related Disorders" is characterized by (radial ray) limb difference in both limbs (one of the things that makes it unlikely this happened in gestation), and often linked with two other things: a horseshoe kidney (which Peter has) and an eye thing, "Duane anomaly" which Peter does not seem to have, but might have a mild case of so we've got opthamology homework to have done. The Duane anomaly mostly means if you're looking right or left, one eye does not go as far toward the corner. For more, read here: https://www.ncbi.nlm.nih.gov/books/NBK1373/Apparently while the other two things are sometimes there and sometimes not, it always has the limb difference and it's not recessive, meaning that while any child of ours had a 50/50 chance of inheriting it, since our daughter does not have the limb difference, she did not inherit it. But since this is still being understood, they may be interested in genetically testing her at some point, if she's interested.Dr. Lin is having her team check our insurances, but wants to do a full genetic work-up on Peter to confirm the SALL-4 diagnosis. So this will take a while to unfold. I should add Dr. Lin is very gental and pastoral, and called us back another time to just make sure she wasn't too pushy about getting consent for all this.Meanwhile, we don't think this makes any difference to why he has the heart condition he does or what his likelihood of being eligible for transplant will be. And truthfully the SALL-4 diagnosis won't make much difference in life over all, so this is mostly about adding to science.
March 7, 2025
There's a couple little spots they saw during the surgery that they're now investigating. I thought they had to do with the defibrilator originally, but now it seems that it's about the aortic valve, which they've learned is not opening and shutting properly and which has a small hematoma. The good news is "no vegetation." (I had to look that one up.) So all this means more monitoring and maybe more meds. But the good news is Peter's recover from surgery is going well, overall. He's just obviously got a top-notch team working with him!
March 6, 2025
Great news today that we're getting a $1000 grant from the Heart Brothers Foundation! They're an excellent organization that helps support heart patients in many different ways. We're so grateful for their support! So I've decreased our goal amount accordingly, although it may go up again if and when Peter becomes transplant-eligible.
