Weird title, I know. I wanted to update everyone on life here. Specifically, there are some things concerning my health that I’ll share. But I’ll also update about Kathryn and Lilyan, and there’s sad news about two of our dogs.
Many of you may remember that I ended up being taken by ambulance to a local ER during the winter, and then a few hours later, into the OR to have my gall bladder removed. During that ER visit, imaging also revealed a large mass that was unrelated to my gall bladder. Unfortunately, the arrival of COVID-19 to our area interrupted plans to follow up on this mass, and no one would agree to see me or do further testing. I have, only in the last few weeks, been able to get back to addressing this.
Further testing confirmed that this mass is, indeed, large. It’s too big to be removed in any way except a full abdominal incision, and that surgery is scheduled for August 20. The entire uterus is involved, but the size of the mass obstructed the view of other organs in the area, so some details will remain unknown until I am in surgery. There is some concern that the bladder might also be involved, so a urologist will be on standby, just in case any repair is needed. The good news is that my doctor really believes the mass is benign, but anything that is removed will be sent to pathology for confirmation of that.
I’ve been told to expect the recovery to be anywhere from six to twelve weeks, depending on exactly how extensive the surgery ends up being. Four weeks into that recovery, on September 18, I will go back into surgery to have my foot operated on again. The bones never fused as they were supposed to have done after my foot surgery last November, and that whole repair was a failure. I have been in a decent amount of pain since then, but really good shoes have made it possible for me to keep mostly functioning normally. That’s getting harder as time passes. After the foot surgery, I’ll just complete recoveries for both surgeries simultaneously.
As I am preparing for these surgeries, I’ve been trying to figure out what kind of help I need for my family. So many of you have made it clear that you want us to ask for help, and we appreciate that so much.
We have decided that, if we could get five meals during my first week after surgery, that would get us to a place where we could come up with a temporary new normal. We might need a few more meals after my foot surgery in September, but we can let everyone know as that gets closer. So we are looking for meals for Aug. 20, 22, 23, 24, and 25. The 21st is already taken care of. Restaurant gift cards are completely great, especially during the pandemic. Meals prepared and delivered to our home would need to be done in a no-contact way because we have to be so careful with several of our kids who are considered high-risk during the pandemic. If anyone is interested in helping, please just let me know.
Lilyan is now 16 months out from her near-fatal surgery last March, and she finally, finally got the all-clear to come off our her last antibiotic a couple of weeks ago. She is healthy in almost all ways, and her blood work continues to look excellent now. However, she has continued struggling with fractures in her legs, and X-rays show that there have been many, many fractures through the years, even well before she ever came home to us. Testing with endocrinology has confirmed that she has severely osteoporotic bones, but only in her lower extremities. Her upper body looks normal, which was great news. In the next month or two, she will begin treatment in the form of bisphosphonate infusions every six months. The first treatment will require an overnight stay in the hospital just to see how she does. These treatments can cause flu-like symptoms in some children, and they need to see how her body is going to respond as we move forward.
But I want to share this incredible video of her learning to swim this summer. Because of the shape of her trunk before her big surgery last year, this was impossible for her back then. All that she has been through over the past sixteen months, though, has made it possible for her to finally realize this dream of learning to swim! She is thrilled. No function from about the chest down, and still . . . just look at her go! Such a beautiful fighter our girl is!
Kathryn finally had her VNS device implanted as we continue trying to bring her seizures under control. Testing confirmed that, at the worse point, she was having, every hour, up to 6 significant seizures with many smaller ones between those. She is definitely more stable now and has regained many of the skills she lost, but she’s still not where we all hope she will be once she adjusts to this new device, and once it’s gradually increased to its maximum settings for her. We’ve been told that we probably won’t see its full impact until about six months after the placement, but we’re so thankful for the improvement we are seeing, so far. We’ll keep you posted on that.
We were so sad to learn a week or so ago that two of our dogs are probably nearing the ends of their lives.
Godfrey, our older schnauzer, who is somewhere between 13 and 15 years of age, is completely deaf now, has been fighting with a very serious UTI for weeks, and is exhibiting what appear to be possible signs of dementia. We’re hoping we can get this infection under control soon with the new antibiotic he is taking, but he is definitely sleeping much more, not eating normally, and declining pretty quickly.
Saxon, our golden retriever, who will be 12 years old in just a few months, is now suffering from significant neurological degradation in all four legs, but especially in his front legs. He falls multiple times a day, but doesn’t appear to be in any real pain, so we are just watching him closely and letting him guide us through this final season of his life. It helps that we have an elevator in our house, and we are teaching him to use that for getting from level to level instead of trying to climb up and down the stairs. He has had multiple falls down the stairs, and we’re trying prevent any injuries.
Pets are such a critical part of our lives, and we love them deeply. Our dogs have always been key pieces in our children’s emotional healing as each child came home to us one by one, from backgrounds of trauma. Saxon and Godfrey are especially good at this job of healing the hearts of broken babies, and the thought of losing them soon has left everyone sad. We are all pouring as much love and snuggle time into their lives as we can, and taking things one day at a time.
There are many more things going on in our lives every day, but I won’t try to cram all of those details into this update. Thank you, as always, for your prayers and your love for our family.