**Just as I was ready to send this update yesterday, we got news at an appointment for Roslyn that will change the picture a bit. Rather than re-write the update, I’m just adding this note here. Some recent testing indicates that her spinal cord is most likely tethered. Looking back, Scott and I (and even the older kids) can see that there have been signs of this for a while, but we had attributed those to Roslyn’s way of reacting to the stress of Lilyan’s surgeries and long recovery. It now appears that we were wrong about this, and it will mean a pretty significant surgery as soon as we can confirm this and get it scheduled. It also means we need to schedule more testing as soon as possible, along with an appointment with our neurosurgeon. I can’t even describe how completely overwhelming this news is, just as we were feeling so excited that normal life is on the horizon. But, well . . . I guess this IS normal life. Please continue to pray for us as we lead our family through yet another time of stress, but also please read the update below and really feel, with us, the joy about all of the good news shared in this update. These probable and unexpected challenges don’t negate all of the great news we are so excited to share.**
We are very excited to share the latest about Lilyan with all of you who have walked this long journey with us.
Lilyan is doing GREAT at the moment!
We had been told by her plastic surgeon that she could not swim until her incision, closed four weeks ago, was completely scab-free. That was back on September 19, at her two-week post-op visit. Since it was already past the middle of September, we didn’t hold out any hope that she would get to swim any this summer.
But the heat just kept coming, day after day.
I was pretty grumpy about that. I am not a huge fan of summer anyway, and when it’s this long and this humid, I just really hate it. Plus I love fall, so I just wanted summer to die and fall to come rolling right on in.
But the heat still continued to just keep coming back.
So a couple of Sundays ago, we realized that, as shocking as it was, we could plan one last Sunday afternoon of swimming. And we also decided Lilyan seemed to be healing well enough that we could risk a special reunion day with our sweet grandchildren here in town — as long as none of them got sick before that gathering. And they didn’t.
Sunday afternoon, September 22, was such a great day! We all swam, ate pizza and ice cream cones by the pool, and spent the whole afternoon together again. After six months apart, it was so very special — even though Lilyan still couldn’t swim.
And still the heat persisted! (And I remained pretty grumpy.)
So we decided to plan another “one last Sunday afternoon of swimming.” Most of Lilyan’s scabs had disappeared, so I began to pray really hard that the rest would be gone by Sunday, September 29, when we would definitely be swimming for the last time.
God said no to that prayer. I was disappointed, but really did try to trust the things that I know are true about Him. He is all-loving and all-wise. Lilyan seemed pretty sad that day, but as always, she tried hard to play happily with water toys beside the pool.
Two days later, on October 2, Lilyan was scheduled to see her spine surgeon and have an x-ray done. It was our hope that he would finally tell us that her spinal fusion had healed sufficiently to allow her to start using her upper body again. Everything about that day was good!
Just as we were putting her in the van that afternoon to head to her appointment, the last of her scabs vanished! And the x-ray was beautiful! Her surgeon said she looks great and that she can now go back to all of her pre-surgery activities!
He told us bluntly that he is still holding his breath (he has told us a number of times that this won’t change until about two-years post-op), but he told us that he wants us to stop holding our breath now. He said that he will carry that concern for us for now so that we can begin getting back to living life.
Scott and I managed a quick whispered conversation as we headed to the lab to get Lilyan’s blood drawn for this week’s check-in on her numbers, and we decided that we were going to surprise all of the kids with an after-dinner swim. Another “one last swim.”
The pictures and video included with all of the other pictures and videos below will give you an idea of just how that evening was filled, even overflowing, with so much joy! I felt so ridiculously happy as we drove home. I think that in some deep place I wasn’t aware of, I didn’t believe that this day would ever come. I guess I knew it would, but somehow was so giddily shocked by it when it did. I’m not sure that even makes sense, but it was such a great feeling.
Oh, and I felt pretty humbled by all my grumbling about the extended heat, which turned out to be such a precious gift for our girl. We all swam until dark and the moon was in the sky, which all the kids thought was pretty cool.
So we are now firmly on the path back to normal life!
There is also a video below, showing Lilyan’s first attempt at crawling. She is so very weak and has lost so much muscle tone, but she is such a strong and brave little girl, and she is so ready to get back to life. I know she will regain that lost tone very quickly.
The numbers in her blood work did spike a bit this week, which was a little bit of a disappointment, but it wasn’t enough to be very concerned about yet. We will continue watching these numbers, and if they still look good in a couple of weeks, we will be back into real life again!
Church! TSC’s Benefit Concert on October 19! Long over-due grandkid birthday outings! DATE DAYS! Everyone to the movie theater to finally cash in the movie tickets they all got in their Christmas stockings last year!
We only have a few weeks to cram all of this fun stuff in, though, because my foot surgery is scheduled for November 15. I’m not looking forward to it because of the pain and the stay-off-my-feet-for-six-weeks requirement, but I am also really ready to get this behind me and to have two good feet under me again. Steroid shots have kept me on my feet, in spite of the fact that the condition continues to worsen. I hate those shots so much, but I’m certainly thankful that they are an option while I wait for this surgery.
Okay, this has already gotten longer than I wanted it to be, so I will close and just share a ton of pictures and a special video of all the happy catch-up things that have taken place here over the past couple of weeks.
This is a video of Lilyan trying to crawl the evening after her spine surgeon gave her the green light. It was her first time in over 6 months to use her upper body. She has clearly lost a lot of strength, but we believe that, with her motivation and perseverance, she will regain this quickly. She is pretty inspirational.