Written Monday, May 13, 2019:

I’m so sorry it’s been so long since we updated everyone. Lilyan continues to fight, and not much has changed. But we have been forced to add addressing our other kids’ medical needs back into the mix now. We knew we couldn’t leave them hanging forever, and we have fallen pretty far behind with some of their routine follow-up visits with specialists. We have also had a few new issues arise for a couple of them, and we are trying to take care of getting to the bottom of those things. This has made it much harder to find time to get updates written (or to do much of anything else, either).

No matter how hard I try, I have not managed to get back on top of regular meal prep and other aspects of normal life, and each time I think I have a day to try a little harder at this, Lilyan will experience some kind of set-back that requires us to scrap our plans for the day and move back into survival mode. And we’re reminded, once again, that life is very much not normal right now.

Each time this happens, I find myself wrestling with feelings of defeat. I have had to accept the fact that I need to set much smaller goals for myself and the family each day, and we have tried to all settle more into a mindset of very long-term uncertainty. This is a season, just like many of the seasons that comprise our lives. Some seasons are good; some are bad. Many are hard; some are harder than others. We’ve had hard seasons before, and even though I don’t think this is necessarily the hardest we’ve ever been through, it feels really, really hard. I think some of that is due to the feeling that there is no end in sight and still so many answered questions.

Lilyan’s most recent surgery was on Thursday of last week (May 9). Both her plastic surgeon and her orthopedic surgeon were in the OR this time. They both talked to us afterward and felt encouraged with the healing they see taking place. They stressed, again, that we still have a long way to go (our next four surgeries are already scheduled), but that they do see healing taking place. The big concern is still the fact that she is running these daily fevers in spite of the healing that seems to be taking place. They ordered a CT scan of her head, to check on her shunt again, and more blood cultures. Everyone just wants to continue making sure nothing is being overlooked. Neither of these showed any abnormalities, which is good, but still leaves us in the dark.

Lilyan, still feeling the affects of anesthesia, but so happy to be heading home after her surgery on Thursday

Starting on Saturday, her daily fever pattern began to change in a way that is causing even more concern. She woke up with a fever of 102º that morning, and that, all by itself, was atypical. She usually runs her daily fever in the afternoon, and on the occasional day when it hits in the morning, it’s always later in the morning, after breakfast. It was also more resistant in responding to Motrin and Tylenol. But it did eventually come down and stay down all day, so we didn’t worry too much.

Then yesterday, Sunday (May 12), she once again had a fever when she woke up, but this one was more concerning as it was 103.4º. It’s been a long time since she ran one that high, and, again, it was a little harder to bring down. For weeks, we had been planning a day of partying for yesterday as we celebrated Mother’s Day, Kathryn’s fifteenth birthday, which was on May 9, and Robyn’s twenty-first birthday, which slipped by practically unnoticed while we were in the hospital back in April. We were all a little worried that we might have to cancel these plans, but the fever did eventually come down again. We decided to continue with our plans and reach out to Infectious Diseases the next morning.

It really was such a special day, and we are so thankful that we were able to pull it off. Here are a few pictures.

Kathryn and I always celebrate her birthday and Mother’s Day together, and we always get a new picture with each other on that day. It was good to do something so normal.

Robyn’s table (Lilyan’s sweet face)

Kathryn’s table (she was so excited!)

This morning, she once again woke up with a fever. It never got as high as yesterday’s, but it was even more stubborn about coming down. We communicated with one of the Infectious Diseases doctors, and he remains concerned. He is wondering about the possibility of a “deep ‘loculated’ infection, meaning a collection of fluid; like an abscess.” He ordered an ultrasound of her back, and that is scheduled for tomorrow afternoon, but he explained that imaging will be a challenge because seeing things accurately will be really hard due to the hardware in her back. So the saga continues.

We all recognized that we were beginning to feel sudden and pretty intense discouragement today, and Scott and I decided we needed to do something to try to help reverse this. So we loaded the kids up and took them to Sharon Woods for a walk in the woods. We knew that there shouldn’t really be anyone there on a cloudy day like today and during a school/work day, so we felt pretty safe from germs.

We were right. The park was empty, and the fresh air and connection with nature were good for all souls. Even those with four legs.

Once again, it felt so wonderful to do something that felt so close to normal

Scott with granddaughter Jhannel

Kathryn loved this

Lilyan watching the water flow under the bridge

Roslyn and Nolan

Our dogs were so happy about this outing

I’ll try to update if we get any new information from Lilyan’s ultrasound tomorrow. As always, thank you so much for all prayers.