Some Wonderful Lilyan News!

**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.**

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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.

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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.

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In early September, Nathan graduated from Butler Tech’s Industrial Welding program. This instructor was a blessing.

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So proud of this son.

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In late September, we finally celebrated the August birthdays (and Nathan’s, which was September 11).

Reunion With Godwins After 6 Months 9/22/19 #2

A snapshot of our reunion day with our local grandchildren (and their mom and dad). This was SUCH a great day!

Raiza's 30th #7

Also at the end of September, we celebrated this daughter’s 30th birthday. Again, such a special day!

Raiza's 30th #5

A t-shirt from her brothers

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On September 28, we did our first Grandkid Saturday (while their mom and dad did a little date time) for the first time in many months! Another great day. There are seventeen kids on the floor in this picture, and lots of other teen/young adult kids piled on furniture on the perimeter.

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On September 30, Kathryn had tubes placed in her ears after struggling with ear pain for months.

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That night, she had a little trouble shaking the anesthesia, so we put her in our bed for awhile before bedtime to “sew” her apple. Our little dog Silke so often plants herself at Kathryn’s side like this when she senses that Kathryn is going through a tough time. So sweet!

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Lilyan, SO excited as she waits for a brother to drop her into the pool.

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In the water for the first time this year. She was in heaven!

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Playing with all of the other kids

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The Three Musketeers, together again.

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I turned 60 in June, but we waited until the family could all be together to celebrate. Our two Portland, OR, grandsons sent me this “60” crown and sash, and the oldest one, who is four, wrote this sweet note for me.

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These three grandkids also had summer birthdays, but waited until we could all celebrate together.

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Gabriela turned 10

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Josiah turned 11, and Mikaela also turned 10

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This was a day more special than I can even describe

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Granddaughter Jhannel knows how much I LOVE Lucy, so . . .

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. . . she ordered a Lucy Pop Funko doll for me, but it didn’t arrive yet.

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My dear husband knows that I’ve wanted a mortar and pestle for years. I finally got an awesome one!

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Quick Update on Rosenow Patients

I just wanted to post a little update to let everyone know how all of the kids’ surgeries, etc., went.

We were able to get Nathan moved into his new apartment on Monday, thanks to lots of help from his siblings.

Jaden’s rod lengthening on Wednesday went as expected. He came home early that afternoon, and has just rested and taken regular doses of Tylenol and Motrin to address his back pain. He is beginning to improve today, and he should be back to normal in a few more days.

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Jaden ready to head to the hospital

Jaden's Rod Lengthening #2

Jaden on the way home from the hospital

Once we got him home and settled, Scott and I headed out with Lilyan to see her physical therapist and our medical equipment guru, Craig. We began the process of getting insurance approval and the constructing of her new amazing wheelchair months ago. We were shocked to get insurance approval with no battles at all, and much faster than we ever dreamed we would, and her new wheelchair arrived in Cincinnati two months ahead of schedule. We are still just completely blown away by the blessing of this chair and the ways it will change her life once she is healed. I’m attaching a couple of pictures and a couple of short, and not-great-quality, videos so you can see for yourself just how amazing it is.

Lilyan's New Chair #1

Lilyan’s new chair has an elevator that will take her from this (so she will be able to get herself into her chair unassisted once she is healed) . . .

Lilyan's New Chair #2

. . . to this (so that she can reach tables and even countertops).

Very early the next morning, we arrived at the hospital with Caelyn and Lilyan for their surgeries. That whole day turned out to be way more stressful and challenging than we ever thought it could, mostly due to trying to coordinate all of the pieces involved with doing two surgeries with four different teams while also trying to oversee Jaden’s pain control back home via texts with the kids. But I’ll spare you all of those details. I’ll just sum it up by saying that we got through it, and thanks to help from our daughter Robyn we managed to get Caelyn home and Lilyan settled in a room on A-3 North.

Caelyn’s surgery didn’t go exactly as planned. There were just so many stones in her bladder this time, and they were bigger and more difficult to remove than in the past. After her surgeon got about 70% of them out, her body temp dropped dangerously low. They tried to warm her up, but it didn’t change anything, so they finally had to just stop the surgery. Once they stopped the surgery, her temp began to slowly rise. She stayed really cold for a couple of hours after the surgery, even with multiple warmed blankets piled on her in recovery, but she gradually returned to normal.

Caelyn in Recovery

Caelyn shivering under many warm blankets in the recovery room

They had a cancellation in their OR schedule for Monday, so Caelyn will return very early that morning so they can remove the remaining stones. They left an abdominal drain in place while they wait for that date. Nothing like this has ever happened with her before, and it was a disappointment, but we are so thankful that things turned around for her and that this cancellation opened up just when we needed it. She is very sore and also just resting and treating discomfort with analgesics.

Lilyan’s back is closed! And her wound VAC is gone! They removed that one small piece of hardware, as planned, and the hope is that, along with the bone protein they added inside her back, the removal of this piece will promote the elusive healing we keep waiting for. She is still not allowed to try crawling for a month, because her spine surgeon is a little concerned about the stability of her spinal fusion now that he’s removed that piece of hardware. He wants to see her again in a month, get a new X-ray, and decide if she can start using her upper body then. That will be almost 7 months of no upper body usage. I’m sure she has lost a lot of trunk strength, but we believe she will regain that in time. Her plastic surgeon wants to see her in two weeks to remove her dressing — unless we start to see drainage through the dressing, which would be a bad sign. And our ID doctors will check her blood weekly for any early signs of inflammation.

As we have said, her surgeons have all made it clear that this could result in her finally healing completely, or we could end up back where we started. But we are happy to be here now, and ready to walk this slightly-shifted path as we trust God to show us His plans for Lilyan and our family.

Once we were settled in Lilyan’s hospital room yesterday afternoon, we were surprised by the profound silence in the room. We hadn’t even realized just how much a part of our lives the sounds of that wound VAC had become over the past almost-six-months. It is wonderful not to have that attached to her body anymore.

And — wonderful news! — they let us come home! We are all home already as a family, and we are thrilled to all be together, caring for these three. And even though we don’t know for sure that her wound VAC is gone for good, it’s gone for now!!! So we have decided to have a little “Wound-VAC-Is-Gone” party! When we asked Lilyan what special treat she would like to have for her party tonight, she said Little Debbie Cakes. Haha! If I was told I could choose anything I wanted to celebrate a big moment in my life, I wouldn’t choose Little Debbie Cakes, but . . . it’s not my wound VAC that was removed. So, Little Debbie Cakes it will be.

Heading Home Already! 9-6-19

Heading HOME!

Thanks so, so, so much for all of the gifts that have provided meals for our family this week (and even for a couple more days while we rest up and care for the ones recovering). This helps so much more than we can ever even make anyone understand.

We will keep you posted as the next few weeks pass and we see where things go with Lilyan.

Finally Something Different

On March 20th, we started a risky journey with Lilyan. We knew it would be scary, and we knew that it might be long. Yet this afternoon, 164 days later, we are still feeling like we almost can’t believe all that has happened.

164 days.

That’s almost half of a year.

I’ve said before that all these many weeks (23 1/2) have felt so much like the movie Groundhog Day. Day after day; week after week; month after month of the same thing. And these last few weeks have been so hard as Lilyan’s healing stalled awhile back, and we have seen virtually no changes in her wound during each of her weekly wound debridement surgeries.

But, finally, we have a new plan. It’s a scary plan, but at least it’s something different.

Although we know it’s not really true, we are tempted to say along with Bill Murray at the end of Groundhog Day,

Anything different is good.”

It feels almost like that, and the truth is, these new plans might turn out to be very good — exactly what we need to finally get us moving forward again and bring this long saga to an end.

But they could also result in setting us on a path that could reverse everything and send us back to the beginning.

All of the doctors involved in Lilyan’s case agree that there is no reason to continue what we are doing. It’s not working now.

So. New plans.

This coming Thursday morning, September 5th, Lilyan will go back into the OR with both her plastic surgeon and her spine surgeon. They will open up her back and do one more very thorough cleaning. They will also remove one small piece of the hardware. They feel (hope!) that this one piece, which is the most anatomically distal (from the spine  — closest to the skin surface), is part of what is causing her healing to have stalled. Their hope is that removing it will allow her body to finally heal completely.  Then to address what they continually refer to as “that deep place that won’t fill in,” they will add some Bone Morphogenetic Protein to hopefully promote bone growth that will bring the healing we need there.

Then they will close up everything.

This is the scary part.

If there is any lingering bacteria in the wound, or if any new bacteria should accidentally be introduced during this surgery, infection could begin growing again quickly, and could even cause us to end up back where we started.

The things we have going for us, though, are that everyone will be watching for any hints of infection. Our awesome Infectious Diseases team will be checking blood regularly to catch even the first sign that things are changing, and we will all be watching her incision for any signs of redness or opening.

We are a little scared, but we also agree that there is no other choice, and we know we have a great staff walking alongside Lilyan and watching out for her. And we are ready to move forward.

And just to keep things interesting, other medical issues have continued cropping up almost daily to the point that next week has turned into a medical nightmare.

Caelyn, who is eighteen now, had multiple major surgeries done throughout 2011. It was a really hard year for her. Last week, she suddenly began having some problems related to the work that was done back in 2011, and we ended up back in the hospital. Thankfully, they didn’t admit us overnight. They sent us home on a pretty grueling home treatment plan to hopefully stabilize things as they made more plans for her. It was determined that they needed to schedule a time in the OR to do a scope and gather more information about what’s going on inside her body, and tests also revealed that she has, once again, developed multiple stones in her bladder. This time a much greater number than ever before. These have to be removed asap. Everyone jumped into action and began making plans to have both of these procedures done at the same time, and as of yesterday, we have everything all lined up.

This is what next week looks like:

Monday: Another Rosenow moves out into his own place. Nathan will graduate from his Industrial Welding program at Butler Tech on Sept 9. He has been working full time as a welder for quite awhile and saving and planning, and it’s time for him to leave the nest. We are all feeling lots of “feels” about this step, but it’s good and right, and we celebrate this son’s next step into independence.

Tuesday: Appointment for one daughter that morning; appointments for two other daughters in the afternoon.

Kathryn and Shannen have had earaches for months (Shannen since June!), and no one can get the fluid out of their ears. It’s all very strange because they haven’t even had colds or allergy symptoms, but this fluid will not drain or resolve. We will see our ENT about where we should go from here.

Wednesday: It’s time for Jaden’s regular lengthening of the titanium rods in his back. That surgery will take place Wed, morning.

While Jaden is in surgery, a doctor involved with the scope Caelyn has to have done, will see her for a required pre-op appointment, and we are just praying that this appointment will move quickly enough that we can be back downstairs in time to talk to our spine surgeon after he finishes with Jaden. It will be a tight squeeze.

That afternoon, we will bring Jaden home and get him settled as he begins his recovery from this surgery. That usually takes about a week. Then we will dash out the door with Lilyan and take her to see her PT and our medical equipment guru for the first training session with her new high-tech wheelchair that was approved by insurance and delivered in Cincinnati much faster than anyone expected. If you’d like to know more about this amazing chair, you can look here.  It’s an awesome video.

We do have one problem, though. This chair weighs several hundred pounds, so there is no lifting it up a few steps into the front door like we do with the kids’ traditional wheelchairs. We must have a ramp into the front of the house. We are in the process of trying to get an estimate for having an attractive ramp built on the front of our house. Would you join us in praying for the needed funds to have this done as soon as possible?

Thursday: Scott, Caelyn, Lilyan, and I will all need to arrive at the hospital at about 5:30 am. Both girls will be in pre-op together, and then they will each go into separate OR’s with different teams for their surgeries. We expect each of these to last a couple of hours.

Once they are done, our daughter Robyn will head to the hospital (after she finishes running other critical errands for us that morning) to bring Caelyn home. Caelyn will have an abdominal drain in place as part of her recovery, and she will join Jaden as they spend the next week recovering together. We will have more info about future plans for Caelyn once we know what they find during her surgery and scope.

Scott, Lilyan, and I will be admitted, where we will all watch Lilyan very closely for a few days as they decide when it will be safe to send her home where we can continue watching for any signs of new infection. But we know that we will be in the hospital at least through the weekend.

For those of you who keep asking for a way to help, meals or food gift cards would still be so greatly appreciated as we tackle this next week. So many of you have saved us more times than you know with these kinds of gifts over these many months. I don’t know what we would’ve done without them. Thank you with all our hearts.

All through this, life has continued. I’ve miraculously been able to get some really productive school days in; and Kathryn has continued fighting with UTI’s (she now has her sixth one in six months); and we’ve continued looking for ways to keep fun and connection a part of our family life in spite of the isolation and monotony.

Here are a few pictures of life here over the past couple of weeks. Thank you for all of the love and prayers. We’ll let you know what we find out about everyone after all of the appointments and surgeries in the coming week.

Walk Around VOA Park 8-24-29 #1

During the cool snap last week, we took everyone out for a walk around the lake at VOA Park

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Granddaughter Jhannel with her cattail

 

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One of our favorite family traditions, dating back about 35 years, is our evening reading time. “The Chronicles of Narnia” will always be one of our favorite series. It’s such a joy to introduce it to a new group of kids every few years, and this past week, we started it with our final group of kids. Our last first time. There’s definitely something kind of sad about that.

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We had Turkish Delight one night as part of our reading time. If you’ve read the Narnia books, you will know why this particular treat.

Surgery #25 (Week #23) - 8/28/19

Lilyan’s 25th surgery this past week.

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As I said earlier in this post, Nathan will be moving out to his own place on Monday. Scott just happened to walk past the little boys’ room last night and spot this heartwarming sight. On the nights when he doesn’t have class, Nathan often stops by their room to read to the youngest boys just before they go to bed. There are only a couple more opportunities for this now. Bittersweet.

 

I Myself Will Go With You

“[In Exodus 33] Moses asked to be shown the way. The way is not shown; but better than this, God says, ‘Trust Me — I Myself will go with you!’ He will manifest towards you the same Shepherd love. The way may be very different from what we could have wished; what we would have chosen. But He has His own wise and righteous ends in every diverse turning in it. When His sheep have been conducted to the rougher parts of the wilderness He, their Shepherd, has gone before them. When their fleece was torn, and they were footsore and weary, He has borne them in His arms! Let us trust Him for an unknown future. He seems to say, ‘Pilgrim in a pilgrim land! My presence shall go with you in all your dark and cloudy days; in your hours of faintness and dejection; in sadness…”
~John MacDuff (1818-1895)
“And He said, ‘My presence shall go with you, and I will give you rest.’” Exodus 33:14
Life continues to be very hard and very unpredictable.
We continue to fight, and periodically we succumb to the weariness and discouragement. That’s kind of where we are this week. In the Valley of the Tired and in a place of feeling some discouragement and even some sense of defeat.
It’ll pass, but there’s really no getting around it. Whenever we reach this point, we have learned that we have to acknowledge it, look up, and place it in God’s hands, asking him to carry us through while we wait for him to breathe renewed strength into our tired hearts. We know he will. Even if we can’t feel that we know it, we know it.
Two years ago today, Kathryn spent eleven hours in the OR for her major bladder surgery. She had been very, very sick for almost a full year, and it was our hope that this surgery would finally bring her back to a place of health.
Kathryn's Big Surgery August 8, 2017

Kathryn, holding her blankie just before they took her into the operating room on this day in 2017.

Although it took several hard months after the surgery, this did happen. The surgery was a huge success, even greater than we had hoped for, and our girl enjoyed wonderful health and peace. For about 20 months.
Then this March, while we were in ICU with Lilyan, right after her big surgery, Kathryn developed a pretty serious urinary tract infection. We weren’t alarmed initially because this will happen from time to time because of her bladder reconstruction and her cerebral palsy. This was on March 25. Then on April 25, she was diagnosed with another UTI. And again on May 28. This has continued happening just about every thirty days for five months now.
She has been on so many antibiotics over these past months that she is beginning to experience some intestinal challenges now, too, even though we keep her on a significant daily regimen of probiotics. And no one can figure out what’s causing these infections to plague her so continually.
She finished her fifth round of antibiotics yesterday, but she is still showing some lingering signs of infection. Our urologist has made the decision to bring Infectious Diseases into the picture now, which we are very glad about. We have developed a really good relationship with the doctors in this department throughout this year as they have worked closely by our sides to care for Lilyan’s spine incision that won’t heal, and to help us solve Roslyn’s new issues with antibiotic resistance.
We are praying that they will be able to find the reasons behind Kathryn’s infections, and especially to find a solution for breaking this cycle of infection that her urinary system seems to be stuck in. We are already communicating with them and hoping to see them with Kathryn next week. But this means more appointments and more searches for answers.
Lilyan’s twenty-second surgery was done this past Tuesday (Aug. 6). The report was the same as previous weeks. Healthy tissue is continuing to grow over the hardware in her back, although more slowly than everyone would like. But, week after week, we also hear that there is one area, described by the plastic surgeon as “a deep place under her hardware,” that just won’t fill in and heal. Everyone is baffled by this, and no one seems to know what to do about it.
Also, the piece of hardware that fractured through her sacral bones is continuing to shift and putting her at greater risk for soft tissue breakdown in her lower back, which is an area that is beautifully closed and healed. This is in spite of the fact that we continue to keep her positioned mostly on her stomach with the use of a large, soft wedge.
Her orthopedic spine surgeon ordered a CT scan of her back to get a better look at things. This was scheduled to be done right after her surgery on Tuesday.
Just before she went in for this scan, we learned that one of his reasons for ordering this scan was to determine whether or not her spine fusion had “taken” sufficiently to actually remove the hardware from her back. We don’t really understand what this means, and the thought of opening her back up again, after fighting so hard all these months to get it to heal, was just more than we could grapple with at that moment.
CT Scan 8/6/19

CT scan as we continue to look for answers

We knew that, very early on, the removal of the hardware was presented as a last resort option if she wouldn’t heal, and it was clear that this would’ve been a really bad thing. There seems to be some evidence now that, once her spine fusion (the bone part of her surgery, and not the soft tissue part that we’ve been fighting with all these months) was healed and well-established, the hardware could safely be removed, although it wouldn’t be anyone’s first choice.

It seems that (if we’ve understood the little bit that we’ve been told so far) some people’s bodies just won’t heal fully as long as there is a foreign material inside, but once that material is removed, full healing will happen pretty quickly. So, although we were still uncertain about the whole possibility, and really discouraged at the idea of opening everything back up, we did feel some hope that maybe this could lead to the allusive healing we’re all seeking.

But we still had about a million questions to ask before feeling good about such a drastic step.

We resolved that we would just have to wait until the results of the scan were back, and then we would ask our questions.

Well, we learned yesterday evening that it’s all moot now because the CT scan showed that her fusion is not sufficiently healed or well-established. The description was that “it is fusing, but it’s not there yet,” and we were told that all discussion of removing the hardware is now off the table.

The main thing we felt in the wake of this phone call was just so! tired!

The one piece of good news is that the spine surgeon has decided to go ahead and open a small area in her lower back and snip off the broken piece that is causing her so many problems right now. He will meet our plastic surgeon in the OR next Wednesday, for Surgery # 23, and take care of this. If that incision heals as we all hope it will, then this will, at least, eliminate the need to keep Lilyan on her stomach so much of the day. This would make her days so much easier for her and for all of her caretakers. That is definitely what we are praying for.

In the meantime, we hope to have the opportunity to talk with her spine surgeon after this procedure next week and get a better idea what he’s thinking and what options, if any, there are for addressing the lack of healing in this one area.

Roslyn continues to struggle with occasional baffling symptoms, but doesn’t seem to have an active infection at the moment.

And the family continues to trudge on through day after day of living in isolation, away from the rest of the world as much as possible.

There have been some questions about why this has to be the case, so I’ll explain a bit about that. Lilyan must have these weekly surgeries for debridement of her wound and wound VAC dressing changes. If we don’t do this every week, the bacteria we have fought so hard to kill can immediately begin to grow again. And then we could easily find ourselves going back to the beginning of this whole journey. Even just a cold could prevent them from being able to take her into the OR for these surgeries. We can’t risk that. She remains on heavy medications to fight the continual battle with bacteria in her wound (one of which is causing her hair to fall out, poor girl), and we must do all that we can to help keep her healthy as we try to get her to the end of this hard recovery.

In the midst of these long months, a number of kids have fallen behind with critical routine testing associated with each one’s specific medical needs that must be done every six months or annually. I can no longer postpone these appointments, so I’m being overwhelmed with carving out the hours it takes to schedule them.

This is while I’m also trying to prepare new curriculum for this coming school year. Many of our kids struggle with at least some academic challenges, due either to their special needs, or to their traumatic beginnings and the changes/damage that this trauma can inflict onto little brains. So I have made some significant switch-ups with my curriculum this year, with great hope that these new materials will better address their needs in these areas. But it’s requiring a tremendous amount of prep.

I love this prep and really enjoy those hours. When I can find them. As always, my older kids are helping so much in other areas to free me up for this task when I can be at home. But it’s a massive challenge in the midst of all of these medical needs, and as I schedule more and more appointments and watch my school days filling up before my eyes, I recognize a growing sense of alarm that my school year will already be derailed before I can even get started.

I am trying so hard to trust God’s plans in every single area of my life and in the lives of my children. As the quote above says,

The way may be very different from what we could have wished; what we would have chosen. But He has His own wise and righteous ends in every diverse turning in it.”

I want to remember that God is by my side through whatever is coming at us for the rest of this year, and that it’s all beautifully and perfectly proportioned and filtered through his loving wisdom.

We have no idea what to expect every day when we wake up. There are so many unanswered questions. But He has promised, “My presence shall go with you, and I will give you rest.’” Exodus 33:14

Lord, help my unbelief in the midst of the tired and the uncertainty.

We were blessed to finally pull together celebrations for the July birthdays, even though it’s already August, and I now need to prepare three more birthday celebrations for those kids. I’ll close with a few pictures from that sweet evening.

July Birthdays #7

Our three July girls

July Birthdays #4

Madlin turned 21

July Birthdays #6

Shannen turned 13

July Birthdays #1

Lilyan turned 10 (and chose fun, summery lemonade decorations)

Lilyan's B'day #3

We’re always looking for activites that Lilyan can do while positioned on her tummy on her wedge pillow. She is suddnely very into braiding hair, so she was super happy to get this!

It is All Part of the Plan

This blog post is being written in the afternoon of Monday, July 29, 2019.

“Suffering is not a haphazard thing that comes in. It is all part of the plan. Suffering is part of the road to the eternal glory. It is just as much included in the plan as all the rest. Why should there be this interlude of suffering between the grace and the glory? ‘He himself will make you perfect, establish, strengthen, settle you’ (1 Peter 5:10). He will perfect you. The word here translated ‘perfect’ means ‘to repair’. It is precisely the same word that you find when you read that the disciples were mending their nets, and it means to finish, or to put into repair. There are many little rents in us, and the Lord allows us to go through this little while of suffering so that he may repair the imperfections. There is not here a child of God who is not the richer and the holier for the little while of suffering.”
~ Archibald Brown (1844 – 1922)

It has been many weeks since I updated everyone. I’m so sorry, but life continues to bowl us over, and doing things like writing blog posts is quite challenging. I’ll try to update here without making this too, too long.

Last Wednesday, July 24, Lilyan turned ten. Double digits. A pretty big birthday. She also had her twentieth surgery that day.

This coming Wednesday, day after tomorrow, it will be exactly nineteen weeks since Lilyan’s first surgery, (the night we came so very close to losing her), and it will also be her twenty-first surgery. We are still running into people who were in that crowded,  operating room that night, fighting hard to save our girl, and these people continue to remind us of just how close it all was. We never lose sight of what an amazing gift it is that she is still here with us, but life continues to be very, very hard.

The last time I wrote, I shared that Kathryn was fighting her third urinary tract infection (UTI) in as many months; that Roslyn was in the hospital for a serious UTI herself, and on IV antibiotics because the bacteria her body continues to produce is dangerously resistant to antibiotics now; and that Colin was showing great improvement in his seizure activity after starting his new anti-seizure meds.

Well, since that post, Kathryn has had two more UTI’s, making that five in five months, and no one knows what’s causing this except that it’s, in some way, related to her cerebral palsy. She started on a new antibiotic today. Also since that last post, Roslyn has been back in the hospital again and came home with another PICC line in place. That was removed about ten days ago, but she has continued showing some symptoms (mild, but still there) of another infection. To date, her culture isn’t showing an active infection, so we are just watching her for now, but it’s so concerning that she can’t get completely free of these symptoms. And Colin began exhibiting signs of seizure activity again. Our neurologist increased his dosage quite a bit, and we are watching him closely. Things have improved at least some for him.

We are all still dancing to the tune of a surgery every week for Lilyan, and after her surgery two weeks ago, our surgeon explained that her healing seems to have halted a bit. She made it clear that we still are not even in the final stretch of this journey. This was so very discouraging for us to hear, because I think that we had all, on some level, begun to think that we were nearing that place. I hit a very low point again that evening.

We truly have no idea how many more weeks/months this is going to last. Thanks to our careful quarantine strategies, constant use of Juice Plus, and God’s gracious protection, everyone has remained healthy. We are so thankful for this, but we are so very sick of being isolated from the world.

We sometimes start to wonder if we’re being too crazy-overprotective, but every time we start to think that, our surgeon makes it very clear that it’s critical that we continue to live this way. Lilyan must have these surgeries every week, and if she should get even a cold, she would not be able to be put to sleep for the necessary debridement of her wound, and wound VAC dressing changes. So we remain mostly cut off from the world around us. This is not fun and it’s not easy.

On top of this news, there has also been more bad news concerning the hardware in Lilyan’s back. At the base of this large amount of metal in her back, things were anchored to the piece of sacrum that Lilyan was born with (she is missing most of the sacral bones). Sadly, that anchor point fractured through her little sacrum. This loose end is now protruding away from her spine and into the soft tissue in her lower back, putting her at risk for more tissue damage. You can see this in the X-rays below, especially in the profile view.

Lilyan's Hardware broken #2

Full view of Lilyan’s hardware, placed during her 14-hour surgery on March 20.

Lilyan's Hardware broken #1

You can clearly see the pointy end at the base that is pressing on the soft tissue in her lower back

Her spine surgeon will have to do another surgery to open up her lower back and snip off this end, but everyone is trying to determine the best and safest time to do this surgery. In the meantime, because it’s most prominent in a sitting position, Lilyan has to spend almost all of her time on her stomach. This has been another emotional blow for her, adding to her feelings of helplessness and loss of normal life and independence, but the other kids work so hard to find ways to keep her included in daily life and actively engaged mentally and as physically as possible. Our kids are working so hard to help us care for everyone, and we could not survive with out their loving and unselfish service right now.

Lilyan on Stomach 6/24/19

Through all of these many, many weeks, Scott and I remain as vigilant as we possibly can in continually sending out our mommy/daddy radar to see how everyone is faring through all of this. Some days are better than others. When needed, we hold family meetings to allow everyone to share their feelings and even weep openly to clear their minds and hearts of the emotions they are carrying. Then we all wipe away our tears, pull together again, and march forward. We often end these exhausting (but critical) family sessions with something fun, like a late-night movie. When ice cream can be part of that conclusion, that’s even better.

God has so lovingly used this time of isolation to draw all of us closer to each other; to refine us each individually and as a family; to build character; and to reveal selfishness, resentment, refusal to surrender to God’s plans for our lives, lack of faith, and fear hiding in each of our hearts.

As my quote above says, “There are many little rents in us, and the Lord allows us to go through this little while of suffering so that he may repair the imperfections.” What a loving and gracious God we have. I’m not always able to proclaim that. I am sometimes groveling on my face or shaking my fists or so very lost in my tears while begging God to bring this season to an end, that I lose sight of this beautiful truth. But He always brings us through those times and back to places where we can see His hand and His love in these clouds.

He has also continued to provide for us in practical ways: gifts of meal cards, or cash to provide for food in the hospital or the many necessary ordering-out meals required right now as we mostly live in survival mode; money to purchase all of the children’s curriculum for this coming school year; and many other things. Thank you so much to all of you who have been His instruments in providing for our family in these ways. And more than we can ever say, thank you for your prayers. They are truly what keeps us going.

And while we haven’t been able to do any more park days because it’s usually too rainy or too hot on any of our appointment-free days, He has provided other ways for us to come up with creative and fun things to do together as a family. Like some days to just relax and swim together in our pool. You may remember that this pool was a Make-a-Wish pool for Lilyan four years ago. She asked for this so that “my family can all swim together in one pool.” How heartbreaking that she is the one unable to be in the pool at all this summer. But, in spite of some periods of crying and expressing sadness, this girl continues to be courageous, and strong, and to rise above the darkness, and to look for the beams of sunlight. She is an amazing example for all of us.

Here are some photos of our past few weeks since my last update, including one of the most exciting and fun things that God provided for us to do. Dear friends sent us a huge box of giant lanterns to light and release into the sky. On one of our most recent hardest days, we chose that night to release them. We all watched the movie “Tangled” to get us even more pumped about our own lanterns, then after the younger ones had slept for a couple of hours, we woke them up just before 10pm and spent the next hour or so eating popcorn and releasing our lanterns. It was a magical night. There’s even a video below that will give you a little feel of what a special time it was for all of us.

Being Granddad 6/29/19

One of the hardest things about this long, painful challenge is not being able to see our grandchildren who live only fifteen minutes away. We’ve only seen them twice since Christmas. This one dear granddaughter lives with us, so we still get to see her every day. She and granddaddy had such a fun time playing in the pool together on this day.

Lilyan's Summer 6/29/19

During the times when Roslyn has a PICC line in place, she isn’t allowed to swim, so she keeps Lilyan company under our big deck umbrella at the side of the pool during these times.

Our Three Sick Girls 7/4/19

Our three little struggling girls, Lilyan, Kathryn, and Roslyn, spending some time playing together in the family room.

The 4th 2019 #1

Roslyn got out of the hospital just in time for us to keep up our annual 4th of July tradition of watching fireworks in our driveway. Here is granddaughter Jhannel experiencing these for the first time.

The 4th 2019 #2

Jaden and his 4th of July sparkler.

The 4th 2019 #4

Nolan and his 4th of July sparkler.

The 4th 2019 #6

I love, love, love this picture of Madlin and Kathryn.

June Birthdays

Earlier in July, we finally managed to celebrate the June birthdays (except mine, which was my 60th this year! I’ve decided to wait until I can do this with my grandchildren, even if I have to wait until the end of the year.) We still haven’t celebrated our July birthdays, yet, but I’m working on a plan for that.

Grandkids 7/4/19

We try to stay in touch with our grandchildren via silly Marco Polo videos. But that’s just not the same as being with them. The kids are all missing each other so much. How long, O God?

All Four Rosenow Dogs

We occasionally get to do fairly normal things — like getting all four dogs’ annual exams and immunizations done. I included this picture only because the rare normal things make me happy. And because this particular picture makes me smile. Little white Teddy, old man Godfrey, silly Silke, and big, sweet, always-sick Saxon.

New Red Shoes 7/2/19

New red slippers for surgery day. Little things are all big things these days — whether good or bad.

Lantern Release #1

Watching “Tangled” to get us all ready to release our lanterns a few hours later.

Lantern Release #3

It took longer than you can possibly imagine to get everyone moved out to the backyard and set up on these blankets with popcorn to wait for the lighting of the lanterns.

Lantern Release #15

I love this picture of our previously-launched lanterns in the background, and all of my babies in the foreground. Everyone loved this so much.

Thank you for praying for all of us and especially for our tired-but-strong little Lilyan. We will eventually get through this. We have all discussed how important it is that we not waste one moment of this time. Whatever lessons God has for us in this, whatever things He wants to reveal to us about ourselves, each other, family unity; teach us about how to grieve or how to celebrate or how to be grateful; show us about how to comfort others, express emotions in healthy ways, reach out for help  . . . we want to be sure we can look back and know that we drank it all in, embraced it all, and didn’t waste one moment of these months.

Beautiful Girl - 6/27/19

Our brave, beautiful Lilyan Moriah.

 

 

Grace That Orders Our Trouble and Pain

I’m writing this update from beside our daughter’s hospital bed. Not Lilyan’s. Roslyn’s. Not at all what we had planned.

While I’m here with Roslyn, Scott is trying to get back home where Lilyan’s wound VAC alarm is going off, alerting us to a leak, which needs to be addressed asap. He is stuck in stand-still traffic on I-75.

Lilyan’s seemingly-never-ending spine saga continues. She still has fever every day. She still has backaches and headaches every day. She still has surgeries every week. She still has her wound VAC in place, and it still wakes us many nights alarming and requiring fairly involved dressing changes to keep it functioning. And we are all still living in as much a state of hide-from-germs quarantine as possible.

Healing is happening, but it’s still very slow and there is still no hint that the end of this is coming anytime soon.

Now, back to Roslyn. Both Roslyn (who has spina bifida) and Kathryn (who has cerebral palsy) developed UTI’s over the past couple of weeks. In fact, Kathryn has had three UTI’s during the almost-three-months we have been caring for Lilyan. After their terrible bladder challenges and huge bladder reconstruction surgeries back in 2016 and 2017, and then their recoveries, and finally since their return to health around the end of 2017 and beginning of 2018, both Roslyn and Kathryn have been doing great. Until now. We are still a little uncertain about what’s causing Kathryn’s infections to return, but we understand some of what’s causing Roslyn’s trouble.

If you’ve heard or read anything about the antibiotic resistance crisis, then you’ll understand why we are really worried to learn that Roslyn has developed a pretty significant resistance to antibiotics. We learned about this last week as they were trying to figure out how to treat her current UTI. We also scheduled an appointment with Lilyan’s Infectious Diseases doctor so that he could meet Roslyn, help us better understand what all of this means, and become involved in the future treatment of her infections. That appointment is scheduled for June 17. We hope to understand all of this better after that appointment.

Unfortunately, when Roslyn woke up yesterday (Sunday) morning, it became clear that her body wasn’t responding to the antibiotic they were trying, and within a few hours, it was also clear that the infection had moved to her kidneys. She was a very sick little girl and getting sicker before our eyes. So we brought her into the ER late yesterday afternoon. There, the Urology Department, Emergency Department, and the Infectious Diseases Department all worked really well together and got her started on an IV antibiotic that everyone thought she would do well with.

ER 6/9/19

SO Sick - ER 6/9/19 #1

We had a bad night here at the hospital as her fever really didn’t want to come down and as her Foley catheter continually clogged, keeping her bladder from draining.

But the good news is that she is definitely some better today (although her fever is climbing again as I type this), which seems to mean that we have found an antibiotic that will work for her this time. It may not work next time, but it seems to be working this time. There is an oral form of this same drug, so we are hoping we won’t be here very many days before they will let us go home and continue treatment there — if she keeps responding well.

Doing Better 6/10/19

Friends have rallied, again, and are feeding our kids back home, and we have a plan in place that will allow us to be with Lilyan for her surgery on Wednesday if Roslyn is still in the hospital as we expect her to be. Friends and family are SUCH gifts!

In the middle of all of this craziness, our 21-year-old son, Colin, was also diagnosed with a pretty serious seizure disorder. Colin was born in Bolivia at only twenty-six weeks, and miraculously survived, but lost his vision. His latest testing showed seizure activity in multiple portions of his brain. Our neurosurgeon felt that he has probably been having seizures for years, and that they are probably (although we’ll never know for sure) a result of his very premature birth. Unfortunately, we didn’t catch any outward signs of seizures in past years. I have moved through a whole range of emotions in processing this information, and I have wrestled with a lot of mom-guilt that we must’ve missed things we should’ve picked up on. Mom-guilt is a real thing. Whether it’s valid or invalid, it’s real. But we can’t go back. We can only move forward. I’m mostly at peace with this now.

While we were in ICU with Lilyan back in March, Colin had some very obvious seizures, and that’s what prompted this search for answers. He is on medication now and we began almost immediately seeing improvement. We are beginning to feel some excitement about how his life and ability to function will probably improve now that this has been discovered and is being treated.

Colin on Hike 6/2019

Colin on our most recent family hike in the woods, after starting on anti-seizure medications. He was more animated and interactive than we’ve seen him in quite awhile.

But all of this has been really hard, and there are a number of other challenges that I’m not even going to take time to go into here. We pray for rest and a break, and we wake up to new “trouble and pain” day after day.

Yesterday (Sunday) morning, as we were watching Roslyn and trying to determine if we needed to take her to the hospital, we went ahead with our planned family service. The topic was God’s sustaining grace, and it was just what we needed to hear to prepare us for a trip to the ER a couple of hours later, ending with another unexpected hospital admission.

I texted our older kids to let them know we were headed to the ER with Roslyn and said, “You reach a point where you just know you can’t take anymore and then something happens that you’re sure you can’t cope with. But you don’t have a choice, so you just do. How long will that work? We had our little family service this morning as we were watching Roslyn and trying to decide what to do. It was on sustaining grace. We are crying out for that right now and I know that’s the only thing keeping us going anyway.”

During that home service, Scott drew heavily from a post from John Piper’s Desiring God blog. I’d like to share a little of what Mr. Piper had to say:

I wrote a four-line poem called ‘What Is Sustaining Grace?’ Here’s its definition in four lines.

Not grace to bar what is not bliss,
   Nor flight from all distress,
But this, the grace that orders our trouble and pain,
   And then in the darkness is there to sustain.

That’s what I mean by sustaining grace. If I were to define grace for you as that which bars what is not bliss, that which is flight from all distress, or that which can’t possibly order your trouble and pain, I would be a liar. I would be unbiblical, and I would be out of sync with real life and real experience. It’s just unbiblical to think about mighty, sovereign grace in that way.

[About] Paul in 2 Corinthians 12. Remember the thorn in the flesh? We don’t know what it was, but it was thorny. It was painful, and so he cried out, ‘God, take it away! God, take it away! God, take it away!’ Three times he cries out, and three times the answer comes back, ‘No, no, no.’ Then Paul gets it, because of the reason that Jesus gives him: ‘My grace, my sustaining grace, is sufficient for you, for my power is made perfect in weakness’ (2 Corinthians 12:9). Paul relents, and he says, ‘Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong’ (2 Corinthians 12:9–10).

It is not grace to bar what is not bliss nor flight from all distress. It’s the grace that orders our thorns in the flesh. . .  It’s the grace in the darkness that’s there to sustain.

There’s no question in our minds that we are in a dark place right now. There are so many puddles of sunshine that pop up here and there, but overall, it’s a dark time. And the reminder that we have this promise of “grace in the darkness that’s there to sustain,” was what we needed to get us through these next unpleasant surprises waiting for us.

We are holding onto that.

 

When My Spirit Faints Within Me

I haven’t slept well the past two nights. I have felt so much unsettling turmoil in my soul, that resting peacefully is hard. And this turmoil invades my dreams even when I do doze off.

I don’t even know exactly why. I have examined this and tried to figure it out.

My best guess is that it’s just the cumulative emotional ups and downs; concern for Lilyan’s and all of the other children’s welfare; constant necessary alertness and planning; continual required changes in our daily plans; and the fatigue that comes from all of these things — all with no let-up for well over two months now.

I feel like I reach deep down inside myself every morning and pull out any remaining scraps of anything that will enable me to get through each day and care for my family. And there are just so few scraps left now.

When I woke up this morning, I just stayed on my pillow, staring out through my window. I watched the trees blowing in the wind heralding an approaching storm, and as the thunder started to rumble in the distance and the sky gradually darkened, I felt all of my inner being do the same thing. That darkness just spread over me and through me, and it pressed so suffocatingly on my heart that I didn’t see how I could possibly get up and start my day.

Even before I did finally get up, I was fully aware of the need to stop reaching inside of myself (I already know how utterly futile this is!) and to look up to the Source of my strength instead. I prayed passionately as I stared out of the window.

“God, I don’t know how much longer all of this is going to drag on. I don’t know how to keep going. But I know that you know all, and that every second is somehow part of your good and perfect plan for Lilyan; for me; for Scott’s and my marriage; for each of our other children; even for Greg (our son-in-law and The Shepherd’s Crook Orphan Ministry’s Executive Assistant) who is keeping TSC going for us as we just try to survive day after day and guiltily leave him handling everything with the ministry. Please give me what I need to get up and do this day. Please fill me with the energy I need and JOY that I should be feeling for the honor of being the mother in this family and for walking a holy path laid out by you before the beginning of time.”

I’d like to say that I was suddenly infused with joy and strength and passion for this coming day’s work. But I wasn’t. I felt nothing.

But I did get up. And that was something.

I took a few minutes to do a little quiet time, and these words from Charles Spurgeon, and these verses from David’s heart in the Psalms did calm the turmoil just a bit:

“The Lord will perfect that which concerneth me.” Psalm 138:8

“If we indulge in any confidence which is not grounded on the Rock of ages, our confidence is worse than a dream, it will fall upon us, and cover us with its ruins, to our sorrow and confusion. The Psalmist was wise; he rested upon nothing short of the Lord’s work.”
~
Charles Spurgeon

When my spirit faints within me,
you know my way! Attend to my cry,
    for I am brought very low!
Psalm 142:3, 6

I stretch out my hands to you;
    my soul thirsts for you like a parched land.
Let me hear in the morning of your steadfast love,
for in you I trust.
Make me know the way I should go,
    for to you I lift up my soul.”
Psalm 143: 6, 8

Lilyan had her weekly surgery yesterday. The report was the same as every week. The wound does appear to be healing; still very far to go; still puzzled by her daily fevers, etc., etc., etc.

Again I say, we are very thankful that healing is taking place, and that the infection is improving, but we tire of seeing our girl struggle through these fevers daily. We are weary of weekly surgeries. It breaks our hearts to see her losing muscle mass and strength (she is losing about a pound a week still, and we think much of that is muscle mass). Here is a picture of her trying to get through school earlier this week in spite of a 102.4º temperature. She was determined to finish her school work. She is amazing and strong and just presses on every single day.

Doing School With High Fever May 20, 2019

Lilyan’s neurologist joined the multiple teams navigating her journey this week, and we do feel like he has shed some light on the possible cause for her fevers. He showed us X-rays of Lilyan’s Chiari malformation (part of her spina bifida). He said that the areas of her brain being stretched by her Chiari could definitely affect her body’s ability to regulate temperature under times of stress. Everyone involved believes this sounds plausible, and it also explains why she has always run fever under times of emotional stress or during times of fear. This just happens to some kids who have neurological issues like hers.

The good news is that this means, if everyone is correct (and in our guts, we feel they are), her infection truly is responding, and there is nothing big to worry about. The bad news is that this could stretch out for many months before the body gets itself back to a place of healthy, stable temperatures, and we can’t do anything except stay the course day after day, treating her fevers and modifying our days as needed to get her through each one. And keeping her away from any potential illnesses, which means continuing to stay mostly cut off from the world. We are all very tired of this part.

It is also looking more and more unlikely that Lilyan’s wound will heal in time for her to do any swimming in her Make-a-Wish pool this summer, and this just breaks my heart. We have bought her a special deck umbrella that she can use to at least spend time out there with us in the shade when it isn’t too hot and humid, but this is certainly not the kind of summer we would’ve chosen.

I do feel a little better prepared for the day, and the hard days ahead. But I also feel very fragile. Like a wisp of wind would knock me back down. I will have to lean heavily on these words throughout the day, I’m sure.

We have much to be thankful for and God’s promises to carry us through anything ahead. My head knows this, and I will trust the Holy Spirit to, in His good time, bury this deep in my heart as well.

The Fight Continues

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.

Blog Post for May 13, 2019 #2

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.

Blog Post for May 13, 2019 #4

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.

Blog Post for May 13, 2019 #4

Robyn’s table (Lilyan’s sweet face)

Blog Post for May 13, 2019 #7

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.

Blog Post for May 13, 2019 #8

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

Blog Post for May 13, 2019 #9

Scott with granddaughter Jhannel

Blog Post for May 13, 2019 #10

Kathryn loved this

Blog Post for May 13, 2019 #11

Lilyan watching the water flow under the bridge

Blog Post for May 13, 2019 #12

Roslyn and Nolan

Blog Post for May 13, 2019 #13

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.

 

Did We Make the Wrong Choice?

Written Saturday, April 27, 2019:

Short update and some perspective and healthy reminders.

Lilyan continues to run fever each day, but mostly feels good in between those fevers. They stay between 101º and 102º and continue to come down with Motrin and Tylenol, so we aren’t overly concerned — just watchful. As I said in my last update, we feel like these constant fevers are an indication of how hard her body is fighting to beat this infection. She is very tired all the time, but mornings are typically better for her. Each day at about 2:00 pm, we see her really start to fade, and by bedtime, she can barely even hold her head up.

It’s hard to watch her go through this and twice over the past five weeks, both during some of our scariest moments with her, Scott and I questioned our decision to put her through this surgery. We knew that not doing it would’ve meant a short life for her, but we started to wonder if it might’ve been better to have given her a shorter life without all of this pain and all of these surgeries and hospital stays and really hard separations from her siblings. Without all of these powerful medications that carry, along with the hope of healing, the risks of life-changing side-effects and complications. Without all of this disruption to her normal life and regular routine, and the uncertainty that each day brings.

But as we talked through these things, Scott realized, and pointed out to me, that it wouldn’t just have been a shorter life for her. It would’ve been a shorter life that included exactly what she’s going through now — wound infections, in and out of the hospital, separations from her beloved siblings, pain, fear, surgeries, and medications over and over again. But instead of moving toward the hope of healing, we would all knowingly be moving toward the end of her life and watching her suffer from continually declining lung function and quality of life. That put things into perspective for sure.

So while Lilyan was outside in the sunshine today, waiting for her Motrin to start bringing her fever down as her doting sisters walked her around the neighborhood in her hospital-issued wheelchair (her old one no longer fits her re-formed trunk), I spent a little time going back through photos taken of Lilyan since her homecoming in June, 2014.

I wish so much that we had thought to deliberately get before and after pictures, but even these that I found are pretty shocking to us and remind us that, once we get through this hard season, it’s going to be so worth it for our girl! Her chest no longer rests on the floor when she sits, and this is one of the major changes that will save her life now.

Front views before surgery:

Lilyan Sitting - Before Surgery #10

Lilyan Sitting - Before Surgery #12

Front views after surgery:

Lilyan Sitting - After Surgery #3

Lilyan Sitting - After Surgery #2

Side views before surgery:

Lilyan Sitting Before Surgery #5

Lilyan Sitting - Before Surgery #11

Side view after surgery:

Lilyan Sitting After Surgery #1

So, no matter how much harder it might get from here, we once again feel confident that we did not make the wrong choice for our girl. And we are so thankful to be so close to a hospital with such gifted doctors who still feel it’s worth the hard stuff, and even the risks, to give our daughter this chance at a better life. There are other hospitals around the country that have decided it’s too risky to continue attempting these surgeries for children like Lilyan.

Here are a couple of fun shots of the kids playing outside together in between the rainy days we seem to have so many of right now. We are continually saying aloud to each other just how thankful we are to be at home at this moment even though the battle for health and healing rages on.

Playing Outside 4/27/19 #1

Terrible lighting, but these two were so excited to go outside together

Playing Outside 4/27/19 #2

Blowing bubbles

Playing Outside 4/27/19 #3

Bubbles . . .

Playing Outside 4/27/19 #4

. . . bubbles (Jaden) . . .

Playing Outside 4/27/19 #5

. . . and more bubbles (Owen)

Playing Outside 4/27/19 #6

Look closely. I almost can’t stand how cute this picture is! (Oh, and Caelyn is pretty cute, too.)