Maddening Helplessness

“We need to bring our weakness to Christ and lean on him in simple faith. If we lay it on the strong Son of God and let him carry us and our burden, He will make our very weakness a secret source of strength. He will not take the weakness from us—that is not his promise—but he will so fill it with his own power that we shall be strong, more than conquerors! This is the blessed secret of having our burdening weakness transformed into strength. The secret can be found only in Christ. And in Him, it can be found by every humble, trusting disciple.”

~ J. R. Miller (“A Life of Character”), 1894

Last Saturday (May 30), Kathryn had a terrible and prolonged seizure episode that lasted an hour and forty minutes. My heart just shriveled up inside me as I held her head in my lap for that indescribably long period of time and watched electrical activity ravage my baby’s brain. I can’t even describe the pain, the fear, the maddening sense of helplessness I felt during those time-stood-still moments.

I wanted to reach inside that beautiful and precious head, grab hold of those hellish seizures with both hands, rip them from her brain, and crush them into oblivion. I wanted to fight to free my brave girl from their clutches. I felt such rage over my inability to fight this enemy attacking my baby, and I wanted to channel that rage into destroying them. Instead, all I could do was sit helplessly broken on the floor and hold her, knowing I wasn’t enough.

I couldn’t save my baby from what was happening to her. And that has now become daily life as Kathryn’s mommy. I feel so weak and so “not enough.” So infuriatingly helpless.

She has astounded a watching world through her sixteen years of life and fought so hard and so courageously to accomplish the impossible — over and over again. And now we are watching the results of those years of fighting, slowly disappear as these seizures eat away at her delicate little brain.

It required three separate doses of rescue medications Saturday night to finally bring things under something that at least resembled control. Scott then placed her sedated body lovingly into our bed where she could try to sleep safely between the two of us. None of us really slept much that night.

Her neurologist was out of town, but we stayed in close contact with his nurses, and he even called us to check on her. They discussed hospitalizing her, but we chose to hold off until he got back to town because we didn’t want her under the care of a doctor who doesn’t know her history the way her own neurologist does. One of the things we hear repeatedly is how unusual, atypical, even unique, her seizures are. They can be very confusing for someone who doesn’t understand them, and the wrong treatment could make things worse.

Her doctor returned to town on Tuesday and admitted Kathryn where they hooked her up to EEG and planned to leave her connected for as long as it took to get an accurate picture of what’s going on.

Being admitted to the hospital on Tuesday
Getting set up for her days-long EEG

Sadly, this EEG painted a picture that is even worse than everyone expected based on her already-disappointing short EEG done a couple of weeks ago. It showed seizure after seizure, one after another. Most of these are generalized (affecting her whole brain), as opposed to the ones she has had in the past that affected localized portions of her brain. Many are subclinical, which means that there are few, or even no, outward signs that she is seizing, but these are just as damaging to her brain as other types of seizures.

The bottom line is that she is seizing even more than we thought, even in her sleep, and none of the medications are working.

Resting as the leads attached to her head registered constant seizure activity in her brain
The screen, showing one of her many seizures; she was getting virtually no time to recover from one before another started.

They decided to remove some medications that are clearly not working, gradually wean her off of another that’s not working, and add some new ones. Her EEG the next morning did show some possible slight improvement in the number of seizures, as well as the spacing between them, giving us some bits of hope that maybe we are moving in the right direction.

They unhooked her and let us go home last night on these new meds, with the plan that further attempts at controlling will be done through continued communication with her neurologist while we continue charting any possible signs of seizure activity to determine whether we are seeing any progress or not.

The long-term plan is still implantation of a Vagus Nerve Stimulator (VNS), and we have a video appointment next Tuesday with our neurosurgeon to discuss plans for this.

Sadly, much damage has already been inflicted on Kathryn’s brain. She is no longer able to crawl, when she used move all through the house that way. On days that she can crawl at all, she moves very, very slowly, can barely hold herself up, can only go a very short distance, and sometimes her arms collapse under her causing her to fall. She can’t hold crayons or pencils, and she was SO close to learning to write her name by herself before this happened. We’ve worked on that skill for about three years, and she almost had it. She struggles to snap simple blocks together, when in the past she would snap them together in a long line that stretched all the way across the family room. Her speech is so slurred that it’s often almost impossible to understand what she’s saying, word retrieval plagues her so badly, and her perseveration (repeating words or phrases over and over and over again) is severe now. Her moods range from manic-happy to tearful and grumpy and sad. She even hit one of her sisters the other day, which is just completely out of character for her gentle, happy, and compliant personality. As soon as she realized what she had done, she dissolved into sorrowful tears. I fight tears myself as I type this.

I watch her fight so hard against all that is happening inside her brain. I can literally see her trying to pull herself out of the muddled muck that is her thought processes most of the time now, and trying so hard to stay focused or make her hands and body obey. It reminds me of that feeling of trying to wake up after anesthesia. But right now, the seizures are winning. 

And no one knows if this loss of function is permanent or not.

We have reached out to her physical therapist to discuss starting regular sessions again (along with occupational therapy) to try to give her every chance of regaining these lost skills IF we can get the seizures under control.

One piece of happy news: the night we were admitted to the hospital, we also reached full funding for Kathryn’s seizure dog as the final donation came in! When I told her we had all of the money needed for her dog, she caught on to our excitement, and this was her reaction. The picture is blurred because I tried to snap a picture very quickly as soon as I saw that flash of our dear Kathryn and how fully she was grasping the significance of this news. In spite of the fuzzy quality, there is no mistaking our sweet girl behind those eyes, and the joy this news gave her.

Now we have a long wait (probably at least two years) to actually get her dog. I went to the gift shop and chose a stuffed dog for her, telling her that this one could be her “pretend seizure dog” while she waits for her real one. She, with lots of help from us, named her Stella.

Please pray for our girl. Pray for healing and peace in her struggling little heart. This is scary for her, and we see that fear and confusion in her face so much of the time now.

Please pray for our other kids. This is really hard for them to watch, and our sadness and concern affects them. Two of her sisters sat with Scott and me during that long seizure last Saturday night, and some of the others hovered in the hallway looking for anything they could do to help. This girl is so loved by her family, and everyone is hurting.

Please pray that we will not get so lost in our fear and our feelings of helplessness that we forget we can trust the One holding our baby in His hands. We can sometimes only whisper garbled prayers, but our hearts long to remember this truth:

Whatever befalls God’s children — their joys, sorrows, comforts, crosses, losses — all are a part of a Divine plan and arrangement, whose issue and result is their good. That bitter pang which tore up my hopes by the root! that unexpected poverty! that anguished sickbed! that crushing bereavement! how can I write ‘good’ upon these? Many different colors, in themselves raw and unsightly, are required in order to weave the harmonious pattern. Many separate tones and notes of music, even discords and dissonances, are required to make up the harmonious anthem. Take a thread separately, or a note separately, and there may be no discernible beauty or use. But complete the web, combine the notes, and you see how perfect and symmetrical is the result. Here is the lesson for faith: ‘What I do,’ says God, ‘you know not now, but you shall know hereafter’ (John 13:7). The Great Physician knows that all the ingredients in His dealings are for our good. He mixes them.”

John MacDuff (1818-1895)
One final picture of Kathryn watching her nephew in Portland open his presents from us as he celebrated his fifth birthday yesterday

Hard Stuff and an Urgent Need

It’s been awhile since we’ve updated here, and we left things hanging with Lilyan’s second broken leg and Kathryn’s seizures. Things are stable, but not great with Lilyan now, but things are very unstable and really bad for our Kathryn.

Lilyan’s break was a bad one, right through the femur, and she has been in a cast for several weeks. Her X-ray shed a little more light on things, showing many older, smaller fractures that we were never aware of, and also significant osteoporosis. We have an appointment scheduled with a doctor at Cincinnati Children’s who specializes in osteoporosis in children with limited mobility. We hope to start learning more about the causes for this and possible treatment options. Unfortunately, they couldn’t get her in until the end of July, so we will have to wait awhile on that.

Lilyan being casted

Sadly, things have deteriorated for Kathryn, and she is the main one I’m writing about today. We need your help.

Kathryn at her most recent neurology appointment

Her EEG was very troubling and showed that, during that twenty-minute test, she experienced five obvious seizures and many smaller, focal seizures. This confirmed for us something that we were beginning to fear — that Kathryn is seizing pretty much all the time.

Speech is a tremendous challenge for her all the time, and most of the time she also struggles with coordination and eye control. Trying to get on top of this has already been kind of a long journey, and she is currently on four different medications and still experiencing seizure activity through most of each day.

This very short video shows one manifestation of her seizures. Notice the rhythmic motion in her left shoulder and arm, and her empty eyes (please ignore her messy hair). This is pretty constant unless she is so heavily medicated that she can’t function, and sometimes even then this continues. This is already very concerning, and it can become a much bigger seizure with no warning.

It’s breaking our hearts to see our girl so affected. We worry about what kind of long-term damage is being inflicted on her little brain, and we miss her conversations and her delightfully animated spirit in our daily lives.

Bedtime is the scariest time for us because, even though we have a camera in her room so we can hear and see her all night, we do have to sleep. She could have a life-threatening seizure without us ever knowing it. We are currently following the story of another adoptive family who found their son unconscious in his bed just a few days ago as a result of seizing during the night. They will spend this weekend now making end of life decisions about their precious son. This is a very real danger.

A specially trained dog could sense a life threatening seizure during the night and wake us up so we could administer emergency medications and get Kathryn the urgent care she would need. We have now come to the conclusion that it’s necessary for Kathryn to be paired with one of these dogs. It would also be trained in specific ways to comfort and care for Kathryn throughout the seizure, as well as assisting with mobility and retrieval needs.

We have spent the past couple of weeks going through the steps to be approved through 4 Paws for Ability for a seizure dog for Kathryn. Last week, we were officially accepted into the program, and now we have to raise the funds. It’s expensive to raise and train these very specialized dogs, so we have set up a page to help raise those funds. You can learn more about Kathryn and this project by going to Kathryn’s page at Mighty Cause.

We have been told that, even after we complete our fund-raising, it will be another two years before Kathryn’s dog will be ready for her. But just this past week, we learned that there are a few cases when it can unexpectedly happen much faster. Unfortunately, we can’t even be on a list for an opportunity like that until we have finished raising the funds, so we are very anxious to complete this step. 

We would be so grateful if you would help us share Kathryn’s Mighty Cause page as we try to raise these funds as quickly as possible. Also, if you are interested in donating, you can so do at that link above.

Lastly, I can’t even tell you how much we would cherish your prayers, not only for our efforts to raise these funds, but also for Kathryn’s safety, and for guidance as we try to get these seizures under control.

Thank you so much for always praying for and loving our family. We continue to be so awed by the depth of love showered over our family so regularly.

Showers of Good and Bad

Life is so crazy right now. For everybody. We hope that all who read this are safe and healthy.

I’m not even going to try to catch everyone up on the past two and a half months since I last posted. But I do want to share about today.

When it rains it pours.

We’ve all heard that and experienced it. Sometimes in good ways and sometimes in bad ways.

This has been such a strange day; such a mixture of really, really good, and really, really terrible.

We started the day prepping to celebrate Robyn’s 22nd birthday (which actually happened earlier in the month). But first thing after breakfast, Kathryn had another seizure and right away our plans were somewhat derailed.

Along with almost constant urinary tract infections (three just in the last month), she has been having signs of seizure activity for a couple of weeks. Then she had a pretty big and scary one this past Saturday morning. We have been communicating with her neurologist and waiting for some labs to come back with info about the seizure med levels in her blood.  We spent a large part of this morning writing with her neurologist, who increased her meds (those blood levels did finally come back from the lab), decided for now to keep her on the new temporary medication that he started over the weekend, and also told us he wanted an EEG done, followed by an in-person clinic visit with him. Clinic visits are only done for pretty urgent situations right now during the pandemic, so we know that he’s worried about her, and we’re thankful for that.

They couldn’t get us in for another two weeks for the EEG, so this awesome doctor contacted them himself and was able to get us set up for next week. I wish it could be tomorrow, but we’ll take what we can get and keep watching her. She mostly stabilized as the morning passed, but never returned fully to her normal self. We know that another seizure could be lurking just under the surface and ready to pop out at any moment. So we are staying on high alert with her at all times. This means not much sleep.

Kathryn at Robyn's 22nd

Kathryn, looking deceptively normal at times this evening. These glimpses of our girl make us long to get her seizures stabilized again.

We continued moving forward with birthday dinner plans, and even pulled off a fairly decent birthday for Robyn, who really does deserve (but doesn’t at all expect) much more than she got tonight.

Kathryn, Robyn, and Jhannel - Robyn's 22nd

Kathryn was, thankfully, peaceful and stable throughout Robyn’s party tonight, and our granddaughter Jhannel wanted to help with the candles.

Then this evening, as the younger ones were going to bed, Roslyn had some problems with her nighttime bladder drainage bag. While I stayed downstairs with Kathryn and Scott was working on trying to get the younger kids tucked in, one of our well-trained and dependable sweet older girls went to address Roslyn’s issue.

Just as Scott got back downstairs, Lilyan called for help from her bed.

Her leg had broken.

Again!

But at the knee this time instead of at the hip.

Our poor baby girl had sat up in bed to reach for her little stuffed hippo so she could snuggle him as she fell asleep. As she stretched to reach him, she heard a loud pop. She didn’t feel anything, because of her lower-body paralysis, but she noticed right away that her leg was no longer in its normal position. She was so upset and scared when Scott got to her. The older kids watched Kathryn while I ran upstairs, too, and Lilyan just dissolved into tears when I came in. She is such a tough, tough kid, but she has just had so much this past year.

We were able to calm her pretty quickly and assure her that we would contact her new ortho doctor and figure out where we go from here. Honestly, we don’t actually have any idea where we do go from here, but she really needs to know that someone is in charge. Someone who can keep her safe and make decisions that are too big for a little 10-year-old girl. We are trying to avoid emergency rooms during the pandemic, and we would really prefer to see her doctor who knows her history, if possible. So we will reach out to him in the morning.

We stabilized her leg with ACE bandages for the night, and she is sleeping a big sister’s room so that, if she needs us during the night, she can let us know without waking Kathryn.

So that’s the really terrible stuff. But what about the really good stuff?

Well, a group of people at our church made the decision to hold a virtual Amazon shower for our family to help provide some of the many things that need to be replaced in our home — sheets, towels, some kitchen items, pillows, blankets, etc. These items were listed in an Amazon registry in our name so that people would know exactly what we needed. We were so touched by this! A few people learned about it before it was made public, and this photo shows the stacks of laundry baskets that came from one friend a week ago. Our laundry crew was so excited about these baskets that you would’ve thought Christmas had come!

New Laundry Baskets from Amazon Shower 4/20

Our church sent out a message this morning around 10am, making the news of the shower public, and immediately, notifications of gifts that had been purchased for our family started pouring into our email inbox! This continued all throughout the day, woven into and around the really tough chaos like a beautiful strain of music. And it just kept on. Until now, 12 hours after the shower was announced, almost every gift in our registry has been purchased for our family! There are only a few items left to be purchased on that registry now.

It just doesn’t even seem real. We are just so blown away by this and a little dizzy from all of the emotional ups and downs of the day.

Thank you to every person (some of whom we don’t even know!) for blessing our family in this way! This show of love, this vote of support for the journey we are on, this reminder of God’s faithfulness and presence, this exclamation mark to the promise, “I will never leave you nor forsake you,” — these couldn’t have come at a better time than during this hard and exhausting day.

As I said in a Facebook post this morning, this makes God smile! I know it does. Not everyone is called to adopt, but I do believe we are all called to help care for orphans in some way. Maybe you know an adoptive family who could use this kind of loving, too. Please consider organizing something like this for another family who could use the help. We can’t possibly overstate the hugeness of this kind of blessing. These truly are things we are not able to provide for ourselves, and this is the case for many families who have followed God’s call to adopt.

We don’t know what’s ahead for either of our sweet girls in the coming days and weeks. But we know our Father is with us every step of the way. And we know that there is also an army marching alongside us, praying for us, cheering us on, lifting us up, and supporting us in loving ways.

Our hearts are tired and sad for our girls tonight and even feel some fear about what could be waiting for us when the sun comes up and we face tomorrow. But they are also overflowing with joy.

Lilyan - broken knee 4/23/20

A sad and frightened, but calmer, Lilyan as we got her settled into her sister’s bed tonight. We hope to learn more tomorrow.

 

You Never Know What a Day Will Hold

It has been so very long since I’ve posted here to update everyone. All I can say right now is that life has been crazier even than we could’ve imagined. Someday I might try to do a little catch-up on the last three-and-half months, but not today.

Some of you probably heard about my emergency surgery Saturday night. If not, well, I had to have emergency surgery Saturday night. Surprise!

Now it’s been 41 hours since I went into the OR for that emergency removal of my badly inflamed gall bladder, and nobody is more surprised than we are to be at the airport right now, just about to fly to Tampa, FL. I’m moving very slowly (feels a little like a horse kicked me in the stomach), and a liquid diet (like this vitamin water) will be my friend for the next day or so. But here we are. And walking is the best thing for the sore abdominal muscles. Lots of that in an airport.

CVG to TAmpa 1/27/20

Tomorrow will be 40 years since my brother and 22 other men died in Tampa Bay when their Coast Guard cutter, Blackthorn, sank there after a collision with an oil tanker. Every year since that day, there has been a memorial service held outdoors, close to the site of the accident. Scott and I have been privileged to attend two of those incredibly impactful services in the past, and as a result, have gotten to know families of other men who died that day, as well as survivors of the accident and their families. These people have become very dear to us, and we wish we could travel every year to see them for this special time. But we have really hoped and prayed that we would make it to the 40th service this year.

Unfortunately, we were not in a position financially to cover the cost of such a trip, so we had to accept that we wouldn’t be able to attend that. We were disappointed, but at peace. We’re learning more and more (but still very slowly!) to trust God’s wisdom with all things.

Then a few weeks ago, someone reached out to us to tell us that they would be buying our plane tickets and paying for our hotel costs so that we could attend this very special service for my brother and the other men. So that we could show up in Tampa and represent the Crumly (my maiden name) family in honor of my brother Gary W. Crumly. We were at a loss for words to express our awe and gratitude over this gift. They also explained that they knew that, because our children’s health issues have been so unpredictable this past year, it could turn out that, at the last minute, we wouldn’t be able to attend. They were willing to cover this cost and take this risk for us. We are still just awed by this kind of love.

Well, who would’ve dreamed that I would end up with emergency surgery that would force us to cancel our plans? I was more disappointed than I could even find words to describe, but we were willing to trust God with all things that didn’t make sense to us. And, again, we mostly felt peace in the midst of our disappointment.

Then I brought this up with my surgeon. Just before he took me into surgery, he said that it might be possible, depending on how things went. The next morning (yesterday) when he examined me after surgery and saw how great I was doing, he felt much more confident about letting me go if I followed a few precaution and promised to take it easy and rest as often as possible. And not lift anything heavy. Scott packed the lightest backpack in history for me, and he is carrying the extra stuff himself. And we are going to try this. I have been instructed to get to the closest ER if I have any problems, but so far, I’m doing really well.

We are so very grateful for this opportunity. Grateful that God worked out the details of my surgery (maybe more on that later — it was a crazy 24 hours!). Grateful to dear friends who cared enough about us to cover the cost of this very precious trip. Grateful to our children who weren’t supposed to have been left alone all weekend but were (because I was unexpectedly in the hospital) and still assured us that they would be fine as long as I felt up to taking this trip. They are, at this moment, putting together the craft and fun-things plans to keep the younger ones entertained while the two of us are gone.

We are so very blessed.

 

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

Walk Around VOA Park 8-24-29 #2

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.