Sorry I left everyone hanging again after our update on Friday night.

On Saturday morning, as Kathryn was waking up, she looked up at me and said in a strong voice, “Can you help me sit up?” It was a good beginning to what turned out to be a good day.

She was very close to her normal self all day. She was super excited to change from a hospital gown into one of her favorite nightshirts; she sat up in her wheelchair and played for much of the day; her youngest nephew visited and blew bubbles with her and danced for her to the sounds of the Moana soundtrack; and she put on her braces and reached that all-important milestone of standing for the first time post-operatively, with Daddy’s help.

Her much-loved Eeyore nightshirt

Coloring with Mommy

Trying to help her nephew learn to blow bubbles

Standing with Daddy’s help 

Late in the afternoon, she heard her urologist say that she might be able to go home on Monday as long as her fever didn’t come back. We sometimes forget how much Kathryn catches of what goes on around her. She turned to me, flashed this smile, and said, “Soon I sleep in my own bed.” Look at the way her eyes are glowing. If we had any doubt that she was missing home . . .

Then, the day got even better when they discontinued IV fluids and told her that her PICC could be disconnected from the pump except for her every-six-hour antibiotic infusion. She also caught this news and was overcome with joy, as you can see! She threw her now-freed right arm into the air and cried, “Mommy, look!”

No longer tethered to her IV pump!

Then we hit another little bump last night before bedtime. Her nurse came in to check her temperature, and it read 101.5. Kathryn was smiling and talking and showing no signs of being sick, so we were certain this was a mistake. We asked the nurse to check it again, and she did. It read 99.1, which is not considered a fever. Unfortunately, she recorded the first number in spite of the fact that we knew it was mistake. We went to bed not knowing where this would take things

This morning, Kathryn woke up, and one of the first things she said was, “Tonight my last night here.” (She is somehow actually keeping track of what day it is and when she is supposedly going to leave!) We told her maybe, but she insisted that it would be tomorrow.

Then her incision was uncovered for a check. And it looked even worse. It actually looks really terrible. So terrible that I won’t post a picture.

We talked to the urologist on call today, and he assured us that this would not keep us here, but that the “fever” from last night might. We will have to see what the Infectious Disease Team says tomorrow. They will make that call.

As far as her incision, we have made the decision to request a consult with Wound Care. We went through this with Nathan last year, and after many months, we finally consulted with Wound Care. They were able to heal the wound in a few weeks. We don’t want to wait so long this time, now that we know what kinds of things Wound Care is able to do. However, we are seeing, one more time, what a tricky thing hospital politics can be. We are meeting some resistance concerning this decision, so would you please pray that everyone will listen to what we have to say, and that the best decision can be made for Kathryn without damaging any relationships with those who care for our kids. We have great respect for our children’s doctors, and we also have some experience with how delicate things like this can be (even though this should not be the case.) But we also know that our children’s needs will always be our first priority. We will know more tomorrow.

In the midst of these simmering frustrations, Kathryn has been super excited all day and kept telling everyone, “I see my house tomorrow.” “I sleep in my bed tomorrow.” “I use my own toothbrush tomorrow.” Etc. We have given up adding the maybe. 

God loves child-like faith. This doesn’t mean that we always get what we ask for, but it does mean that we trust that He wants to hear our hearts’ desires; that He loves to answer our prayers; that we can always trust Him to make the best decision for us; and that we rest peacefully and like a child in His arms.

As we wait for a definite discharge plan, I thought this seemed like a very good quote. Our prayer is that we won’t ever waste any of the minutes of our lives, no matter where God places us.

“Whenever God puts is in any place, He does so intelligently, with some purpose of good for us. We should be satisfied that we are never in our place by accident, but that God has placed us where we are for some good reason. He is always setting us lessons to learn. The lessons are not always easy, either; sometimes they are very hard. But if we accept the divine teaching and take up the duties which He gives to us in our hard place, we shall always find the best blessing and the sweetest comfort. While we cannot, therefore, change the life conditions or circumstances of our lives, we can sometimes work a little more bravely, live a little more sweetly in the hard conditions.”
J. R. Miller (1840-1912)

I’ll close with a few sweet pictures from our good day today. We don’t know what tomorrow holds. Our kids at home are really struggling hard, as of tonight. We believe we need to be with them, and that Kathryn needs to be home again. We feel that she is in a place emotionally that will prevent her from healing any further physically if we don’t go home. We are asking God to bring us home tomorrow. But if He doesn’t, we will still trust Him. He always has a plan; that plan is always for our good. We will be deeply disappointed, but we will look to Him to get through that disappointment and believe that He has some reason for keeping us here.

Kathryn loves her balloons

A friend sent Kathryn a card with some money to use in the hospital gift shop. She was very much up to this outing today, and chose this baby doll and bottle.

We have some really disappointing updates to pass on, and are feeling more and more worried about our girl again now.

Kathryn was continuing to progress, in spite of the issues that kept popping up and setting us back with recovery and threatening to prolong our stay here at the hospital.

First there was the fever (resolved as she responded beautifully to the antibiotics prescribed for her infection); then there were her ongoing PICC line issues (resolved now after a couple of dressing changes and multiple pump adjustments); after that, we were faced with terrible diarrhea, caused by her new antibiotic (resolved now by the re-introduction of her probiotics and by changing her to a different IV-only antibiotic); and finally, there was her partially collapsed left lung (also resolved now, we think, as she’s cooperated like a champion with respiratory therapy).

Then late yesterday afternoon, we noticed that her incision seemed to be opening up in one place. As they have continued watching that, it has gradually opened more, and we are now seeing a couple of other places beginning to open up. This is of concern for a couple of reasons: 1) the risk of infection caused by the open wound, and 2) the risk that the entire incision could eventually open.

They started a treatment today called “wet-to-dry dressing.” Gauze that has been saturated with sterile saline is placed over the open portions of the wound, and then that is covered with layers of dry gauze. As the gauze dries, it draws the dead/decaying tissue up out of the wound, forcing it to heal from the inside out.

We will have to continue this treatment at home because it will take about two weeks to heal the wound. But they want to make sure it’s responding well before they let us leave here.

And then this evening, after such a wonderful day, we noticed that Kathryn was withdrawing more, becoming increasingly fragile emotionally, and feeling hot to the touch. Sure enough, her fever is climbing again. We are so worried about her now. They have ordered blood cultures and are going to culture the open wound to check for infection there.

We had hoped to maybe be released over the weekend, but it’s clear now that we have no idea when we will be leaving. Certainly not before Monday for sure.

In addition to our worries about Kathryn, I also start to worry about the other kids at home after so many days. Some of our younger ones begin to regress with some of their more challenging behaviors when we are away from them for too long. But it really is taking both of us to care for Kathryn here at the hospital, so we will press on.

Would you please pray for our kids back home — the younger ones and the older ones who are caring for them? We would really appreciate that.

And would you please pray that we can find the reason that Kathryn’s fever has returned, and also that her wound will heal?

Up to this point, Kathryn had been becoming more and more like herself every day. She was beginning to talk to us a little more each day, and we were seeing a few more smiles each day. I’m so sad to see her slipping away from us again. I can’t even describe how heartbreaking this is.

A very dear friend surprised us yesterday by ordering an amazing and very special meal to be delivered to us this evening via Uber Eats. I am sad tonight, and tired and discouraged. But God had already put the pieces in place for this special gift of love even before we knew any of this would happen. How like Him to reach down and breathe His love over our sad and tired hearts before we even asked.

Incredible dinner tonight (you can see how sick our girl is in the background)

We will try to hold onto this reminder of God’s love and sovereignty in the midst of the uncertainty and fear.

Here are a few pictures from the past couple of days, showing you how much progress Kathryn was making before these setbacks.

Blowing bubbles yesterday to help with the lung issues – using a special bubble blower loaned to her by her niece who has Down syndrome and understands how hard it can be to blow.

A new puppy named Chloe who loves to snuggle in Kathryn’s gorgeous hair.

Playing with Gel Clings just this morning, sent to her by friends while Bella and Chloe watch (see that awesome smile?)

Coloring with Magic Ink

Our sweet Kathryn shivering under blankets as her fever climbs again tonight.

One of my favorite pictures of Kathryn – ever! She was so happy and being silly with me yesterday. She thought it was so funny to get this picture of her amazing hair. I miss this girl’s smile so much.

So sorry to have left everyone hanging after last night’s events, and the update following that post. It’s been a very intense morning — good and bad. Here you go:

Kathryn’s fever came down enough last night that she was exhibiting a much more natural restfulness. (YAY!) They let her start back on her Melatonin last night, and I think it’s very possible that she would’ve slept through the night if we hadn’t had issues with her PICC line again. (Can I say out really loud just how much I now hate the sound of that alarm?!)

As long as I sat beside her bed, hunched over her with my hand over ear to block out the PICC alarm, and a pillow over her head to block out the nurses’ flashlights, she was able to stay mostly asleep for the night. But it was a very long night. I was able to sleep deeply in the parent “bed” from 2am until 4:40am while her PICC line decided to take a break. But then, things were off and going again until morning .

This is what Kathryn and I looked like for most of the night (minus the pillow over her head).

It seems that she managed to, somehow, get a decent amount of sleep last night, and that her fever was down enough that she was more like herself because very early this morning, she even tried to give me a smile.

A little later in the morning, a PICC team came in and tried changing the dressing over her PICC line to see if that would help. (It didn’t. In fact, they have now tried TWO dressing changes with no improvement.) Because this is a sterile procedure, everyone in the room has to wear a mask. They don’t usually make the patient wear one, but for some reason, they did today. Just a few hours ago, Kathryn was so “not herself” that no one could get anything near her face without her becoming hysterical. Not sure why, but it would cause intense fear and panic for her. But this morning, she accepted the mask very peacefully. Another happy milestone.

Pain control is incredible! I mean, pain is almost nonexistent! This is huge, and we are so thankful for that. And her body is clearly responding to the Cipro, because she is feeling so much better and her fever is continuing to creep down.

But . . . a new challenge developed this morning. Horrible diarrhea, resulting from the Cipro. She’s been asking to get out of bed and play in her wheelchair and to eat and drink, but two full bed changes and three baths have really held us back. (By the way, the fact that she started talking again has also been a huge step forward.) The urology team is consulting with Infectious Disease (ID) about any other options out there, and everyone has finally agreed to let us start Kathryn’s probiotics back up again. We are super pro probiotics at our house. We are hoping this will help some while we wait to hear back from ID.

Her personality is still coming back little by little, in spite of the diarrhea, and it’s so great to see her dimple peeking out at us a bit.

Kathryn and her new puppy (still discussing names)

Later in the morning, we were finally able to get her in her wheelchair so she could play with Bella for awhile. She was content, we were able to coax a couple more smiles out of her over the next half-hour or so. Here is one of them.

A few minutes after this sweet smile, though, she dissolved into tears again. We think she is just tired, so she is settled back into bed, and we’re hoping she will be better again after a short rest.

Thanks so much for the continued prayers.

Just wanted to update my last post.

Sadly, Kathryn’s fever has continued to climb. The pain team just pulled her epidural. The next 24-48 hours will be more complicated now. But we will get through them. They have agreed to add Toradol to her IV, along with IV Tylenol. Now that we are almost 24 hours past her surgery, we just might be able to get her through with those, and avoid having to add any mind-fuzzing narcotics. That is what we are praying for now.

As far as the fever, they are now thinking that it’s the UTI that showed up in her urinalysis the night before surgery. The culture for that came back today and showed quite a bit of growth. They will be changing one of her antibiotics to Cipro again. I hate that drug, but sometimes you have to just do what you have to do. When Plans A and B fall through, you go on to Plan C. One step at a time.

PT came by again and had her do some actual sitting on the side of bed, and although that was miserable for her while she’s feeling so bad, she was such a trooper and worked really, really hard. She’s such a strong girl, but so very sick. She is now so sick that she doesn’t even want her music or to hold any of her animals or dolls. The only thing that seems to bring her any comfort is to hold onto our hands.

Thank you so much for praying for her and for us. She is sleeping pretty peacefully at the moment while squeezing my fingers (making typing a little tough), and we are so thankful for that.

Sleeping pretty peacefully in spite of her climbing fever

We are in need of prayer for Kathryn. I’ll try to quickly update things since her admission to Children’s this past Monday, and then lay out our prayer needs.

Early Monday morning we came to Cincinnati Children’s so Kathryn could be admitted for a 24-hour clean-out to prepare her body for her bladder surgery. This day of prep is not fun and involves placement of an NG tube and a PICC line, nothing but clear liquids to eat, and hours and hours of changing bed sheets over and over again.

Kathryn rocked every minute of this. She was truly amazing.

NG Tube Insertion

We also had the added complication of finding a way to keep Kathryn’s hair up and safe from the multiple messy sheet changes. This girl knows how to grow hair!

Our first night was very long, but only because her PICC line kept setting off alarms, and because it took until after midnight for her body to complete the clean-out. We all only slept for 2-3 hours.

During one sheet-changing session, Kathryn’s special blankies got messed up and needed to be laundered. It was after midnight, and our nurses offered to do that laundry for us so that we could get some sleep and so Kathryn would have clean blankies for surgery the next morning. We have had the most amazing nurses all through this whole journey, so far!

Waking up early Tuesday morning to clean blankies, washed and dried by her devoted nurses

Early Tuesday morning, they took us down to surgery. Kathryn was calm, but almost non-responsive as she tried to cope in her own sweet way with the stress she was feeling. She lost herself in her music with her new MP3 player; held onto her new doll, Bella, sent to her by dear friends; and clutched her family photo in her hand.

Focused

Preparing herself for what’s to come

Her separation from us went very well, thanks to Versed through her IV, and they took her into the OR at about 8am, Tuesday morning.

Her urinalysis from the night before had shown another urinary tract infection, but they continued with surgery plans, warning us that, if they should find actual inflammation in her bladder once they scoped her, they would have to cancel.

We also knew that, if her appendix wasn’t healthy enough to share for forming the necessary tubes for both her Mitrofanoff (an opening in her abdomen for emptying her bladder), and for her Malone (an opening in her abdomen for emptying her colon), they would have to use intestinal tissue to form one or both of these tubes. This would result in a longer surgery, a longer hospital stay, and reduced chances of success.

We were thankful to learn as surgery progressed that her bladder looked good enough to continue, and that her appendix was healthy and large enough to use for both procedures.

Eleven hours later, she was finally in recovery, and we were able to be with her again. She was weepy from the anesthesia as she usually is, but she didn’t seem to be in any pain.

They were able to place an epidural at the beginning of the surgery, and this seemed to be helping a lot. None of our other kids was ever able to have an epidural because of their spine and/or spinal cord involvement; Kathryn has cerebral palsy, so doesn’t have these complications, making her eligible for the epidural. This was very good news because any medicines that affect her mental clarity tend to make her emotionally unstable, and this instability can cause a lot of difficulty in trying to assess her level of pain, communication, and overall recovery. And, even worse, it can lead to seizures for her. Having the epidural greatly decreased the chances of needing narcotics to control her pain, and helped in our goals to keep her mind as clear as possible. This girl can handle almost anything you throw at her as long as her mind is clear and her mommy and daddy are by her side. I can’t even begin to say how thankful we are for a team of doctors and nurses who are so open to listening to us as we try to explain Kathryn’s unique challenges in these areas. They are all working hard to find the right answers for managing her pain.

We got back to our room at about 8pm, and by 9:30, we were all tucked in for the night. We had an excellent set of nurses who kept visits to the room to a minimum and did them almost silently. They were amazing. Also, Children’s now has egg crate mattress pads available for purchase, and it was pretty incredible what a difference this made on the parent sleeper. We all slept very well, straight through the night.

Our Sleeping Beauty

Egg crate mattress pad. Yay!

Now for our prayer need.

Things have, unfortunately, taken a bad turn this morning. Her epidural does a good job of handling the pain in her 9-inch abdominal incision, but it doesn’t take care of the bladder spasms caused by the work that was done there. We had to use Valium to address that, and, as we feared, this has left her so mentally foggy that she is struggling to hold her emotions in check, cope with the pain, follow instructions, or even really respond to us. At least twice now, we were afraid we were building toward a seizure. Thankfully things resolved both times. So far.

And even more concerning is the fact that she is running a fairly high fever — higher than is expected for just a typical post-op fever. Her white blood cell count is elevated, but they aren’t sure where the problem is. They are suspecting her lungs and have ordered stacked breathing, using a mask and administered by a respiratory therapist.

Because she is so “not herself,” she fought like a little (but very strong) animal when we tried to do this. This is totally unlike her, and it broke my heart to watch her fight and to see the fear in her face as she tried to understand, through her mental fog, what we needed her to do.

They also had a PT come and help us do a couple short periods of sitting up, to hopefully help her lungs open up. This also was so very hard for her, but she tried valiantly to cooperate. Even just remembering this brings tears to my eyes.

Fighting fever and the effects of Valium

Trying really hard to cooperate with the physical therapist

We need this fever to go away. The pain team has told us that, if it’s not gone by this afternoon, they will have to pull her epidural because they can’t risk any infection making it’s way into her spinal area through the epidural catheter. This will mean resorting to more mind-fogging narcotics to control her pain.

We are worried about our girl. She really is not doing well at all. Even though we have stopped the Valium for now, she is continuing to become more and more lethargic, less and less responsive, and sleeping more deeply so that it’s increasingly hard to rouse her. It’s easy to be afraid. This is hard.

Please pray that her fever will leave her body. Please pray for us as we try so hard to make decisions about managing pain — and even determining if any distress we see really is pain, or just emotional reactions to the previously administered meds for pain.

And please pray that we will not allow fear to dominate our hearts and our minds. We have felt God’s presence so close through these long months of struggle for Kathryn. We know He is still with us now and will walk us through whatever is ahead. We want to remain aware of this river of peace that flows under and through all human emotions and fears.

“The Christian is far from being entirely exempt from those chafings and disquietudes which seem inseparable from human life. But through all this, there flows a river. A heavenly mind soars above a poor dying world, casting its daily need upon the heart of a kind Providence, making known it’s requests unto God. It realizes a peace which passes all understanding.” ~ Octavius Winslow, 1856

“The Lord is near.  Do not be anxious about anything . . . and the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 5:5-7

In case there are some of you who follow this family blog, but have not yet signed up to follow my personal blog, I want to be sure you see this incredible news posted on that blog last night –  Though the Winds Blow. (Click the title to get to that post.) We are so excited and want whole the world to hear this beautiful story of God’s provision and His faithfulness.

Short update on the family:

• Murray has gone to his new home and is doing very well there and showing no signs of aggression in that new environment. He has bonded with his new owner in ways that he never seemed to be able to with us. Here’s a funny picture of him all decorated for the Fourth of July. His new owner is a dog groomer and loves being able to do fun things with his fur. He is totally attached and devoted to her, and this helps ease the pain in our hearts of having to find him a new home.

• New glasses for 12 people!

• Lots of birthday celebrations for kids and grandkids.

• Braces on three kids’ teeth

• The incredible gift of home improvement construction has continued

Walls are now being painted

Those two openings at the end will eventually be two totally enclosed and separate bathroom stalls. We can’t wait!!!

• Kathryn’s surgery is now one week from today. I am feeling some anxiety over this because we’ve already been through this surgery six times before; we know how hard it can be. Getting Kathryn through it will be a whole different story than it was for the others. We are ready to get this behind us, but dreading it more than we can say. Friends have graciously stepped up to provide meals for the kids here at home. We are so thankful for this, because we expect that we will both need to stay by Kathryn’s side constantly throughout her hospital stay. We are holding onto this precious promise:“As your days, so shall your strength be. There is no one like the God of Jeshurun, Who rides the heavens to help you, and in His excellency on the clouds. The eternal God is your refuge, and underneath are the everlasting arms.” Deuteronomy 33:27

  Please pray for her and for us as we care for her. She still has her abdominal drain in place and continues to fluctuate, usually daily, between this:

And this:

• And the last thing is just the huge news mentioned above. Pop over to read that post if you haven’t already seen it.

Thank you so much for your continued love and prayers. We will post more as we go through Kathryn’s surgery next week.

“God is ever bringing good to us, never evil. He goes before us and scatters the furrows full of seeds — seeds of light. It is not visible light that He scatters, but dull seeds, carrying hidden in them the secret of light. Then by and by, as we come after Him, the light in the seeds breaks forth, just at the right time. And our way is made bright. There is not a single dark spot in all our path, if only we are living righteously. There are places which seem dark as we approach them. We are afraid, and ask, ‘How can I ever get through that point of gloom?’ But when we come to it, the light shines out and it is radiant as day.”
~ J.R. Miller (1840-1912)

Some of you who follow me on Facebook may have seen a few cryptic comments here and there this past week about tough days. I sometimes feel that I’ve turned into quite a whiner lately, but . . . wow, this week has been hard!

For those of you who like details about our life, I’ll share them below. Those who don’t want so many details, feel free to just skim (or skip over). There are a lot, and these are just the most critical moments and don’t include things like dead car batteries, and sudden broken toilets.

Monday: 

• Got up early to prepare for the volunteer demolition team coming in to finally tear out our old kitchen and prepare for construction of our accessible bathroom (Yay!)
• As the morning progressed, Kathryn showed signs of increasing discomfort at her abdominal drain site
• Continued getting four other kids ready for eye appointments, but as we were loading the van, Kathryn dissolved into pitiful sobs because her pain was so intense. We discovered that her drain was clogged again, and after much work we were finally able to clear the clog and get her bladder emptied. But her drain site was hurting more than ever, and didn’t look exactly right to us. We took a photo of it, gave her pain meds, set her up with Moana (her favorite movie these days), and assigned an older sister to do nothing but sit by her side until we could get back home. Then we dashed out the door late, calling urology nurses on our way to the eye doctor.
• During the drive and our time in the waiting room, I had multiple conversations with a couple of very attentive and concerned nurses as they took a look at the photo we emailed to them showing the worrisome parts of Kathryn’s drain site.
• While I was tied up on the phone, one of our teens texted Scott to say that Murray had just bitten one of the volunteers who had given up his day to help with the demo in our house. This volunteer was headed to the hospital to have his hand stitched up.
• Several hours later, we were finally on our way home with prescriptions for new glasses for three kids, a temporary plan in place for Kathryn as we waited to see her surgeon on Wednesday, and our heads spinning about what our dog had done.
• Spent the evening checking in with Murray’s victim (who was incredibly kind and gracious about the whole incident, easing some of the stress we were feeling), researching dog bite laws in Ohio, and trying to reach the trainer who worked with Murray before he ever came to our family.
• Learned that we would eventually get an official notice from our county Board of Health explaining details of what would happen from that point forward, but that it would involve at least some kind of quarantine for ten days.
• Fell into bed late and exhausted, but got almost no sleep because of our great concern and high emotions over the fact that we now owned a biting and unpredictable dog.

Demo team at work — before the dog bite

Roslyn, waiting for her eye exam and the news that she will need glasses now.

Tuesday: 

• Got up early again to prepare for the construction crew’s arrival, and a post-op appointment for one daughter.
• Made a plan to keep Murray isolated from everyone as we continued trying to understand the laws in Butler County and continued trying to reach Murray’s trainer.
• Took time to explain to the construction crew that we now have a dog who is considered a “dangerous dog” by the state of Ohio, and that we would be keeping him away from them, but that, if he should get out of the bedroom we were keeping him in, not to go near him.
• Tried hard to grab a few minutes here and there to discuss long-term plans for a dog who has inexplicably been gradually becoming more and more aggressive toward strangers and toward our younger kids. During every spare minute, searched the Internet for rescue groups who help with re-homing such a dog.
• In the afternoon, we dashed to a stressful appointment required by the state to determine that our congenitally developmentally disabled daughter is still congenitally developmentally disabled so she can continue receiving her SSI benefits.
• Got back home for a late dinner and tried to help the kids begin working through the emotional upheaval of all that’s going on with a pet that was once loving and gentle, but no longer allowed to be near them.
• Fell into bed late again, and still got very little sleep. However, during this night, I began to feel a supernatural peace and assurance that God was still very near us through these difficult events, as well as the unknown ones to come.

Working through the confusing grieving process of losing this fluffy boy who used to be so great with our kids

Construction of our large accessible bathroom begins

Wednesday: 

•  Up early again, and continued contacting rescue groups until I received confirmation that no one would help re-home a dog with a history of biting and aggression.
• Headed out for two appointments that morning.
• After these appointments, we tried to shut out everything and enjoy a precious time with a granddaughter as we took her for her birthday outing with us. In spite of the fact that we actually hit and killed a robin in the road on the way to this outing (and that I began to think that maybe this was the final straw for me emotionally), we were able to rally again and have a beautiful and very special time with this granddaughter.
• Afterward, we dashed back home to pick up Kathryn and Roslyn so we could finally  go see our urologist — we’d waited so long for this appointment!
• As we were leaving, we finally heard back from Murray’s trainer who wanted to talk. Had a long phone conversation with her as we drove to Children’s, and she very kindly comforted our hearts by assuring us that this was not our fault (irrationally and emotionally, we had been feeling like we had somehow done something to turn this marshmallow of a puppy into a killer dog), and expressing as much confusion as we were feeling over the changes in personality we’ve seen in our fluffy dog over the past few months. She also made it clear that this was a very serious dog bite and that she also felt Murray could not stay in our home with our children any longer, but assured us that she would take him back, check for any medical conditions behind the changes, and observe and assess his potential for retraining and placement in a home with no children. She has always loved this dog and possesses the skills to tackle his challenges now, and she promised that she would take very good care of him for us. We made tentative plans for a hand-off, but couldn’t finalize anything until we got the promised official notice from the county.
• After the phone conversation, we arrived at our afternoon urology appointment early for a change, only to be told that, although someone had told us the appointment was for 3pm, it was actually for 11am, and that we had missed the appointment now and the doctor was gone. As Kathryn sat in her wheelchair beside me, whimpering because of the discomfort she was feeling, I felt the tenuous threads holding my emotions together begin to unravel. I was barely able to speak or hold back the tears as I tried to explain that this mistake wasn’t our fault and that we absolutely had to see the doctor. A very tense hour passed as everyone tried to figure out what to do. Finally, they told us that the doctor was on his way back to the clinic to see us and that our 15-year record of never missing an appointment with them carried a lot of weight.
• Had an hour-long consult with this doctor who determined that some of Kathryn’s current discomfort is due to the fact that her skin is reacting angrily to the sutures holding the drain in place. He gave us instructions for dealing with that, and we discussed detailed surgery plans for Kathryn on August 22, and Roslyn on October 5. He also confirmed during this visit that Kathryn’s bladder is in really bad shape (as we had been fearing) and that it will almost certainly require a much more significant surgery in addition to the one already planned — a bladder augmentation. This is a procedure that involves taking bowel tissue and using it to add to the bladder to increase it’s size. There is the option of doing the still-major-but-smaller-already-planned surgery first, combined with Botox injections to the bladder over a few months to a year to see if that might increase her bladder function and capacity. Then we would proceed with planning this much bigger surgery next year if the Botox doesn’t work. This is all sounded eerily familiar as this is exactly what happened to Roslyn. And the botox didn’t work. That’s why she will be having a bladder augmentation on Oct. 5. After much discussion, we made the decision to try this conservative route first because augmenting the bladder with bowel tissue brings a host of new challenges into the picture. We already know about these challenges because Caelyn and Owen both have already had this daunting surgery done. One of these challenges is increased risk of bladder cancer down the road. Up to this point, the urology team had been able to say that none of their patients had ever developed cancer. This team takes extra precautions post-operatively that aren’t always taken by other centers, and they had hoped this decreased their patients’ chances of developing cancer. These increased precautions still may well help, but our surgeon shared with us that day the heartbreaking news that two of their patients had recently been diagnosed with metastisized and terminal bladder cancer. These teens/young adults and their families are now preparing to say goodbye to each other. This left our already-raw hearts aching with sadness, fear, doubts. But the bottom line is that, we know we have no choice. Children with spina bifida usually died in their 20’s from renal failure just 20 years ago, and the quality of life during those 20 years was not good. They were in and out of hospitals with renal issues and infections, and fought with body sores from their poorly-controlled incontinence issues. Our children live near-normal lives now because of the still-imperfect medical advances, and we are so thankful for that. But this was a sober reminder that our babies have very serious disabilities, and that they all face the possibility of short lives here on earth. We left there with so many mixed feelings, but one of these was gratitude for our great urology team here at Children’s and for nurses and doctors who truly care.
• Arrived home and discovered that an officer from the Butler County Board of Health had finally delivered our letter, but it was way too late to call them that evening.
• Had a late dinner with our kids and another late bedtime, but the strong sense of God’s presence that had started the night before only increased all through this hard day, and we slept much better that night.

Determined to not lose the chance to make precious memories with this granddaughter at The Tea Parlor

Isabelle in her fancy tea dress, shoes, and tiara

Thursday:

• Woke early again, and armed with our official letter, the name of the officer assigned to our case, and a phone number for (supposedly) reaching him, we began trying to put together a clearer plan for handling the situation with Murray. The trainer who will be taking him back had asked if we could just help with the expenses as she tries to determine whether there is a medical reason behind this onset of aggression, and we happily offered to have blood drawn here with our vet who already knows him. So first we had to find out if we could even take him to the vet while in quarantine. We learned that there are different opinions about this.
• After multiple phone calls we learned that 1) the officer assigned to our case was out of the office all day, and 2) that, yes, we could take him to the vet for blood work.
• Called the vet and got an appointment for that morning because we were already booked for other things in the afternoon.
• Rushed like crazy to get Murray to this appointment, but when we were almost there, the vet called Scott’s cell to tell us that we had been given wrong info and that he absolutely would not touch our dog until his quarantine was over. We turned around and went home.
• Murray’s trainer had also told us that, if our Board of Health would give their okay, she would take Murray immediately and care for him through the quarantine period and then begin his retraining and attempted re-homing. Again, after multiple phone calls, we learned that we could not take him to another county during the quarantine period.
• Made a detailed plan of keeping him as isolated as possible until the quarantine ends. Then the day after his quarantine, Scott and I will take him to his trainer where she will begin the first steps of determining what his future holds. After kissing our dog goodbye, we will come back home and try to help our children through the grieving process of all that this sad situation has brought into our lives.

Friday:

• The morning started with a phone call from urology surgery scheduling, telling us that the girls’ surgeries had each been pushed out a whole month! We were so unhappy to hear this. Sometimes, in-demand surgeons’ schedules change suddenly and surgeries that were scheduled way out have to be rescheduled to fit around those changes. We made several more phone calls trying to see if there was anything at all that we could do about this because of all that both girls have been going through for months as they’ve waited for these surgeries. The week had already been such an emotional one, and we reacted emotionally. In the end — actually literally mid-sentence with a nurse on the phone — I felt a still, small voice say to my heart, “Will you trust me to work this out?” And I was instantly filled with such a sense of peace that God was in control of these details, and that these nurses were stuck in the middle and that I could not control this change of plan. I was able to honestly express gratitude to these nurses for the tough job they have when they have to call families with this bad news and then do their best to reschedule everyone; and I was able to whisper to God that I would choose to trust His plans for our babies.
• We changed their surgery dates on our calendars, and I began to make a list of the 16 already-booked appointments that I would have to reschedule because of this new plan.
• Two hours later, surgery scheduling called me back to say that they had managed to find a slot to get Kathryn in three weeks earlier than her original surgery date, and Roslyn in about three weeks earlier than her original date. This was wonderful news! And we took some deep breaths and changed our calendars again. Kathryn will now have surgery on Aug. 8, and Roslyn on September 21.

Saturday: 

• Another busy day, but, thankfully, less so than the rest of the week had been. But Kathryn did have a terrible episode of pain, clogged drain, and then agonizing bladder spasms in the afternoon.
• Took us quite awhile to get her through this, and I was once again thankful for these new earlier surgery dates. Music is a powerful tool for Kathryn, especially if she can use earbuds for listening and shutting out all that’s going on around her. So, pain meds, Mommy and Daddy and several sibs around her, and music playing into her ears all helped to finally calm her, and she did much better for the rest of the day.

Now it’s Sunday. The date is June 18.

And it’s Father’s Day. (Happy Father’s Day to Scott, the most incredible father I’ve ever known!)

And it’s Scott’s and my 40th wedding anniversary.

Forty years! I can’t believe it. Didn’t we just celebrate my parents’ 40th wedding anniversary?! And such a full, beautiful, painful, full-of-growth, terrifying, surprising forty years it’s been!

We could never have predicted this life that day as our eyes locked during my walk down the aisle on my dad’s arm. Wow!

Some of our adult kids surprised us by renting, months ago, a Hocking Hills cabin for us for a few days away again. The events of this past week caused us to seriously consider cancelling our plans for this getaway.

But this was a gift sacrificially given, and the money is all non-refundable. In the end, they have convinced us to go ahead with our plans and leave them here with the almost unbearable and unpredictable challenges presented by Murray, Kathryn’s very up-and-down days, and the construction going on right in the middle of our living space.

We are a little bit afraid that we won’t be able to mentally and emotionally leave all of these stressors behind and that the money and the time away from our kids will be wasted. But we are going to try.

We know that each thing that happened during this past week was, as Miller said above, a seed — a seed scattered by the hand of God. Each of these seeds has hidden inside of it a secret, not-yet-visible light. And if we need to see it, then at just the right time, God will make this light visible to us, and the confusion and seeming chaos will all make sense. But if He chooses not to reveal these things to us, that doesn’t make them any less right and good and sent-with-love. We can trust Him with every detail of our lives, even in the darkness.

We recognize that this gift from our kids is actually a gift from our Father who loves us and promises to care for us and give us the strength to carry on each day, and we are packing our van and driving away this morning for a few days alone together. As we drive away, we will be asking Him to keep everyone safe and everything calm here at home, to enable us to leave it all in His hands, and to focus on our time together as we reflect on the incredible journey He started even before that summer day in 1977 when the two of us pledged our hearts and lives to each other forever.

Would you join us in praying for these things, too?

Such babies, so in love, so blissfully ignorant of the wild ride ahead of us. I would do it again without even stopping to think.

(So much going on with a couple of the kids. Details of where things stand and upcoming plans below. As always, prayers would be so cherished.)

Scott and I have realized over the past 40 years of marriage that it’s really important for us to get away from the relentless stress and meeting-of-needs on a regular basis if we are going to stay strong and healthy enough to care for everyone in this family. However, we also know that we must trust God to truly decide how to provide the strength needed to keep up the pace of our lives.

About two years ago, we decided we needed to try to slip away for a few days of deep rest together about every three-to-four months if God provided the funds for that. That sounded extreme to us when we initially kind of fell into this decision. But after much prayer, it really did feel right.

God’s plans were apparently different from ours, though, and it’s been over a year and a half since we’ve had a getaway that wasn’t overshadowed in some way by cancer. So when a friend provided a gift for us to go away together last month, we were thrilled.

But also apprehensive.

The kids weren’t at all in good shape medically for us to be sure we could leave them for a few days. Roslyn is fighting almost constant urinary tract infections and other continual problems related to the failing of her bladder surgery last September. And Kathryn’s bladder and bowel function are deteriorating so rapidly now that she is completely unable to void on her own and requires daily bowel flushes to empty her colon. She, like Roslyn, is also fighting almost back-to-back urinary tract infections and is experiencing much more pain than Roslyn.

In the end, our urology team, who really seemed to want to make it possible for us to take this time of rest, worked hard with us to get Roslyn and Kathryn in a safe “holding pattern,” and pieces in place with our daughter and son-in-law Kristie and Greg in case the girls ran into trouble while we were gone.

So we decided to risk it, knowing that it was possible we would have to come home early.

Greg and Kristie and their eight kids moved over to our house to care for our kids, and dear friends provided meals for all of them every day that we were gone.

We rented a cabin in Hocking Hills, took two of the dogs with us, and had probably the best time away together that we have ever had. While we weren’t able to really manage the deep sleep we had hoped for (our brains are so used to constant planning that they couldn’t shut off completely), we did somehow experience peaceful rest and relaxation.

We had fun, and we had long, uninterrupted conversations with each other, went for walks together, played games, cooked fun meals, and laughed.

Murray and Godfrey tag-alongs

Goofy dogs

During one of our many walks

Preparing breakfast one morning

Scott’s finished product – Cooking for two is so easy!

Thankfully, Kathryn and Roslyn stayed stable, although not healthy, until we came home. The night we came home, though, Kathryn began experiencing pain again. By the next morning she was really struggling, and by the next day she had also come down with a cold and was absolutely miserable.

So much bladder pain

A very sick girl

Yesterday morning (Monday), we had to take Roslyn to Children’s very early for a minor surgical procedure with our urologist. This was the second step of a two-step process to try and prevent her stoma (the opening in her abdomen used for catheterizing her) from sealing closed. This has been a battle for months now. Her other, even more serious, issues will be addressed in a much bigger surgery in October.

Roslyn a little anxious about her IV, which is always a challenge for even the most talented vascular access tech

She did great for the procedure, and our urologist actually spent most of his post-op time talking with us about Kathryn. He is very concerned about her, and it’s clear that we can’t continue like this while we wait for her big surgery date in August. So he has altered the plans for her.

First of all, he has had us begin irrigating her bladder twice a day with Gentamicin. We do this for several of our children, so it’s not something new for us. In fact, we have a freezer that’s used almost exclusively for the storage of our monthly supplies of this medicine for all of the kids who have to use it.

Next, he has scheduled her for a short surgical procedure this coming Thursday.

He will make an opening in her abdomen and place a drain directly into her bladder. This will allow us to stop using the Foley catheters that are causing some of her pain and keeping her at risk for infection. He needs to do some pretty detailed testing on her before her surgery in August, but the tests can’t be done while she has an infection. Four times now, we have scheduled these tests and then canceled them because of infection. It is everyone’s hope that this drain will allow her to remain infection-free for a few weeks so that we can complete this critical testing and have a clearer idea of what’s causing all of her problems. The testing will also enable the surgeon to confirm that his plans for her August surgery are all the right plans.

This drain (called a suprapubic drain, or SP) will remain in place indefinitely, but very possibly for the entire summer until her August surgery. The really bad part of this is that she will not be able to swim at all while that drain is in place. As most people know, we were blessed with a large pool last year when Lilyan was granted a wish by Make-a-Wish. Kathryn loves this pool and looks forward all year to being able to swim. Her sweet cerebral-palsy-encumbered body is so free when she is in the water. It absolutely breaks my heart that she will probably have to miss an entire summer of swimming. But we know that it’s critical that we keep her bladder and bowel healthy and protect her kidneys, so we don’t have any choice about this.

I can’t believe that Scott and I could already feel so completely exhausted and cut off from each other only three days after that amazing time together. Honestly, things have been so hard since we got home, that my heart has longed more than once to run away to our safe little cabin again. But as C. S. Lewis says:

“Our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.”

We are so thankful that God provided that time of rest. But this is where we live — in the trenches, following the voice of our Leader (who is no stranger to suffering!), and gazing into the beautiful faces of our children who have been used by God so many times to save us from ourselves and lead us into a closer walk with Him.

He will never let us forget that our real source of strength and rest is Him. And over and over and over again, He will give us opportunities to practice running to Him and sheltering under His wings when we are too exhausted to keep going.

I’ll close with one of my favorite pictures of our little cabin where we found refreshment and rest for a few days.

But now it’s time to run home in the midst of this storm and seek shelter from all trouble beneath the wings of Jehovah. So I will ask God to forgive me for so often running away from Him in a panic when things get hard, and to help me lean harder into Him and nestle closer under His wings as Scott and I try to hold onto each other and wait expectantly each day for the strength and wisdom to press on. And we will continue to pray for healing for our babies.

“Our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.”