Merry Christmas

We were so blessed to celebrate Christ's birth together this year. Enjoy some pictures from our day!

Mary, did you know?

"The blind will see, the deaf will hear, the dead will live again.
The lame will leap, the dumb will speak, the praises of the Lamb!"



These words to this song have never hit me before with the realization that THIS will be Waverly's reality one day. Wow. What a great hope she has in heaven. That her first steps will be leaping into her Savior's arms. That her first words will be praises to her Creator. That her broken body that experiences the sting of death every day will be made whole and perfect.



During this season, don't let the busy time of the holidays overshadow the profoundness of what we are celebrating. That this Baby who was born was born to die, to defeat death, and to bring LIFE.

So Much To Do...

...well, you know how that phrase goes. And at this time of year, even more so! Add on to that the holidays, normal stuff of having 3 kids and running a house, a ten-year wedding anniversary... OH, and a NEW (to us) house that has a LOT of work needing to be done, and, well, you get the picture.

So, this is my PLEA. If you are local to us, WE NEED HELP!

With the help of many, we have almost finished cleaning the new house (LOTS of work, as it was in bad shape). We are now ready to start painting it (everything must be painted now to make it safe for Waverly), and then of course putting it all back together again so we can move in. We have done SO much already, but there is still lots to be done. (I confess, I may have googled HGTV once or twice looking for some sort of program or show that would help us!)

We are open to any and all help! Painting, cleaning, sanding, plastering, yardwork, carpeting, packing, moving, etc. If you have a skill of some sort, I imagine we could probably utilize it in some way. Of course, if you are busy like everyone else this time of year, we will gladly accept donations to hire to get the things done! :)

To those who have already helped us, THANK YOU. We can't wait to be in the house and to be settled and to have a place that better accommodates our family and Waverly!

New House, Old Fears

Isn't that the most beautiful hallway you've ever seen? That is the hallway in our soon-to-be NEW house!! We started looking around at homes a few months ago, just to see what was out there. We currently live in a two-story Colonial home (that we LOVE), but the bedrooms are all on the second floor. Waverly has gotten a lot bigger the past year (36 pounds now!), and it simply got unsafe to be carrying her up and down the steps. We ended up finding a home that we loved, that had all the bedrooms on the main level and had hardwood floors, and was in our price range! We close on the house this week.

Of course, with the new house, and the changes that come with it, old fears are surfacing for me. I first experienced these types of fears back when I was working full time and was finally able to quit my job. It was VERY needed, as it was so hard to work full time and feel like I wasn't able to be here with her (and my older two). I was stressed trying to get to her appointments, and when she was sick and I had to leave her and couldn't be there with her, it broke my heart. And my heart was especially broken over missing time with her, knowing that our time with her is limited anyway.

But as the time to quit that job approached, I got this terrible fear. I wondered, if NOW that I had quit, if NOW was the time for her to spiral downward. What if my quitting was the "perfect storm", opportunity for her to pass? I of course did NOT want to keep working full time away from her and miss time with her. But I was so scared of her passing, and then looking back in retrospect and realizing it was so great that I had quit so that I had that little bit of extra time with her. I don't even know if that makes sense. It didn't help that the very month after I quit, she got very, very sick.

But here I am again, struggling through some of the same emotions. What if we finally decided we needed to make some more permanent environmental changes (by moving into a handicap accessible home), only to find out that she ends up passing away before or shortly after we move?

What if we buy this house for our daughter and she isn't here to be in it for long? 

And that is a haunting, aching fear to carry. I know it seems irrational, and why in the world would I even think such terrible thoughts, and don't I know that it's silly to borrow trouble that isn't even there? But I can't help those fears from creeping up and gripping me when I least expect it.

I take those fears to my Father, though. He knows my struggles in this journey, and it is no surprise to Him.

Would you rejoice with us in this good news, but also help carry me in this struggle? And if you are local, and can lend a hand to us with moving help, please let me know!

Back home!

Waverly was able to get her MRI without sedation!  I kept her awake all day and then we gave her melatonin right before, and she did great!  

Thankfully, the results were "no new findings" with her brain. If they had found something on the MRI, honestly it would have been pretty bad news, so the fact that there was no change is good. 

But it does mean that we don't know why her seizures have increased. At this point, the only thing we can think is simply that the seizures are no longer responding to the medication. We have increased two of her meds, and will go from there. 

She was able to come home yesterday afternoon, and we are so thankful for that! 

Enjoy a few more hospital pics. 

Our sleepover arrangements. (Not comfortable, in case you're wondering.) 

Heading in to the MRI. 

So sleepy. 

On the way home! 

So happy to be snuggling with mommy at HOME!! 

Seizures and Hospital

So, here we are at the hospital again. Waverly has had a sharp increase in seizures lately, and the past week, especially the past few days, have been particularly hard. After debating what to do (and being very unsure), we brought her in to the ER yesterday to get her checked out and try to get some help. They decided to admit her, and after feeling like I was in between and trying to pacify several doctors with differing views who weren't talking to each other, we finally got a plan.

After having an almost 20 minute seizure last night and needing Ativan through her IV, she stopped. She had many more seizures that night until she went to bed. 

Today has been all about waiting. They have her on the schedule to get an MRI, so we are just waiting for them to have room for her. Some things you can pray for:
-that she can have the MRI without sedation and be still enough for a valid test
-for protection if she does end up needing sedation
-for wisdom/answers in how to help treat her seizures and how to proceed

Tune in!

Tune in to this call tonight (you just listen in) to hear how our family has been blessed! 

Happy girl collage

Heart Thoughts-The Seasons Change

These past 3 years, I've struggled with each changing of the seasons. And it's always been a bit of a mystery to me. Why do I struggle with feelings of sadness and anxiety, with the simple passing of one season into the next? Recently, though, I may have narrowed it down.

Control.

The passing of summer into fall this year has brought with it my normal pensive thoughts, and this time I realized why. No matter what is going on in life, what is happening in or around you, the seasons change. There is nothing that we can do to stop it or slow it down. It simply happens. In one aspect, it is God's grace. He keeps things going.

But it represents for me the fact that a time in life is coming that I simply don't want to face. Having a chronically ill child whose condition will eventually take them far too early in life makes you realize that your time with them is far too short. And when that time comes, there will be nothing that I can do to stop it or slow it down. It will simply happen, just like the changing of the seasons. This season of my life will change, and I will be forced to live in the next, whether I like it or not.

I love fall and the beauty that the colors bring. But I know that winter is coming, with its bitter cold and lack of color. Everything will be slower, darker, colder. And so the challenge for me is always to savor the beauty that is here and now, and not fear what is to come.

And oh, how I long for the day when each moment can be treasured with no taint of sorrow or sickness or pain. When each moment is pure joy and worship. Until that day, I will strive to live in hope and expectation, trusting in His goodness to sustain me through these changing seasons.

"He will have no fear of bad news; his heart is steadfast, trusting in the Lord." -Psalm 112:7

Update-med increase

After dealing with some yucky seizures a few weeks ago, we increased one of her seizure meds (Keppra). Since she's gotten so much bigger lately (up to 36 pounds now! That's up from 24 pounds in February!), we realized she could use more medication. So, we increased her night time dose to start with, which has seemed to help some. We are still seeing more seizures than we'd like, but no big, long-lasting ones like a few weeks ago. At the end of last week, we went ahead and increased her morning dose as well, in hopes of further reducing how many seizures we are seeing. Let's pray that it helps, and we won't see as many!

Seizures

Last Monday evening was a scary one. We had been out as a family with some friends for dinner (at a place where kids eat free-woohoo!). On the way home, my oldest said, "I think Waverly is seizing." 

Sure enough, when I looked back at her, she was. But that's not uncommon for her, after being out somewhere. So I continued to drive home, since we were only about five minutes away at this point. But something in me knew it seemed a little different. So I drove the rest of the way home with one hand on her legs (the best I could reach and "keep an eye on her" while driving). 

As soon as we walked in the door and I got her in, I could tell these were hard seizures. She wasn't having breathing troubles, but in between each spasm and seizure she continued to twitch and tremble. She's never done that before and for that long. 

After a few more minutes, I could tell she wasn't coming out of it. So we got her rescue medicine and had to give it to her. Thankfully if worked in a matter of minutes. But of course afterward, she was completely out of it. I hated how she looked and acted-completely drugged. 

At this point it was bedtime. Instead of taking her to the ER we felt like she'd be better off at home and resting, as long as she didn't seem too compromised with her breathing from the meds. 

She's had a few episodes of harder seizures since that day last week, especially on Friday evening. But thankfully we've been able to avoid the rescue med again. 

Please pray that those seizures stay away and that this isn't becoming a "new normal" for her! 

Here's a happier picture from a couple days ago: 

Heart Thoughts-Is this the name...?

I first heard of it on a radio segment at the beginning of the week. A bad virus that was going around. I didn't think much of it until later that evening when I saw a link online, and read about it being a respiratory virus. As I read that first article, my stomach turned into knots.

"Is this the name of it? Is this what will take her from us?"

I couldn't help but be gripped by fear at what had become a monster staring at me from my computer screen.

I have cried several times since then. The fear of this virus, that starts just like any other cold or sniffle but turns worse quickly. For children like Waverly, this is bad news. And I am scared.

But I am seeking to remember Who holds her, Who has numbered her days before she was even a twinkle in my eye. He loves her and His plans for her will be accomplished, whether that includes this virus or not, as well as the outcome of that.

Lord, help me trust You. Hear

Improvement

I'm so happy to report that sweet Waverly has been improving every day! She's been on her two antibiotics (one for UTI, one for pneumonia), but she's been stable at home and we are so thankful that she didn't have to stay at the hospital to receive treatment for this! She slept most of the weekend as she was recovering, and was on her bipap all day Friday and Saturday. Since then she's done well on her nasal cannula, and hasn't needed much oxygen through that, and is breathing much easier. She's continuing to cough up stuff, which is actually good to be getting it out of her lungs. Thanks for all of you who have checked in with us!

Uti and pneumonia

This is how we spent our day. After a rough night with fever and one throw up, the doctor wanted to see her and then sent her on to the ER for X-rays, blood work, etc. She has aspiration pneumonia and is starting an antibiotic for that, in addition to the one she started last night for a new uti. Thankfully her oxygen sats have been ok although she's had a fever and high heart rate and respirations. She definitely feels bad but wasn't acting too sick so the PICU doctor agreed to let us take her home and treat her here. If she gets worse we will just call him and go straight to be admitted to the PICU. Please pray that she stabilizes more tonight. That her breathing rate and heart rate slows down. And that her oxygen remains good. 

Heart Thoughts- Siblings

They were playing yesterday on a rainy day. Throwing the ball and laughing away, with the typical sibling squabbles that came up occasionally too. And I looked at Waverly laying there in the next room on her mat, and her eyes were talking to me. She even made a few noises. Whatever she was trying to tell me, she was very serious and intent. 

"You want to go play with them?"

So I disconnected as much as I could, hoisted her up, and we went to her siblings and played ball (yes, in the house!). They shared it with her and rolled it to her and helped her throw it. 

Then, the fighting happened. Waverly got selfish and kept holding the ball away from them. "Waverly, give it back!" 

And they'd take it out of her hands. And they'd play a bit more and then "she'd" do it again. She even hit her sister a few times! 

"Waverly, you need to share and be kind," I'd remind her. 

And I had tears in my eyes. Most mothers would give anything for their children NOT to fight and squabble while playing. Goodness knows I could use a break from the older two getting into it about almost everything all the time. 

And even though I was "making" her cause a little trouble, I had to do it. At that moment I longed for things to be "normal". For my 3 year old to want to tag along and play with her older siblings. To have them laughing and playing together, like they were. But I knew that a little squabble would be part of it too. That as a typical 3 year old, I'd have to remind her to be careful and to share and to not be too rough with her sister. So I had her do those things too. Normal siblings play together. Normal siblings fight some too. And for a moment I had a tiny glimpse of what it could be like. 

And they all had a blast. 

Love her!

Family Vacation!

So, to follow up this post, here is what we were able to do instead of a whole-family beach vacation! We took a weekend and went up to the Harrisonburg area. Our sweet friends were gracious enough to let us stay in their home (even though they weren't there!) and enjoy time swimming in their pool and enjoying a few fun things around the area, as well as visiting with friends and family. It was a great and fun time, and the kids were thrilled to have their sister along with them!

We left on July 11, which was free Chick-Fil-A day and also 7-11 day. We grabbed our cow shirts and went by Chick-Fil-A on our way out for some free chicken for lunch on the way there. Then, a few minutes from our friends house is a 7-11, so we surprised the kids with a stop there for free Slurpees! (Kathryn thought we were going to miss 7-11 day and was despairing that she had to wait a whole year before getting a Slurpee-I think she thinks they are only available on 7-11 day! Don't tell her otherwise...!)

This was Waverly's set up for sleeping. Can you find her? 

One of our activities was going to the Children's Museum. Kathryn loved being a weather girl! She was also so cute, pushing Waverly around and showing her things there. 

I was so happy that my sweet friend Brooke and her kids could meet us there to play! We've been friends for over 20 years! (Wow, that makes me feel old!!)

The kids.

Our family! 

Another van selfie. We don't travel lightly.  :)

We are so thankful to have had the perfect set-up for our trip. The house we stayed at was all one level and open so we could all be together, and the pool had a screened porch right off of it so we could have Waverly there when she wasn't swimming with us (I don't have any pics of her swimming!). We were blessed to worship at the church we used to go to and see family and friends. The kids had a great time and Waverly did really well! She had several seizures where she stopped breathing, but we expected that since we were doing a lot of activities with her, which she isn't used to. But she did better than I would have thought, so I am so thankful for that!

Left Behind

I wrote this exactly a month ago today, just after we went on vacation. And I have debated since whether or not to post it. But there's a happy follow-up to it, so here goes. 

---------------------------------------------------

 

We left her behind.

Sometimes, it's hard not to feel like I'm doing the wrong thing. Sometimes, there's just no "good" decision. That's how this past week felt. It was our yearly family vacation to the beach. We at first were planning to take Waverly along, but as the time got closer and we started to make arrangements, it just didn't feel right. A 6 hour car ride, plus camping in a pop-up, just felt like too much to ask of her. 

 

Last year my husband and I swapped places. He went for the first half of the week, drove back home mid-week, and I left to spend the rest of the week. It was not ideal, but we at least felt like we each had some time with the older kids to love on and focus on them, as well as enjoy a little vacation ourselves. But we missed that time together. 

 

This year, because of God's grace and our wonderful nurses, we were able to use some of our respite hours and get 24-hour coverage so the 4 of us could go while Waverly remained home and was cared for. And it was wonderful, but my heart broke the entire time. Johnny and the kids went down on Saturday, and I joined them on Monday. 

 

That afternoon, shortly after I arrived at the beach, the 4 of us walked down there together, and I cried. I missed my girl and doubted the decision to leave her home. What if she would have been fine and it would have worked out, but we left her behind instead? I hate the splitting up that we have to do all the time, and I was painfully aware of it this week.

And honestly, there is an element of shame that I feel.
I feel guilty for the decision.
I feel bad that she was left behind.
I didn't take any "family" pictures at the beach because it wasn't our whole family there.
I felt like there wasn't any "good" decision.
I cringed every time someone said "Oh how wonderful!" when we told them our plans. Because it wasn't wonderful. It was sad. And it was hard.
But I am thankful. And it was also good. This life can be so confusing sometimes. It's hard to know what to feel, because everything has two sides and both are very valid and felt poignant.

Way too long

I apologize for the silence here. We have been busy enjoying summer! Waverly has been doing relatively well. She had another uti and saw the urologist. We now are cathing her every 3 hours during the day and have started a profilactic (preventative) antibiotic daily to try to ward them off. Please pray that that's successful in treating them. 

We have noticed a slight increase in seizures, most notably the apnic kind where she stops breathing. They seem to occur when she's been extra stimulated or tired. But infections and sickness can also contribute to that so it's hard to tell if it's a true increase or because of her recent UTIs.  

Home and another uti

Sorry for not updating before but not much to report. Waverly got home Thursday afternoon as expected. We did find out she has yet another uti unfortunately. So she is on Cipro for that as we try to figure out our next steps in determining why she's getting them so often again. 

pH probe

Waverly just got taken back for an upper endoscopy and pH probe test. The test is to determine if she is experiencing reflux and will need further intervention. The reflux could be responsible for some of her recurring respiratory issues. Please pray for her as she will have general anesthesia and will stay overnight inthe  PICU. 

Even though you'd think I'd be used to procedures and tests by now, it's still hard to let two nurses wheel your baby away in a bed into a room and have to go out in a waiting room away from her. I'm thankful, though, that her Heavenly Father is always with her, not hindered by policies and doors and confined to waiting areas. She is in His hands, even when she's not in mine. 

Always

For 3 years now I've had to turn off the radio when this song has come on. I was so terrified of being the woman he mentions in the beginning. But this morning when it came on I let the song play, crying the whole way through yet again.


There were many times that I did not think we'd make it to this point, celebrating Waverly's 3rd birthday. It's still 2 days away, and as she showed us yet again this weekend, even the next day is not a guarantee.

 
But I am so profoundly grateful that God has chosen to allow us more time with our precious girl than we thought we'd have.

 
But know this: even if she hadn't made it to her 3rd birthday, and no matter what the future holds for her or any of us, we believe and know that always, ALWAYS, our Savior never fails.

And He is with us, always.



(For an interview on the story behind the song, go here.)

Pneumonia again

Well, the little stinker has done it again. Another pneumonia. Right before her birthday. Thankfully we caught it early. After debating Saturday evening whether to take her to the ER or not, we decided to try to keep her home to sleep in her own bed and take her to the doctor Sunday morning. She did ok thru the night but was definitely feeling rough Sunday so we paid him a visit and he said she sounded like she had pneumonia. So she's on an antibiotic for that and so far she's been able to maintain her oxygen levels ok at home on the cannula and bipap. 

Thanks for praying for her!  Pray that she feels better by her party this weekend especially! 

Feelin' rough

Waverly got really junky this afternoon and has been coughing a lot tonight. It's a little before 1a.m. and I'm rocking her right now. I just gave her her second dose of morphine. She's acting very uncomfortable like she needs to vomit so I'm scared to leave her room and she keeps startling awake. Her breathing had settled a bit but her saturations are still low and she's on 5 liters of oxygen (I took her bipap off in case she did vomit so it wouldn't push it back down into her lungs). 

Thankfully nights like these aren't too often, but they are really tough when they come. It's always a reminder that even when she's having a good few days or weeks, her life is just one sickness away from being over. And it can happen so quickly. 

Please pray for our girl. I am not sure if it's her tummy bothering her or her lungs or what. Pray that the meds and interventions help and that she's able to go back to sleep and rest and stay home. 

Formula switch and UTI

Last week we decided to try to switch Waverly to a new formula I've been wanting her to try. It's made from real foods, which I liked. We did two days of half old, half new formula and have had her on the new stuff since. She seems to be tolerating it well. Her stomach is much less distended. She is pooping less, which we will have to keep an eye on and stay on top of. 

We also noticed that her urine had been looking pretty bad when we cathed her at night. So we got a sample taken and it grew ecoli so she's on an antibiotic for that now. 

We've also noticed an increase in seizures, including the kind where she stops breathing. I'm not sure if it's due to being off the ketogenic diet or the uti. So please be praying about that. I hope it's just because of the uti and they will decrease once she's done with treatment for that. 

Happy Easter!

Happy Easter! 

Build-A-Bear

At Christmas time, a sweet friend gave our family a gift certificate to Build-A-Bear. We were finally able to go last week and use it. The kids had a BLAST!  They loved helping Waverly with hers. Afterwards, we all went out to eat at Cheddars. As we were enjoying dinner, Johnny and I realized we couldn't remember the last time we did something like that all together as a family. It was such a special evening. Enjoy some pictures from their special time out.