Thanks-giving and Honesty

Yes, I know I have been pretty quiet here. The truth is, it is sometimes hard to know what to post. What do I write? What do I share? So much of it is the same old, same old. Do you get tired of hearing it all? Much of it is things that I am still trying to process myself. How can I write when I don't even know what to think? And part of the issue is that we haven't shared everything that has been going on lately, so I feel limited in what I can say.

But, here goes.

First of all, Waverly has had a relatively few good weeks. She spent much of this month off of oxygen for the majority of the daytime hours. This is huge, as she hasn't done that well in almost a year! But, she's still a sick little girl in so many ways. So, here's some info for you:

Waverly is on hospice.

We've hesitated in sharing this information for months now, because of the alarm it might cause or the questions it might create. Hospice care is different for children with chronic conditions, though. Generally, a "six months or less" timeline or diagnosis is not required to receive hospice care for children. Instead, if a child has a chronic but terminal condition, hospice can provide another level of support for the family  in caring with the child. Their services allow us to be able to care for her at home more often even in times of sickness, as they will send out nurses to come evaluate, communicate with doctors to get medications to deal with sickness, etc. Their goal is to help support us in caring for our child in a comfortable, home situation as much as possible. We are not opposed to taking her to the hospital for care when needed, though.

Along with that hospice care has come even more focus on her comfort. At their suggestion several months ago, we got morphine to give to her as needed. That was a hard thing for us to accept. In general, ,we don't like to medicate unnecessarily. Of course, with Waverly things are different and we recognize she needs a lot of medication to help deal with her symptoms. But morphine? I didn't want to feel like I was "drugging" my baby. But we don't give it regularly-only in times of respiratory distress when she is struggling to breathe and working so hard. Do you know what it's like to see your child literally panting, ribs showing and chest heaving, just to move air? It's heartbreaking to watch her struggle so. And after one of her sicknesses a few months ago, they told us it was time. Since then we've given it 3 times. Each time it's hard for me.

So. There it is. Our everyday lives. That are not so everyday. Talks about end of life care, comfort for our child, caring for our older two in the midst of uncertainty, fighting for our marriage to remain strong, begging God for more faith to face what no parent ever dreams of facing. How do I share that with you all in a quick little post with a cute picture or a post asking for prayer for yet another sickness that she's dealing with?

Yet, even with all of that, we have so so much to give thanks for.

Each holiday is a celebration for us. A celebration to be all together as a family. Yet each holiday brings with it some grief and sadness. I wonder if this will be the last Thanksgiving we have with her. Will she be here next Thanksgiving? How will we get through it if not? I hold her a little tighter. Cherish our times together. I  hold our older two a little tighter, and my husband as well. None of us is guaranteed the next day. And I think of all the families that I now know who do have to spend this holiday missing their loved one(s). My heart breaks for them, and every "Happy Thanksgiving" and "Happy Holiday" wish carries a sting that hurts deep inside.

And so we continue on, with these dueling emotions. Immense joy, tainted by pain. Cherishing the moment, fearing the future. Thankful for God's grace, and praying for His mercy.

Of course, I can't let this day come to a close without saying THANK YOU to each of you who read, who pray, for love our family so well in so many ways. Thank you, from the bottom of our hearts.

He Answers with a Box

For those of you who know our family well, it's obvious that we are UVA fans (although my husband and I proudly went to JMU-go Dukes!). Johnny has been going to UVA games since he was a young boy. In fact, his father has not missed a home game since the 1980s! We've attended games together as a newly dating couple, as an engaged couple, and as newlyweds. I've gone during first trimester queasiness up to being 9 months pregnant (with Jackson, who was born in September-thankfully not on a game day!). We have taken our children, the youngest starting at 5 weeks old. It's what we do as a family. 

Waverly's first fall, she was able to go to a few games. She was still so small and more easily portable, and relatively healthy. Her seizures started in September of that year, so they weren't as big of an issue her first couple games. The only thing we had to contend with was her feeding. She was so small we could just hold her during the game and hook her up to her feeding pump when it was time to eat. 

Last year, however, she was unable to make it to any games. It just didn't work out with weather and her health. We were disappointed but also want to be careful and cautious with her and her health. 

So far this year, she hasn't made it to any games either. We were hoping to try to take her. But every time it was a possibility it was either too hot, too cold, or raining. We also knew she couldn't come down to our normal seats as easily being much bigger this year and with more equipment/oxygen, etc. So we figured if we took her we could have one of us sit in the small handicap area at the top of our section. Not ideal, but we wanted to be able to include her in something that remains a big part of our family. 

However, as I mentioned, the circumstances just were not working out for us to take her. I figured she just wouldn't go again this year. Not a huge deal, but I was also sad not to have her as part of our family memory with the games for yet another year. Last weekend, though, my heart strings were pulled when Jackson, who's 5, asked if Waverly could come to the game that day. When I told him no, he was so disappointed. He really wanted his sister there. Since he was only 3 the last time she'd attended a game, it was likely he didn't remember it. Since Waverly had such a good week last week, I started thinking...

On Thursday evening I mentioned to Johnny the possibility of taking her. She'd had a great week being off of oxygen most of the week. The weather was looking beautiful. However, I'd been dreaming since last week about what it would be like if we could watch the game from box seats (in a suite). I knew that'd be best for Waverly, since it'd be more quiet, she'd have a place to go in from being outside if it got too warm/cool/sunny. We'd have a place to charge some of her equipment since it needs plugged up during the day to charge the battery for travel home. And, we'd get to be together as a family and watch the game together. The kids could cheer the team with their sister. 

Well, as you may have guessed, God provided that and more for our family. Johnny got a text from a friend Thursday night that something may be available. Yes I cried. Multiple times over it all. It's not about football. It's about family memories, especially that the older kids get to have with their sister. They were able to show her the band, move her hands to the cheers, sing the national anthem with her, tell her about the first downs, and just love having her there and actually sitting beside her at a football game. Enjoy some pictures from our day. 

Thank you so much to those who prayed that something would work out for us to be able to take her. Thank you to the generosity of those who made the amazing accommodations happen. And thank you God for another wonderful family memory! 

Crazy week

I am a little late in posting this. For some reason it can be difficult to update on time!  Two weeks ago Waverly got really sick with a respiratory bug on Sunday and Monday. She had a really high temperature and high respiration rate (over 70 breaths per minute!). We thankfully were able to get some meds started and antibiotics and she stabilized and we were able to keep her home. Within 24 hours, she was smiling while on the bipap. Silly girl!  

Then on Thursday afternoon, we noticed she had a blown pupil, in which her one pupil was dilated and non- reactive to light, while the other one was fine. Although she was acting fine, after much deliberation, we decided to take her in to get checked out and get a CT scan. I was honestly pretty scared because of the possibilities (doctors were saying things like brain bleed, brain herniation, and making preparations). 

Thankfully, her scans looked fine (for her...) and we think she may have gotten one of her nebulized medications in her eye, causing her pupil to dilate. They kept her overnight in the PICU to observe her and make sure though. 

Of course, when you hear things like the doctors were saying and wondering if "this was finally it", it was hard to process. I am thankful that we didn't get the bad news they were fearing and that we continue to get to enjoy time with our sweet girl. 

The Difference of a Day

On Sunday night Waverly started acting "off" for her. As I went to lay down for bed, I heard a different type of noise for her over the monitor. When I went in her room, she was breathing very fast (60-70 breaths per minute), grunting, heart rate was high, her skin was mottled, and her temperature was rising quickly. I gave her Motrin for her fever and tried to determine if she was seizing as well. I stopped her feed and took off her bipap in case she vomited (because she was acting like she might). And we rocked and prayed. Needless to say, I didn't sleep much that night. Her fever took a while to come down. The next morning, yesterday, she did ok for the first part of the day. But by the afternoon she started to go downhill again. We got her hospice nurse to come out too and got in touch with the doctors and put her on an antibiotic and have done what we can to keep her home. So far she's done better today. No temperature and breathing much better. She's been sleeping and on bipap most of the day. But we are giving her a break right now before bedtime. The first pic is her yesterday and the second one is her this evening. Thanks for praying for her and us during this latest sickness. We are thankful for the reprieve we got for the month of September.

It's just so hard....

...being this cute. 

Enough

Tonight I am grouchy. I've had enough. This poor child's bowel issues have gone on long enough. I just spent a good 5 minutes literally pulling chunks of stool out of her. And we've been doing this for almost two weeks now. I know it's got to be so uncomfortable for her. I'm mad that there isn't an answer why and we can't figure out something better to help her. I feel bad that I feel nauseous doing it when it's so painful for her to have to experience. I'm tired of it all. Yes, I'm venting. Will you please just pray that the right doctor would hear and help us figure this out?  Thankfully she's not miserable all day with it or anything. Just uncomfortable when we need to "check" and "help". 

Tummy Issues

Please pray for our girl tonight. I'll spare you the yucky details, but she's having some tummy issues (bowels specifically) and we are having to give her lots of extra "hands-on" help and she's still got more inside her that we can feel when we press on her abdomen.  :(  She's definitely uncomfortable but not having a back up of feeds in her stomach or anything, so we are hoping we can get her cleaned out and "moving" on her own as much as possible and avoid more invasive measures. Thanks!

Heart Thoughts-Heaven

Since Waverly has been born, I have noticed a strange phenomenon in my own life and perspective. I see so much more pain than I ever have noticed before, but I also see so much more beauty as well. Every little thing, like a smile, her being awake, time together as a family, hold so much more meaning than ever before, because I am more keenly aware than ever that it could all change in a moment. There are times that my heart just sings from the seemingly small things.

However, this morning I woke up with a profound sadness in my heart. Not a self-pity, not a weariness, just a sadness in missing "something." I feel incomplete. Not quite right. And I realized I am missing HEAVEN.

There are times that I realize as I go day to day that this.is.not. how it's supposed to be. There is MORE. So much more.... The beauty that is here all around is tainted. Even the most beautiful things. And it's hitting me hard today, a longing for heaven.

For those who read this blog, if you only remember one thing ever, remember this-THERE IS MORE. All of this is not in vain. This is not the best that it gets. The whole purpose of all of this life is for a higher purpose. I'm not talking about some theoretical "higher purpose" that sounds all lofty and mysterious and "nice." It's GOD'S purpose. For HIS glory.

We were made to glorify Him. Either we do or we don't. Just as in life, there are consequences for whatever path we are on, to glorify Him or not.

Oh I fall short. We all do. None of us is perfect. But the amazing thing is that that is the point. We can't do it fully on our own. We NEED Him. It's called grace. Redemption. Mercy. JESUS.

If in all of this we are not clinging to Him and pointing others to Him, then we have failed. It's not about how we are such good people, or how cute Waverly is, or how special we are to have her, or how many lives she's "touched." Even though those are all good and nice, there is more. And my soul is feeling that this morning. I am not home. This is not home. This is not how it's supposed to be.

And I can't wait for it to all be made right again. Not in an "I can't take this anymore" way. But because this morning, while I still see and delight in all the beauty around, I see a lot of ugly too. Ugly world. Ugly sin. Blemished, tainted, broken. But one day, it will all be made right again, and I can't wait to worship Him in glory. Worship Him with me now, today. And let's worship together forever in heaven too.

Come, Lord Jesus, come.

Heart thoughts-Doing a Good Job

Apparently this is something I've needed to hear the past month or so. "You're doing a good job."  Truth be told, it often doesn't feel that way. Don't get me wrong, most of the time I don't feel like I'm failing miserably or anything. But I am a perfectionist. And even though I can be honest with myself and see the ways that we are doing well, there are plenty of things that I see that are also in need of improvement. 

Yet these words keep coming to me from various places: the PICU doctor; a friend; my mother; a trainer at the gym; a new nurse in training. All the same: "You're doing a good job." 

But I wonder what they would think, what they would say, if they saw me day in and day out. If they saw my heart, my mind, my attitude. There is so much to do here, and so much that can be done. And often I just ignore it. There are always papers to file, medical info to be updated, supplies to be organized, treatments and medications to be researched, clothes to wash and fold, supplies to be changed out and ordered, new therapies and gadgets to call about, appointments to be rescheduled. The list could go on and on. Slowly I'm learning to tackle things one at a time. And of course those things that are high priority get taken care of first. But if I had a nickel for each time I repeat to someone "That's on my list of things to look into." then I'd have a lot of nickels. 

I question how I spend my time. I question my time spent working, my time spent at the gym or running, my time spent out taking care of other things. I question the treatments we've chosen or not, the appointments we skip and the ones we make her go to, the decision to take her out of the house to an event or the decision to leave her home. 

The truth is, even though I know we are doing as good of a job as we can, it's still hard. As a parent, there will always be a hundred things a day we can question. With Waverly, there are more like a million. 

And even though I know we are taking the best care of her that we can, God must be seeing something that I don't even fully realize is there. And He is using others to repeat to me time and again this past month in particular, "You are doing a good job."

A sweet face

Had to share this sweet picture from a few weeks ago and then a cute pic from last Sunday at church with her cute piggy tails. 

Quick update

I apologize for being a terrible blogger lately. We've just had a lot going on, both with Waverly and with life (the 2 older kids starting school, etc.). After my last post Waverly straightened herself out a bit, and had a pretty good week and a half. Every day is its own day, and she likes to throw random issues at us day-to-day, but in general, she's done pretty well after her little episode then, so we are thankful. I rocked her at bedtime like I usually do tonight, and she actually fell asleep in my arms and stayed asleep when I put her down, so that was sweet! (Lately she's been a stinker and won't settle down when I'm rocking her or she'll fall asleep but then wake right back up after I put her in bed!)

Ups and Downs

Waverly has been up and down this week, but today had a really rough day with lots of coughing and getting up gobs of junk (technical terminology there). Her o2 sats have been all over the place (as she's moving around mucous and mucous plugs in her lungs, presumably). Her heart rate has been elevated some, and she was working really hard to breathe this evening-her little chest was really pushing and pulling air. Please please pray for our little one, for her comfort, for wisdom for us as her parents.

Back home

We are happy to report that Waverly came back home yesterday afternoon. She's got a new medicine on board-tobramyacin (an inhaled antibiotic) and is on another strong antibiotic. We are trying to see if we can help get her lungs cleared out a bit more. We also got her bipap better situated (we had a bad connector on it that was making it less effective than it should have been), so we will be using that more consistently at night. 

We are glad it was a quick hospital stay, but it was still quite difficult as a lot of difficult things were brought up. Please pray for our hearts as we walk this road. 

Back in PICU

Waverly is back in the PICU again. She'd had a sort of up and down week, and was coughing up a lot more mucous plugs, but nothing terribly alarming for the most part. On Thursday night her sats were all over the place (again, not that uncommon), but late at night she seemed more "off" than normal, and then she vomited and started running a fever. And although her sats were actually better, her hands and feet were blue. So we decided to go ahead and take her in to the ER, where they admitted her. Her lungs don't look worse than they typically do, but her typical is pretty icky. So we've been doing lots of breathing treatments and deep suctioning on her to try to get the nasty junk out, and she's been on IV antibiotics. We also just started an inhaled antibiotic via the nebulizer to see if that helps clear up her infections and make it easier for her to breathe. We've had her on bipap more here, and have been working on adjusting the settings to make it more beneficial for her and work better at home. 

The sad thing is, we had planned to go away for the weekend for a "family vacation". As you may recall, we had to split up for our vacation this year, and that was hard on my mama's heart. So we had planned to go this weekend to a friend's house about an hour and a half away, and talk all THREE kids. They have a pool (all my kids really care about), so we would go swimming (what you do on vacation, right?), hang out as a family, and visit with some friends in the area. The kids were so excited, and I was excited to have an opportunity for our WHOLE family, all FIVE of us, to do something together where Waverly could be a part and mommy and daddy could be together with all the kids. But because of this we couldn't go (Johnny went just for the day with the big kids because they were so disappointed to have to miss). I really wanted that memory for the older kids, instead of having one more instance where one parent was with them and the other parent was with Waverly because she was too sick to come. But, in all this, I know that God is in control, and that even though I *think* my plans would have been a lot nicer, He KNOWS what is best and He loves us and is GOOD. 

I'm glad Johnny was able to still take the kids for a little day trip. Hopefully they are having a great time, and we can still try for something some other time. Instead, we had a family pizza party in the PICU last night (see the last pic).   :)    It does stink that when I get home I have a lot of unpacking to do from a trip that didn't even happen!

In the ER feeling icky.

Snuggles with a tired mommy (3 hours of sleep).

Family pizza party in the PICU!

"Talking" face

The other evening Waverly had a lot to say. Her eyes were very expressive and she seemed to have much to tell me about her day and the trees outside as we looked out the window. 

New Business and a $10,000 Bonus??

So, as I mentioned in this post announcing my transition out of full time work and back at home more, I have recently started a home-based business in order to help my family financially. What's really cool about the business is that I also get to help others in and through it as well! It's called It Works! Their best-known product are "those crazy wrap things", but we also have many other health and wellness products. I have tried and use many of them myself, and they are excellent. It Works! creates naturally-based products that are made with organic, non-GMO ingredients. I have really enjoyed sharing about these amazing products with others, offering hope and health to friends and family. I don't want to turn this post into a commercial, but if you'd like more info, please comment here or message me, or check out my website: https://cristens.myitworks.com 

Most of those connected with me on Facebook already know about it, but I wanted to make sure to share with you all too. My main reason for starting this business was in hopes of finding a way to make a little income yet still be able to stay home with Waverly. Working full time was one of the hardest things for me to do with leaving her every day, and I hope to be able to continue being home with her more from now on. So, as people who care about and love our little girl, I wanted to share. I am up for a big $10,000 bonus this month, and would love to get there, but I am in need of a few more people to check it out. Thanks in advance, and thanks for sharing in our excitement in our new adventures!

Announcement-Transition back home!

As many of you know, I (Cristen) have been working full-time since the middle of September. While my job has been amazing and we know that God provided it, it has been so difficult to maintain such a schedule in addition to all of Waverly's needs (not to mention the two older kids!). We've been praying for a while for God to provide a way for me to be able to stop full time work, and He has answered. As of the end of this month, I will no longer be working full time. While it is a bit scary and a huge step of faith, we really feel the Lord leading us in this direction. Waverly's health has really declined since last fall, and I have been feeling the pull to be home with her more, able to go to all her appointments, etc.

I will still be able to do some contracted work through my current employer (I had originally requested being part-time, but they did not have a position available for me part-time at this time, but were gracious in offering me the opportunity to do contract work, as they have opportunities arise).


I've also started working a home-based business that has been a tremendous blessing to our family. I will share more on that in another post to come soon!

I hope to be able to start blogging a little more frequently as well. I have so many thoughts and things to share, but by the end of the day, I am just too tired to get it out. Be on the lookout for a plethora of posts once the juices start flowing again! 

Cipro started

Oh, I have so much on my heart and in my mind to write about. But I simply lack the ability at the end of the day to create much. Soon, my friends, I promise I will be more present soon.

In the meantime, just a quick note to let you know that we did start Waverly on the antibiotic cipro on Saturday. She started seeming like she wasn't feeling well on Thursday, so we watched her and waited to see what she'd do, and by Saturday it seemed like she was getting worse. She's acting like she's feeling better now, and we've even seen some smiles again recently, so I think it was about time. She saw the pulmonologist yesterday and he was pleased with how her lungs sounded, for her, this time. That was a welcome surprise to hear!

Thanks for your continued prayers, as always. (We can't say thanks enough!)

Chest x-ray and bugs...

A few weeks ago, we took Waverly in for a chest x-ray, because her pulmonologist wanted her to have one when she was relatively healthy, for her, to see what a "good" x-ray looked like (to compare with when she's sick). The result of that x-ray was not great: she still had several areas that were hazy and streaked, including a couple of bigger areas. So he ordered a culture of a sputum sample to see if any bacteria grew out of it.

We just got the results of that last week and it ended up growing three "bugs": the bacteria pseudomonas (what used to infect her with the UTIs so badly), klebsiella, and staphylococcus aureus. This isn't good news, and I'm not quite sure why she's not really sick with it. But the doctor called in the antibiotic cipro for us to have on hand and give her as soon as she shows signs of more sickness. The issue with cipro is that she's used it a couple of times before, and every time we use it, it's one less time that we can use it in the future, because it will eventually stop working as the bacteria becomes resistant to it.

She's had a ton of seizures today, and is sounding a little more junky, so I'm kind of waiting to see if she's starting to get sick again. Time will tell. She's been getting pretty sick with respiratory stuff about once a month, so in that regard, it is about time for her to get sick again. Of course, we'd love for her to prove that time table wrong any time, but recently that's been her trend.

Please pray with us regarding this latest news. It's been kind of hard for me to hear, for some reason, as I worry that it's just one more step in the wrong direction for her. Pray that we would trust the Lord, no matter what the future may look like, that we would have hope, and mostly that He would be glorified.

Vacation...

Well, it was a whirlwind, but vacation went well. Waverly enjoyed some special time with mommy the first part of the week while everyone else was gone, and then with daddy the second part of the week once we switched places. On the other end, both Johnny and I enjoyed some special concentrated time with the big kids while we were each able to be with them at the beach. I loved being able to pour into them, and not have to worry about splitting up or if something would be ok for Waverly or rushing back to get to her and relieve the other person. We are still sad that it had to be like that, but we feel like it was best for everyone. Especially since Waverly ended up sick on Tuesday (the day before I left to go down there)! She ended up getting better by the next day thankfully, as I was a mess for a while about the prospect of leaving her home sick (even though I knew Johnny would be with her and would take great care of her). I'm glad she cooperated and allowed me to enjoy my time away though!

Everyday Life

Sometimes it's just hard. The seemingly little things you would never think about until you have to face them. Things that most people take for granted in everyday life. Like playing outside with your kids. When just one of us is home with all three kids, we have to weigh the options. Take the older two outside to play, and risk Waverly getting very sick from it from breathing in the pollen (and having to miss breathing treatments since they are so frequent), or make the older two stay inside the whole time, watching the beautiful day from the window? We can never do family errands together, unless we have a babysitter for Waverly. Occasionally if we are out and have her with us, we may make one stop, but that is very rare, because it is so much to get her in and out and it's hard on her to be out for very long. So, again when we have no nurse at home with Waverly, if Johnny and I want to go check something out together, we have to wait until someone is available to watch her. You can guess how many people are able to help us out with her. Now that it's nice out, there are lots of things happening in the evenings. Even simple things like neighbors outside hanging out and kids playing until later. The nurse leaves at 4:30, so we are left to decide which one of us stays in with Waverly and which one goes out with the kids. No more whole-family time outside until late in the summer evening. Even if we did decide to risk it, she needs to eat via feeding pump around 6:00 and breathing treatments start around 7:00. We can move that back a bit but it also moves back the rest of her nighttime care like cathing, etc. It just gets so complicated.

Family vacation. We both felt it best not to try to take Waverly this year. And it breaks our heart that our "family" vacation won't be our whole family. And what's more, like most things we seem to do now, it will be split. Johnny will go for the first half, then he'll come back, and I'll go for the second half. Because even though we have daytime nursing care, we don't have 24/7 nursing, so we can't leave her with someone and both be at the beach together. We won't be able to enjoy together the sound of our kids playing in the ocean or building a sand castle. And I worry about them, not seeing us together with them, not having their sister with them.

Even now, whenever we go somewhere, they usually ask, "Who's staying with Waverly?" because they know she doesn't go out often. I don't want them to disassociate her with our family. Not that they do, but they just automatically assume she will stay home from everything since she usually does. It is so hard to know what the right thing to do is.

Park trips. Church softball games. Gardening and outside work. Grocery store trips. All of these become big decisions as to what we will do, split up again or risk taking her out. Contribute to the separation or potentially put her health in jeopardy. It's just hard. And although I know some people have it even worse, and have had to face these questions for much longer, and have more to face than even I know or realize, it still just stinks. But it does make those family outings that much more special. The kids love it. And even though we are nervous about how Waverly will react (will she seize from overstimulation, cry all night like she often does from exhaustion from being out, get pneumonia again from exposure to who-knows-what), we try to soak up and treasure those sweet moments. So even if it just seems like a routine morning at church, or a family dinner out, or a trip to the park, if you see us all together, realize it is a very rare and special moment for our family. Turning ordinary times into extraordinary.

A few pictures lately

Life has been so crazy and busy. I've had many posts and thoughts to share but simply run out of time and energy by the end of the day to share. But I realized I had some cute pictures that I at least could post!  

Waverly got some balloons for her birthday party (post to come) and LOVED looking at them when we brought them home. They stayed close to her side!

Sweet time with brother. 

She was less than thrilled the other night with her breathing treatments and had this face the whole time. Even with a grouchy face she's super cute!

These two are from this morning!  She isn't smiling a lot but we can occasional get some sweet smiles in the morning and then again at night when she's in bed. 

TWO YEARS OLD!

A birthday we weren't sure we would see with Waverly-TWO! We are just so amazed at God's goodness to us to allow us this sweet and precious time with this girl. Enjoy just a few pictures and some information about her over the past few months...

We think she is entering her Terrible Twos. She will often set off her pulse ox alarm or pull some other attention-grabbing trick (like sneezing so hard she screeches beforehand) when we are focused on other things or doing something that is about someone else. Or she will just have a seizure. It's happened enough times now that we're not sure that we can continue to call it coincidence!

This is a typical Miller-Dieker face. How cute are her sweet cheeks, her little nose, those lips?

We are so blessed to still be able to see her smile. Although it's not very consistent, and we may go weeks without one, she will flash us these huge grins and we just go crazy over them every time. We never tire of seeing her smile!

This girl is loved by her siblings. They love to hold her, play with her, talk to her, kiss and hug her, and even tattle on her sometimes!

 Did I mention how much I love this face??

Waverly has gotten quite spoiled lately to her mommy. She loves to be held and snuggled, and will often fuss if she is tired and needs to go to sleep and wants to be held to do so. But several times recently she has been quite fussy, and whoever has been holding her has not been able to comfort her. As soon as I picked her up in those times, she has settled right now and gone to sleep. I love it and will take it any day! She also gets rocked to sleep most nights, and I'm ok with that "habit" as well! 

 She's enjoyed some outside time and sunshine some, although until the pollen gets a little better, we've had to limit that time since she seems to get sick often afterwards. But you can see how big she's getting here in this picture.

 Waverly has experienced a lot of sickness and setbacks these past 6 months or so. She's had pneumonia several times, several hospital stays, and lots of medications. We try to keep her at home as much as we can, which means a lot of extra treatments and work. But it's worth it for her to be home with us and our family to be together. She's getting a nebulizer treatment here.

 This is her cough assist machine. It helps to mimic a cough for her, and gets the mucous up out of the lungs. She HATES it, but it's good to get the big plugs of mucous up, especially when she's got pneumonia or is having desaturations (low oxygen levels).

 Of course, with all the sickness comes lots of suctioning as well. She's holding her suction machine close.

 She loves to play on the iPad with her big brother and sister and watch things on it while they play. They will sometimes take her hand and help her touch the screen to play the games. I love seeing them interact with her and involve her.

A few stats about Waverly these days:
-She is about 32 inches long, which is in the 25th percentile.
-She weighs about 22.5 pounds, which is no longer on the percentile chart.
-She takes around 15 medications (including supplements) each day (most of them multiple times a day). Yes, that's a lot.
-She still eats every 3 hours during the day (eating takes about an hour each time) for 4 feedings each day, and continuously overnight, all through her gtube.
-She usually goes to bed around 8:30 and gets up for the day around 7:30. Although she is not necessarily sleeping that whole time. She often wakes up during the night or early morning, sometimes more than others. Other nights she sleeps all night just fine. We never know!
-She uses her bipap for at least a few hours most days, and sometimes sleeps with it all night (when she tolerates it).
-She is on oxygen still all day, anywhere from 1/2 liter to 3 liters depending on how she's feeling. Occasionally she will tolerate being off of it, and we try that as much as she will tolerate it.
-She is still cathed every night to empty her bladder, and gets her blood sugar checked every night as well.
-Her seizures are better, but we still see them more often than we'd like. When she's sick she usually seizes several times a day. When she's healthy and doing really well, she may go several days without any.
-She had 4 hospital stays totaling 13 days and several ER visits this year (and too many doctor appointments to count!).

Waverly, we are so blessed by your sweet spirit, by your strength. You smile lights up those who are blessed enough to experience it, and your eyes are so deep with a knowledge that goes beyond my ability to know and understand. You, little girl, share so much by not even saying a word. You love unconditionally, you give sacrificially, and you remind us of what's important in life, of who we are, and of Who God is. You speak of His goodness and of His grace with your life. Our hearts break when we see you hurting, struggling to get the next breath, seizing and out of control. We pray that God spares you of some of that pain, and wish that we could take it for you. You teach us to long for heaven with everything that is in us, for a time when you will be perfect and happy and whole, untouched by the fallen nature of this world. Until that day, we pray that your life shouts of His goodness and glory to all who hear of you, that God would be glorified, worshiped, and praised. We love you baby girl!

For related posts see:
Birth Day Pictures
The Beginning 
Diagnosis
One Year Old! 
One Hour Conference Room Meeting
I Don't Want It To Be Real

Pneumonia

This post was from Saturday, May 4th.

Waverly ended up at the ER yesterday evening after struggling to breathe again yesterday afternoon. Her tummy was a little distended and her sats were all over the place, and she was requiring extra oxygen. They did a chest and abdominal X-ray and determined she has pneumonia again in her lower left lobe this time. They started her on antibiotics and her sats stabilized, so they gave us the choice to stay for the night (they had a room ready for her) or to take her home. Since she was doing better we opted to come back home. She did great overnight and we even got some smiles today. She is quite the little stinker! Please pray for healing for her lungs as she battles this once again.

Sick Again

Waverly woke up very early Tuesday morning a very sick girl. Her monitor went off around 3:00a.m. and no amount of oxygen via her nasal cannula would get her sats back up. So we put her on the bipap. She was on 8 liters of oxygen through her bipap (the max we can do here at home), and her o2 sats were in the low to mid 80s. It was a very scary couple of hours for us, as we debated what to do and what the consequences of our actions would be. We knew that if we took her to the hospital, she would likely be intubated and placed on a ventilator. Thankfully, after we administered some early morning breathing treatments, her saturations came back up enough that we felt like she could stay home a little longer. Later that morning, around 8:00, her fever started. Once again, that thankfully came down with treatment (sometimes she doesn't respond to treatment for a fever).

In those early morning hours holding her and rocking her and seeing her struggle for air, I realized that even now, just a week away from her birthday, she still may not make it to two years old. Things can turn around so quickly for children like her, and in one instant she can go from seeming pretty stable and healthy (for her), to very very sick. It was the most scared I've been for her in a long time.

We are grateful that she had about a month in between these last respiratory illnesses, and are hopeful that if she can weather this pollen, she will be more stable for a while.

Mommy's girl

Lately Waverly has been quite the mommy's girl. She will fuss and complain when she's sitting in her chair or if someone else is holding her, and as soon as I get her in my arms she will snuggle in and go to sleep. She likes for me to hold her with her head on my right arm. Simply put, I love it.

Chats with Great Grandmom

Happy Easter

Although Waverly was too sick to go to church today and to dinner with the rest of the family, I still made her dress up for Easter. We enjoyed family time and remembering our risen Lord, and rejoice that with His resurrection we have hope of new life in Him!

Haircut!

Waverly got a much-needed haircut a couple weeks ago. Thanks so much to the wonderful Sherry, who has taken care of our family's hair needs for years now (and even longer-she's cut Johnny's hair since he was a child!). She holds a special place in our heart, as she's given each of our children their first haircuts as well. Thanks Sherry for helping make our girl's hair fabulous! 

 The finished product-she has some sweet natural curls that are just so cute! The older two have no curl whatsoever, so it's sweet that she is unique in that way!

 This was before-long (and stringy!). It was fine for about 3 minutes after her bath, but then after laying on it, it would get super matted and tangled. Having it shorter makes it much more manageable now!

 Another before pic-with curls.