Apologies

I am so sorry it's been so silent on here! The Blogger app on my phone keeps crashing when I try to write a post, and truthfully, I am rarely on the computer these days! (The benefits and vices of technology literally at our fingertips on our phones!) And since I prefer to do posts with photos, and all my photos are on the phone.... Well, you get the point.

Also, there's not a lot new going on to update about as far as daily stuff. Waverly continues to struggle with seizures, and we don't have them well controlled still. But we are managing ok with them. It would be great to see her go an entire day or even an entire week without one, though!

We have been doing gentamyacin bladder washes every other night, and that seems to have helped to keep her UTIs at bay a little bit. So we are thankful for that.

In the meantime, I have tons of fun, cute pics to post of her. I will keep trying to see if the app will work, or see if I can get pics on the computer and then post! Thanks, as always, for your prayers!

Halloween!

How great are these Halloween costumes infound this year?!? 

Bad bad seizures

This poor girl has had a rough day. It actually started last evening, with a long, bad seizure, and then many seizures through the night. Today, she's either been seizing or sleeping. Prayers are appreciated as we try to help our baby. 

Update

As the summer comes to a close, we are enjoying the reprieve from the heat! I figured a little update was in order! There's not much new to report. Waverly has continued to struggle with seizures every day. She has as many as 10 (or more) that we see (and who knows how many we don't see). And that is episodes, not necessarily individual seizures. Sometimes, she will have several spasms within each episode, lasting up to 30 minutes! (One time I counted 17 spasms in just 1 minute during an episode.) 

Three-and-a-half weeks ago, we started a new medication to see if it will help decrease the seizures. So far, we haven't seen much improvement. But I'm just hopeful that we haven't found the right dose for her yet. So we still have some room for improvement. 

We also just recently checked her urine again, and it continues to grow bacteria (e-coli). At this point we assume she's colonized with it, but that makes it hard to tell when she's truly got an infection. We did decide to go ahead and treat it this time, since she's had it a while, to see if that helps decrease her seizures. After this course of antibiotics, we will then begin a treatment called bladder irrigation, where twice a week we will inject an antibiotic solution into her bladder via a catheter to try to help keep the bacteria at bay. The issue we are having is that the bacteria is now showing resistance to several common antibiotics, so any time we treat now, we run the risk of more resistance to where it becomes difficult to treat. That's a scary place to be. 

One big thing that happened this summer is Waverly lost her first tooth! Thankfully, I saw that it was hanging on by a thread and was bleeding a little bit, so I got a tissue and gave a little tug and it came right out! It's a small thing, really, but I was so glad to be able to be there and not miss that little milestone. When you have a child who really never hits many milestones, something as simple as losing a tooth can be a big deal! And it was age-typical and everything! 

She is still trying to decide what to spend her tooth fairy money on ($5 for the first tooth is apparently the going rate these days!!!). 

So that is the update for now. Nothing major, but still lots to figure out with her! 

It is Well

When your child is seizing for the 8th time today, with a look of awful pain on her face, and It Is Well is playing on her iPad in the background, it really challenges your faith. Yes, God, it is well. I don't understand it or how it can be well. But I know with You it is well, or it at least will be one day. Until then, have mercy on her. Help her not to feel the pain that her face seems to communicate. Give us wisdom on how to help her. Give us strength to walk with her through this and keep our hearts from breaking completely. Help us to trust You when it seems impossible. Give us faith. Glorify Your Name.

Summer smile

Psalm 121

I sat outside last night and read this to/with Waverly, and saw it in a whole new light. To read about how God watches over your life and protects you to a child with a terminal condition... No, it doesn't make any sense. Yet I know it's true, because it's in His Word. I will never fully grasp the ways of God, because (this is me being honest right here), it simply makes no sense that a child like Waverly should suffer as she does. But I know I can trust Him, that He lovingly cares for her and holds her in His Hands. And that last verse? He watches over both her coming and her going. Y'all, it's hard not to live in fear of the future when you know that time with your child is limited. I've never read this verse in this way before, but it struck me. That He was there watching over her when she came, and will watch over her when it's time for her to go. I often live in fear of that time, but after reading this and seeing it in a new light, I know that I can trust Him when that time comes too. 

In the dark

Sitting here in her room in the dark, by the light of her ventilator, watching her because although nothing is obviously wrong, she's just been 'different' the past couple of nights. I don't know if she's just getting her days and nights mixed up, if seizures are to blame, or if there's something more. But this, this is part of what it means to be a special needs mom. This is the part that rarely gets shared, one reason being that it's simply too dark to even hardly see. It's moments like these that can seem the loneliest, when no one else is up or realizes that this is a regular part of what it means to care for your child. It's moments like this when often, the night turns out fine, but you know that one day, it won't be. And it's times like this that I think of all the other people who are in similar situations, who feel alone in the darkness, and pray that they realize they are not alone, and that they know that someone somewhere is praying for them. 

Five!!!

What a special day today is! Our sweet girl is FIVE!! Today is also Mother's Day, which it was also Mother's Day the year she was born as well! We are so so thankful for our sweet Waverly, and to be able to celebrate her birthday once again with her! This past year has been so enjoyable with her. She has really grown and seems more like a "kid" in many ways than a "baby". (Although she will always be my baby!) 

Some highlights of this past year include school once a week at our house, therapies at home as well, going on vacation as a whole family to Great Wokf Lodge, and of course nightly snuggles. She's remained pretty healthy, and has avoided the hospital pretty well. She got her gtube replaced with a GJ tube, got a new wheelchair, and can stay on her stander for up to an hour! One big accomplishment this year was receiving the title of Little Miss Wheelchair Virginia! She was so excited and proud of herself! 

Some of her favorite things are still trees, wind blowing, music, squeaky noises, silverware clanging, and of course her family. 

Health-wise, she's had a fairly good year. Her biggest struggles have been UTIs which we are still trying to figure out. She's also still struggling with seizures. 

We are starting to realize we need a wheelchair van for her soon. Her new wheelchair is too heavy for me to lift into our van by myself, and we need a safer way to transport it too (with official tie downs). So we are hoping to work on getting one for her soon (if you know of any resources, please let us know!). 

Once again, thank you to all of you who faithfully pray for our girl, and support our family. We couldn't do this without you! 

Making her "silly face". 

Bedtime prayers with daddy. 

Trapped

This is me. Hiding out in my room. Letting you in on a little special needs mom secret. I'm trapped. Here's how it happened. 

I wasn't feeling well this morning. I got up and took my kids to school, and then came back home. Most normal people would lie down for a while, or rest on the couch. But Waverly had school this morning. Which means her teacher and the assistant are here. So while I am able to lie down in my bedroom, I still hear the bustle of people in my home. It's not quiet or peaceful. I feel stuck in my room because I can't go out, or I'll have to interact. I'd love to heat up my coffee, but I feel like I can't. I just don't feel up to interacting right now. 

So although I'm resting, it's not exactly restful. 

This doesn't happen often, but it sheds light on what it's like sometimes. I can never fully retreat in my own house. There is ALWAYS somebody here. And if not, Waverly is always here, and I've got to be keeping an ear and eye on her, so I can't fully check out either. 

For 5 years it's been like this. Imagine how exhausting that is for the brain! I am in no way complaining about the nursing care we receive or the school services she gets. But sometimes the reality of what life looks like for us even in the small things hits me, with how different it truly is. 

Happy Easter!

This morning, as we watched Waverly have 10 minutes of seizures, it hit me once again just how important Easter is. Without Christ's resurrection from the dead, He would be just as powerless as any other person. The fact that He was raised meant that not only did He pay for our sins, He defeated death! He won! 

Daily we experience the consequences and pain of this broken world as we watch our sweet girl's body fight to stay alive. But thanks be to God that this is not the end of the story for her. As I spoke over her this morning, Jesus has won! This is the worst it will be-complete Wholeness awaits her one day. We have Hope because of His resurrection! And for that, we praise Him! Happy Easter, from our family to yours! 

55 "O death, where is your victory? O death, where is your sting?" 

56 The sting of death is sin, and the power of sin is the law.

57 But thanks be to God, who gives us the victory through our Lord Jesus Christ. - 1 Corinthians 15:55-57

Egg hunt

Waverly enjoyed making an appearance as Little Miss Wheelchair Va at our church's Easter egg hunt yesterday! 

Easter eggs

We enjoyed dyeing Eastwr eggs earlier this week! Waverly did not appreciate how cold the egg was though. 

Needing wisdom

We are needing wisdom for Waverly these days. For a couple of weeks now, she's seemed a little "off" and we are having a hard time figuring out why. She's been constipated even though she goes every day. She's been having an increase in seizures too, and we just finished treating another UTI a few days ago, and are waiting to hear if she's got another one already. She had a fever one day this week but that's all. And she's arching. A lot. We aren't sure if it's due to pain (from constipation or UTI), reflux, neurological, or airway clearance. 

I've spent my entire week trying to contact each doctor to get to the bottom of this. We took her in last week to check for bowel obstruction or other issues, and to get some blood work to make sure her levels were ok, and most of that checked out ok. (They did note some scattered stool throughout her colon and some dodge goon in her colon. 

So, we would appreciate prayers for her as we try to figure it all out. We've talked about a hospital admission just to have a whole team working on the whole picture (which is really needed), but an admission would be risky with exposure to other illnesses that are there. So for now we are still trying to do our best to communicate with all doctors (NOT an easy task!) and do what we can to help her. Thanks for the prayers! 

These pics were from last week. Poor baby! 

Waverly on the news

http://www.virginiafirst.com/news/good-news/ms-wheelchair-virginia-raises-awareness

Check out Waverly's message of hope! What they left off is WHERE we find our hope-in God! 

Little Miss Wheelchair Virginia

Waverly had the honor of being chosen to be one of the recipients of Little Miss Wheelchair Virginia this evening. It was such an honor for her to be asked! We are excited to show others that all life is precious and a blessing, and that despite a grim diagnosis, there is hope! She was happy to have her big sister help her! 

Perspective

I could be mad. The agency gave us official word that we would be without nursing care 2 days a week just days before that was the case. (Thankfully we had a conscientious nurse who told us herself a few weeks in advance.) It's a big rearrangement in our day and week. When we have no help for Waverly, one of us is housebound at all times. We can't just pop her in the van and run errands or take the kids to and from school. And because of her high level of care needed, and how many seizures she's been having recently, she required a lot of time and constant supervision. (For instance, today she has hardly been able to rest due to so many seizures.) 

But instead, I am choosing to be thankful instead of angry. Because it has given me a whole day at home with my girl. I've been able to sneak away and run downstairs to do some laundry. (Yay for clean sheets! I admit that doesn't happen often enough in our home...!) I've been able to open all the windows, diffuse some essential oils, and listen to praise music. I've been able to work on my business and help my team while never having to leave my house. Since I work from home, I am not in danger of losing my job because of not being able to leave the house from lack of nursing coverage. In fact, I'm able to still earn a full time income while being home and caring for her. I'm able to have views like the picture I took, watching her rest in between seizures. I'm able to sit and snuggle her while catching up on my reading for my Bible study tonight. (We are reading the book Anything by Jennie Allen-it's so good!) And just now, I was the one to be able to hold her and comfort her during yet another round of seizures. 

Yes, days like these are hard. And facing the possibility of doing this for a while can be overwhelming (I don't know how those of you without any nursing help do it!) But there is so, so much to be thankful for in the midst of this. I know at some point in the future, I would give anything to have this "inconvenience" for just one day. So today, I am rejoicing in the ability to be home with my girl and care for her, and all that means. 

Leap Day

I remember this day 4 years ago. And just like then, today I am so thankful for this day. Why?

See, this day is an extra day that we are gifted with every 4 years. For me, it means one extra, bonus day with this sweet girl. 

It's one extra day this year that I get to hold her, to kiss her hands, to sniff her sweet breath, to rock her and coo back and forth. It's a day we aren't guaranteed. It's a gift. 

Rare Disease Day

Did you know that February 29 is Rare Disease Day? How fitting to call attention to rare diseases on a rare day such as Leap Day! So, without further ado, here is a little more about our Rare girl!
Waverly was born with Miller-Dieker Syndrome. Her condition affects less than 1 out of 100,000 people. That means that there is a deletion of genetic material on her 17th chromosome. That caused her brain to be smooth, a condition known as Lissencephaly. 
As a result, she is severely delayed in all areas (physical and cognitive). What does this look like on a daily basis for us? She is fed through a tube that goes directly into her intestines and stomach. Her lungs are very weak, and we do multiple breathing treatments with her each day to try to keep them clear. She has multiple seizures a day. She is on an oxygen monitor at all times. She gets oxygen as needed, and is on a bipap (breathing machine) at night to help her breathe and keep her lungs open. We regularly suction mucous from her mouth and nose. We cath her 4 times a day to help her empty her bladder. She is on over 15 medications daily. She is non mobile and non verbal. She cannot hold her head up. She depends on us for every thing.
But want to know what it also means? It means that we now speak without using words. It means we don't take one day for granted. It means we love deeper and more fiercely than we ever knew possible. It means heaven is so much more real to us, as we long for the day to be with her in a healthy and happy state. It means that we have seen how real and strong our Lord is, because who can endure such things without His strength? It means we have known deeper sorry, and deeper joy, than we ever imagined. It means we have experienced how sacred and important life is, all life. It means we have known a love so pure and real that it points us back to our Father. It means that God gets the glory, because of His goodness. In short, it means everything.
Thanks for taking the time to read what Rare means to us today, and for those who love our family so well.

The Other Side

The Other Side

She quietly confided to a few of us that there were some concerns with her unborn baby. There were some markers of a syndrome. Then came the extra amniotic fluid. Another indicator that there was something wrong. And then the waiting game. 

I identified so much with the worry of what happens when the baby is born. How long will I have with my precious child? What will life be like with all the special needs? What if my baby is healed? 

And then she went into labor. 

And we waited. And messaged each other. And prayed. 

Friends in prayer are a powerful thing. 

And it hit me. This is what it was like on the other side. To be patiently waiting for news of what was to come. It was surprisingly hard for me. I wasn't expecting the emotions. 

And then that precious little one was born. Healthy and whole. 

And we all rejoiced with her. 

And I crashed. 

I was on yet an other side. Seeing what it could have been like. A new baby, an exhausted mom, typical normal stuff. 

But our story was different. 

Two different "other sides". 

Same God on both sides. 

GJ update

So sorry I never updated after the last post. Waverly did well that day with her procedure. They ended up not completely putting her to sleep, so we were able to go right home after the procedure. And that's where the trouble started. 

When I went to start her feed at home, the J tube was really hard to flush. It even wouldn't flush part of the time. I started her food and it kept alarming that there was no flow out (aka the tube was clogged). Not good. I called the doctor's office several times until I finally was told it sounded like it wasn't working properly. We later found out the doctor forgot to flush it after placing it and we didn't know any better to try a feed there before we left. 

So, we went to the doctor first thing Monday morning to get it checked out. He placed a guide wire through it and got resistance about half way down, so he sent us for an X-ray with contrast through the tube and we saw an irregularity in the tube where it narrowed in the middle. 

They didn't have an extra button in her size, so we had to wait until the next week when they got another one in to replace it. In the meantime, we just used the g tube portion to feed her since that part was working. 

So, she had the same procedure done last Wednesday, 12 days after the original one, to replace it. Thankfully, this one seems to be working well as of now!

Enjoy some pictures of her during both procedures. 

GJ tube

Tomorrow Waverly goes in the hospital to receive a GJ tube in place of her g tube. We are doing this due to her lungs. Every time she's sick, her right lung is much worse than her left. The doctors think it could be due to reflux and aspiration. So we had a couple options. One was to do a Nissen fundoplication to prevent her being able to reflux. But that surgery is difficult and there was some concern with her feeding schedule and being on bipap at night, as well as the possible need for a tracheotomy in the future. 

So we instead opted for the GJ tube. This should help her if reflux and aspiration is the cause of her lung damage because her formula will go straight into her jejunum (intestine), and won't be in the stomach for it to reflux and cause aspiration. 

They plan to keep her overnight for observation because of the anesthesia used. 

The procedure is scheduled for tomorrow at 10:00am. We'd appreciate prayers. Specifically for the procedure itself, for her to handle the sedation well, for her health as she's battling another UTI and our oldest just came down with a fever, and for protection from germs while there. Thank you! 

Hallelujah

Today has been a terrible, no good, very bad day. Nothing majorly bad. Just a lot of frustrating things. A rearranged schedule. A squabble with my husband. Not feeling well myself. Fighting with doctors and labs and pharmacies over people who aren't doing their jobs just to get my child the treatments she needs. She's got yet another UTI. I actually made an involved dinner tonight because we had food that needed to be cooked. But now it's just me and kids eating it. (In that case we would have had quick and easy dinner!) Hubby is running late getting home from work which leaves me alone for dinner time and bedtime. 

We are preparing tomorrow for Waverly to go to the hospital to change her g tube for a GJ tube. (More on that in a separate post.)  Even with that, they called and made the time earlier which means we have to leave really early. No good. 

And then the kicker: my oldest comes home from school with a sore throat and fever. And I'm undone. 

I can't handle one.more.thing.

While we are eating dinner, I turned on Pandora. And this popped up:

"Hallelujah, hallelujah

Whatever's in front of me

Help me to sing hallelujah

Hallelujah, hallelujah,

Whatever's in front of me

I'll choose to sing hallelujah."

Heart check. 

Yes, Lord, I hear You loud and clear. I have the choice. And I can choose to sing hallelujah, no matter what is in front of me. 

In the midst of a bad day, of unexpected sickness, of trials and frustrations. On the eve of a procedure and a hospital stay. 

And for me, in the future, when we face the unfathomable reality of losing her, I will have a choice. I will choose to sing hallelujah. It may be through tears. It may be but a whisper. I might only even be able to mouth the words. But Lord, help me to sing hallelujah. 

http://youtu.be/GMhg754ynuo