Sunday, February 12, 2017

Sunday Mornings

We made it home yet again on Thursday evening. I want this discharge to last so much longer than all the last ones. I want it to last forever. I don't want to go back to that hospital. Is it okay to say I love and hate that place at the same time? Well, I said it. I love the people who have helped La Petite Belle and us through all of this, but I hate all that's happened to her there. I hate seeing so many children suffering, day in and day out. I hate seeing so many parents lose their children. It's become just a depressing place for me, for all of us. "Home" in our little one-bedroom apartment is so much better. There's simply a peace here and some tiny form of normalcy.

As I sit at my computer on this Sunday morning, I can't help but reflect on how my Sunday mornings used to be. They were busy. As a family in ministry, Sunday mornings were sometimes stressful, especially when one or all of us were serving in the church in some capacity. Sundays were long. We were always exhausted after church and took family naps when we could. Sometimes these naps were three hours long. I remember waking up so refreshed and spent the evenings with my family ... being lazy, being silly, but also preparing for Monday morning and the start of a new week.

This Sunday and the Sundays for the past almost two years have looked incredibly different. The only similarity is how exhausting they can be ... more emotionally than physically.

This Sunday morning {Beau has been playing for worship at churches around town as much as he can. This has been a tremendous blessing to our family.}, I woke up to La Petite Belle's cries to help her get to the bathroom. 
I helped her back to bed. She complained, as she does every day, of her stomach hurting. She vomited three times. I cleaned her up. I got all her meds ready for her to try to take. I did an IV push of medicine. I got the walker so she could get to the recliner and held her bag of TPN as she walked this short distance. She moaned for a few more hours about her stomach. I gave her extra anti-nausea and pain meds, hoping this would help. I begged her to try and eat or drink just a little something to help. She refused. Her mouth/throat/lips still hurt, making it hard to swallow. Because of this, her desire to eat has diminished even more. Finally, the meds have kicked in and she's napping. I sit here, praying that when she wakes she will feel better ... that we'll have a few good hours, maybe more. A good day would be fantastic! That's Sunday morning now.

We try to take advantage of any moments where La Petite Belle does feel well. Yesterday morning was similar to what I described above, but by afternoon, she was asking to go to Target. She wants to get out. She wants to go anywhere else besides the hospital. Even if she's feeling sick, she still wants to try to enjoy each day. La Petite Belle loves spending time with her family so much that she will try so hard to suppress her feelings of nausea and pain. I've seen her do it over and over again. Even when she feels miserable, she pushes through as long as she can to be with us. She wants to feel "normal" again, to do "normal" things.

We stop whatever we're doing when she has these urges and try to make the most of each day, attempting to bring some sense of happiness and joy into these moments.
We took our girl to Target yesterday. She's ALWAYS loved to go to Target, even as a young child. She would have Target dates with her daddy and Target dates with me. I think she just has some great Target memories and it's her happy place, just like most women everywhere.

The highlight of our trip was her riding in the electric wheelchair. She'd been wanting to try it.


She ran into so many end-caps and nearly took out a few kids.
We laughed. She laughed, which we hadn't heard much of lately.
This girl, who was once filled with joy, has become filled with sadness. As her parents, we try to pull that joy back out of her. It's hard to be joyful when you feel so sick.

About an hour into our trip, she got tired. Her endurance is pretty short. 
As she gets stronger, this will improve. Each day I'm reminded of how far she's come, but also how far she still has to go.

I miss our busy Sunday mornings. I miss church. I miss worshiping as a community. I miss K Belle. I miss family time. I miss laughing. I miss La Petite Belle.

I'm trying really hard not to live in the past. I remind myself that my old life is over, done, dead in the water. This is our new life. I'm working on embracing it, but even typing the word "embrace" doesn't seem right. Maybe "embrace" is not the right word. I think "hanging on" is more like it. I am hanging on to this extremely uncomfortable place where God has us for now. 

During this season, I hang on to Him. He's all I've got. No one else can drag me through this thing. I'd like to say I'm skipping through this season, but it's quite the opposite. He's definitely dragging me. Sometimes, I feel like I can actually get up and walk a bit, but then I get knocked down again. He comes in and picks me up. He carries me, drags me, pushes me. I know that He will get me to the other side. I just don't know how long it will be until I get there. So, I work on "embracing" ... embracing the fact that He's got us ... He's got La Petite Belle ... He will provide ... He will sustain ... He will restore.

We are working on attempting to get our girl to church. She wants to go so badly, but also doesn't want to vomit in service. I get that. Until then, we play worship music constantly. We read God's Word and His promises to her.  We continue to pray and trust God. We ask for His guidance and His grace. We pray for La Petite Belle's complete healing, no more pain, and strength that only He can give. Thank you for continuing to pray and agree with us! 
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com, and www.youcaring.com
All funds go to cover medical bills and expenses.

Monday, January 30, 2017

BFFs

That's what La Petite Belle and I have become through this.
We were always close, but through these last couple of years, we've become glued together. Of course, this occurred unintentionally, but it's what happens when you're stuck together almost 24/7.

I would choose differently though.
Don't get me wrong, I LOVE that she considers me her best friend and wants me by her side. She sweetly put her hand on my cheek and said, "You're my best friend," a couple of nights ago. It made my heart swell. So precious. So loving. So sweet. So grateful that she loves me and genuinely wants me with her.

But, I'd rather her be kicking me out of her room because she wanted privacy, like a typical 16-year-old. I'd rather her be hanging out with friends her own age, having sleepovers and dance parties.

We had an overall good weekend here at the hospital. She felt mostly good with just moments or pain/nausea throughout the day. She and I had our own Netflix time on Saturday night, while she and Beau had theirs on Sunday night. All with lots of cuddling and Sunday night, she even ate a few bites. She claims that, while I'm her best friend, Beau is her boy-friend {boy best friend}.

We were able to get out of the hospital both days to get some fresh air and sunshine.
La Petite Belle has always loved the sun. She would spend hours outside, basking in it. Many of her days were spent at our neighborhood pool.
When we take her out, she loves to just sit in the sun. Once she gets into a little bit of sunshine, she says, "Ahhhhh ... the sun." And, then she asks us to just sit for a while.


While our weekend was good, this morning brought more pain for La Petite Belle. She woke at 6:00 am, crying in pain. Her abdominal pain had returned. She got multiple meds with not much relief. After three hours, she finally was able to rest. She has slept the entire day today.

Also, while her HSV virus is not detected in her blood and hasn't been for some time, her mouth, throat, and lips are still bothering her. She continues to get IV antiviral meds. We are unsure how long she will need to remain on these. While she's getting them IV, it's best that we stay inpatient. Otherwise, we would have to come to the hospital every day for an infusion. We were hoping that she would've been able to switch to oral versions of these meds by now. We are praying that this week will be the week of major improvement in the healing of her lips, mouth, and throat.

Her sinusitis seems to be better. She was started on a new antibiotic last week that seems to be working in draining all that mess. Her sinuses have been totally clogged on one whole side of her face. The antibiotic is supposed to allow this all to drain.

The great news is that her hemolysis seems to have gone. She is getting her last dose of immune suppressant this evening and hasn't needed a blood transfusions for over two weeks. Thank God for that!

This pesky virus seems to be what's keeping us here.
As you pray for La Petite Belle, please pray for this virus to be gone and her lips, mouth, and throat to heal. Thank you all for continuing to stand and believe with us for La Petite Belle's healing. We appreciate you so much.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com, and www.youcaring.com
All funds go to cover medical bills and expenses.


Saturday, January 21, 2017

I wonder.

I wonder if we'll ever have a "normal" life again.

I wonder how long it will take for La Petite Belle to completely recover from everything she's been through. It seems like every doctor we meet says the same thing, "she's been through a lot."
That's the understatement of the year, actually the understatement of last year.

I don't bank on anything anymore.
When we got out of the hospital, kind of unexpectedly last Thursday, I thought maybe ... just maybe this might be the time we could possibly stay out.
Not even 24 hours later, we were readmitted. We were, once again, just getting all our home health things set up and I hadn't even been able to unpack everything from the hospital.

Even knowing that hospital stays may still occur for us from time to time, it doesn't break my heart any less for us to be back here. To me, each stay is a step back for La Petite Belle. She's stronger when we're on the outside. She's in better spirits when we're on the outside. We all get to be together as a family each night, sleeping in our own beds.

Our 19 hours out of here were pretty good.
La Petite Belle slept through the night after begging Beau to just stroll her through Target for a little while. Of course, I was not in favor of that, but let it slide, as long as she wore her mask.

At Target, she bought the movie, "God's Not Dead 2.," which we hadn't seen yet.

In between her morning clinic visit for an infusion, we were able to go back to our apartment for a few hours before having to be back at the hospital for dialysis. 
(This pic was taken as she slept during her early morning clinic visit.)

She wanted to watch the movie, so we did.
If you haven't seen the movie, there's a scene where a group of people sing "How Great Thou Art," while holding candles outside someone's home. I looked over at La Petite Belle and she had both her hands raised, crying and worshiping. Of course, I, then started crying. I let the song finish and paused the movie, went over and hugged her, and asked if she was okay. She cried for a little while, and said, "I'm just ready for this all to be over."

That broke my heart. I told her we were so ready for it to be over too and that watching her in pain was tearing us up. Then, I simply reminded her of how much God loves her.

After the movie was over, we got everything together and headed back to the hospital for dialysis. Beau always pulls up under the hospital canopy and helps me get La Petite Belle into the wheelchair, then I roll on up to wherever we need to go.

As we were in the elevator, I noticed she had "passed out." The episodes she had on Friday were like the ones she had months ago, where she was "vagaling"{a response to pain}. Basically, her vitals stay stable, but she's somewhat unconscious. She usually would come to very quickly, but this time, she wouldn't respond to me. I rolled her into the BMT unit and got her doctor. She wouldn't respond for about 15-20 minutes. It was one of the longest episodes she's had. The rapid response team came and assessed her. At this point, the room was filled with people and I was outside the door, but I saw her raise her hands. They were just in the air. They told me I could go to her and when I asked what she was doing, she said, "God's not dead." This girl ... she truly loves the Lord.

I know and understand that we ALL deserve death, but our girl does not deserve this. She really is the most pure-hearted girl out there and she's always just wanted to devote her life to God. Hearing your child moan in pain and say, "Please help me," over and over is so hard. I definitely feel beaten down and tell the Lord that I just don't know what to pray anymore. I feel like a broken record. I know He hears. I know He sees. I know He is faithful. But, I am desperate for a move.

The response team brought her to the Emergency Room. She kept vagaling for a couple of hours and got lots of Morphine and anti-nausea meds. She's been pretty much out of it and sleeping ever since. All of the tests point to ... you guessed it ... nothing. X-rays and ultrasound show no change from the last time she got them and her labs were good.

I'm not sure what this pain is from. Neither do the doctors, which kind of makes it more frustrating.
So ... I don't know what's going on, nor do I know what the plan is, if there even is a plan. I don't know if this pain was just a passing thing and she'll be better tomorrow or if it's something we're going to have to deal with somehow. I do know that we aren't getting out of here until Tuesday, at the earliest. I'm hoping, yet again, that it's a quick stay.

I wonder about a lot of things about our lives.
I wonder about our living situation.
I wonder about future jobs for Beau and me.
I wonder how God is going to redeem and restore this.
I wonder when this will "be over" for La Petite Belle, as she said.
I wonder if we can ever just be a normal, dull family.
I would LOVE to just be a dull family ... boring as all get-out. That sounds fabulous.

I continue to put my trust in Him, knowing He has always been faithful.

Thank you for not growing weary in praying for us. I know it's long. It seems like it'll never end. But, I know we still have support and prayers for those who love and care for us.
As you pray, please just lift our girl. Pray for this pain to come to an end and complete healing.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.



Sunday, January 15, 2017

But, then ... Grace.

I feel like I've written about grace a million times on this old blog. Today is no exception because the concept of it blows my mind.

Grace = Unmerited Favor

Each day here seems to bring more problems and issues than resolutions and good reports.
After over a year of that, a person can get worn down ... more like beaten down.
When you live in that type of state, you feel if someone simply touches you, you just might shatter into a thousand pieces.

We've suffered a lot of loss, now going on almost two years ...
loss of health, loss of family, loss of home, loss of friends. loss of jobs, loss of finances, loss of normalcy, loss of dreams, loss of goals, loss of just a good old, plain, low-key life.
And, here I lay .... shattered again.

But, then ... grace.

When I'm shattered, lying in these pieces on the floor, not able to produce the strength to stand, struggling to breathe, heart crumbling yet again ... there is a grace that comes in.

It's not magic. It's grace.
It's a peace. That peace reminds me that God is carrying us. He won't stop carrying us.
And, each time I break, there's grace.

Grace isn't limited to a day.
God doesn't say, "Oh, sorry ... you've reached the capacity of grace that you can have today."
Some days I need more grace ... grace upon grace upon grace.
And, He freely gives it to me.

When we get another bad report, bad news, something goes wrong ... whatever the case may be, I try to take deep breaths, try to relax, listen to the doctors, but also try to drown out their voices by the voice of God, reminding me of His promises. 

Sometimes those God voices do get drowned out by the voices of others and words like "cancer" or "end-stage renal failure" or "she could die." That's when I break.

Sometimes I see my beautiful daughter, looking at herself in the mirror, cleaning her face for the day, staring, and crying at someone she doesn't recognize. Her heart breaks. She thinks she's ugly. She sees how people look at her. That's when I break even more.

When I break, His grace comes in and covers me.
I have this visual in my head of how my mom used to make the beds in the house, rolling and fluffing out this long blanket to cover it. Over and over again, the blanket would billow over the bed until it was finally perfectly covered, every inch underneath the blanket.
That's how I see grace.
God billowing this grace blanket over me, over and over again, as many times as I need it, until every inch of me is covered ... grace upon grace upon grace, whenever I need it.


There are definitely times we need more grace.
God has shown us His grace never runs out.
Even though we have been walking through the darkest time in our lives, He covers us. He goes before us. He prepares a way when we don't know how we're going to survive.

We continue this journey into a new year.
We continue to not know what's ahead.
We continue to trust.
We continue to receive grace upon grace upon grace.

The last few days have been more rough ones. The good days seem to be few and far between. However, the viruses that have been attacking La Petite Belle seem to be getting more under control. She's been suffering with quite a bit of pain from the esophagitis. It's painful to swallow. Her mouth and lips are getting somewhat better, but still hurt, with bleeding and ulcers. The stomach pain seems to have improved some. She's still not eating, but isn't requiring as much anti-nausea meds. We are SO ready for her to take a bite or sip of something besides water with her pills. The GI doctors alluded to possible bad news from the scope, once the lesions at the bottom of her stomach were biopsied. I had another one of those heart-sinking moments when they said they wanted to rule out cancer. Um what?

I felt our world crashing around us again. I couldn't even believe those words when none of our doctors had ever mentioned or suggested such a thing. Fifteen minutes later, the phone rang in the hospital room and it was one of the GI doctors, saying, after closer examination, they do believe that the lesions are a result of the viruses in her stomach. As the viruses go away, the lesions will too. 
My head was spinning.
Tears upon tears upon tears with grace upon grace upon grace.

We continue to sit tight here, waiting for these viruses to be gone. The anti-virals seem to be working. The doctors say it's usually about a 14-day course of meds. So, we wait. We continue to pray for her stomach to improve and for her to eat again. We continue to pray for her kidneys to recover and her to get stronger. We continue to pray for this hemolysis to stop so that she'll need less blood transfusions. We continue to pray for her spirit to stay strong and keep fighting. She's tired. We're tired. We're all ready for a breakthrough. 

Thank you for the tremendous amount of support and prayers you have give us over the last year and a half. I can't believe we're coming up on two years of La Petite Belle's diagnosis, still here, still fighting. It's only by God's grace that we are making it. We know that He will always take care of us, no matter how bleak things may seem. He is here.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.

Monday, January 9, 2017

I don't have many answers, but I do know some things.

I finally got a chance to go to church Sunday evening.

I have only been to church a handful of times this year. It's just not doable in our current situation. It was Beau's night to stay at the hospital and my Houston friend, Amy, was leading worship. Of course, I had to go. I was glad I got to hear her beautiful voice.

Church is uncomfortable to me right now.

Don't mistake me saying that by thinking it has to do with my relationship with God. It doesn't.

It's uncomfortable to me because of me.

Two things ...
From the time the first chord is played or the first lyric sang, I fear I might crumble to the ground ... sobbing, snotting, moaning, barely breathing in a puddle of tears. I am and have always been a worshiper. I have lead many people in worship. It's something deep inside me. It's always been there. But, right now, I think worship may have to happen alone. I think it'd be way too overwhelming and distracting for those around me. So, I'm gonna have to keep that between God and me.

The other thing is I am not good at putting on a happy face. It's hard fro me to pretend everything's okay. And, I don't have the energy to tell people what's gone on and still going on. It's too much. Too much for me to tell and too much pressure for someone to know what to say or do. It's awkward and uncomfortable.

I long for church though.
I long, as I've said before, for community and relationships.
I know that it will all come some day when things are better. Hard to believe that things have to get better for church, community, and relationships, but it's just the way it is.
Thank God for my Houston Amy, her hubby, and the few who have reached out to us. It's hard for people. I get it.

It's easy to go to church and be a part of community when things are good. Much harder when they are not. Although, that's the time we need it the most.

I sat in this service, but didn't really engage. I didn't know a single song. I felt disconnected. It was a service not meant for me anyway, a younger crowd {we all know that's not me}. 
I disengaged after I heard the pastor say this: "God is moved by our faith, not by our need."

At first, it made sense. But, about two seconds later, it didn't.
I'm not convinced of this statement. In fact, I don't even think I agree with it AT ALL.

Of course, God is moved by our faith. 
But, if God is a good Father, kind-hearted, loving, and compassionate, how can He NOT be moved by the needs of His children?
Of course, He is. Just as an earthly father would give his child what he or she needed. If his child were sick, he would do everything in his power to help that child. I don't think any earthly father would not be moved by his child's needs, no matter what they may be. And, I have to believe it's the same with our Heavenly Father. He is moved by our needs. He desires to meet them.

I get it that He is moved by our faith ... that we believe and trust Him.
But, God just has to look down from heaven on my sweet girl, struggling, fighting, hurting and be moved. He just has to.

Jesus was moved by the needs of the people when He walked the earth. He had compassion on them. He healed them. He fed them. Even when there were those who did not believe, He was moved by their needs and met them. Not every single one of them. But, some. Why did He meet some needs and not all? 

I could get into all the questions of why some believers get healed here on earth and some don't ... why some believers prosper and others spend their whole life struggling ... why some believers just have a really hard life while others seem to have it made. But, I won't. Obviously, because I don't know. No one does. I'm learning to just accept that there are no answers to some questions. That's where faith comes in.

I must continue to trust in God, that His ways are higher than mine, that He loves my family, that He sees us, and that ... yes ... He is moved by our needs.


We ask that you lift our La Petite Belle up in prayer.
Tomorrow morning, she will be having her 7th upper GI scope done. You can imagine how nervous we are about this, seeing as we came close to losing her during the last scope she had in August. She's in a much better condition physically than she was back then, but, nonetheless, it's something we and the doctors don't take lightly.
All the tests that have been done on La Petite Belle's GI tract can only tell the doctors so much. Doing the scope is the best way to see what's really happening.

She has been put on new medications and her vomiting has decreased somewhat, but she still feels pretty bad most of the day. She's been sleeping a lot too due to the anti-nausea meds.

Another bit of info we got last week was that, after being negative for a while, she tested positive for HSV (typical cold sore virus). In an immune-compromised person, this can create all kinds of problems. She has it in her mouth now and think that it could be the cause of her throat and mouth pain. The doctors also suggested it could be in her esophagus and gut, which could be the cause of some of this. She was started on an anti-viral (which isn't great for the kidneys, but has to be used) to combat HSV.

La Petite Belle is still dealing with this hemolysis (breakdown of red blood cells), needing red blood transfusions more than before. The doctors are starting another round of the immune suppressant that was given during the last month. Hoping this will continue to slow this hemolysis down and it will eventually not be a problem for her.

Please pray with us that this scope will finally give the doctors the answers so desperately needed, and for the appropriate treatment to heal her gut once and for all. Also, pray that this virus would go and the hemolysis would stop. Please continue to pray for her kidneys and that she would be able to keep her strength up, even though we've been on this extended hospital stay.

Thank you for praying, standing, believing, and supporting us through this long journey. We are weary, but we know you won't stop praying. We appreciate every single prayer.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.

Sunday, January 1, 2017

Leave your complaining in 2016.

I really don't want this post to come off as insensitive. I know it probably will anyway, but it must be said.
I know that people have problems.
Some have big problems. Some have small problems.
So, don't think I think we are the ONLY ones in the world going through hard stuff.
I don't think that AT ALL.

But, over the past year, I've become more sensitive to people complaining about things in their lives that I only wish I could complain about.
Heck ... we've had people even reach out to us saying stuff like this ... allow me to paraphrase a quote ... "You guys are so inspirational. When I find myself complaining or feeling sorry for myself, I just think of you and realize it could be so much worse."
I understand the sentiment behind this, but understand me here, that doesn't make us feel better.
I mean ... I guess that's a positive thing. The statement though invokes eye-rolling. I'm not sure why. It might be that to me it sounds more like, "Hey ... your life really sucks right now. Thank God mine doesn't suck as bad." I know that's not the sentiment behind it and I'm being overly sensitive, but just how it feels.

We NEVER wanted or asked to be an inspiration.
I would love to NOT be an inspiration if this is the way inspiring others occurs.
I have begged God to let us not be an inspiration.
I have begged God to PLEASE give us a simple, quiet life of nothingness.

Back to my point ... here it is:
Stop complaining about stupid stuff.

It's annoying to us who are really going through real-life issues.
Know that people going through real-life issues wish they had your problems.

So, your hair cut didn't work out the way you planned it?
So what. It'll grow back.

So, you burned dinner?
Big deal. Eat a sandwich.

So, your kids are driving you crazy?
Be thankful your kids are healthy and CAN drive you crazy.

So, traffic's bad?
Be thankful you have a car and can drive wherever you want because you're not stuck in a hospital 24/7.

So, you hate your job?
Be thankful you have a job.

So, you didn't sleep well?
Just don't even get me started on that one.

There are a million complaints out there that, in the grand scheme of life, are totally unimportant.
Instead of complaining, be grateful.
Thank God for the mundane. What we wouldn't give for that!
Thank God you have all your chickadees under one roof at night, safe, sound, and healthy.
Thank God that you and your husband actually get to sleep in the same bed every night.
Thank God that you can go in your kitchen and whip up a meal.
Thank God that you can go outside and feel the sun and wind on your face.
Just thank God for your life.

I realize this does sound insensitive.
People like to complain. I complained WAY more before such adversity hit our family.

I find myself, even in our circumstances, thanking God daily for each moment.
We have come in contact with multiple families who have faced tougher circumstances than we have and some who are still fighting longer than we have been. When I hear their stories, I thank God because, honestly people, life can always be worse. I find myself in the same position as those people who say we inspire them, being inspired by those who are facing worse odds.

As I face this new year, I want to be more grateful.
Most of all, I want healing for my baby girl's body. I have solidly prayed for this. I have claimed it. I have rebuked sickness. I have spoken everything I know to speak and done everything I know to do. Ultimately, my daughter is in God's hands. He's her daughter first and I have to remind myself of that when I get anxious about what's going on. My hands are tied. It's all up to Him.

Knowing His character, I just have to trust in His will and His ways. Although I don't understand a lot of what I see here and my heart breaks for our family and for other families, I simply have to surrender.

Surrender looks different these days. It looks like screaming. It looks like anger at times. It looks like questioning His ways. It looks like loads and loads of tears. But, in the end, it looks like open hands, and an open heart that says, "I don't understand this. It seems wrong. But, I'm trusting in Your leading and Your plan."

Please be more grateful this year. Complain less. Thank God more, even in the messy stuff.
Life can turn on a dime. Treasure each and every second. Love harder than you ever have.

Goodbye, 2016. You've been hell for us, for sure. But, thank you for allowing me to see what a wonderful family I've been blessed with and what a wonderful God I serve through it all.


May 2017 be better for all of us!

As far as an update on La Petite Belle's progress, I don't have a whole lot to say. Her liver levels have stabilized and it seems her hemoglobin is not dropping as drastically and quickly as it was a week or two ago. She was finally seen by a GI specialist on Friday, who spent a significant amount of time learning about her case. She is a complicated case. I am hopeful in that he seems eager to help us figure this gut thing out, and doesn't just say, "well, you know her gut just doesn't work well right now." He wants to start with the least invasive methods first, so she has been started on even more medications that can help her gut to move. We will give these a few days before moving on to the next thing. Her vomiting seems to have gotten worse over the last couple of days. So much so now, that her esophagus and throat seem to be irritated and inflamed. It actually hurts to swallow and she has lost her voice. If she's not vomiting, she's sleeping, as the anti-nausea meds make her tired. We are so ready to get this issue solved and for her to have relief. She's definitely growing weary. You can imagine what it's like to vomit every few hours each day. Combine that with throat and mouth pain, and you've got misery. She's been in the bed more, but we are constantly encouraging her to stand at least twice a day and sit up. That's also hard to do when you feel crummy and are groggy from meds.

Please pray for wisdom and guidance for these doctors. I do feel, at times, she always has them shaking and scratching their heads. I know they are doing the best that they can do and want so desperately to fix her, but it's equally frustrating for us when there are no answers. Also, pray for her stomach and intestines to completely heal and work properly. Pray that her kidneys will still recover and for increased strength.

Thank you all for praying, standing, and believing with us for our sweet girl's healing.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.

Tuesday, December 20, 2016

Others First

Today, I find myself broken again.
You'd think there was nothing in me left to break.
But, apparently that's not the case.

I cried so hard this morning, to the point of vomiting.
I guess that just needs to happen from time to time.
Again, I pleaded, on my knees, for my sweet girl.
In the words of my wise husband ..."We just have to keep praying and believing. She's God's daughter too." So, that's just what we have to keep doing. I have to remind myself to just take one day at a time, one moment at a time.
I pray for God's healing to be complete in His daughter, this precious treasure that He gave to us.
I pray most of all for her to be free of suffering and pain.
I can't imagine heartbreak worse than watching your child suffer, and suffer for such a long time.

I want to give you another glimpse into our La Petite Belle ...
Today is the day her sister arrives from Australia. She has looked forward to this for so long. She wanted desperately for us to be in the apartment, doing our normal Christmasy things, and to simply all be together for the week. Turns out, part of that won't happen.

She feels so crummy right now. Vomiting has come back, running fevers off and on, and general pain has returned.

I was sitting at the foot of her bed, rubbing her leg, and just looking at how beautiful she is, as she dozed in and out of sleep. Her eyes opened and her face immediately turned sad.

I asked her what was wrong.
She said she was "just upset."
When I asked her why, she said, "Because I hate that I'm having to deal with this while K Belle is here." (except she used her real name, of course)

She wasn't upset because of how bad she was feeling. She was upset because she thinks this is ruining K Belle's trip and our Christmas. That's the reason she's upset. 

This girl always thinks of others before herself.

Last week, when we were in the dialysis unit for her normal dialysis time, there was an organization handing out presents. One lady asked La Petite Belle what she wanted. Our girl said she didn't want anything. The lady continued to insist on La Petite Belle choosing something, pulling out all kinds of things she might like. La Petite Belle still said she didn't want anything. Finally, after the lady harassed her enough, she said she'd take something. After she chose it, my husband looked at her and asked why she chose that particular item since it was totally not something La Petite Belle was interested in. She said, "K Belle would like that. I'm going to give it to her."

Again .. my girl inspires me to stop being so selfish.
Even in her most painful moments, she apologizes to us, to her nurses, simply because we have to care for her and she feels like she's a burden. 
Our intention is to always make our girl aware at how amazing and special she is and that it's a privilege for us to be her parents and take care of her. We have to keep reminding her of that fact.

When Santa came by the hospital room today, La Petite Belle, again, didn't want anything. But, there was already a bag with her name on it.
Beau got a sweet hug from Santa himself.


I never knew how powerful a hug could be until now.
Sometimes it's just what you need.

Like I said, our sweet girl is still in a lot of pain. Results from a second ultrasound and MRI show an enlarged bile duct. This means the sludge from her gall bladder is just sitting there, not passing through. It's not clogged or obstructed so they do not want to do any type of surgery. It's all too risky for La Petite Belle. They want to wait some more and see if it corrects itself. Her liver enzymes are trending down, so that 's a good thing. Her body is really needing to fight this ... whatever it is, whatever the cause.

The main concern right now is this hemolysis (her body breaking down her own red blood cells). Her hemoglobin is dropping significantly just in a matter of a day, which means she is requiring blood transfusions every day. She got a second dose of Rituximab, an immune suppressant targeted at getting rid of the antibodies that are causing the red blood cells to break down. The other two options to treat this are not optimal for our girl. One is steroids, which the doctors don't think she could survive another round of those. And, the last one is plasma exchange (removing her plasma, cleaning it of the antibody, and putting it back in her body), very similar to dialysis. We are praying and hoping that the Rituximab does the trick. She didn't show much change with the first dose, so hopefully this second dose will work. The doctors say we need to wait another 5-6 days to see if there's improvement or if the hemolysis slows down.

All that's going on in her body has caused her kidneys to take a back seat, yet again. Her urine output has been minimal. That makes us have to worry about the amount of fluid she's getting, which is more than she's been having to get in months. With more fluid and no real urine output, there is a concern that she would need more dialysis. She may have to have extra treatments if need be. We are praying and hoping that that's not the case ... that she will have more urine, and need less blood products.

And, of course, she's been in the bed a week, which means she's getting weaker. We try to get her up as much as she can tolerate. It's hard to do because she's in so much pain.

Now that we know we are facing more time in the hospital, we are trying to plan Christmas accordingly. We are hoping that we will get a room on La Petite Belle's "home" floor tonight. The doctor told us there was a discharge and that the plan was for us to have that room. Does the plan always work out? Absolutely not. But, we are hopeful that we'll at least spend Christmas in our second home, all together, as a family. We will just have to make the best of it!

You have no idea how grateful we are for your prayers, love, and support. Thank you for continuing to pray.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.