Friday, August 19, 2016

Insanity and the Flood

You know what the definition of insanity is, right?
Well ... here you go ...

Insanity - Doing the same thing over and over again, expecting different results.

At least that's the only definition I know and it's exactly the definition I gave the doctors yesterday in rounds. And, that's where I feel like we are stuck ... in this cycle of insanity.

La Petite Belle bleeds.
They get the bleeding under control with meds and by pumping her full of blood.
She seems to be improving, lasting a few days to a couple of weeks.
Then, the cycle starts over again with another bleed.
Repeat. Repeat. Repeat.

Do you see that? Insanity.

If the cycle itself isn't enough, we have to deal with teams of doctors disagreeing on what's causing the bleeding ... Is it the GVHD (which the last biopsies have shown to be gone or very mild) OR is it the results of high-dose steroids? Is it one central spot that continues to bleed OR is it general oozing in areas OR is there another area that's bleeding? 

Those are the questions to which we have no answers.

Another meeting is being scheduled between medical teams ... GI, BMT, PCU (which is the floor we are on now that is the step up from ICU, with the same ICU doctors that are very familiar with La Petite Belle), and a new team, Transfusion Medicine. This last team has followed her labs closely for a while and have started her on a new IV medication that is supposed to control bleeding.

However, La Petite Belle still had a little more bleeding just yesterday after doing well for days. When it will stop, we don't know. What will cause it to stop besides giving her blood products, we don't know. There is so much we don't know, and apparently the doctors don't either. Just as we are frustrated and growing very weary in this process, they are too.

As our lives continue to be turned upside down, almost unrecognizable ... actually, not "almost" ... TOTALLY unrecognizable, we watched as so many of our friends back home faced major flooding last week and the devastation that it caused.

Would it make any sense to you if I said that I wished I could've been in Lafayette as it flooded?
No, it doesn't. Let me explain.

The flooding made me miss home.
The flooding made me miss the people in Lafayette ... my people.
The flooding made me miss my family and friends.
And, I realize Lafayette will always be home to us.

About 16 years ago, we had the same revelation when Beau and I decided to move back to Lafayette after living in Tulsa for six years. Actually, we realized three years prior to that when K Belle was born that we wanted our children to live close to and know our families, our friends, the church we met at, and to be a part of such a unique community. I'm so glad we made that decision.

As I sit in this hospital room in Houston, after a couple of weeks of traumatic events and moving into a new apartment, my heart yearns to be home again. Our girl wants to be home more than anything. When I was unpacking our boxes earlier this week, I had so many emotions about living in this city. While we do love Houston and live here now, it doesn't feel like home.

When La Petite Belle gets down, the only thing she says is, "I want to go home." And, when she says, "home," she means our life in Lafayette, which doesn't exist anymore.

We all miss it so much. My heart feels like it's still splitting in two, despite the fact that we've lived in Houston this year more than we've lived in Lafayette.

All of my hometown friends ... I hope you know what you have there. Appreciate it. Lafayette is a special place with the greatest people on the planet. Go hug a Cajun today ... dem's good people. If only I could transplant all my Lafayette peeps here in Houston, life would be so much more doable. So obviously, it's not the place, it's the people who make Lafayette what it is. #ProjectBringLafayetteToHouston

As for now, we're Houstonians ... we continue to have NO idea when this ordeal will be over nor what life will look like afterward. So, we're here ... holding our baby's hand, praying over her, crying, loving her, hoping, and trusting in a great God.

I love this song because it's exactly where I am right now ... telling my heart to beat again, telling my heart to trust, telling my heart to hope in an unchangeable God and loving Father.
Thank you for continuing to pray, believe, and stand with us for our girl's 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.


Thursday, August 11, 2016

The First Time You Hear Your Child's Doctor Say The Word "Die"

That happened two days ago.

La Petite Belle ended up back in the ICU over the weekend due to another GI bleed. She seems to be stuck in the pattern of bleeding, healing, getting stronger, then, starting over with bleeding again. We have been in and out of the ICU four times since the mid-July. Crazy.

While we love the ICU staff, we really don't want to have to see their faces again. We want our girl stable enough to not have to be there.

Because La Petite Belle's bleeding didn't stop after a couple of days, the GI doctors decided they should go in, yet again, for another upper and lower scope. Tuesday at 1:00 pm, our girl was rolled to the OR for her sixth scope, a pretty simple procedure. The doctors do have to be very careful because her tissue is so fragile and inflamed.

We waited for the doctors to come out with their pictures and to tell us what they found, just like they always do. They walked into the waiting room just about thirty minutes after the procedure started. This couldn't be good. I thought they obviously weren't able to see anything.

The doctors ended up only performing an upper scope. When they looked into her stomach and the opening of her small intestine, they saw a hematoma ... the same hematoma that had been there a couple of weeks ago when clips were inserted to close up a large, bleeding ulcer. The hematoma hadn't shrunk in size. The hope was that her body would absorb it over time. The doctor stated that she thought there was something under the hematoma "feeding it" ... a bleed. We would have to discuss how we would clear the hematoma safely to see what was under there and incorporate surgery doctors into the conversation. The plan was to discuss over a day or two and decide.

Beau and I walked back to La Petite Belle's ICU room to wait for her to get rolled back. We hadn't even been sitting there five minutes when the surgery liaison came in to say the anesthesiologist wanted to speak to us in the one of the family conference rooms. We headed over there thinking he was simply going to update us on what went on with her sedation.

The anesthesiologist began to tell us that as that he had pulled La Petite Belle's breathing tube out and they were getting ready to wheel her back to the room when they noticed her gown was soaked with blood on the right side of her chest. When they pulled her gown back, they saw a very large skin tear (ended up being 6 cm x 20 cm). I've mentioned before how tender, sensitive, and thin La Petite Belle's skin has gotten due to ... you guessed it ... steroids. She's had a few skin tears, but nothing of this magnitude. 

They called for plastic surgery to come and look at it before they put a dressing on it. As they were waiting, La Petite Belle began vomiting lots of blood. They quickly put the breathing tube back in because they did not want any blood to get into her lungs.

As he was telling us this, the GI team came back in, accompanied by the chief of surgery, and our BMT doctor. A decision had to be made. Our precious girl was lying there on the operating table waiting for what would come next. Something had to be done.

We had two choices: 1) Continue down the path we're on where she faces a life-threatening incident every week or two, OR 2) Go in and clean out this area and see if there is a bleed there by an artery or something that can be fixed.

We asked a lot of questions.
We discussed all the options.
We agreed with our BMT doctor, who said we needed to do what we could now. This is where he said that one of these that one of these incidents, if they continue like they are, she may not be able to recover from and die. We also felt like it was safer for her if she were to bleed on the operating table, where it could be managed better,  than in the ICU room or rooms anywhere else.

The surgeon said it was a "very high-risk" surgery and would be considered "emergency surgery." The GI doctor would go in one more time, endoscopically, to see if they could see anything behind the hematoma, possibly try to clear it out, but the surgeons would be standing by to intervene.

Beau said one more thing before the doctors left to see our girl. He said, "I don't know what your faith is and what you believe, but we are people of faith. Would you mind if we prayed with you before you go in?" They accepted. With tears streaming down his face, he thanked God for them and prayed that God would give the doctors guidance during this procedure. He also reminded God of how much La Petite Belle loves Him and that we knew He was a good Father and wanted good things for her.

The doctors shook our hands and headed to the OR. Beau and I went back to La Petite Belle's room to wait. We sat in silence. We cried. We prayed.

Another 45 minutes later, the surgeon and the GI doctor walked into our rooms, smiling. They said, "Good news!" I breathed a huge sigh of relief.

They GI doctor was able to see the source of the bleed because, apparently, La Petite Belle vomited the hematoma and blood that was covering the bleed. Where the clips were placed, there was an area that was just dripping blood, like a leaky faucet. She cleared the way for them to see the bleed endoscopically after all. No "emergency" surgery was needed. We thank God for that.

It was not the day we expected, but also, not a day that we've been unfamiliar with. We have experienced several life-threatening times with our girl. Scary moments. Moments no parent should have to ever experience. We pray that this was the last of these moments.

I've come to realize that you can be scared and trust God at the same time. Sometimes life is just scary. We know our God is always for us and loves us dearly, and we throw all our trust in Him during these scary times.

Notice this Scripture says "when" I am afraid ...

There are times where we are going to be afraid and have fear. What's important is how we respond to it. We can't drown in fear; we must bring our fears to God, lay them at His feet, and trust.

Thank you for continuing to pray, believe, and stand with us for our girl's 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.


Tuesday, August 9, 2016

"Ugly"

That's the word that La Petite Belle used to describe herself. It broke my heart, because all I see is beauty and strength when I look at her.

She was chosen to carry the torch in the hospital's celebration of the opening ceremony of the Olympics. When she asked, "Why me?" The answer was "because you're a champion." She has been working SO hard in physical and occupational therapy, sitting up at the edge of the bed or a wheelchair for three hours at a time, and then at least one other time throughout the day. She's really pushing herself harder and harder each day. There's NO DOUBT that she is a true champion and totally deserved to carry that torch.

I had to sign a photo release form so that they could photograph her. I asked La Petite Belle is she was OK with that. She said she was.

I have avoided posting tons of pictures of La Petite Belle as she's been in this fight because she doesn't look like her old self. The steroids have done such damage to her body ... major damage to her skin and, of course, the "moon face." The swelling will go away with time as she gets off of the steroids, but that will still be slow. And, the scars on her skin will fade, again, over time.

She decided that she would work on fixing her hair and even put on makeup for the ceremony. When she looked in the mirror, she said she was ugly .... that her face was fat, her hair was thin and didn't look good, her skin was covered in stretch marks and bruises, and so on and so forth. 

If she only knew how beautiful she really was.

After I told her that she was definitely not ugly, but beautiful, she said, "Mama, I see the way people look at me."

That broke my heart even more. 
I knew it was true because I've seen the way people look at her.

People don't mean harm, but when they look at her, they see a sick child.
She's so much more than that.

It broke her daddy's heart even more. What he told her was so good ...
"People are shallow. They don't think about what others have been through. I promise you, that anyone who sees you and knows your story, will see only a beautiful young woman who has faced things in her life that no one should have to face. And you conquered it. And, one day, you'll meet a man, and although you may hate your scars, he will love and cherish them, because they will have given him the best gift of his life:  you."

Here's the video of her torch-carry ...
video

I knew that people would look at her and see someone they didn't recognize. But, she is the same person she was ... witty, funny, compassionate, and definitely beautiful. 

As I type this, we are currently back in the ICU for another GI bleed. Because the bleeding isn't stopping, the doctors will do another scope (her 6th one since we've been here) today. We don't know what each day holds here, each moment. One day, our girl is rolling around in her wheelchair passing out candy to the nurses on the floor and spiking the ball to her therapist and the next day severely bleeding with low blood pressures, needing to come down to ICU. Things can change so quickly.

The only thing we do know is that despite how much things change here, our God never changes. His plans are always good. He is always faithful. He always heals. He always loves. He always carries. We are hanging on to every bit of who He is and trusting Him as we continue down this road.

Thank you all again for your love and support. Your prayers mean the world to us and to La Petite Belle. Please pray for a great report again from this scope today and more improvement.
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.

Wednesday, July 27, 2016

A Hope and a Future

As I started writing this post yesterday, La Petite Belle had just finished asking, yet another nurse, what her "religion" was. She's never been one to mince words.

She asks people this when she starts to talk about the t-shirt she designed. She shows them a picture of the shirt and then references the Scripture printed on it:
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11

La Petite Belle selected this Scripture that we've all been standing on and referencing through this whole journey.

I've heard many sermons preached using this Scripture. We all have.
The truth behind the Scripture lies in reading the whole book of Jeremiah, and not just the one verse. It is often misused when taken out of context.

The best explanation of this verse, in my opinion, was written in Relevant magazine ... the article, "The Most Overused Verse in the Bible," by Chris Blumhofer.
"We often read Jeremiah 29 like it is good news, plain and simple. But to the first people who heard those words, they were a tremendous disappointment. God’s people had suffered terribly. They had lost their land, their throne, their temple. Before Jerusalem fell in battle, the people had given in to cannibalism. They were then force-marched 800 miles and paraded (literally) through a pagan city in which they were now considered as the living symbols of the power of that city’s god.

It was into this kind of despair that Jeremiah offered God's promise: "I know the plans I have for you .... plans for your welfare and not for your harm, to give you a future and a hope." They were not easy words to hear. Jeremiah promised that God had a plan that was certain and inevitable. But it would not unfold on Israel's timetable. It would not simply undo Israel's hardship. Yet the promise stood: God would fully restore His people and bring them out of their desperate situation, but He would not do it in the way any of them would have planned it."

There's so much truth in that last section. When you're faced with horrible circumstances, it's hard to hear good news, and honestly, even believe that good will even come out of whatever the situation may be. But, this is precisely when you need to keep reminding yourself who God is and what His promises are. If you don't, you will just fall into despair. I've been both places and so has Beau. I've felt such deep despair, but also such tremendous hope for the future.

Through everything that has happened in our lives over the past 15 months, we, just like the Israelites, definitely would have preferred a quicker timetable and not to have experienced these hardships.

There are many things that parents should never have to see and experience. This last year, especially the last almost seven months, has been something I would never want anyone to have to face, to have to witness happen to their child.

Despite what I think and how I feel about it all, it's what has happened, and the road we have had to travel. We continue to travel it, constant changes, new battles, and all.

But, just as God's promise stood for Israel, it stands for us. He fulfills His promise in His own way, in His own timing, and not always the way we want it. God's promise for us, as His children, is "a hope and a future." This Scripture ABSOLUTELY refers to us, as Christ-followers, as co-heirs with Christ, and through Christ as descendants of Abraham. God never promised that life would always be easy and peachy-keen, but He did promise us "a hope and a future."

We can count on this. He never changes, and neither do His promises.
This is part of the hope we can hold on to.

Hope has gotten us through some dark days. We have held onto it for dear life.

Yesterday, we received the best report we've had since we've been here at Texas Children's Hospital.

The doctor printed the report out from La Petite Belle's last scope and biopsies.
Look at the beauty of the sentence circled in red.

{Tears flowing over here, accompanied by a heart full of gratitude}
We have never heard or read that sentence: "No evidence of Graft Versus Host Disease."

The full report showed that in her esophagus, stomach, small intestines, and colon that there was no sign of GVHD. The only part of her GI tract that showed anything remotely like GVHD was her large intestines and it was mild/moderate in some scattered parts. This is awesome news!

The pictures from her scope even looked so much better than the previous scope a couple of months ago.

Now, with that being said, La Petite Belle still has a lot of nausea and cramping and issues related to her GI tract. Our doctor said that they ultimately go by a patient's symptoms and how they are doing clinically. While she is definitely better, she has gut issues that she has to deal with on a daily basis. She's so ready to feel better and not have to go through this day after day. The doctors are continuing to work on scheduled anti-nausea/cramping meds to help her.

The steroids are also continuing to be weaned. As they get weaned, other parts of her body will heal better and faster.

As far as her kidneys go, she is still on dialysis four days a week, four hours at a time. La Petite Belle hates it. Good news is she is producing some urine; actually more than she has since her long stint in the ICU. Now, we just need those kidneys to fully wake up and actually clear the toxins/waste in her body. So, even though she is producing urine, she's not clearing those things out. We're hoping to see even more urine and for her kidney levels to stabilize and become normal again.

And, last, but not least, her biggest challenge right now is physical therapy. She has had several days of standing for up to a minute with help. This is quite painful, but she's a trooper and does it anyway. She can sit up on the edge of the bed more and is now starting to work with physical therapy and occupational therapy separately each day, giving her two sessions a day.

When you think about La Petite Belle, please continue to pray for strength in her muscles/bones and complete healing of her gut and kidneys. God is a Healer and His promise is for "a hope and future" for our precious girl. We are overwhelmed by the support of so many friends, family, and others who are simply touched by La Petite Belle's story. Thank you from the bottom of our hearts!

If you'd like to purchase La Petite Belle's shirt, which she designed, you can go here
(10 days left to purchase)

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.

Wednesday, July 20, 2016

The Question No Parent Never Expects To Be Asked

Since I've last posted, La Petite Belle has been back to ICU twice. We're currently there today. The last visit was short. We had gone back up to the BMT floor, and then less than 24 hours later, La Petite Belle had another GI bleed.

This bleed seemed to be worse than the one that sent us down here about a week ago.

We went through yet another traumatic transfer down to ICU ... extreme blood loss, blood being pushed, calcium being pushed, very low blood pressure, non-responsiveness, paleness, and then vomiting.

At one point, she went into "v-tach" ... leading to the crash cart being pushed to the door, and doctors and nurses rushing in. To say it scared me is an understatement. They pushed more calcium and bicarb and she leveled off. They think it was due to her electrolytes being all off balance, so probably not a true "v-tach".

With that all said and done, the ICU doctor posed this question to us:
"If this happens again, and Katie's heart stops, would you want us to perform CPR?"

I felt like my heart was the one that had stopped.

For some reason, I just stood there, staring at him. I couldn't even comprehend the question. I didn't understand the question. I looked at Beau and K Belle, who has been here for her break, and still didn't know what to say.

The doctor said, "You don't have to answer right now. I just know you guys have been here a long time and have seen a lot. I have to ask the question."

Beau looked at me and said, "Yes, do CPR. We're not ready to give up yet."

Of course, the answer is yes.
I don't know why I couldn't say it.
I was worried ... Would this be the way God would heal her? Would He want me to say yes? What if I said the wrong thing and God wanted to take her home? What if I messed up this very important answer?
Of course, save my daughter.
God knows what our answer would be. He knows we want our child to live and not die.
Honestly, He can move regardless of what our answer would be.

Thank God we didn't have to worry about CPR because the incident didn't happen again.

La Petite Belle's bleeding seemed to subside soon after we got down to the ICU, just as it had before.

Yesterday, she had another upper and lower scope, number four to be exact. Same old search for answers. However, this time there was an area at the base of her stomach that they were able to clip, a large ulcer. They weren't able to see past that area so they said if there were other areas, something else would have to be done. But, if this was the area, which we're praying it was, then it's clipped.

Her stomach is still very fragile and sensitive and did bleed as they took biopsies. The base of the stomach seems to be the worst. Her esophagus and colon looked great, as did the very end of her small intestines. It's the area in between that they were not able to see, but somewhere between that ulcer and the bottom of her small intestines is where it all improves. I hope that it's right after that ulcer!

Biopsies were taken to check for viruses and GVHD status. Not sure when we'll get all that back, but believing for a good report!

The day La Petite Belle was sent to ICU the time before this was also the day K Belle came in from Australia for a visit during her break. Although it's been disappointing that they haven't been able to spend as much time together as La Petite Belle had wanted, it's been so great to have K Belle here. 

La Petite Belle made a sign to welcome her sister home even though she had a large GI bleed that morning.


As soon as La Petite Belle saw her face, she started crying. There have been numerous moments during this visit of them just holding hands and La Petite Belle caressing K Belle's face and hair. She loves her so much and misses her immensely. K Belle seems to be a huge comfort to her and really helps to calm her.

K Belle has spent as much time at the hospital as she could, even staying the first night, all night in this chair since there are no beds in the ICU rooms here.


Beau and I got to spend some of our own time with K Belle as well. Again, not as much as we'd like, but some time nonetheless.


Right now, La Petite Belle is back on the list to go upstairs and, in true 8th-floor style, they're full again. So ..... we wait here again. We were hoping that she would have one sleepover night with her sister, but the doctors just left the room, saying there are still no rooms, leaving La Petite Belle disappointed yet again. K Belle leaves tomorrow evening. I expect there will be many more tears from all of us at that point.

Beau and I are headed back to our hometown this Saturday for a benefit being held for our sweet girl. I am hoping she's outta this room tomorrow so that the friend we have coming from Lafayette to stay with her while we're gone will get some good hangout time with her.

Thank you for continuing to pray, believe, and stand with us for complete healing for our sweet girl! We're just catching our breath each day and moving forward onto the next day. God continues to prove Himself as a faithful Father, caring for us all as we walk through this journey to 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, July 5, 2016

New Mercies

The faithful love of the Lord never ends!
His mercies never cease.
Great is His faithfulness;
His mercies are new every morning.
Lamentations 3:22-23

That last line of these verses has been playing over and over in my head.
It's something we, as church-going people, hear all the time.

His mercies are new every morning.

New.

Every morning.

Not the same mercies He extended to you yesterday.
Or the day before.
Or the day before that.
And so on.
And so forth.

His mercies are new.

His mercies are the mercies that you need for that day.

When I buy a new dress, it's one I've never worn before ... one I've never used. It's brand new.
That's the same with God's mercies.
He gives you mercies ... not just a new mercy ... but, plural ... MERCIES.
Think of how many new mercies He bestows on us each day that we are not even aware of.

His mercies are immeasurable.
How many thousands of mercies has He given to us every day? New mercies, not old ones.

Every morning, my prayer has been that God would grant us new mercies for the day ... mercies for our sweet girl and her healing. He knows what she needs. He knows what we need.

I'm beginning to wake up every morning, thanking God for the new mercies He will give us for that day, knowing He will take care of us.

Today actually marks six months that La Petite Belle has been inpatient at Texas Children's Hospital. In the past, I heard people say they'd been in the hospital this long and I thought there's no way I could do that. But, here we are. You do what you have to do.

We made the best of our time here yesterday for the Fourth of July. Beau and La Petite Belle made decorations for her room. I prepared some snacks that she could eat. And, we all just did our best to distract ourselves from the situation and La Petite Belle from any pain or discomfort.


We see La Petite Belle grow in strength every day. Today, she was able to scoot herself into a wheelchair, with some help. Her physical therapists said she wasn't ready. Her legs still aren't strong enough to stand on. However, she insisted that she could get in the wheelchair. And, she was right. Despite what they told her, she did it, even wheeling herself some through the unit. The fact that this girl is tenacious is definitely to her benefit. And, most definitely, if you tell her she can't do something, she will push harder to show you she can.

Physical therapy usually wipes her out for the day and she napped all afternoon.

We continue to wait on these kidneys to wake up fully. Her levels haven't been too bad and she was able to only do three hours of dialysis on Saturday rather than the usual four. The next step would be to be able to transfer her to only three days a week. She has had tiny bits of urine so we'll be thankful for anything right now.

She still has quite a bit of pain. This is the hardest thing for us, as her parents, to deal with and continue to watch her face. We pray every day that this would subside, that she would continue to grow stronger, and God's healing would be complete in every part of her body as He grants her new mercies every day.

Thank you, once again, for your tremendous support and prayers. We love you all and thank God for you.

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.



Wednesday, June 29, 2016

What does it all mean?

I have written before that I DO NOT believe that "everything happens for a reason". I have also written about how I don't ask "why" anymore.

There really are no answers when hard things happen in our lives.
We WANT there to be answers, so we search for meaning. Obviously, there HAS to be a reason for everything that happens, right? Wrong. Life happens. God is always in control. And, the "meaning" comes from how we handle the journey. The "meaning" comes from the choices we make as we seek an all-powerful God to lead us and help us navigate the bumpy, winding road. God always shows up. He will never leave us stranded.

That's where we find ourselves today ... stranded ... like an old, broken-down car on the side of the road. We are broken, out of fuel, hoping to get back on the road again. The road of life for us lately has been filled with huge potholes and we've ended up at very unfamiliar destinations. 

We continue to press on, but our hearts are quite broken over the loss of Beau's new job. Yes, he lost his job. We honestly thought we had found a new home with new family and friends ... a new home for our baby girl once she leaves this hospital. I am in total shock over the situation.
I'll let Beau's Facebook post speak for us:
I have been steadily employed full-time since 1995. This past Saturday, that all changed. I will not go into detail as to what happened, to protect the dignity of all involved, so please don’t ask. Suffice it to say, I was doomed from the start.
I do still have a part-time contract job that I am doing for a wonderful church in the area.
I am low, hurt, and confused. I want to be the best husband, daddy, and provider I can be, and the admiration of my family means everything to me.

I am mostly hurting, because, while I’ve been at work, I’ve left the majority of the heavy lifting of Katie’s care to my wife. Yesterday was an eye-opening wake-up call as to what all is required in the day-to-day. I spent a good part of the day in tears. I had to apologize to Daphne for leaving her with this task as I went off to try to “create a life” for us.
But I’ve realized that our life is with our daughter in the hospital, and so I have decided to not pursue full-time employment for a while, so that I can help take care of Katie. We have some money set aside, so we will just depend on that for a while.
Thank you for your continued prayers and support. They mean the world to us. Pray for me, specifically, to have clear direction, as a man, as a husband, and as a father. I am completely heartbroken over this.
We love you all. I love you all.
So, unfortunately, we are back to square one. 
We are thankful ... yep ... thankful for a few things:
1. The part-time job Beau has
2. Money we had saved up, plus generous donations
3. God's grace

Yes, I see this as God's grace. I know that He's guiding us. We earnestly seek Him for direction. I don't know what the future holds, but He does. So, I will trust that this happened because of His grace and protection. Why it happened this way?? ... No idea. It doesn't make sense to me. Nothing much does anymore, but I trust Him to continue to provide and guide us.

Where do we go from here?
Again, no idea.
We were so close to looking at homes to purchase in the area near this new job. We looked at neighborhoods, schools, etc. Now, where we will live is a mystery. Day by day, day by day ... breathe.

As far as our precious girl goes, we are actually out of the ICU. YES! Imagine that?! We were in our 8th week there. A room finally became available on the 8th floor ... actually the room we've spent the most time in. La Petite Belle has made some great strides and is as tenacious as ever. 

She has been amazing in working with physical therapy. She is sitting up for longer periods each day and I can tell that she is getting stronger. Physical therapy is very painful for her, but she has been able to push past it and does even more than they ask. According to PT, La Petite Belle has a lot of rehab to go through before she can get out of the hospital. As of last week, they said it will probably be another 2-3 months before she's strong enough to leave the hospital. But, the way she's pushing through more and more each day, I'm thinking she will surprise them all like she always does.

While she still continues to have some nausea and stomach pain, her GVHD is better. We pray that it continues to improve more and more each day. The doctors continue to wean her steroids and other meds and have actually discontinued quite a bit of them. They were also able to take her off her intravenous nutrition, which greatly lowered the volume she was getting, allowing her to get off of continuous dialysis.

Our most pressing issue is still her kidneys. She continues to not make any urine, but they have transferred her over to intermittent dialysis. Instead of the 24-hour dialysis, she now gets 4-hour dialysis 4 days a week. 

The renal doctor told us not to be "too hopeful" about her kidneys recovering. Well, that's not gonna happen. We WILL remain hopeful. Hope is literally all we have. 
Like the old hymn says ... 
My hope is found in nothing less than Jesus Christ, my righteousness, I dare not trust the sweetest frame, but wholly lean on Jesus' name ... 

So, yes, I will choose hope despite what anyone says or what we may see right now. I choose hope. Choose hope with us.

Thank you for continuing to pray and believe with us! We appreciate all your support and love.
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.