Friday, September 25, 2015

We always knew she was a rock star.

I mean ... even from an early age, this girl had swag.



There's many more where that came from, but you get the idea.

"Rock Star" ... yep, that's what La Petite Belle's nurse practitioner called her at our clinic visit yesterday.

Don't misunderstand me. We still have a road ahead of us. But, my girl is doing well.

Today is Day +43.

We are officially down to two clinic visits a week, instead of our regular three. That came pretty quickly. La Petite Belle is happy about this because the clinic visits are exhausting.

She's still pretty weak and we're hoping she will start to gain some strength back soon. We are waiting on our first in-home physical therapy appointment, which should happen any day now. 

We were just reminiscing yesterday about La Petite Belle's sports days ... soccer, volleyball, and pretty much anything else she set her mind to. She was always so strong, so it's hard for her, as now, she gets winded just walking up the stairs. She's kind of bummed and thinks that her sports days are over after sitting out a whole year, but Mom and Dad keep telling her that she can get her strength back and be just as good as she was before.

Our week has been pretty uneventful, which the doctors say is good. The saying here is, "Boring is good." 

La Petite Belle's counts do fluctuate a little bit up and down, but any of ours would if we had our blood drawn so often. However, we had a more dramatic decrease at our visit yesterday so the doctor is taking her off a certain medication. There are two medications that she takes ... one that prevents pneumonia, and one that is an anti-viral (fighting that CMV right now) ... that can actually suppress the bone marrow. And, it looks like that is happening. So, instead of the oral medication for pneumonia prevention, she will be doing a breathing treatment once a month. The doctor and nurses don't seem to be worried about the drop in counts because they are pretty confident that they caused it with this combo of medications. The important thing, according to the doctor, is that her marrow is growing and producing. It may not be as fast as we want it, But, I am definitely expecting higher counts on Monday.

La Petite Belle's biggest struggle right now is emotional.
She has good days, but then has some really low days ... days where she is extremely homesick.
Earlier this week she told me, through tears ... "This was supposed to be my Freshman year. You know how much I was looking forward to it." It's hard seeing all her friends' school pics, and now, homecoming pics, and so many more to come. She has really learned, at an early age and through some heartache, what true friendship is and who her true friends are throughout this whole process. When you go through this kinda stuff, you realize how small your circle of friends really are. When you thought you had tons of friends, you wind up with only a few at the end of it. It's a shame. But, good nonetheless. Then, you understand the value of friendship and the true meaning of it.

She also doesn't want to be "that girl" (that's what she calls it). She wants her friends to respond to her the same way as before. She even said that she doesn't feel like herself anymore. I guess not. This girl went through and is continuing to go through one of the hardest things in the world. This stuff changes you. Depending on how you manage it, it should be a change for the better. We have all changed.

But, La Petite Belle's personality is still there for sure. I see so many glimpses throughout the day of her wittiness, sweetness, and inquisitive nature. She's there. She's the same. But, different.

It's hard to see your baby girl hurting. She has said multiple times, "I just wanna go home." To which I've responded, "you are home. Where we are, it's home."

I even asked the nurse practitioner about going home at our visit yesterday. I know it's early, but it's something to look forward to. Of course, it's a no-go before our 100 days. But, after that, if she continues to progress like a "rock star," we would be dropping down to twice a month visits close to that time and could very well do that from home, with one visit being our doctor there. That excited me, despite the fact that just the few times I was home during this, I felt like a visitor. So weird.

We are all definitely ready to be "home" with our K Belle. Our visits with her are too short. I long for the day that all four of us are under one roof, even if it's only a couple of months before K Belle leaves for Australia. Mama needs some time with both her babies and her family to be under one roof for some time.

I spend my days thanking God for La Petite Belle's healing. I have done that since the beginning. But, my thankfulness has changed. Each day of gratitude is different. Thanking God before seeing physical results is definitely harder. But, as La Petite Belle said herself in her news interview, "I just knew God is gonna heal me," I felt the same.

I read this today:
"Gratitude is thanking God AFTER it happens. Faith is thanking God BEFORE it happens." 
-Mark Batterson

So true.
Gratitude feels different than faith. My heart aches in faith and gratitude. I think it's the overwhelming love of God I felt and still feel in this. Whether there's good news or bad, He loves. There truly has been, even in my times of desperation, peace ... the invisible embrace of a mighty Father.

I literally thank God every day. Every. Day.
I think when you begin to do that, your outlook changes and you change.

Thanks again for all of your prayers and support. We truly appreciate all of 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.

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