Plans Far Greater…

This appeared on my Time Hop today…

 

It hit me in a new way this morning as I realized that it might possibly pertain to our own lives now.

And I don’t think I want it. 

At this moment, I just want my Tori. A healed, typically developing Tori. I don’t want God to use us without her.

Rationally I know that this life is not my own, anyway. God alone knows why all of this is happening and He can see the ending of our earthly story even though we can’t. He knows the plans He has for us, with or without Tori.

But that doesn’t mean that I want that right now.

This brings me back to a point of surrender because I am reminded that God can redeem any circumstance we may encounter. He can take the tragic death of a child and make something beautiful from it. In the case of Mr. and Mrs. Hershey, their inability to have children of their own created an opportunity to touch tens of thousands of children.

We continue to pray that Tori will be completely and miraculously healed here on this earth. That is our hearts’ greatest desire.

But, if we have to lose Tori here on this earth, then I desperately want God to have a great plan for us, a purpose for her precious life…a plan far greater than we can imagine.

A Mustard Seed of Faith

  
I want to see my prayers do something big. In person. 

So often we pray for others passionately and see God move from afar. But I want to see Him move up close – in my daughter’s life. I have never wanted anything so desperately. I want to see her healed here on earth!

Our baby girl is nine months old now. From a medical perspective, she has fifteen months or less to live.

Fifteen months. Or less.

And yet , we know that God is greater than Krabbe. The Bible tells us that faith in Him can do amazing things:

Then Jesus told them, “I tell you the truth, if you have faith and don’t doubt, you can do things like this and much more. You can even say to this mountain, ‘May you be lifted up and thrown into the sea,’ and it will happen. You can pray for anything, and if you have faith, you will receive it.” (‭Matthew‬ ‭21‬:‭21-22‬ NLT)

The apostles said to the Lord, “Show us how to increase our faith.” The Lord answered, “If you had faith even as small as a mustard seed, you could say to this mulberry tree, ‘May you be uprooted and thrown into the sea,’ and it would obey you! (‭Luke‬ ‭17‬:‭5-6‬ NLT)

We want to see our faith move mountains, figuratively. We face impossible odds right now with Tori from an earthly perspective, but we know and believe that with God ALL things are possible! Krabbe is our mountain. Krabbe is our mulberry tree.

Lord, please save Tori’s life. Allow us to struggle with her as a drama-filled little girl; allow us to have the frustrations that parents of teenagers experience; allow us to raise her to know You and to love You. Please. 

You told us to pray for Your Will to be done on earth just like it is in Heaven, and Lord, we know that there are no diseases in Heaven. So we pray that Tori would be completely healed!

God, we have faith bigger than a mustard seed (from our perspective), and we believe with all our hearts that You can heal her earthly body! Please heal her. Restore her brain to full function and remove Krabbe from her body. In Jesus’ name we ask these things…

   

           

  


Q&A Part Three: Newborn Screening, Legislation, and Genetics

I am still so new to the Krabbe world, so I am sure there is more I could add that I don’t even know yet. If you think of more questions, please let us know!

Newborn Screening and Legislation

  • What states currently screen at birth? Are there other states considering legislation?

Judson’s Legacy does a great job of keeping the information current on this topic here.

These states have passed legislation to screen for Krabbe disease but the programs have yet to be implemented: Illinois, New Jersey, Pennsylvania, Kentucky, and New Mexico

These states currently test: Missouri (since 2012), New York (since 2006)

  • If your children have already had their newborn screenings and your state doesn’t screen for Krabbe, how can you get a supplemental test for Krabbe?
    You can order one here.
  • I asked about testing at the newborn screenings but they told me they won’t test for it; the doctor didn’t even know what I was talking about. She said the only way is if it is in our genetic line. So is this genetic? And can they refuse testing?

    Yes, it is genetic. However, we had no idea we were carriers! How would you know if it has never appeared in your family?

    This is why it is crucial that all 50 states (and every country, for that matter), test for Krabbe (and every possible genetic disease) at birth. It is a great use of taxpayer money.

  • If babies are screened as newborns, can they be treated? What is the treatment? 
    YES! They can undergo a stem-cell transplant, and the treatment has a 90% success rate. You can read more about treatment here.

Future Children and Genetics

  • What are the chances of having future children with this same disease if it is genetic?

    Brennan and I both carry the recessive gene that causes Krabbe. The chances are 1 in 4 for each pregnancy, but Dr. Escolar has found that, more often than not, families with one Krabbe baby will have another. The chart below from Hunter’s Hope shows the specific genetic odds.
  • Is the recessive gene something people can get tested for or is it only available for newborn screening? Why wait until birth – why not have this as part of the blood tests of at least mom if not both parents?
    The short answer is money. Most insurance companies will not pay for genetic testing unless there is a specific reason to be concerned. It is very expensive! Because it had never appeared in either of our families, we had no reason to think about genetic testing before having children. This has shown us the importance of knowing your genetics and DNA!

Q&A Part Two: Everyday Life with Tori

Below are the questions and answers pertaining to daily life with Tori ❤️ You all asked such great questions!

  • Are you in need of help with meals, laundry, etc. for yourselves? What are needs that we can help with? Honestly, I think we are okay for the most part. The biggest help would be with house cleaning a couple of times a month, but even that is getting easier now that Tori is doing better with being on her pillow. We had planned to do quite a few minor house and yard projects this year that are obviously on the back burner now, so if anyone wanted to help with those projects we would buy the materials! 😄 We have a list!
  • How is your freezer stock of breast milk doing? Are you in need of more? We have enough for 2-3 months right now and we plan to keep her on breastmilk until the end (unless God heals her here on earth, of course). We will need more but our freezer is pretty full right now.
  • Does the giraffe symbolize anything? Or is it just a favorite animal of yours? We decorated her nursery in giraffes because it was the only appealing thing we saw at Babies ‘R Us when we did our registry. I think I heard that giraffes have the biggest heart of any mammal, so that is fitting because we love Tori so much.
  • How are you trying to find “normalcy” on a day to day basis- even in this journey? We try to do normal things with her – traveling places, excursions, church, relief house-parenting  at MHS once a month… Obviously some things have had to be modified and we don’t leave the house as often, but as she is becoming increasingly comfortable we are attempting more things.
  • When you’ve had trouble with Tori sleeping through the night, is it because she’s up crying? Or just awake? It varies. Lately she has just been awake.
  • Would elevating her after eating help with a child with Krabbe or not? We tend to keep her elevated anyway because she drools a lot when she sucks on her pacifier and it can make her cough. Elevating her alleviates that.
  • Is she in pain or on medication for pain? Yes to both. Krabbe causes nerve pain. She is on two medications – baclofen (muscle relaxer) and gabapentin (for nerve pain).
  • Does she still cry and recognize mom and dad? We think she still knows who we are. I can take her from someone else when she is upset and she will calm instantly for me.
  • Are there any treatments available at her stage to stop the progression? Unfortunately not. The damage is too extensive.
  • What can she still do or think? She can’t do very much – she can move her arms, legs, and head a little bit. I don’t know what she can think about.
  • Is there anything specific you would like people to pray for, besides general comfort and healing for Tori? Pray that God will use this (and us) for His glory and purposes. 
  • How does Tori get nutrition, what exactly does she eat and when? Tori receives 90-105mL of breastmilk with 1.75mL of MCT oil 6-7 times a day. On average it is every 3.5 to 4 hours.
  • Does she have a feeding tube and if so what risks come with having a feeding tube? Does it get infected easily or is it quite straight forward to manage? Tori has a g-tube that was surgically placed in her stomach. If you keep it clean and change the pads at least once a day it is easy to maintain and therefore prevent infection.
  • How is Tori measuring up growth wise for her age? She is no longer on the growth charts for her age because she is so small. There are no growth charts for Krabbe babies.
  • Does she get fussy? In all her pics she seems relatively content. Oh yes. If she is fussy I am typically tending to her and not thinking about photos 😉❤️
  • Are there more/better pain meds you can give her so she can sleep more, or are the side effects too much? If things get worse we will have morphine and Valium as options. For now, though, we only give her the two main medications (baclofen and gabapentin).
  • What’s your usual day like? Well, each day varies greatly depending on how well she slept the night before. If we were up all night we may not get up until 10:30am or 11am so that I have enough rest to function. If she sleeps 6-7 hours (her new thing we hope!), we are up by 8am or earlier. Some days we have Early Intervention visits. I try to shower daily and get basic household chores done. If she is really fussy and just wants to be held, we sit in our recliner all day if that is what makes her happy. That is how I keep up with Team Tori!  She gets meds on a strict schedule, three times a day, and each med is given an hour apart. She eats every 3.5 to 4 hours. When Brennan gets home (around 5:40pm), we typically eat dinner, give her a bath (every other day), and try to relax as a family. But, if she was fussy that day, I try to get things done when Brennan is home to hold her.
  • What do you need to do to get her ready to go out? It is SO much more complicated now! If she will need a feeding while we are out (which we avoid if possible), we have to pack the milk, pump, syringes (water to flush the tube and an empty one in case she needs to vomit), a feeding bag, diapers, etc.
  • Has she had muscle stiffness or seizures? Yes, stiffness, no seizures. Gabapebtin prevents them, thankfully.
  • How has this affected your marriage? Other relationships? This has really strengthened our marriage, thankfully. It has also brought some amazing new friends into our lives and that was something we had prayed for before she got sick! Unfortunately, not everyone is dealing with her diagnosis well, so it has strained some relationships, but we just pray that those people will have peace about God’s plan for tori.
  • Tori’s eyes are especially beautiful and photogenic.  How do you capture her not blinking? I have a DSLR (I am a photographer) which takes photos instantly and my iPhone 5S also takes photos quickly. Plus, she often keeps her eyes open for a long time.
  • Are you open to letting people you do not personally know help you with caring for Tori? Well, we aren’t sure about that yet. We will eventually have nurses coming to the house, but other than that we haven’t considered it.
  • What is on your bucket list as a family? Well, because she is so young we don’t really have one. We want to take her to the beach and we will be doing that in June in California. Other than that, we aren’t sure.

Dreams of Healing

I haven’t personally had dreams about Tori that I can remember (not that I often have sleep that allows dreams these days), but many people who are following our story have told us about vivid dreams they have been having about Tori – a healthy, growing, healed Tori.

I pray that these dreams are prophetic – we know God often uses dreams to speak to people! I wanted to start recording these accounts in case she is healed on this earth and I need these later.

Here are the ones I was able to find – I will add more if they come in so that they are in one place. 

If you have had or do have a dream about Tori being healed, please let us know!

“I had a dream that our family drove to Pennsylvania in the car we want to get to have lunch with you, Brennan, and Tori. Tori was in a high chair, so she was sitting up. I woke up before there were any vocalizations about her healing, but the fact that she was sitting up is a good sign, right?!”

“I had a dream that Tori was in a ladybug dress and going to her first day of kindergarten!”

“I had a dream that Tori smiled. I also saw you, Lesa, and you were holding Tori in your arms, and you were sitting at the feet of Jesus by the Mercy Seat, and surrounding the three of you was all of Heaven and they were singing and praying for you and Tori. I was crying.”

“I vaguely remember. She was older, though, much older. It’s just how I see it. I don’t know why I don’t see this ending tragically. I just don’t.”

“In my one dream she was running around the playground.”

“I was going to say that I had a dream last night about her sitting with Brennan asking him to read her the story about God’s promises, the covenant. Didn’t know you were going there (Bethel) today.”

“Wow, the dream I had last night was that Tori was toddler size and talking and then I woke up and read your post about going to Bethel this morning. Praying for healing with you all! Our God can do this!”

“I didn’t have a dream, but while you were in California I did have a vision of her healing, God showed me that small things about Tori would begin to change; the light in her eyes that you’ve missed the last couple months will begin to return. When she is looking at you, you’ll be able to tell that she sees you and knows who you are. That she will smile! Maybe so small and inconsistent that you wonder if you’re seeing things, but then it will be more frequent and will become responsive. That the parts of her brain that were claimed by Krabbe would be reclaimed by the God who created them.”

“I did not have a dream, but about 24 hours after you were at Bethel, while looking at a photo of Tori, the photo  almost seemed to be a video as I thought I saw her face move as if she was inhaling. It occurred to me how cool it would be if that was the instant some sort of healing was happening.”

“About a month ago I had a dream that Tori was completely healthy and healed. It was truly an amazing dream!  I thought I was the only one who had that kind of dream.”   

“I just had one last night. It was brief. I walked into a room in a house, like a living room. I see a little girl walk toward me and vocalize. I recognized her as Tori.”

“I do home health and take care of sick children, I trained a girl on Wednesday on my current case. Maybe it was my anxiety about training someone else, but…In my dream, when the other nurse and I showed up to the house, it wasn’t my clients house at all. At the time I didn’t know who’s house it was. But when you posted the picture of your freshly mulched yard, I recognized the house as yours. When we walked in the house, we found you Brennan and Tori, having breakfast at the table, and she was eating scrambled eggs, looked up at the other nurse and myself, and in the softest of voices she said “hi” pointed to her eggs, she said “eggs”, clapped her hands and laughed. I shot up out of a dead sleep around 3am, her laugh sounded so real like I had heard it while I was awake. Keep praying, don’t lose hope. He is listening. He is just waiting for the right moment.”

“I feel like it’s a sign that you’re asking this. I had a dream last night.  The details are fuzzy but we were talking about another child who was healed and feeling very encouraged because you said tori was showing signs of improvement.  In my dream this was a sure sign tori was being healed.  She wasn’t in the dream. Just you Lesa but we were overjoyed!!! Cannot begin to tell you how I pray with you all for this to be true.”

“I dreamed that you posted a video of Tori saying her first words. It was just days prior to you going to Bethel. I remembering just rejoicing when I saw the video. She was struggling to get a word out but I remember thanking God for her healing in my dream. I remember she had on a red dress.”

Instant Gratification and Formulas

  
Our culture has become so obsessed with instant gratification and three-step formulas to solve any problem. 

With the technology available to us today, we are able to find answers to just about anything in a matter of seconds. Or, we can find a formula that will lead to answers or success if only you “follow these three steps.”

We have become so conditioned to be able to have what we want when we want it, and waiting is nearly unheard of in our culture today.

Waiting is a discipline that so many of us lack. Just look at the amount of consumer debt in our country! People are impatient.

I know this mentality has leaked into my prayer life and into my expectations of God, as hard as I try to fight it.

As I pray about Tori and her healing, my thoughts often wander to wondering if there are steps I am not following…as if there are magic words that would instantly make everything better. Obviously, that is not biblical and I know that. But it happens. 

I watch her regress and I observe her pain, and my mind desperately seeks the secret code, the perfect combination of words that God is waiting to hear. And I want Him to heal her NOW, not later.

But our God isn’t like that. Our God created time and He doesn’t operate within our concept of it. The Bible tells us this:

But you must not forget this one thing, dear friends: A day is like a thousand years to the Lord, and a thousand years is like a day. (2 Peter 3:8)

For you, a thousand years are as a passing day, as brief as a few night hours. (‭Psalm ‭90‬:‭4)

So, even though I want her to be healed NOW, I must trust the timing of the One who created time. The same God who created everything we see is the same one holding Tori in His hand and He knows her future. 

He isn’t a God of formulas or magic spells. His Word tells us that we are saved by FAITH through God’s infinite grace, and not by works (Ephesians 2:8). When Jesus healed in the Bible it was because the sick believed in Him and that He could do it. They had faith.

Jesus didn’t heal everyone instantly in the Bible – there are a few situations where He waited so that His power could be displayed in greater ways. Lazarus. The Centurion’s daughter. His own resurrection. The wait was always worth it.

And it is that same God to whom we entrust Tori. Whether her healing will happen here or in Heaven, we know that His timing and method are perfect, no matter how hard the time of waiting may be. 

We will pray, and we will patiently wait for Him to move.

  

Guest Post: Tori Travels Project

Hello #TeamTori friends and family!


My name is Laura Gutknecht, I am a friend of Lesa’s, and I had the pleasure of traveling with her recently to Charleston, SC for a relaxing weekend.


I want to thank the Brackbill’s for hosting me on their site today and for giving you a chance to support them.

This is a NO COST way to show Lesa and Brennan just how far #TeamTori is willing to go.

 

The challenge is this… take Tori with you… EVERY WHERE!

 

What do I mean by that?  


I mean print off one of the photos below and take her to work with you, on vacation, to the beach, to your prayer group, to the mall, on the train, and take her to your home.  


Then send your picture of you and Tori to TeamToriTravels@gmail.com WITH your story.


Your story: Tell us who you are, who is in your picture, where you are in the world at the time of the picture (very important), what adventure you are on, and tell us about YOU and why you support this family. It doesn’t have to be uber creative – your name, location, and what you’re doing is plenty, the rest is icing on the cake!


Take a few pictures… with your crew (or a selfie) and with your crew and Tori.


A few of us have been doing this already.

 

  

      

 

 

Why do we want the pictures?

That is a great questionWe will be making a book for the Brackbill’s to enjoyIt is really a book that shows the faces of their supporters so they can SEE each one of us cheering them on.


Extra Credit:

You can also post the pictures on social media with the hash tag#ToriTravels and encourage others to take on the #ToriTravels challenge too.


Please note:  ONLY the pictures and stories sent to the email address TeamToriTravels@gmail.com will be used for the book. We have a handful of gals working on this project so keeping it in one place is key to getting the book into their hands sooner.


How long will you accept pictures?

This will be an ongoing request for photos and stories so take Tori to summer camp, to Thanksgiving, and even Memorial Day next year!  


How many times can I send pictures?

Send as many as you’d likeOur goal is for Miss Tori to see the whole world through you!


If you’re the only ones submitting photos we might have to give you a gold star and edit out a few photos. Consider a warm thank you because we already appreciate the support!


Is there any other way I can help?

If you want to join our photo gathering team let us know at TeamToriTravels@gmail.com


Keep encouraging Lesa and Brennan on their blog and Facebook page.


If you want to give to the Brackbill’s they can use Amazon and Grocery Gift cards – they will always need to eat

They are taking care of Tori so anything that reminds them to take care of themselves is great too – like getting new clothes for themselves (Old Navy, Gap, Kohl’s, Target, JCPenny), books, iTunes (for worship music).


And last, but certainly not least. Cover this family in prayer. Pray for Tori. Pray for Brennan and Lesa. Pray for their doctors and caregivers. Pray for those who are touched by this family and need love and support of their own


Pray for love, grace, and encouragement to fill those in this family and in this community.


Safe Travels to you all as you embark on the #ToriTravels challenge!


Can’t wait to “see” you soon!

Laura

 

Pictures of Tori to Print or add to your smart phone: