Financial Transparency and Blessings

We have been wanting to share how we have been using the Team Tori funds for quite a while as a way of being transparent, as well as to show our stewardship with the amazing financial blessings that have been sent our way by very generous people.

Since the amount is publicly known, we wanted to use this as a way to say thank you once again. We don’t feel that we “owe” an explanation, but we want to give one as a way to show you how much your generosity has blessed us and has enabled us to take even better care of Tori than we could have on our own.

When our friend Jessica surprised us with the GoFundMe page we were still in the hospital with Tori, pre-Krabbe diagnosis. She set it up to cover both medical and living expenses that we might incur because of Tori’s situation. We had no idea what we were facing or how much it was all going to cost. To say that we were blown away by the support that came in is an understatement!

We would have been more than happy with the original goal she set of $5,000, which would have covered our deductible and out-of-pocket requirements for our insurance; but you kept giving and giving, and eventually over $19,000 was raised. That doesn’t include the cash, checks, and gift cards that were sent directly to us, either!

You may have been wondering how have we spent the money, so we want to share with you that we have done so very carefully. This probably doesn’t include everything because my memory has been affected by a lack of sleep, but it gives you an idea! We promise that none of it has been used frivolously or carelessly, and all has been for Tori’s benefit.

Because of your generosity, we…

  • Filled up our HSA (health savings account) as much as was allowed legally in order to pay medical bills;
  • Purchased a deep freezer to hold Tori’s breastmilk;
  • Purchased essential oils to aid in keeping Tori (and us) healthy, as well as to help with pain relief for her;
  • Purchased an inexpensive laptop ($300) for hospital stays and traveling so that we could update the blog and communicate properly (we discovered how difficult it was to only use our phones while we were in the hospital for five days with her in February);
  • Purchased supplies and ordered photos to create her Project Life albums so that her story is fully recorded in words and photos;
  • Reduced Brennan’s work week from five days a week to four days so that he can be home with Tori three full days a week…
  • Started making memories with Tori off of her “Bucket List“;
  • Paid for our stays at the Ronald McDonald House and other expenses to get us to and from Pittsburgh for her appointments;
  • Took Tori to California to see Lesa’s side of the family, who aren’t able to travel to see her in Pennsylvania;
  • Helped another Krabbe family pay for a piece of equipment they desperately needed and insurance was fighting with them over;
  • Traveled to the Hunter’s Hope Symposium where we received much needed encouragement and knowledge;
  • And more than I can even remember, I’m sure…

All of that listed above amounts to less than $10,000.

On top of this, you all voted diligently and we won $1,000 in free gas from Exxon! This is going to last us for a very long time and we were able to take gasoline out of our budget! Huge blessing!

As you can see, YOU have been God’s hands and feet to us, and through you He has taken care of some significant needs during this time. This has eased some of burden we carry in this journey with Tori and has allowed us to have much-needed time together as a family. Priceless.


We have been so fortunate to have amazing primary insurance that has covered EVERYTHING for us. We do not take this for granted or even expect it to continue, given the issues that so many families have shared with us.

We had kept most of the money in savings in order to pay for things we assumed that insurance wouldn’t cover, but, thus far, Brennan’s insurance has covered all of her equipment, even the $5,300 adaptive stroller!

But, once we got the stroller we realized that we had a significant problem: it wasn’t going to fit in either of our cars.

Her stroller, which provides comfort and support so that she can travel more comfortably, would not be able to leave the house/neighborhood.

We realized that a different vehicle would be required, so we started looking, knowing that we didn’t have the money saved up to pay for it (we follow Dave Ramsey and don’t believe in financing anything :) ), nor could we afford a car payment right now.

So, after seeking counsel from trusted friends and family, and after prayer, we decided that this was the best possible use of the Team Tori funds that we had left. After all, what good is all of this equipment if we can’t take Tori out of the house?

We knew our budget of $14,500 was low for a minivan, but we started looking anyway. There were three used minivans on the market at local dealerships, all with low mileage and unbelievably low prices. We consulted with a friend who is a car expert and he advised us to pursue one of the three – the same one we loved!

So, we went to the dealership, test drove the one van (2011 Dodge Grand Caravan Crew) we loved the most (and Tori slept through the entire test drive because she was so comfortable in it!); they wanted more than we had for it, but Brennan did an amazing job of negotiating and talked them down to exactly what we had left in the Team Tori fund!

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We paid for the van in cash and walked away SO excited, knowing that Tori would now be SO much more comfortable in “her” van, and knowing that we didn’t have to be afraid to take her out of the house as much anymore.

Tori always used to cry in the car…she rarely cries in the van now. It is obvious that the smoother ride has made a difference for her.

We absolutely believe that the purchase of the van was a God-ordained thing! From the timing to the amazing van we found for just the amount of money that we had, to the fact that it can not only store all of Tori’s equipment with room to spare AND she is comfortable, it has been one of the greatest blessings of our lives.

The fund has been building back up thanks to so many donations toward her “Bucket List” – and that is exactly what those funds will be used for. Experiences, memories, joy. Designated funds are used as they are designated.

We are very diligent with these generous gifts that you have given to us and we do not take your generosity for granted. Every gift that we have received has left us in awe and wonder of God’s love – and your love – for Tori and for us, that even in the middle of the worst storm of our lives, He is there, calming the waves and making a way for us to focus on the important things, like loving Tori with our whole hearts.

So, THANK YOU. Thank you for supporting us, for organizing fundraisers, for designing t-shirts and bracelets and Jamberry wraps; for bringing us meals, for pumping breastmilk so that Tori has nourishment; for sending Tori cards and gifts (and giraffes), and for allowing the three of us to have so much cherished time together; thank you for spreading awareness about Krabbe and leukodystrophies, for contacting your legislators about Newborn Screening legislation.

Most importantly, thank you for continuing to pray for Tori and for us. We know that God hears our prayers, and even if He chooses to answer them in a way that we don’t like, we will still praise Him and serve Him, because we know that He is good, loving, and kind.

Thank you doesn’t seem like enough. This long post doesn’t seem like enough. Know that we are so blessed by each and every one of you who follow Tori’s story. Your encouragement and prayers get us through each day <3

Book Review: Longing For Paris

It is rare that I pick up a book that speaks directly to my place in life and my current emotions, but this book did just that.

The full title of the book is: Longing for Paris: One Woman’s Search for Joy, Beauty, and Adventure-Right Where She Is, and it is filled with wisdom, vulnerability, and joy.

Sarah Mae humbly describes her journey to being content and finding adventures in her own town rather than constantly longing to be somewhere else – in her case, Paris. Her vulnerability and honesty are refreshing and impactful. She gained some amazing insight along the way and I underlined so many full paragraphs throughout the book.

Being a stay-at-home mother (to a terminally ill baby, at that) has often made me feel like I have to put my dreams on hold, like the things I was created to do (missions photography, for example) outside of motherhood will just have to wait. And to some extent they likely do need to wait; but, this book has shown me that there are ways to continue pursuing and refining my God-given desires and longings right here at home.

I don’t have to travel right now to refine my photography skills; I don’t have to travel to become a better writer; if I focus on God and on being content in my circumstances, there are adventures and joy to be found right here, every day, and all of this will continue to prepare me for whatever God has planned for me. This book reminded me that I am called to be where I am right now, and that God has placed these longings in my heart for a purpose, even if I cannot act on them right now.

There is so much more I could say, but I want you to read it for yourself!

Here are a couple of my favorite parts:

‘I want to be who God made me to be: colorful and beautiful and gifted, which brings me pleasure and Him glory…I want to carry myself with confidence in who I am; I want to embrace beauty because God made it. I don’t want to base my identity on physical beauty, because it’s vain and fleeting, but I want to enjoy beauty because it is pleasing to God to have me take pleasure in it.” (p.62)

 “When we look for Him, pushing all hindrances aside; when we aim for and keep our eyes on Jesus, letting nothing compare to Him, then I think we will be fully made available to Him, for Him. And we will change the world because God needs available people to be devoted and dedicated, laid open and vulnerable before Him so that in our weakness He is made strong. His power will come through us, and we will be able to do real Kingdom work, the kind that urges us out of our comfort zones as ourselves. We will be available to be completely used by Him.” (p. 68)

And the last one I will share:

When God wove us together out of dust and love, it was personal and intimate. God did not speak me into existence like He did the sun and the moon and the plants and the animals. He formed me, molding with his hands, and He breathed His breath of life into me. He knit me together in my mother’s womb. He knows me by name, and He knows every hair on my head. I am not spoken into being. I am created. I am art. I am the artwork of God.” (p. 137)

You won’t regret picking up this book. It is beautiful, insightful, vulnerable, and filled with wisdom. Sarah Mae is a talented writer and shares her heart so openly in her writing – see more of her work here.

Life with a Feeding Tube

We try to educate others about our everyday life as much as possible, especially when it comes to unique medical things that we ourselves knew nothing about six months ago.

That is the goal of this post: to show what it is like to feed Tori through a G-Tube and how that affects our lives.

Tori first received a feeding tube on February 6, 2015  (NG Tube, which goes through the nose to the stomach). She had stopped nursing well and wouldn’t take a bottle. This was a symptom of Krabbe but we didn’t know that at the time.

Hershey Medical Center provided us with adorable stickers for the tube because, as the nurses said, if she was going to have a tube it would at least look cute 😉

She had her G-Tube/Nissen surgery on March 23rd at Hershey Med and I was afraid to take care of it. Other Krabbe parents had said it would make life so much easier but I didn’t believe it. This was much scarier than a tube through her nose – this was a portal directly into her stomach!

But, they were right. The G-Tube makes feedings fairly simple, and the Nissen has greatly decreased her vomiting (a Krabbe problem that she had from birth).

Another plus was that we were able to see her beautiful face again!

So, what do feedings look like?

Well, to start, here is what our schedule looks like currently:

Having a strict schedule helps us ensure that meds are given at the proper increments (some have very precise rules about timing), and it also helps us plan excursions because we easily know what she will need while we are out.

There are many pieces of equipment and many supplies that are always on hand and they are delivered to our home monthly: feeding bags, G-Tube extensions, syringes, etc.

On the left is the G-Tube, also known as a MIC-key Button. We replace it every few months at home. We use the pads on the right instead of gauze to absorb any residue that comes out of the tract. The pads are changed 1-2 times a day.

Below is the pump and pole that we use at home. Her adaptive stroller also has a pole, and we have a portable IV pole for traveling. This works far better for us than the backpack that came with the pump because we always had issues with keeping the bag above the pump to avoid air getting into the tube.

The pump regulates the speed of the feed to ensure that she can tolerate it. She currently eats 125mL over an hour, five times a day. This is slower than it was even a month ago, and it will slow down further as the disease progresses.

We use three feeding bags a day, switching them every other feed.

Tori is still on breastmilk thanks to generous friends who donate their pumped milk to us for free. Some have even shipped it across the country for us!

The milk is frozen in bags in one of our deep freezers (we had to buy one just to hold all of the milk we receive!). If I am on top of it, I try to defrost the milk for the next 24 hours by letting it sit on the counter for about an hour – that way it is still really cold and can safely go in the fridge. I then pour the proper amount into five bottles and add the MCT oil to it (MCT oil is a coconut-based oil that is easily absorbed into the body. Tori has difficulty processing fat of any kind so this is helping her gain weight).

The bottles are then placed back in the fridge until it is time for a feeding. We have a breastmilk warmer that is fantastic and it ensures that the milk is warmed evenly and safely.

The milk is then poured into the feeding bag, the pump is primed (pushes milk all the way through the tubing to ensure that air isn’t pushed into Tori’s belly), and we begin the feed.

One of the pros of tube feeding is that she doesn’t have to be awake.

The milk goes through the extension into the MIC-key button and into Tori’s stomach. After each med or each feed, we flush the tube with 5mL of distilled or bottled water.

She has gained three pounds since her surgery four months ago! This process is complicated but it has become part of our daily life and we rarely think about what a pain it can be (except now, as I write all of this out, haha).

Her doctors have encouraged us to still allow her to taste small amounts of things so that she isn’t deprived of the joy of taste. We often forget simply because of the stress of everything we have to do each day for her, but when we do remember she really appreciates it!

I miss the ease and convenience of breastfeeding, but knowing that she is safely consuming her calories without risk of aspiration makes all of this worth it.

Tori’s Bucket List: Lake Tobias

We’re on a roll with doing things on Tori’s bucket list!

Today was the perfect day to go to Lake Tobias, a wildlife park about 40 minutes north of Harrisburg.

A sweet family who follows Team Tori contacted Lake Tobias (and the park donated tickets!) and sent us a gift card for lunch and a visit to the gift shop. Thank you, Firment family for arranging this and for the generous gift, and thank you, Lake Tobias for the tickets!


All ready to go!

You can see the full gallery of photos below, but here are a few of our highlights:

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IMG_9224 We invited cousins Megan, Wade, and Alayna to go with us <3

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We walked around and showed Tori the animals, and she seemed to enjoy the scenery. Then, we went on the safari ride, which was a little bumpy…but Tori was a trooper and slept through most of it. :) We were able to use the handicap accessible bus which had fewer people and it had a lift for Tori’s stroller to easily get on the bus. So helpful!

We had lunch after the tour, and we ate at the same place Brennan and I did on our first official date six years and one week ago. That made it extra special! We forgot to take pictures – we were too hungry and the food was too good, so we were distracted. But she had a picnic!

We ended our visit at the gift shop, and we were surprised at the number of giraffes they had in there that we don’t already have! So, of course we bought them ;)

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Tori had a great nap on the way home (and when we got home) and awoke bright-eyed and ready to play!

It was such a great day and we are so glad we could take her on a little wildlife adventure today so close to home.

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More pictures from our day (not in order because galleries are randomized, but you get the idea)…

 

 

 

Stander Fitting!

There are many pieces of equipment that help our Krabbe babies, and a “stander” is one of those things.

  

Tori will be getting the EasyStand Zing MPS.

The stander provides the following benefits:

  • Improves/maintains range of motion
  • Decreases joint/muscle contracture 
  • Management of atrophy in the trunk and lower extremities 
  • Improves strength to trunk and lower extremities 
  • Decreases muscle spasms
  • Improves/maintains bone integrity/skeletal development 
  • Lessens/manages the progression of scoliosis 
  • Manages pressure (ulcers) through changing positions 
  • Improves bowel function and regularity 
  • Aids in kidney and bladder functions 
  • Strengthens cardiovascular system and build endurance 
  • Improves circulation 
  • Reduces swelling in lower extremities 

By the age of 1, most babies are moving around and learning to stand on their own…Tori can’t do that herself, so this will help her body receive the benefits of standing.

Tori had her fitting today and we are excited! This is a new model and it has many helpful features that will make her more comfortable.

To start, you lay the child down and properly strap them in.   
  
Then, you slowly raise them up to a standing position.

  
    

At this point Tori was voicing her displeasure at this new position 😉 Don’t worry – she wasn’t in pain, it was just new.

    
    

Maybe this isn’t so bad… 😉
    
   

As you can clearly see by her facial expressions, she wasn’t so sure about it at first, but she adjusted to the new position and seemed to enjoy standing up.

We should have her stander in about a month or less! 

Tori’s Bucket List: Finger Painting

Tori’s vision therapist came with materials for finger painting today to check an item off of her bucket list!

   
    
    
    
    
    
   
She seemed to like the feeling of the paint (she didn’t complain, anyway). And now we can frame her artwork! ❤️

Thank you, Cheryl, for helping Tori have this experience!

Tori’s Bucket List: Catching Fireflies

Well, this one didn’t go as planned, but those are always the best memories anyway! (You can see her full list here: http://thebrackbills.com/toris-bucket-list/ )

Tori’s Grandma Amy and Aunt Kelly spent the evening with us so we decided to do another bucket list item: catch fireflies so Tori could look at them in a jar (and then release them, of course).

I didn’t have the joy of experiencing fireflies until I was 19, so I wanted her to see them at the young age of 1. 😄

Brennan and Grandma Amy caught a whole bunch of them and Aunt Kelly held the jar. I was holding Tori on the porch so my picture taking was limited (could only use phone, and it was getting dark…).



But the fireflies wouldn’t light up in the jar! We waited for quite a while and even put grass in there for them. They just crawled around the jar…


We all laughed because it was so funny that the fireflies were being so stubborn 😉 But we had fun anyway and can try again soon.

Tori is worn out from such an exciting day! Let’s hope she sleeps well tonight!