Tori’s Baby Dedication

We had always intended to do a formal dedication of Tori at our church, but it became quickly forgotten in the midst of all that has happened in the past eight months.

A baby dedication is different from infant baptism: it is a public promise of the parents (and the congregation) to raise the child according to God’s Word, to teach them about God and His love.

Most parents who dedicate their child to the Lord do it assuming that they will be raising their children to adulthood, but ours had a slightly different meaning.

Today, Brennan and I stood before God, family, and friends and committed publicly that Tori is God’s. Tori belongs to Him, and we will be thankful for whatever length of time He chooses to bless us with her earthly presence.

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As our pastor said, Tori will have an impact greater than we can even begin to imagine, and we may not fully see that impact until Heaven. Her story is not tragic because we have the hope and assurance of eternal life, and we know that she is here for a purpose – a godly purpose.

Our pastor did a fantastic job and it was a very moving time. We are so thankful for our friendship with him and his family, as well as the solid teaching and discipleship he brings to our church.

If you would like to watch the video of the dedication, you can see it here.

Many thanks to our cousin, Sarah, for coming to take professional photos of the event for us. It was so important to us to have it captured well. Thank you, also, to our friend, Micah, for coming to video it so that the footage can be included in the documentary he is creating about Tori and about Krabbe.

And thank you to the family and friends who were able to join us today! We know not everyone could make it, but you can see the entire dedication here!

How You Can Help

We are asked several times a week how people can help us practically and tangibly, and we usually don’t have an answer. God is taking amazing care of us and we are so thankful!

We are doing okay financially thus far, thanks to Brennan’s hard work and his excellent job and benefits, but we still have very tight pay periods from time to time. We continue to live on a strict budget in order to make it work. 

Your prayers and notes of encouragement are an amazing blessing to us – we keep them all!

We have been told that some want to do more to help us, and we don’t want to say no to others’ desire to help. We, too, love to tangibly help others whenever possible, so we understand the desire to “do more” when possible.

So, Brennan and I have come up with a few things that would be helpful IF you wanted to support us in this way, but it is in NO way expected. 

  • The original GoFundMe account is still active. The link is: https://www.gofundme.com/luphsw?fb_action_ids=10205843215261819&fb_action_types=og.shares We reported how we made use of the funds in this post. The funds were depleted in July with the necessary purchase of the van, and we are so blessed each day by that vehicle! 
  • Some of Tori’s medications were ruining our cloth diapers so we switched to disposables a couple of months ago. She currently wears size 2 Pampers Swaddlers. Wipes would be wonderful as well.
  • Jimmy John’s gift cards (they deliver and Lesa orders lunch from them when Tori has rough days because it is fast and easy).
  • Donations toward a monthly housecleaning service (we had it done in June by a wonderful local woman and it was an amazing help to us; she charges $60).
  • Panera gift cards are a great healthy dinner help.
  • Dream Dinners gift cards so we can have meals in the freezer for easy dinner prep.
  • PeaPod or Giant gift cards for grocery delivery
  • Coffee is pretty great 😉
  • iTunes gift cards would allow us to buy some new worship music…
  • Amazon and grocery gift cards are always useful.
  • Anything that reminds us to take care of ourselves is great too – like getting new clothes (Old Navy, Gap, Kohl’s, JCPenney, etc.), pedicures :), or haircuts.

Our mailing address is:
Team Tori
P.O. Box 126425
Harrisburg, PA 17112

The biggest thing you can do to help is to continue to spread the word, write to legislators, and fight for Newborn Screening for Krabbe!

We can’t think of anything else, so hopefully this is helpful if you are one of those who have asked us how you can help! ❤️

You have all blessed us more than we could ever repay – thank you for bringing such joy to our lives during this challenging season.

My First Dream Dinners Experience

From start to finish, my experience this morning with Dream Dinners was just that – a dream. Every step of the process is so well thought-out and it was such a blessing!

I posted about this previously, after I signed up for my first session, and I am excited to share with you a little about the experience today.

When I walked in, I was warmly welcomed by an employee who guided me through the process and made everything easy to understand.

I put my purse and paperwork in a drawer with my name on it, grabbed an apron, washed my hands, and got to work!

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There are many stations with specific recipes and the required ingredients for each. Because you can make either 3 or 6 serving meals, they make it easy to identify the necessary measuring amount by color coding the handle of the spoon for each dry ingredient. That color corresponds to the ingredient list so that you don’t have to waste time trying to find the correct tool!

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All of the ingredients, bags, and labels are right there at each station. You assemble the meals according to the directions and it takes about 5 minutes to assemble each meal. Easy!

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You choose a section in the cooler for your meals and you place them in the cooler as you complete them, to ensure that they remain cold/frozen while you work.

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They also have a freezer with some pre-made meals, sides, and desserts, and I picked up a few of each of those items to accompany our meals.


I came home with 10 dinners (some with sides already in the bag), three extra sides, and two desserts. We hope to make each meal last for two meals by adding vegetables and other side dishes, so it should be 20 meals!

They have an introductory offer of 18 servings (6 different meals if you choose the 3 serving option) for only $74.95, which makes it $4.16 a serving! If we can stretch each meal into two meals, it will make it an even better deal.

You also earn points for every meal you make (and other things like sharing about Dream Dinners), and every 500 points gives you $10 off! By signing up today for September’s meals I earned double points!

Could you do it for less on your own? Sure, but I just don’t have the time or energy right now to do the prep work, honestly. I’d rather devote my time to caring for Tori.

If this sounds like something that would interest you, check out their location list today! It saves time, energy, preparation, and can even save you a little money along the way.

Please use me as your referral!

When you tell them who referred you at the time of sign-up, that person earns points toward free meals, and that would help us out.

There will be a place to enter the email address of the person who referred you – mine is my first name.last name at gmail.com (not directly mentioned to avoid spam).

An added blessing came our way as I was checking out at the end of my session. Someone left a gift card for me there! I was able to apply it to next month’s session, greatly reducing the cost!

To whoever left the generous gift card, THANK YOU. Your unexpected kindness means more than you know!

Check out Dream Dinners and let me know what you think!

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 ❤

Tori’s First Birthday Present 

We bought Tori a first birthday present! (Brennan is holding her feeding equipment,because we forgot the pole).  

With the ever-increasing amount of equipment she requires, it became quickly evident that a “new” vehicle would be necessary. Her adaptive stroller doesn’t even fit in our current trunk well.

We got an amazing deal on this 2011 minivan (only 63,500 miles on it!) and we get to pick it up on Monday (there was a recall on a window switch for the van so they have to fix it before we can have it). 

We are so excited!

Tori’s Adaptive Stroller

The Zippie Voyage was delivered today! 

Many families wait MONTHS to get their equipment, which is just wrong. We are so blessed that it took only three weeks! 

   
 This stroller has a pole for feedings, an O2 tank holder, and plenty of room for all of the equipment she requires. Plus, it provides amazing support for her body.

The man who delivered it said that he can’t believe our insurance approved everything they asked for without even a question. He has never seen that happen. Praise the Lord! 

We can’t wait to get her out and about more in this, though it doesn’t currently fit in our vehicles…we are working on that 😉 God is so good!

Now Tori will fit in with all the cool kids next year at the Symposium 😉❤️

Rejoicing in the small things…

This has been an amazing morning so far – possibly the best one since Tori got sick three months ago. 

It isn’t because of anything huge; rather, it is the little things that have filled my heart with joy.

  • Tori and I slept for SIX hours straight. Six.
  • Because of this, I have been up since 5:30am because I felt so rested.
  • I was able to shower and get ready before Brennan left for work (always the goal, never the reality).
  • Our grocery delivery came at 7:30am with lots of produce, allowing me to start the first day of my diet well.
  • Our canvases (from our recent photo shoot) are being delivered today!
  • Brennan and I were able to help someone this morning – something we love doing.
  • Tori is being calm and not very fussy – maybe because she actually slept? 😉

I’m sure there are more things I could add, but you get the idea.

In the midst of our new normal, little things are everything. We will continue to rejoice always (Phil 4:4) knowing that the Lord is on our side.