Tori’s Bucket List: Join a Hockey Team

We were recently contacted by a woman whose daughter plays for one of the Hershey Jr. Bears hockey teams. She was touched by Tori’s story and said they really wanted to do something special for her.

She later contacted me and asked if they could make Tori an honorary member of their team and have a little ceremony to commemorate it. We were so excited! Brennan LOVES hockey and this was especially meaningful to us because we are fans of the Hershey Bears :)

They asked us to come to the rink before their game and two of the girls read a touching speech about Tori and Krabbe. Tori was then presented with a stick, a puck, and a jersey. She’s really part of the team now!

(photos below courtesy of Pam Huggins, one of the team moms)

(Photos below taken by Brennan’s sister, Kelly)

This same group is organizing a mother-daughter tea party for Tori and you are welcome to join us! We are so excited about this! Details are below:

 
Thank you to Wendy and the other parents who made this possible. Thank you to the girls for allowing Tori to be part of your team <3

Tori’s Bucket List: Wear Mama’s Wedding Dress

Some of the items we have added to Tori’s Bucket List were inspired by the lists of her Krabbe buddies.

This one was first done by Anniston, and when I saw the photos I messaged her mom and asked if she would mind if we copied the idea. She was so excited that we wanted to do it!

This idea made me so happy because Krabbe has robbed Tori of the option to wear my dress on her wedding day. Krabbe has stolen so many precious moments like these away and I wanted to take this one back in our own way.


To make this even more fun, I didn’t tell Brennan. I wanted this to be a surprise for him and I hoped that seeing his baby girl in my dress would be incredibly meaningful and special to him.

I asked his cousin, Sarah, what she thought of the idea and she was so excited! She even contacted a florist to make the floral crown for the photos! I love that the florist used daisies without even knowing that the daisy is my favorite flower ❤️

Special thanks to Sarah B Photography for the fabulous photos, Foster Flowers for the floral crowns, and Michelle Morrison for helping with everything.

Brennan’s reaction was priceless and more emotional than I had imagined.❤️

Here are just a few of the beautiful images Sarah captured today:

 

One Year Ago Today: The Leukodystrophy Diagnosis

   
 After Tori’s MRI on February 4th, we received a call from a neurologist inviting us to come in to discuss the results.

It was in the middle of the day on a Friday – the second bad Friday in a row – so Brennan decided to stay at work and my mom went with Tori and me to the appointment. We didn’t know what we were about to hear or how important it was.

Tori napped as we waited for the doctor to come in. She was so peaceful and it kept me calm.

When Dr. Byler came in, she introduced the two medical students with her and began evaluating Tori before discussing the MRI. I don’t remember exactly what she was saying to the students, but I remember the word “spasticity” among others.

Then she pulled up the MRI images and began to explain what she saw and suspected. You can read the original post here.

She said it was likely a form of leukodystrophy and that not all could be treated. It would take bloodwork to determine the specific type Tori has. 

I remember her asking me if I wanted to know what she thought it was, and I said no. Me, the researcher, didn’t want to speculate. I’m not sure what made me say that but I am glad I decided to not know. Dr. Byler even said that was wise.

Looking back, I know she knew it was Krabbe. She knew it was a death sentence.

She added that most (if not all) leukodystrophies are genetic, so we might want to put having future kids on hold. We would hear those words again many times in the next few weeks.

I felt numb and discouraged. It seemed like things were continuing to get worse and worse with every appointment.

Brennan ended up coming home early that day after I filled him in because he was too upset to continue working. We are so grateful for his employer and their graciousness throughout this ordeal.

I was obviously upset and Tori knew it. I assumed that was why I couldn’t get her to nurse, so I purposely tried to be calm and collected while holding her. She didn’t eat much the entire day.

This was not the first time she wouldn’t nurse, so we called the pediatrician. He had us come to the office immediately.

Dr. Krall discussed options with us and recommended a feeding tube (NG), which we would have to have done at Hershey Medical Center. He made arrangements and we went home to wait for the hospital to call to say they had a room open.

Somehow, in our stress, it didn’t register that we might be there for a few days. We thought they would insert the tube and we would go home that night. Because of that, my mom stayed home and we didn’t pack anything.

Sure enough, they admitted her to the children’s hospital. 

Right around that time, our pastor texted and asked if we needed anything, like dinner. I had my mom pack up stuff for us and then our pastor and one of the deacons came to the hospital with our stuff, dinner, and snacks. That would be the first act of amazing kindness that would come our way this year.

As we look back one year, the day was obviously tragic, but it was also filled with goodness, joy, kindness. We were surrounded in love by so many. 

Little did we know that we were going to need that love so much more in the days to come.

One Year Ago: The First MRI

Tori’s first MRI was one year ago today.

We blogged about it here and here.

  
 

  
We didn’t see the images of the MRI (or learn in detail about what they saw) until February 6th, but I want to include them in this post.

We have never shared these publicly.

Here are two screenshots of Tori’s brain on February 4, 2015.

   

We knew then that something was seriously wrong, even from our medically-untrained perspective.

Tori will have another MRI later this month and I will be very interested to compare the images to see the disease progression.

Krabbe is a terrible, horrible disease and every child should have the opportunity to be screened for it (and other leukodystrophies) at birth. 💙

Vision Therapy Fun

Tori’s vision therapist always finds really creative ways to stimulate Tori’s senses – today we celebrated Mardi Gras a bit early :)

Besides looking at various items, Tori felt and listened to the beads, felt the unique texture of the feathers, and enjoyed the essential oils we were diffusing. The only sense she didn’t use was taste. :)

We multi-tasked and had her in her stander during therapy, which also gave her a fresh perspective.

We are so thankful for all of her Early Intervention therapists!

 

Eighteen Months

 

Monthly Photos of Tori2.jpg

Just a FEW of our favorite photos of Tori from the past eighteen months <3

Today marks Tori’s eighteen month “birthday” and it is quite a milestone in the world of Krabbe.
   
    
 

One year ago she was six months old; today she is only six months from her life expectancy.

One year ago today, as we sat in the emergency room, we wrote this post in an effort to recap for ourselves what had happened over the past month. We were desperately trying to put the pieces together in hopes that a solution would appear.

We wrote this post after her CT scan that evening showed brain abnormalities and we were left to wonder if our baby was going to live.

Two weeks later we received our answer.

The past year has been a whirlwind and a nightmare in many ways, and yet, it has also been a wonderful, purposeful, deliberate year filled with cherished moments and abundant memories.

Today we celebrate the fact that Tori is doing well, and we pray that she will exceed her life expectancy of 24 months. ❤️ We are so thankful for every moment the Lord allows us to have her with us.

Tori’s Medical Equipment 

I thought many of you might be interested in learning more about the various pieces of equipment in our home that help keep Tori healthy, nourished, and comfortable. Each of these help maintain her quality of life.

 Cough Assist:

  
This machine helps keep Tori’s lungs clear by simulating a cough – something she can no longer do on her own. 

It forces air into and out of the lungs which loosens anything that might be in there. I’ve been told it feels very unnatural. 

After using the cough assist we suction Tori well and then give her two puffs of albuterol. This is done at least once a day, and if she ever gets sick it will be done every four hours around the clock.

Feeding Pump:

    
  

This is the single most important piece of equipment in our home because it is how Tori has been fed for nearly a year now, through her g-tube.

We are able to adjust the speed of the feed as needed (last summer, for example, we slowed it down to feed her over an hour instead of thirty minutes), and it makes feeding her very simple.

All of the feeding bags (three per day) and other supplies are delivered to our house every two weeks.

Pulse Oximeter:

  

This machine monitors the oxygen levels in her blood as well as her pulse. 

Stander:
  

  
The stander is an amazing invention! 

You can read about the benefits here.

The goal is to get Tori in her stander for at least one hour per day, with the ideal being two one-hour sessions per day.

Suction machines:  
  

 

We have two suction machines for Tori – portable (top photo) and stationary (bottom photo).

These two are vitally important as Tori began to lose her swallowing ability in June 2015. This allows us to remove secretions from her mouth to prevent aspirations.

Oxygen Concentrator: 

   

The concentrator pulls air into the machine and somehow keeps only the oxygen, which then flows through the tubing and into Tori’s nose. 

The top part of the machine is a “home fill” machine which allows us to fill her oxygen tanks on our own. 

We keep the large concentrator in our bedroom and have 25 feet of tubing to move Tori around the house without having to move the machine.

“Shaky Vest”

  

We haven’t been able to use this yet, but it is another tool to help Tori’s lungs remain clear and healthy.

Tori’s vest was ordered months ago by her pulmonologist, but we have yet to receive it. Thanks to Tori’s buddy, Parker, and his parents (and thanks to Hunter’s Hope for helping get it to us), we now have one to use until hers comes in. 

The vest vibrates and gently “shakes” the baby in order to break up anything that might be in the lungs.

The other Krabbe parents report that their babies love the vest treatments, so we can’t wait to see what Tori thinks.

Adaptive Stroller:

  

You can read about her stroller here.

We are thankful for each of these pieces of equipment, even though they take up a lot of room in our house. 😉 We are even more thankful that our insurance paid for all of these without questioning anything and that we received her equipment fairly quickly. That is rare and we don’t take anything for granted.

Now you have a little insight into the technology and equipment that we use to help Tori feel as great as we can ❤️