The Day Before Krabbe…

Today marks six months since we have seen Tori smile. 

We only know the date because of this picture and the others from that day.   

It took us about a week to realize that she had stopped smiling, playing, laughing, and when we did we assumed it was temporary. A growth spurt. Teething. Not a terminal disease.

She has now been sick longer than she was healthy. 

Tori was always so happy and full of personality.
   

  

  

  

  

 

   
    
   

She had Krabbe from conception, but it didn’t show up until around January 7th, 2015. 

It hit fast and hard. We didn’t even know what was happening.

Today also marks five months since we received the news that she had a type of leukodystrophy. It would be another week before the word Krabbe would enter our vocabulary.

I’ve never hated a word more in my life.

If caught early, before symptoms occur, they can treat Krabbe with a high success rate. 

This is why it is so vital that Krabbe be added to the Newborn Screenings in each state. 

How can you help?

Please contact your state representative and senators, donate to Krabbe foundations like Hunter’s Hope and Judson’s Legacy, tell others about Krabbe. Pray.

It’s truly a matter of life or death for these precious babies. 

Too many babies have already lost their battle with Krabbe. Let’s do our best to stop Krabbe in our lifetime!

TerraFit

Brennan and I are so excited to start our TerraFit challenge tomorrow! It is a 12 week program through DoTERRA that we hope will get us back into healthy habits. We both have some extra weight to lose thanks to pregnancy 😉 

This program emphasizes clean eating (which we love doing but have been really bad about since Tori arrived), exercise, and teamwork. It is just the thing we both need to reestablish a healthy lifestyle.

As we start to see progress we will post our before/progress pictures. 

If you are interested in learning more about TerraFit, you can check it out here.

We know it won’t be easy, but it is time to make a change.

Celebrating Independence Day 

Tori has been SO alert, calm, wide-eyed, and content today! We love when we know she is feeling well and we definitely love seeing her big eyes when she has them ❤️

Tori’s cousins had sent her a dress to wear today and she certainly looked adorable in it!   
    
    
    
    
    
  

Tori and her cousin Jade matched today! ❤️

 

We are house parenting this weekend, so we spent the afternoon and evening at our friends’ MHS student home just down the street from the student home where we are working. Our boys loved playing with the other boys and we all enjoyed lots of great food.

Their student home has a perfect view of the Hersheypark fireworks so Brennan and the boys stayed for the show. Tori and I headed back to our student home to get her ready for bed.

We had a great Independence Day! 🇺🇸

   
  

  
 

Trying Plan A (The Nissen Saga Continues…)

Tori’s follow-up appointment with pediatric surgery today went well. She slept through most of it. 😄

This was to discuss the results of the upper G.I. study that was conducted last week that showed that her Nissen is still intact, but that she was indeed refluxing past the wrap.

    

He was pleased with how the Nissen is working because he said that it did what it was supposed to do during the study: it was filled to capacity and, instead of her stomach “blowing up” (his words), it was forcing some of the barium to reflux up into her esophagus. 

Essentially, the issue seems to be that her stomach is emptying slower than they would like. Since she is throwing up milk sometimes two hours after her feeds, that is his best hypothesis without doing invasive testing. He said her stomach should be pretty empty after an hour, but given the nature of Krabbe it makes sense that it would be slowing down.

The surgeon presented five options, and we are going to start with the least invasive option: medicine.

We are going to start by giving her a tiny dose that will help her stomach empty faster without any other changes. 

Plan B is to adjust her feeds to be more continuous overnight (to start) – this means a slow rate over a much longer period of time, like 18 hours (not ideal, but better than the other three options).

Plans C-E are not as ideal so we won’t discuss those now 😉 Those are last resort plans.

We will start the medicine as soon as we can get it and we are praying that it will resolve her issue with throwing up. ❤️

Eleven Months! #ToriTuesday

   
   
Tori is eleven months old today! 

All parents lament the quickness with which time passes, but each month is even more precious for those of us whose babies have short life-expectancies, and each month brings a sadness along with the joy. 

Babies with early-infantile onset Krabbe are expected to live to be no more than two years of age. Some surpass that, of course, but most don’t. 

We have thirteen months or less left unless God intervenes.

I don’t say that to make you sad – instead, we choose to use it as a reminder that each and every moment with Tori should be celebrated, appreciated, and enjoyed. 

No one knows what tomorrow holds, so this has been a powerful reminder to live our lives well and with intentionality each day.

Tori is now 14lbs 7oz, so she has started gaining weight once more. 😄 

She is doing much better than she was this weekend and we are so thankful. 

We have an appointment with pediatric surgery on Thursday as a follow-up to her upper G.I. Study last Friday. The study showed that the Nissen is still intact, so that doesn’t answer our question of why she is throwing up. We are praying that they can figure out a solution.

We are so excited to go to New York next week for the Hunter’s Hope Family Symposium! We can’t wait to meet these precious families who completely understand our pain and our journey.

  
Next month we will celebrate Tori’s first birthday – I can’t believe she is almost a year old already! It truly feels like just yesterday that the precious newborn above was in my arms. ❤️

Thank you all for your continued prayers for our baby and our little family! It has been a rough couple of weeks but we have felt your prayers and support. 

God can still heal her! But even if He doesn’t, He is still good. ❤️

Another Emergency Room Visit…

We saw the pulmonologist on Friday afternoon and they noticed that she had a fever of 102. That is the first time Tori has ever had a fever. 

They gave her Tylenol around 3pm and it kept the temperature down until 6:30am on Saturday, when it was back to 102. We gave her Tylenol again and checked her temperature every two hours and it was normal until 6:00pm.

She didn’t have a wet diaper all day which concerned us. We spoke with Dr. Escolar’s nurse practitioner and she gave us suggestions of what to try. 

We waited the appointed length of time, and when she still hadn’t peed we knew it was time to head to the Emergency Room.

The triage nurse was concerned by how few breaths she was taking per minute and that got us into a room very quickly. 

When we walked in, we were immediately surrounded by four nurses and a doctor. Brennan and I were concerned because of their urgency.

They drew blood, put her on a small amount of oxygen as a precaution, and made her mad by messing with her 😉 They put an IV in to get some fluids into her body as well.

    They came in and did a chest x-ray in the room and it came back clear. No pneumonia. That was our biggest fear.

  

Grandma Amy came to visit and be there with us…   

They put a catheter in to draw urine to test and that was apparently the trick! After they pulled the catheter out a waterfall of pee appeared! She decided to poop again as well. The whole room was cracking up! It was all over the table!

Tori slept while we waited and visited with Grandma Amy. They had us give her 4 ounces of Pedialyte through her g-tube to see how she would tolerate it while we waited for the results from the urine test.

   
       All the labs came back clear; however, the last temperature they took was low – 95.3 – so they consulted with another doctor about it. 

They said that it is likely that the Krabbe is progressing since there is no other medical explanation they can find. Not good news but not unexpected.

They are waiting for the respiratory lab results to come in but said we can go home and wait.

We were there a total of four hours and were back at Milton Hershey School by 2:00am.

Thank you all for praying! Now we just have to monitor her body temperature and keep her warm.

Hunter’s Hope Walk 

  

In less than two weeks our family will be traveling to upstate New York for the Hunter’s Hope Family Symposium, and we are so excited. It will be so incredible to be with so many other Krabbe and Leukodystrophy families because no one understands our journey like they do.

While we are there, we will be participating in a short walk (less than a mile, since our babies are fragile) to raise money for Hunter’s Hope.

This organization does so much! One of their biggest roles is to work on adding Krabbe to the Newborn Screenings in each state (43 to go). 

Had Pennsylvania had legislation and Newborn Screening in place, it is likely that Tori would have had a stem-cell transplant shortly after birth and she would be healthy. This testing is crucial!

We have set our family fundraising goal at $1,000 to help this amazing foundation in their research, advocacy, and family support for Krabbe and Leukodystrophy. We would love to exceed that goal!

Would you be willing to donate to Hunter’s Hope for our team? If so, you can donate here: 

http://www.huntershope.org/site/TR/EveryStepWalk/General?team_id=5580&pg=team&fr_id=1881

Let’s support this amazing organization that is doing so much for our Krabbe and Leukodystrophy babies. ❤️