Early Intervention Intake

It has been a quiet week in terms of appointments for Tori – SO wonderful. We haven’t had to subject her to being in the car since last Friday and I know she appreciates that as well. 😄

Several people have come by to pray for Tori and it has been such a blessing. Prayer is powerful and we know that God hears our pleas.

We have been enjoying having my mom here for the past month, but she will return to California on Sunday. Starting next Monday, I am on my own with Tori during the day again. It will be a challenge, but it is our hope that as she adjusts to the medicine and to us gradually putting her down more, that it will be much easier to care for her by myself.

Today was our intake appointment with Early Intervention. I’m already SO happy with the service they provide – and I especially love that they come to our home so that Tori doesn’t have to travel anywhere in the dreaded car seat. 😉

Tori’s official evaluation will be in two weeks. Several specialists will come over and they will also look at the report and recommendations from Dr. Escolar. 

I love that we, the parents, are in charge of what therapies Tori will have. We have the right to say no (though I don’t see why we would at this point), and we have plenty of freedom. They are here to help Tori and to help us help Tori.

During the appointment, the woman told me that there is another Krabbe family nearby, but she obviously couldn’t be specific. I gave her full permission to pass our information onto this family so that we could connect.

I heard from the other family very quickly and they live less than two miles from us. We hope to connect in person very soon, though we obviously wish it were under different circumstances.

Next week she has only one appointment – a follow-up with the G.I. Specialist she saw in the hospital. I have no idea why this appointment is happening, but we will go. 😄 I think it is to evaluate the effectiveness of the MCT oil that we add to the breast milk each feeding to help her body absorb fat.

We continue to be so encouraged and loved by so many and we cannot thank you enough. It makes all of this a little easier.

The future is so uncertain but we serve a God who knows all and He can still heal our baby girl and make her new. That is where our hope is found!


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Surgery Date

Short update…

Tori’s g-tube surgery will be on March 23rd in Hershey. She will be in the hospital at least two days, likely more.

We also have decided to go ahead with the Nissen procedure at the same time. We read about it, heard from a couple of Krabbe moms who regretted not doing it at the same time, and watched how many times Tori spit up or threw up this weekend, and we feel that it is the best move to make. We don’t want to have to do this, but it will make her more comfortable.

This also means that we likely won’t come to California until April now.

Only three more weeks of the NG tube 😄

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Patience and Grace

I have been learning a lot about grace in the past few years – mostly pertaining to how infrequently I offer it in my daily life. The book “Grace” by Max Lucado was eye-opening and I was so challenged by it when I read it a few years ago. 

A practical example? Most of my early driving years were in Southern California. Enough said. 😉 I am much better now in that area.

I have found that patience and grace go hand in hand: for example, being willing to be patient with people is often a form of grace (think Bill Engvall’s “Here’s Your Sign” stories). 

I always try to remember that I usually don’t know the back story behind someone’s behavior or attitude and that helps me to be graceful toward them…usually. Do they deserve my patience and kindness? Yes.

When I became a parent, I was amazed at how naturally patient with Tori I became (I now believe that God gives mothers an extra dose of patience and grace for their babies, especially given the sleep-deprivation that accompanies motherhood). Granted, she was also the perfect baby for the first four months and was rarely fussy or irritable. She didn’t sleep much, but she was at least happy about it.

Throughout the past two months with Tori’s increased/constant irritability, decreased sleeping hours, and the added stress of a terminal diagnosis, I have had to make a conscious decision many times a day to show a new level of patience and grace toward her and the situation. She can’t help how she feels and she doesn’t have any other way of telling me that she is uncomfortable.

I fully admit that the first two weeks of this behavior change were frustrating and I was not very patient. I assumed that the fussiness was simply a growth spurt or something like that, and, given that I haven’t had a full night of sleep in about ten months, its constant presence wore me down quickly. 

However, it is amazing how the word “terminal” can totally transform your attitude in an instant. 

Now, I recognize that a day may come when I would do anything to hear that cry again. To be up all night with her, as sleep-deprived as I would be. To comfort her and hold her. Just one more time.


I pray that this lesson doesn’t fade away as quickly as it came, because it applies to everyone I meet and not just Tori. We have no idea how many days are left in our lives or the lives of others. We cannot imagine what impact our kindness and patience may have on someone’s hurting heart. 

And so, grace continues to be the primary lesson the Lord is having me learn thus far during this wonderful journey of motherhood. It is often accompanied by the lessons of selflessness, humility, and patience. And I am so thankful for the changed person I am becoming, even though the lessons aren’t easy.

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The Hummingbird Program and the G-Tube

Today we had two appointments: The first was with pediatric surgery to discuss our options for a G-Tube, and the second was with the Hummingbird Program to discuss comfort care. 

We are being forced to make decisions that no parent should ever have to make; and, without God’s miraculous intervention, this is far from the end of those decisions.

I know that Tori is not the first child to need feeding tubes, and I know that the G-Tube will greatly improve her comfort and it will reduce the stress around NG tube feedings when I am by myself with her again. But, these are not decisions that we want to be making. I just want her to be whole again, to be healthy and growing and normal.

I found myself feeling paralyzed in a way as the surgeon discussed our options – keep the NG tube since her life expectancy is so short, have a G-Tube (“Mickey Button”) inserted surgically, or do the G-Tube along with a Nissen (See details here), which is what was recommended by Dr. Escolar, but is also a major surgery.

They offered a great deal of information and asked us to think about it at home and let them know. We decided that we will do the G-Tube but will wait for the Nissen since it can be done later. We will see how she does with just the G-Tube for now.

We then headed over to our Hummingbird Program appointment.

Essentially, the Hummingbird Program is for children who have chronic or terminal illnesses. They provide support to the entire family as well as the child. This was our first meeting with them, and it lasted two hours.

We discussed comfort care for Tori and pain management. We were given a prescription for morphine and Valium to use if she is in terrible pain that the other meds aren’t relieving. 

In that moment, I was forced to re-enter the reality that our daughter is dying. There is a fine line between living in hope for a miracle and living in the reality that our baby girl has a terminal illness…that her life expectancy can likely be counted in months, not years. 

The pain we are experiencing as her parents is palpable at times. My heart hurts like never before. Yesterday we began discussing what we want to do if God chooses to take her home – a discussion we never finished because it was too difficult. No parent should ever have to plan their baby’s funeral.

We are waiting to hear when her surgery will be so that we can plan a trip to California to see my side of the family. 

And we are still praying, along with thousands of others, that God is waiting for the perfect moment to heal her. 

Some of the best Bible moments are the impossible situations that are followed by the words, “but God…” We are praying that this is one of those times.


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Trusting God

I have been a follower of Jesus for most of my life. I have attended church since I was born and officially became a Christian when I was eight.

During the past 24 years of my walk with God, I have seen Him do amazing things. I have seen Him keep His promises time and time again. I have watched His plans for me unfold and have always been amazed at how things turned out, because there were many times when I could not see what He was doing. I could only see the trees when He could see the forest. I have seen Him work all things together for good (Romans 8:28).

I could list example after example of His work in my life – including the process of bringing me from California to Pennsylvania, where I met the love of my life and started a family. Brennan could do the same. But I won’t do that right now.

Right now, Brennan and I are journeying along an undesirable path, and we are pleading with God daily to change the course. Losing our daughter is absolutely not what we ever saw coming, and our hearts are broken over the prospect of being childless again.

Over two years ago, God changed my heart about being a stay-at-home mom (and about having children in general). You can read about that here and here.

We prayed for Tori for nearly two years as we tried to conceive. We trusted that God would bless us with a child. When we saw the positive test on December 1, 2013, we were ecstatic! We knew (and know) that God had placed parenthood in our hearts and we were so happy to finally begin!

His timing is not our own, and it is perfect. His thoughts are not our thoughts, and His ways are not our ways (Isaiah 55:8-9).

Trust is built over time in any relationship. God has never failed us and we know without a doubt that He loves us.

We trust God and His plan, but that doesn’t mean that we aren’t struggling with any of this.

On one side, we have seen and heard already how Tori’s life is impacting people and how, potentially, God is changing thousands of lives through her. We praise Him for that and are humbled that He would use our family in that way.

But, we also ask why it has to be her. Why us? Why do we have to lose our daughter for these lives to be impacted?

Why doesn’t He heal her and change the world through her testimony? What an amazing display of His power that would be! We believe that He can – and pray that He will – do that. But we just don’t know what He is planning. Right now the trees are looming overhead and our perspective is limited.

It is a moment by moment struggle for us. We have never loved anyone like we love this tiny, precious human. We cannot imagine our lives without her. Yet, we know that God loves her, and us, and that He has an amazing plan for her. And we are choosing hope over despair, because we know that God is sovereign and we trust His plan.

And so we wait. We pray. We trust. We love her and each other. We cherish each moment because we don’t know how many moments remain. And we are thankful for whatever time we are given with our precious Tori.

God is faithful and trustworthy.


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Pittsburgh, Day Three (and the Journey Home)

Friday was the last day of tests for this trip. And it began in the ER again.




When we had the tube reinserted on Wednesday night, my Dad and I noticed that they didn’t measure it – they just did it. We thought that maybe Hershey just did it differently and didn’t question it.

Thursday afternoon, Tori started to be very angry during feeds and sounded very uncomfortable. She then started vomiting a little bit during the feeds – not milk, but this yellow liquid. She also had not gone #2 since before the MRI. We thought it might just be from the anesthesia, so we let her do a few more feeds to be sure, after I consulted a nurse friend.

By Friday morning, she was still crying as if she were in pain during feeds and she was still vomiting a little. So, we left early for the hospital to try to ensure that she would still make her appointments.

Yeah, that didn’t happen. We missed the first one entirely, and were 45 minutes late for the second. There is no such thing as a quick ER visit.

They took her to have an X-ray of her stomach to see where the tube was, and while we waited for the results they took her vitals. When they went to take her temperature rectally, she got SO mad and ended up solving one of the problems! Haha. We were laughing SO hard because so much came out! I know this is TMI…😉 but with babies, you have to watch things like this.

The X-ray showed that the tube was coiled in her stomach, meaning that it was far too long. Amazing how, in just two weeks, Brennan and I have become so knowledgeable about NG tubes. This explained the yellow liquid somehow, but I can’t remember.

So, lucky Tori got to have another tube replacement! Poor baby. They did a second X-ray to confirm placement and we were free to go. She has been fine ever since.

After over 3 hours in the ER, we ran upstairs to her first opthamology appointment where they tested her Visual Evoked Potentials (VEPs).



She was so tired that I had to work to keep her awake!

Then, her final appointment of the day was another opthamology one. They dilated her eyes and looked at the anatomy.




We will know the results at some point next week.

We then headed back to the hotel where some friends came to see us and brought me Chipotle for dinner! We had a wonderful visit and we spent time in prayer for Tori.



We got up early this morning to catch our train. We are being followed by a huge snow storm so we are very thankful to be in a train, again.















We were amazed to find out yesterday that country star Rodney Atkins had tweeted about Tori! A friend of ours grew up with him and he shared Tori’s story with Rodney. We hope this will help raise awareness of Krabbe and help the fight for newborn screening across the nation.


We will soon be reunited with Brennan and we can’t wait!

Next week, Tori will see a geneticist, a G.I. doctor, possibly Early Intervention, and I think that is it. I also have a podiatrist appointment. It will be another busy week, but we will at least be home.

We will return to Pittsburgh in late May for an evaluation and follow up testing. Brennan will be able to make the trip with us this time, thankfully! Please pray that her brain will be healed by the time we go back – what a testament to God’s power that would be to even more medical professionals!


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Pittsburgh, Day Two

We had originally planned to just stay inside the hotel since they hadn’t scheduled anything for us today. Given the temperature outside, that was desirable. However, they were unable to do some of the evaluations yesterday so we came back today.


The morning started with a meeting with Dr. Escolar, where she went over the MRI findings as well as the genetics behind this disease. She is a wonderful teacher and definitely an expert in this disease.

Their website is here: http://www.chp.edu/CHP/neurodevelopment+in+rare+disorders

Starting with the genetics, Brennan and I basically had the same odds as winning the lottery in giving these specific gene mutations to Tori. Maybe we should buy a ticket (kidding).

Essentially, she is almost certain (before we even do our blood testing) that we both carry a recessive gene mutation that came together when Tori was being formed. Our full siblings are almost guaranteed to have the same mutation. Just because babies don’t show symptoms doesn’t mean they won’t end up with late or adult onset. Of course, there is a 25% chance of our babies being born perfectly healthy and a 25% chance that they will be a carrier of the gene.

She recommended that our family members be tested before having children.


Then she told us what she saw on the MRI and the spinal tap. Tori is beginning stage 3 (of 4) of Early-Infantile Onset Krabbe. Stage 4 will begin in months, not years. She explained what will start to happen, but I can’t remember everything that she said. It was a lot to take in.

Tori is not a stem cell transplant candidate because of how advanced the disease is already. Dr. Escolar said that the process of the transplant (chemo, etc.) would actually accelerate the disease.

In short, only an act of God Himself can save Tori.

From this point on, we will be trying to make her as comfortable as possible while the disease takes its toll.

In the afternoon, she repeated the visual tracking testing and did well. They said she seems to still be able to see things.

Tomorrow she we will have three tests to determine the severity of the damage, and then we head back to Harrisburg on Saturday morning.

Please continue to plead with God for her full restoration! We believe that He can! We will continue to hope until the very end that He will choose to heal her here on earth. And if He doesn’t, we will trust Him in that as well.


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Pittsburgh, Day One

Our day didn’t start off very smoothly – not anyone’s fault, just many different things that went wrong.

Tori didn’t sleep well, so none of us slept well. Not a great way to start a day like this 😄

We didn’t know that we had to tell the front desk that we needed to take the shuttle, so that put us behind. Then, when we got to the hospital, the lady at the front desk was entirely unhelpful and gave us incorrect information that sent us to the wrong part of the hospital. We ended up being 20 minutes late, which stressed me out because I hate being late.

At least the hospital is bright and colorful and fun 😄


It turned out that it was okay that we were late because they were running late, too. However, we were seated right in front of a poster about Krabbe that made me feel even more stressed.


I tried to just ignore it, but that was difficult. It has been so easy to forget that she is sick, that she has a terminal illness…but this poster, and the other Krabbe babies we saw today, made it completely real, and reinforced our need for a miracle from God.

In addition to those stress factors, Tori wasn’t allowed to eat most of the day because of her MRI at 2pm, so I had a cranky baby who didn’t understand why she wasn’t being fed. This wasn’t the doctor’s fault – radiology had a strange policy for babies to not eat for 8 hours before their anesthesia. When Tori had her MRI at Hershey, because she is breastfed, she was able to eat up until 4 hours before the MRI. I should have just fed her anyway.

They started the evaluations and poor Tori was tired, hungry, and didn’t want to be put down (as usual), so it made it difficult for the team to assess her.

At that point, Dr. Escolar came in and we got to meet her. As I watched her interact with Tori and her team, I felt more calm. This woman cares deeply about these Krabbe children and so desperately wants to find a cure.

She decided that it would be a good idea to start Tori on a medicine to relieve the pain that she is in. Most Krabbe babies end up on two medicines (at least), and Tori is already on the first one. She said that we will see a totally different baby emerge and we will be able to really see what she is capable of doing once it takes effect. We will give her the first dose tonight.

Because Tori didn’t want to participate today (haha), we will go back in tomorrow to try again.

The physical therapist and Dr. E looked at Tori’s body and tested range of motion and other things. She then gave me a head-to-toe report of what she noticed. I am so glad that they are going to write it out for us because I can’t remember it all!

We then went down for Tori’s MRI.


We waited in the waiting room and explored the hospital while she was back there. We found a Rita’s stand in the lobby!


They finally let us come back to see her and she was surrounded by nurses talking about how beautiful she is ❤️😄 She was very calm and just laid there for quite a while.





We waited to be discharged and got back to the hotel around 6:30pm.

Then, we put the new medicine in her tube as directed, and it clogged it. We were unable to get it unclogged, and we didn’t have an extra tube with us (rookie mistake), so back to the hospital we went. It made for a late night. But, now we know she can eat well and have no issues with a clogged tube.

It was a long day filled with many different emotions. We will see what they determine over the next couple of days, but we know that a miracle is still needed.






Moment by Moment…

Many have asked how Brennan and I are doing with all of this. I guess you could say that our emotions vary depending on the hour.

Some moments we feel strong and hopeful that God will help our Victoria be victorious. Other moments we start to fear the worst (which is also the medically proven outcome) instead of trusting the Lord. Then we refocus as best as we can.

Today has been a little more emotional for me at times for whatever reason. I look into her beautiful eyes and I just cannot imagine not being able to look into them for the rest of my life. I want to watch her grow and learn, to make friends and learn about Jesus. I want her to experience the simple and extravagant joys of life. I want her to travel the world with us and explore.

Brennan and I were talking about her today through texts and both had the same thoughts today: we know that God has some purpose for all of this, and while we desperately pray that He wants to do a miracle in her life that would impact the world and also save her life, if that isn’t His plan, we pray that somehow she can be the catalyst for a breakthrough in the research for this disease – one that would create a cure and save thousands of babies/children. Obviously, we want to keep her here with us, no question about that 😄 and we are doing everything we can to make that happen.

We know that her life has a purpose, and we know that someday we will understand. But, for now, we continue to trust the Lord, minute by minute, and pray that He will heal and restore her.

On a lighter note, we are almost to Pittsburgh on the train. Tori has slept well most of the trip thus far, and this is a really great way to travel.











Tomorrow she will have an MRI and many other tests. Thursday is a day to explore, and they are giving us passes to two museums. Friday will be more meetings and appointments. We are looking forward to meeting Dr. Escolar and her team and seeing what options there might be to ease her pain and perhaps stop the progression of the disease.

A friend told us that she dreamt about Tori at the doctor last night, and in the dream Tori smiled. Praying that this is the beginning of our miracle and that our baby will smile again.



Headed to Pittsburgh…

On Friday night we were connected to a Facebook group for Krabbe families and I love how they welcomed us: “I’m sorry you have to be here, but this group is great.”

So many of them said that we needed to contact a Dr. Escolar in Pittsburgh immediately. One even messaged me with the contact info and offered to contact her for us. We readily agreed, because we didn’t want to bother her on a weekend.

She called us 15 minutes later at 10pm on a Friday night.

Dr. Escolar listened to my recap of Tori’s medical history leading up to the diagnosis and said that she wanted to see her right away.

Over the weekend, her nurse practitioner sent me forms to fill out and return so that we were ready to go on and wouldn’t have to deal with paperwork.

This morning, they called and asked if we could be there by Wednesday morning to begin the evaluation and testing.

We were prepared to pay for our expenses to get there and stay there, as we will be there for four days, but they have a foundation that is paying for all of our travel and lodging! What a blessing.

So, my parents, Tori, and I leave tomorrow on the train (since Tori doesn’t like the car right now) and will come back on Saturday. They are sending a car to pick us up, and a reader of the blog even arranged for them to stop by her house first to install the car seat they are lending to us!

Another blessing was that we were able to obtain a CD with Tori’s MRI on it this afternoon to take with us.

It will be an interesting week, if nothing else. 😄 We aren’t hopeful that she can be cured because they haven’t had success after children become symptomatic, but it doesn’t hurt to go!

Also, at the request of many, we have set up a P.O. box to receive any mail for Tori that comes in.

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


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