Category: Tori

Moment by Moment…

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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.

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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.

http://www.facebook.com/prayingforTori

Headed to Pittsburgh…

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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

http://www.facebook.com/prayingfortori

Peace which exceeds anything we can understand…

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On Friday, we grieved as we adjusted to the news of our Tori’s diagnosis. We prayed, pleaded, and cried out to the Lord to spare our beloved daughter.

On Saturday, we prayed, visited with friends and family who came by, and we prayed some more. Yet again, every song that came on the radio spoke to our hearts and brought comfort.

The future is still so unclear, and we have no idea what God’s plan is.

However, both Brennan and I are filled with a supernatural peace right now about all of this. We truly can’t explain it. We have been receiving messages about how this is impacting the lives of people we’ve never even met, which has reminded us that God is already using her little life for big things. We are seeing things happen that can’t be coincidence.

We are filled with hope because we know that He is going to heal her – whether on earth with us or in Heaven with Him. Is this easy? Not at all. We still have a long road ahead of us. But, He has reminded us that He loves us, He loves her, He has a plan, and we shouldn’t worry.

“Always be full of joy in the Lord. I say it again – rejoice! Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon. Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” — Philippians 4:4-7

http://www.facebook.com/prayingfortori

Praying for Healing…

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If I am honest, I will admit that I am very skeptical of God giving the gift of healing to people in the world today. I absolutely believe that He, Himself, can heal and often does. But, because I have seen so many phony healers in my lifetime, I am admittedly skeptical about a person having that gift.

However, we are now in a situation where only God can save our little girl’s life. So, it has made us consider things that we previously would have pushed aside.

Several people have mentioned Bethel Church in Redding, CA to me as a place that is known for successful healings and workings of the Holy Spirit. The funny thing about that is that my hometown is a little town called Red Bluff, only 30 minutes south of where Bethel is located.

Brennan and I have been praying and pleading with God to heal Tori because it would be such an incredible testimony of His power to tens of thousands of people around the world, especially the doctors who have been working with us who are experts in these fields. Can you imagine what an impact it would have for them to see a new MRI of her brain and have it be completely restored again? And to see her developing and growing normally again?

Because of the generosity of hundreds, we have the financial ability to hop on a plane to go to Bethel in person and to see my family at the same time. Please pray with us about this. We are so desperate to save our little girl’s life, but even more so, we want God to use her to change the world. For the first time in two weeks I feel overwhelmed with hope, and that is far better than dwelling on the negative.

http://www.facebook.com/prayingfortori

Ophthalmologist and Swallow Study…

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Tori had her eyes dilated this morning for her ophthalmology appointment this morning. She did not enjoy that. 😄

The anatomy of her eyes looks great – no indicators of any neurological diseases…yet. However, the doctor said that based on the MRI she wouldn’t be surprised if her vision has deteriorated.

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The doctor said that if she ends up having Krabbe’s Disease, she will likely go blind. So that is another thing to pray against.

She then had a swallow study at 11:30am, and she didn’t like them putting her in the high chair to try to feed her there. I told them it wouldn’t work 😉

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We waited for a few hours for the results…and they aren’t what we wanted to hear.

Tori is aspirating when she swallows, meaning that it is going into her lungs. She also has no gag reflex. This means that she will have to be fed by an NG tube for now and possibly have to have a tube inserted into her stomach eventually. They did not seem optimistic that this would ever be healed because these muscles are controlled by her cranial nerves, and those are obviously not working.

To say today has been tough is an understatement. I will never get to breastfeed her again. She will likely never eat through her mouth. It seems like each day we find out that something is wrong with our previously healthy baby girl, and we are devastated.

Please continue to pray for a miracle.

http://www.facebook.com/prayingfortori

Team Tori Day

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Some amazing friends of ours decided to get together and plan #TeamTori day to show support and raise awareness for prayer for her. We are so honored!

What they are asking people to do is to wear blue (Brennan is an alumnus of Penn State) or pink (since Tori is a girl) this Wednesday, and to print out this beautiful doodle that my friend Libby drew. Then, take a selfie holding the doodle and post it with the hashtag #TeamTori so that we can see all of the pictures!

https://www.dropbox.com/s/nf0xlgvg4kginrk/Team%20Tori%20sign%20-%20pdf.pdf?dl=0

Also, as requested, here are the links to the sites people have set up for Tori to raise support:

GoFundMe: http://www.gofundme.com/luphsw?fb_action_ids=10205843215261819&fb_action_types=og.shares
T-Shirts: http://www.tshirtsfortori.org/

Meals: http://www.takethemameal.com/meals.php?t=QCLW4205

We are amazed by how many people love our Tori and are praying for her. Please continue to pray for a complete miracle!

http://www.facebook.com/prayingfortori

Not Much to Update Lately…

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We haven’t posted since Friday because there hasn’t been a whole lot to say. We’ve been in the hospital with her since Friday evening and will likely be here through tomorrow. I’ve posted small updates on our Facebook page. Tori has been eating better and is much more hydrated. She has slept most of the time we have been in the hospital, so we are praying that the sleep is helping her to heal.

We are so thankful for the support that we have received – all the notes, visits, texts, Starbucks cards, and we are most humbled by the GoFundMe page that was set up for us. We have no idea what we are facing in terms of medical bills on this completely undesirable path, and we know that people want to help us. We are so unbelievably overwhelmed by the love that is being shown to our precious Tori. We have been so well cared for by the nurses here, too.

My dad arrived last night from California, my mom has been here for a week now, and my Uncle Patrick has been here since Saturday morning. Brennan’s family has come to visit as much as they can. These distractions are wonderful.

Right now, we are coping by living a minute at a time. I can’t handle thinking about the possibilities of what might be wrong with our beautiful baby girl. So, I focus on the good things – that she is eating better, that she doesn’t need the IV anymore, that she is sleeping well. If I think about anything else, I break down.

Thank you for your prayers. We believe that God can choose to heal her completely and we are pleading with Him to do so. The knowledge that there are tens of thousands of people all over the world praying for her gives us hope and encouragement.

We will update as we have updates…