Thoughts that cross my mind almost daily…and prayers that I pray moment by moment. Thank you, Jesus, for the beautiful gift you have given us in Victoria. Lord, I want … Continue reading My Heart’s Desire for Tori
Category: Tori
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. … Continue reading The Hummingbird Program and the G-Tube
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 … Continue reading Trusting God
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 … Continue reading Pittsburgh, Day Three (and the Journey Home)
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 … Continue reading Pittsburgh, Day Two
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
Peace which exceeds anything we can understand…
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
Praying for Healing…
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.
Even So, Joy 