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

http://www.facebook.com/prayingfortori

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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

http://www.facebook.com/prayingfortori

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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.

http://www.facebook.com/prayingfortori

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The Day Our Lives Changed Forever…

The neurologist called today and said they had the blood test results already, and asked if we could come in at 2pm. We knew then that it was either great or terrible news.

There is no question that Tori has Infantile Krabbe’s (crab-bay) Disease. The average life expectancy is two years. There is no cure.

Today we were told that our baby girl is dying.

There are so many thoughts in my mind right now: wishes that Pennsylvania had tested for this at birth, which would have given her a chance for treatment; hope that God will still indeed heal her, especially since there is essentially no hope medically; numbness at this news that our long-awaited baby girl will not be on this earth much longer without a miracle straight from God Himself; the calling I know God placed on my life to be a stay-at-home mom and pleading with Him to not take her (and the hope of future children) away.

Brennan and I will be undergoing genetic testing next week to determine who is the carrier, or if we both are. This will help us make decisions about future children.

Please continue to pray for us during this time. We know that God is in control, and we will praise Him no matter how difficult it may be to do so.

http://www.facebook.com/prayingfortori

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Coping…

It has been a long two weeks. Two weeks ago this evening we took her to the ER and this nightmare began.

I’ve hesitated to try to put my feelings into words on here because (1) typing them makes it feel so real, and (2) it will probably make me cry. But, I want to be real and not appear to be a faith-filled super mom who isn’t emotionally affected by the deterioration of her baby. I have cried more in the past two weeks than i have in the last twenty years combined.

Denial is the easiest place to be right now. Ignoring the MRI results, ignoring the fact that our baby’s brain is not functioning properly. Ignoring her feeding tube (while still caring for her, of course). It’s just how we’re dealing with all of this for the moment.

The thought that our beautiful, happy, smart, talkative, smiling baby may never be returned to us is beyond devastating. When I see the videos of her from a couple of months ago it brings tears to my eyes because I miss her SO much.

Being a stay-at-home mom to Tori has been the best thing that I have ever done. She has brought me so much joy and I can’t believe how much I love this little human. Obviously, I still love her and that will never change. But I miss her. I miss her personality. I miss watching her learn new things. I miss her smile and her squeal when she was excited.

The thought that she might never be like that again is more than I can bear. I know Brennan feels the same way. The thought that she might never recover is unfathomable.

We are pleading with God to do a miracle – to completely heal her brain and give her the best possible quality of life. If she ends up being a person with special needs, we will rejoice in the fact that we at least get to keep her here on earth with us.

For now, I am living minute by minute and cherishing my time with her. We are celebrating the little things – like her improvement in terms of eating with the feeding tube and other little things. Thinking past today becomes overwhelming because we have no idea what we are facing.

We are certain that God has a purpose for all of this, and we know that He loves her more than we ever could.

We were told about a clinic in Milan, Italy that is the only place in the world currently treating kids with certain types of leukodystrophy using stem-cells. If that ends up being her issue, you better believe that she and I are headed there. They have apparently successfully treated 13 children thus far.

We are also SO encouraged about how we have been connected with several specialists and experts already just through people sharing Tori’s story on Facebook. And Team Tori day was incredible! Seeing all of the photos with the sign was such an encouragement because we were reminded that she is being prayer for by thousands of people.

Yes, we are in more pain than we have ever experienced before, but we also are constantly reminded – and remind ourselves – that our God IS greater than this. He created the whole world and has raised people from the dead. He can easily heal Tori if it is His will.

Oh Lord, we continue to plead with you for a miracle, for a complete restoration of our beloved daughter’s brain and body.

You have set the stage perfectly for something magnificent to happen and for thousands of lives to be impacted through the healing of our Tori.

Her doctors would be astounded to see her suddenly able to eat normally, to talk and smile again, and to develop as a six month old should, given her potential diagnosis and the hopelessness that comes along with it.

Lord, we prayed for her to be given to us for years. You were faithful and gave her to us last July, and we have cherished each day with her and will continue to do so. Lord, please repair her brain and restore her!

Please heal our Tori and use her to change the world before she can even talk!

http://www.facebook.com/prayingfortori

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We are home…

After five days of the most expensive vacation we have ever had (haha), we are home. While it is a relief because we aren’t in a hospital anymore, it is also stressful because now we are on our own with our sick baby.

The home health nurse met with us at home from 9-10:30pm to teach us how to feed her at home. Honestly, I am having a hard time with this whole tube feeding thing. Yes, it allows her to receive nourishment safely, but it is not fun, it is complicated, and I am not sure how I will manage on my own once my parents leave. I know that I am not the first mom who must figure it out, but I feel so intimidated. It also grieves me that we had to suddenly stop breastfeeding and that she may never get to eat real food. What are we going to do on her first birthday?

Prayer requests besides the one for a complete healing:

– The bloodwork will be sent out today (Thursday). Pray that they test it quickly and accurately, and that what they find is curable! Even better, pray that when they check the blood, they find nothing because God has already healed her.

– Please pray for Brennan and me as we adjust to all these new procedures and challenges. Early Intervention, physical therapy, speech therapy, feeding tubes, a diagnosis that may or may not be curable, etc. It is so much to handle all at once.

– I need to be able to pump 24oz of breastmilk a day for Tori right now, and that is not happening. For those who don’t know this, it is far more difficult to pump it out than it is to breastfeed as the baby can get more milk out than a pump. It is our desire to keep her on breastmilk as long as possible because it is better for her stomach, so I need a greater pumping supply. I will be starting to take two supplements and will drink Mother’s Milk Tea in addition to eating milk-increasing foods.

Thank you all so much for your love and support for Tori and for us! ❤️ We couldn’t believe how many people posted pictures today.

We also came home to a clean house thanks to my parents and a friend of Brennan’s who gave us a free housecleaning today.

We have meals in our fridge and freezer with much of this month covered.

We have been given funds that will be SO needed as the bills keep coming in.

We have received flowers to brighten our home as well as so many cards with loving messages inside.

All of these things are somewhat lessening the stress of our new normal.

We are still grieving for our daughter, and still pleading with God for a complete restoration. No parent wants to watch their child suffer, and if she has what they suspect, great suffering – and a short lifespan – may occur.

But, in all this, we are choosing each day to trust God completely. We may have our moments, like Tuesday night as we wept, where we ask questions and grieve; however, throughout our lives we have seen God at work in our own lives and the lives of so many others in such mighty ways, and we KNOW that He is in control. I constantly have to remind myself of that right now, and I am so thankful for the promises of His Word. He has a plan that is great and He has chosen us to be part of that story.

We are so thankful to be Tori’s parents, even if things aren’t going like we had hoped and dreamed. She is a gift, and we pray that God will heal her and bring back her smile, vision, laughter, personality, and health.

http://www.facebook.com/prayingfortori

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Opthamologist and Swallow Study…

Tori had her eyes dilated this morning for her opthamology 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

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Team Tori Day

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

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Not Much to Update Lately…

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…

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The Neurologist Appointment

We met with the neurologist this morning to receive further insight into the MRI results, and it looks like we will still have to wait for a certain diagnosis.

However, the news we did receive is devastating.

We saw the MRI images and the inside of Tori’s brain has shrunk, and there is fluid in the middle. The doctor said that it appears that she has some form of leukodystrophy – which is very serious and not always treatable. I am crying as I even type those words.

We will have blood work on Tuesday to try to narrow down what she is facing, but it doesn’t look good. She will also be seeing a pediatric ophthalmologist.

We need a complete miracle. We know God is bigger than this! But the thought that we might losing our baby girl is more than we can bear. We are trying to stay strong for her sake, but it is extremely difficult.

It can take weeks to get the blood work results back. This is going to be agonizing.

To make matters worse, if this is indeed a genetic thing, we may not be advised to have more children.

On the way home, a song came on that had the line “earth has no sorrow that heaven can’t cure.” We are pleading with God to fix it here and not take her away from us, though that would be the ultimate cure.

Please pray for our precious Tori. And please pray for us as we deal with this potentially horrible news.

http://www.facebook.com/prayingfortori

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