Pittsburgh, Round Three: Day Two

Today was a very busy day and we are all so tired. 

We started with Tori’s vision and physical therapy evaluations at Dr. Escolar’s office.

   
 
We then ran to the other side of the hospital for her Nerve Conduction Study, which was thankfully MUCH more gentle than the adult version (I have had 4-5 of them so I was nervous for her). 

   
    
    
 
We checked in for her MRI and they gave her a colorful pinwheel that she enjoyed watching.

  

They took her back for anesthesia and the MRI around 1:30pm and they came to get us around 3:40pm. She did well and seems to be herself again!

I haven’t mentioned this before, but we were slightly nervous about her having anesthesia this time. Many Krabbe families have seen further regression/disease progression after anesthesia and, though she can’t regress much more than she did immediately in January (smiling, talking, laughing, moving, etc.), we were nervous that it would have the same effect on her as it has to others. 

Since she does still vocalize, that is what I was most concerned about this time. But she woke up and vocalized! Praise the Lord.

   
    
   
She then had an x-ray to check her hips to make sure they are in place before she starts using her stander.

We will receive all results via a phone call from Dr. Escolar next week. 

While we pray for miraculous improvement in her brain, we are realistic and are prepared for whatever news comes our way.

We are headed home, exhausted, but happy with how things went.

   
 

If you could please pray for me (Lesa), I am feeling a little abnormal and think I may be getting a cold. It is likely a sinus infection from allergies if anything, but since it is important for Tori to remain healthy, I must remain healthy! Please pray for protection for her against any illness.

Thank you all for praying us through this trip! 

Pittsburgh, Round Three: Day One

We traveled back to Pittsburgh last night for our third visit to Dr. Escolar and her clinic.

Such a beautiful sky!   

    

We arrived at our hotel around 9:45pm, and Tori slept the entire way in “her” van! That was such a blessing. 

Tori requires a lot of stuff 😄

    
    
  

Our morning started early and we got to the hospital around 8:30am. Tori was wide-awake and content. 

  
 

Dr. Escolar evaluated Tori and asked us questions about her current state. We were able to ask questions of her, as always, and we received the results of our genetic testing from months ago. 

To summarize, we both carry the same gene mutation (early infantile form) and Tori has the same mutation (sometimes it can be different).

After her appointment we headed to the zoo, as you saw in the last blog post. 

We were unable to stay at the Ronald McDonald House as we had planned because they were fully booked. 

Thankfully, thanks to our Team Tori account, we were able to book a last minute hotel room with a freezer for her breastmilk.  

What a blessing to have those funds and not worry about how to pay for things like this when we come out for her appointments!

  

Our view…

 
Huge thanks to the Howard family for having dinner delivered to us! It was delicious! We so appreciate the amazing support you are whenever we visit for Tori’s appointments ❤️

Tomorrow is the big day – several tests, more evaluation, and the MRI. 

Please pray that Tori will do well and tolerate everything that she will go through tomorrow, and, of course, continue to pray for a miracle.

Tori’s Bucket List: See Giraffes (Pittsburgh Zoo Edition)

Thanks to the Children’s Hospital, Jeanine Pittman,  Molly Howard, and Tracy Gray, we had a wonderful visit to the Pittsburgh Zoo!

  
  

Tracy organized a special experience for Tori where she got to feel many small animals and see them up close!

She touched a rabbit, a chinchilla, an armadillo, a snake, and others not pictured below!

  

    
    
    
    

She wasn’t asleep the whole time 😉

Then the highlight: giraffes.
We ate at a restaurant right by the giraffes and the picture below shows our view – it was awesome!
  

Tori had a great nap during lunch and was alert and attentive for the giraffes, which made us happy ❤️

  
    
    
    
  

We didn’t get to feed the giraffes because they only do that on specific days, so we changed this bucket list item to be “See giraffes” and will add another line about feeding them.

We walked around the zoo some more and she seemed to enjoy the perfect weather and all of the sights and sounds.
    
    
    
  

We saw these two giraffes in the gift shop, as well as a Christmas ornament giraffe, and they just had to join Tori’s collection. 😄

  
    

I have plenty of photos on my actual camera but can’t access those until we get home. 

Thanks to all who made this possible! It was a really fun day! 

#ToriTuesday Update

Tori has been very alert and content this past week! We are so thankful to know that she is comfortable.

Tori was weighed and measured today and she hasn’t gained any weight in two weeks; we will be increasing her calorie intake slightly to see if it makes a difference.

  
We are heading to Pittsburgh this evening for two days of appointments and a visit to the zoo! 

We will meet with Dr. Escolar in the morning and then spend the day at the zoo and maybe some other adventures.

Thursday will be filled with evaluations and tests, including an MRI. 

Our prayer for the past six months has been that this MRI would show improvement, and we continue to pray along those lines.

We will post pictures of the zoo and the giraffes! 😄 So thankful to all who made this possible.

What Really Holds Me Back

(This is quite possibly the most vulnerable post I have ever written…)

On our wedding day I felt as any bride should: beautiful, confident, joyful.

I had worked hard to lose twenty pounds before that day, and it felt so good to be thinner.

And then I got comfortable, as so many married people do…

Over the years I have lost the same amount of weight several times only to gain it back.

I gained over 30 pounds during pregnancy – pounds I hoped would melt away while nursing. Seventeen of those pounds did go away, but I am still carrying fifteen pregnancy pounds in addition to the fifty that I have gained since getting married almost five years ago.

Sixty-five extra pounds.

That is the minimum that I need to lose. According to the “charts” I need to lose 75-85 pounds in order to be a “normal” weight for my height.

How did this even happen?!


Before Tori got sick I was working on losing weight and I felt encouraged about my progress.

But then our world was turned upside-down and I was forced into the role of full-time caregiver and nurse – a role I never imagined myself in, and one that requires all of my time and energy. It often requires more energy than I am able to give.

I want so desperately to lose this weight and feel better about my outward appearance, but I lack the determination and energy required. I don’t get much sleep these days and that makes everything more difficult.

I went shopping recently and couldn’t believe the size that fit me. It was a number I had never wanted to see. That experience was a reminder that I have to figure out a way to take care of myself AND Tori to ensure that I can continue to care for her with all of me.


I find the same lies and excuses swirling around in my head whenever I am tempted with comfort foods:

  • If I don’t eat this now, I may not have the chance to enjoy it again.
  • It’s too hard to find the time to prepare healthy foods.
  • I’ll just start again tomorrow.
  • Everyone thinks I’m fat and that’s all they see.
  • I’ll never be as thin as her, so what does it matter?

So, I give up and eat what sounds good, what will make me feel good in the moment. I have so many things to constantly be aware of in regards to Tori that it feels good to be carefree in just one area of my life.

And then I see photos of myself and I am appalled. Ashamed. I am reminded that I cannot just be carefree about what I eat – my genetics and my history tell me so.

I find myself not wanting to see people I haven’t seen in awhile because I don’t want them to judge my weight. I try to hide it, and I try to avoid those situations to prevent embarrassment.

Why is it that we try to hide the most obvious things about ourselves?

It’s as if we are children in our Sunday best who have been playing in the mud, but we try to hide it from our parents even though it’s obvious that we are dirty.

We try to hide our struggles because fear whispers that if we open up, if we are vulnerable, people will judge, criticize, and laugh at us. People will see how terrible we are and how greatly we have failed.

The reality is that when we are honest, others feel the freedom to share their struggles as well. Vulnerability brings freedom. 

You know what really holds me back? Fear of failure. Instead of remembering that I have successfully done this in the past, I become intimidated by my current situation with Tori and all that it requires of me and I let that affect my attitude.

Instead of trying, I give up before I even start.


I have sacrificed the care of myself because I have convinced myself that I can’t fully care for Tori AND me.

And that is a lie.

Can I spend hours a day working out? No.

Can I prepare elaborate healthy meals for myself and for Brennan on a daily basis? No.

But I can start somewhere.

And that somewhere is writing this extremely vulnerable post, because, as Jon Acuff so wisely said, “fear fears community.” Fear wants you to feel isolated, alone, defeated. Fear hates accountability and solidarity.

But the power of fear is lessened when it is exposed to the world.

I know I am not alone in this. I’m sure there are other women – especially in my shoes as a caregiver – who struggle with this very thing. And I want to figure out a solution because if I don’t take care of myself, how can I fully care for Tori?


What am I going to do about this?

  • To start, I am going to stop focusing on my failures and instead celebrate each success. I’m optimistic in every other area of my life, so why not this? (Examples: I drank all my water today! I ate healthy snacks!)
  • I am going to take it one meal at a time and not be overwhelmed by the length of the journey ahead of me. 
  • I am going to combat those lies above with truth:
    • Ice cream will be there when I reach my short-term goals and want a treat.
    • I do have time to put together simple healthy meals and snacks.
    • I won’t wait until tomorrow to start over – I will start immediately.
    • I will remember that people are just as focused on themselves as I am and they likely aren’t focused on my weight, especially given my circumstances.
    • I will stop comparing myself to other women. Thin doesn’t mean healthy.

For me, it’s not just about the pounds – it is about overall health. I know that several women in my family have developed diabetes and I am terrified of that being my story as well.

I’ve got to start now.

I can’t change Tori’s condition, nor can I change the fact that she doesn’t sleep much (which makes me so tired all the time). But I can do one thing at a time to make progress. I can focus on what I DO accomplish as opposed to what I don’t.

And I can be patient with myself and offer grace when I fall short.


I am going to blog about my progress as forced accountability, because now that you all know what I am trying to do, I feel “required” to report back to you. :)

These before pictures are from July 4, 2015; not much has changed, yet, but that changes now.

July 4, 2015 Before Picture

July 4, 2015 Before Picture

Dreams of Healing, Part Five

People continue to have dreams about Tori being healed and it fills our hearts with cautious hope.

Please continue to share your dreams with us!

I just woke up from a dream that I had gotten to meet her and was holding her and she was cooing and smiling away.

My three year old has been talking non-stop about Tori today. Said he had a dream about her birthday and playing with her and her orange binky.

Last night was the first time I had a dream about Tori. I was going with Lesa and Brennan to one of Tori’s doctor appointments, sitting in the back with her. I was talking to her and she smiled! A huge smile, and then she started to “talk” – it was baby talk and most of it we couldn’t understand but we were all so excited and laughing! She had great head control, her smiles were big and she was happy! I remember thinking a switch flipped and she was getting better!

In this dream I was teaching and Tori was in the class I was teaching. I remember thinking inside my dream that I knew God would heal her.

I had a dream last night, you and Tori were in it! She was laughing and crawling, and she even said NO! With quite some authority! I’m sure there was more, but I cannot remember it. You were both smiling and laughing. It was beautiful.

Tori’s Baby Dedication

We had always intended to do a formal dedication of Tori at our church, but it became quickly forgotten in the midst of all that has happened in the past eight months.

A baby dedication is different from infant baptism: it is a public promise of the parents (and the congregation) to raise the child according to God’s Word, to teach them about God and His love.

Most parents who dedicate their child to the Lord do it assuming that they will be raising their children to adulthood, but ours had a slightly different meaning.

Today, Brennan and I stood before God, family, and friends and committed publicly that Tori is God’s. Tori belongs to Him, and we will be thankful for whatever length of time He chooses to bless us with her earthly presence.

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As our pastor said, Tori will have an impact greater than we can even begin to imagine, and we may not fully see that impact until Heaven. Her story is not tragic because we have the hope and assurance of eternal life, and we know that she is here for a purpose – a godly purpose.

Our pastor did a fantastic job and it was a very moving time. We are so thankful for our friendship with him and his family, as well as the solid teaching and discipleship he brings to our church.

If you would like to watch the video of the dedication, you can see it here.

Many thanks to our cousin, Sarah, for coming to take professional photos of the event for us. It was so important to us to have it captured well. Thank you, also, to our friend, Micah, for coming to video it so that the footage can be included in the documentary he is creating about Tori and about Krabbe.

And thank you to the family and friends who were able to join us today! We know not everyone could make it, but you can see the entire dedication here!