Pittsburgh, Round Five: Day Two

Today Tori saw Dr. Escolar and her team and had her MRI.

Dr. Escolar is pleased with how Tori is doing and said our next appointment will be in six months instead of the every three months we did this first year. That was encouraging to us because that means she expects Tori to still be with us by then. ❤️

She did say that it seems like Tori is in stage four now, but she would know more after studying the MRI. Many Krabbe kids have been in stage four for years, so it doesn’t necessarily mean a quick death.

They are overall pleased with her muscle tone and flexibility. She does have some scoliosis and we will be repositioning her more often to try to help with that.

Tori really showed them how much she drools this morning, which was great because they could see what we deal with each day. We will be adding back into her routine a low dose of a med to help her not drool as much.

We will also be adding a nebulizer treatment to our respiratory therapy routine for her to help her be more comfortable. Other than that, no major changes to her care.

Dr. Escolar is pleased with how well Tori is doing on breastmilk – we are SO thankful to all those friends who have so generously been feeding Tori! It has helped her be healthy, helped her digestive system work well, and Brennan and I believe it has attributed to her overall wellbeing. 

They said that we are doing a great job with her, and that was much-needed encouragement. There are so many things we are supposed to do for her each day and sometimes we forget things and feel like we have failed in a way. Hearing Dr. Escolar say that she is pleased with our care of Tori meant so much.

After that, we headed straight to radiology and they took Tori back for her MRI.

  

Can you tell how tired we are? 😉

  
  

Brennan napped (or tried to) while we waited 😄

   

 
It was about 3.5 hrs before they called us back to see her. She did well and is very alert and talkative.

 


One year ago post-MRI:

    
  

Back to today:  
    
  

We were so happy to see Nurse Ron again – he cared for Tori six months ago at her last MRI and he remembered us! He calls Tori his little buddy ❤️

 

Her potassium is low so we will be giving her a supplement to help her maintain a good level. 

We are back in our apartment resting and hoping that Tori sleeps tonight 😉❤️

Thank you all for your continued prayers!

One Year Ago: The First MRI

Tori’s first MRI was one year ago today.

We blogged about it here and here.

  
 

  
We didn’t see the images of the MRI (or learn in detail about what they saw) until February 6th, but I want to include them in this post.

We have never shared these publicly.

Here are two screenshots of Tori’s brain on February 4, 2015.

   

We knew then that something was seriously wrong, even from our medically-untrained perspective.

Tori will have another MRI later this month and I will be very interested to compare the images to see the disease progression.

Krabbe is a terrible, horrible disease and every child should have the opportunity to be screened for it (and other leukodystrophies) at birth. 💙

Tori’s MRI Results

I spoke with Dr. Escolar this morning and received the results of Tori’s August MRI.

Dr. Escolar said that the volume of her brain has shrunk further and there is more atrophy of her cortex.

There is dried blood in the membrane around the brain (subdural hydroma) that should reabsorb on its own.

Her spinal nerves have not changed though they are somewhat swollen – which is normal for Krabbe babies.

No change in the brain stem or the optic nerve.

She has mild hip dysplasia and is at risk for subluxation. This will be helped by her stander.

Her bone density is slightly lower. This will also be helped by her stander and by giving her vitamin D and calcium supplements.

Overall her peripheral nerves are functioning at about 50%, which correlates with the spinal nerve findings.

Bottom line: the disease in the brain is more acute than her peripheral nerves.

So, overall it is a mix of good and not as good news. The good news is that she is still doing relatively well and the brain stem is normal (the stem controls so much).

The not so good news is that she still has a severe form of Krabbe. But, despite that fact, she is still doing so well!

While we didn’t get the miracle we prayed for, we still praise the Lord that He is protecting her from added pain and that she is content.

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! 

Holding on to Hope…

   
   
Tori will have another MRI in twenty days, a follow-up to the two done in February…

…the two that confirmed that her brain was damaged beyond repair by a then undiagnosed (but suspected) disease.

I remember that day so clearly – February 6, 2015. 10:45am.

My mom and I took Tori to her neurologist to review the MRI images and discuss the results. 

Brennan didn’t come because we didn’t realize just how significant that day would be in our lives – we thought it was going to be routine. Fixable.

Even to my untrained eyes, it was evident that something was severely wrong based on those images.

Brennan has still never seen the MRIs (not intentionally – just haven’t had a chance to have someone show them to us again). He says he doesn’t think he wants to see them.

Tori had another MRI done two weeks later in Pittsburgh by Dr. Escolar to ensure that her specific protocol was followed so that the disease could be fully seen, and we haven’t had a chance to see those images either – we were far too grieved during that first visit to even think about asking.

It has now been six months since the first MRI and next Friday will be six months post-diagnosis. 

When we travel to Pittsburgh at the end of the month, Dr. Escolar will perform another MRI to see what progression the disease has made.

This time we will ask to see them.

Shortly after Tori was diagnosed I had a thought that has been my prayer until now: that the next MRI would show unexplainable improvement. That Dr. E would be astonished, unsure of what she saw. 

That they would want to make sure it was Tori’s brain they had scanned.

We cling to hope but remain firmly rooted in reality, knowing that this could be God’s plan for her.

BUT…what if His plan is for her to be healed? For His power to be shown through her? 

What if He has world-changing plans for our little girl?

Please pray with us for unexplainable improvement twenty days from now (August 27). Pray for a miracle. 

We will hope until the end that God will heal her – we serve a God who works outside of time, so He is never late.

August 27th, 1:45pm. Please join us in prayer before and during the MRI. 

God can do this!