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!

6 thoughts on “Pittsburgh, Round Five: Day Two

  1. You both do a wonderful job as you care for Tori, and she’s so blessed to have you as parents. Trust me, whether we have a child with Krabbe or not, as parents we always question whether we are doing it all… And doing it right! You are!! You’re amazing and God’s love and grace will continue to guide and direct you along this path. Thank you for sharing your beautiful Tori with us… Thank you for sharing your blessings of daily life with us… Thank you for helping us all to realize that we are here to serve one another. Hugs to your family, Lesa.

    Liked by 1 person

  2. So thankful for a good report. You and Brennan are fantastic parents and are taking such good care of that little sweetie 🙂 Prayers for the rest of your visit, and safe trip home.

    Liked by 1 person

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