#ToriTuesday Update

It has been an exciting day for Tori! Haha. She had her opthalmology follow-up this morning in Hershey and then the E.I. nutritionist came to weigh and measure her.

First, opthalmology:

Waiting for her eyes to fully dilate…


Once her eyes were dilated the doctor was able to evaluate the anatomy of her eye, which all looks great! Her eyes are a little dry so she gave us some OTC suggestions to try. 


Tori did a great job in the car both to and from Hershey! So thankful. ❤️

We came home, ate our lunch, and then waited to be weighed and measured. This was the first check-up since we increased the volume of her feeds.

At 9.5 months, Tori is now 13lbs 13oz and 25 inches long! She is gaining weight at a great rate!

At this time next week we will be on our way to Pittsburgh for a quick evaluation with Dr. Escolar. We haven’t seen any progression of the disease (that we know of), so we are feeling hopeful that God is working.

To recap since our last post…

Tori’s blood draw (genetic testing) and g-tube replacement both went really well!

We made progress during physical therapy last week with the stroller, and we were supposed to try the pool yesterday but thunderstorms cancelled those plans.

Here are some pictures from the last week!






Our friend Shannon took some photos for us and we will be sharing more soon.





10 thoughts on “#ToriTuesday Update

  1. I never get tired of your pictures and updates. Thank you for the work you put into keeping us all up to day on your sweet bundle.


  2. I have never met you but have been following your story about Tori via a friend. I am lifting you all up in prayer and have witnessed what God can do. May God continue to keep his loving arms around you all.


  3. Tori’s little head bands are so cute ! She is a beautiful baby and you take such good care of her. God Bless you !


  4. Tori is such a precious little girl and seems to be handling things well.When I look at her pictures I want so bad to give a hug.Someday I may get to do that the next time I come visit Ashleigh and Matt if you would allow it.


  5. I do not know you personally, but have been following your story. Tori I s the most beautiful baby, with the most beautiful eyes I have ever seen. I pray for a miracle for this little angel. Thank you for sharing her with all of us.


  6. I learned about you through a friend and have been following your beautiful story and adorable little girl. I keep your family in my thoughts and prayers and knowing that God is in charge and all is in divine order.


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