#ToriTuesday Update

I am going to try to post an update on Tori each Tuesday from now on. #ToriTuesday ๐Ÿ˜„

Overall, Tori is doing really well. 

We decided to try using doTERRA essential oils in our home and on Tori to see if they would help her (and us) at all. It is so hard to know if they are making her feel better, but I am hoping it will reduce any discomfort she may be experiencing. We diffuse different oils throughout the day and also use a couple of them on her feet (diluted, of course).


We put her on a feeding schedule last week (set times instead of going by when she wakes up), partly so that we can reduce the frequency of the feedings by increasing the quantity. 

We have slowly been increasing her feeds to 125mL (4oz) and she has tolerated it so well! This means we can drop down to five feeds a day, four hours apart.

Mother’s Day was relaxing and enjoyable. We went to church and then spent the rest of the day at home.

Here are some photos from the weekend:


We bought a Fisher Price Rock ‘n’ Play to see if Tori would sleep well in it since it is a set-up much like the bathtub that she loves. She will sleep in it and hang out in it, but she isn’t sleeping in it very long. She somehow knows Mama isn’t right there ๐Ÿ˜‰โค๏ธ

 Tori had vision therapy today and we found out that she enjoys shiny, reflective things. The therapist brought a silver platter from the Dollar Tree and put some green leaf-shaped lights on it. Tori loves it! When we took it down to try something new, she got fussy; we put it back up and she stopped.   


Tori is very good at communicating to us when she likes something. It started with the giraffe that lights up – when that light goes out (after 5 minutes), she starts whimpering. I turn it back on and she stops. Just like today with those green lights – she knows what she likes! 

Brennan’s sister (Kelly) works with someone who offered to sew buttonholes in Tori’s onesies so that we could use them on her, and she did a great job! My mom and grandma had the same idea in April but we ran out of time to do it during that trip. Now her feeding tube can be easily accessed!  

Tomorrow is a big day: a phlebotomist from the genetics lab is coming to our house to do the blood draw for Tori’s genetic testing; we have to take her to Hershey Medical Center for her follow-up appointment with pediatric surgery and to learn how to change her g-tube (which will happen every 3-4 months); she will then have physical therapy in the afternoon.

She may go “swimming” for the first time on Monday, so that will be fun!

We are so thankful that she is doing so well. God is good, all the time.

2 thoughts on “#ToriTuesday Update

  1. Have you looked into a MamaRoo? I know they are pricey, but I wonder if the different motion it has would be soothing for her to sleep. Just a thought….you may have already decided against one, but I just thought I’d pass it on.


    1. We have one that we borrowed from friends. We used it when she first got sick but haven’t tried it lately because she sleeps so well in our bed since she got sick.


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