Time for an update!
She had her one-year check-up on Friday and got shots as well. She did really well and her pediatrician is pleased with her health.
We picked up her handicap placard on Friday so that when we take her places we will have more space to get her stroller out, put it together, etc. and to be closer to the door, especially for her appointments at Hershey Med. It takes 5-10 minutes sometimes to get everything together and her in it! This will be such a blessing!
Tori was a great houseparent this weekend at MHS and kept the boys in line 😉 Haha. Actually, it was a wonderful group of boys who all took such an interest in Tori and were so sweet with her. We tried to take her swimming but the water was a little too cold for her liking:
Today the nutritionist visited: Tori is 15lbs 2oz and 25.75 inches long! She is growing at a good rate! ❤️
A friend of ours came over last night to start work on a documentary he wants to do about Tori and Krabbe, and we are so excited! This will be a great way to tell her story and continue to make people aware of the need for Newborn Screening in every state.
Overall she is doing really well and we are so thankful.
She has decided lately to wake up between 4-5am with a dirty diaper so that I have to get up to change her, and then she stays awake for over an hour 😉❤️ Thankfully I have been able to go back to sleep for a little bit when she does, for the most part.
We are doing two Bucket List adventures on Friday! We will do posts for each activity as usual.
If you aren’t following us on Facebook you might be interested to know that we changed the name of her page – from Team Tori to Tori’s Triumph (Team Tori).
To triumph is to be victorious, which is also what Victoria means.
One of our cousins told us that whenever she thinks about Tori the word triumph comes to mind, and we loved the alliteration! So, we changed the name to better reflect our vision – that Victoria will be victorious over Krabbe ❤️
Thank you all for continuing to follow our family’s journey – it means more than we can express 😄❤️
Even So, Joy 
My youngest daughter did not sleep for longer than 4 hours at a time. When she woke up at about 3 or 4 am, I called it our teatime. Then when she was a teen, we continued our teatime for before bed to relax and get calmed down to sleep. All these years later, I have great memories of teatime! Tori looks wonderful in these pictures! So glad she is growing nicely for you!
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so happy to hear she is growing! you two are taking such beautiful care of your precious girl. she’s one loved sweet pea!
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