Journeys Heart page

01/04/2026

In honor or my beautiful Journey Joy and my
Little sister her Aunt Zoe. 🩷❤️🧡💛💚💙🩵

03/02/2026

Gosh ok…. So much has happened over the last two years, So here’s a photo dump of the last two years and I’ll try to give the best brief summary my 3 brain cells can muster.

August 2024: Journey became a big sister again to another little sister. Who she absolutely adores. She definitely wanted a brother but I think she quickly forgot and just loves her baby sister so much.

September 2024: Journey started 3rd grade. She also started dance and did a ballet class. We chose to try her in a regular dance studio opposed to one more specialized for kids with special needs line was had previously done before. She did really well and absolutely loved it.

2025
Was a little bit more of a crazier year for us. Journey broke her ankle at school right at the end of the school year in June of 2025. So she spent half the summer in a cast which stunk but as always she made the best of it.
Also that June she had her feeding tube hole closed (which the tube itself had been out for a year just about but unfortunately )the hole never closed so she had to get it surgically closed which she did really well with and it was an in and out the same day procedure which is nice.

Journey had been dealing with some difficult behaviors at home not as much at school but there were some concerns. So after almost a year long wait we got results back from journeys testing that she was diagnosed with level 1 autism. This didn’t really come as a shock as I had been suspecting it for a while. It didn’t change much except I feel we can better help her get the specialized care she needed.

This past year our girl turned 9!!!!!!!!!!!’holy cow time is truly flying by.

After a long meeting and lots of deliberation the school and I decided to hold her back a grade. She was always at a grade level behind but it made sense considering she skipped kindergarten. This was a huge change for her because she also was going to move from a smaller self contained class she had been in for 3 years to a larger gen Ed class at a new school. This brought up a lot of stress and anxiety for her. She had a rough start but is doing much better.

Health wise
Her heart has been stable which is good. She is still doing every 6 month cardiology visits.
Mentally things have been a struggle. Dealing with the medical stuff itself was hard but we got through it. But this chapter has been hard. Journey had become more aware of her condition in the past year or so. It’s come with a lot of stress and anxiety for her. Unfortunately her anxiety often presents physically. She’s been suffering from panic attacks as well. She’s become aware of the fact that she gets short of breath and that it’s not normal and it freaks her out causing her to further panic which worsens it causing a domino effect. We have been working on getting her into therapy.

She also has been really struggling with her self image. She hates her scars and says they are ugly. Despite me telling her how beautiful and amazing she is, that only helps so much. It just breaks my heart I never want her to feel that way.

Other than that she’s is just amazing and beautiful and undoubtedly inspiring every single day.

I will try to update more consistently from now on. We truly appreciate all the love and support through the years ❤️

02/02/2026

In honor of heart month I am reactivating journeys page. Unfortunately Circumstances at my previous job led me to have to deactivate this account for Journeys safety. Hoping to come back and spread awareness and updates for those who have followed our Journey.

03/02/2024

Hey everyone, So Journey was finally able to find an extra curricular activity that she’s able to fully participate in and she enjoys so very much. There wasn’t much options with sports and dance being out of question but Girl Scouts has been amazing for her ❤️

So in her be half she’d like me to ask if anyone would like to buy some Girl Scout cookies from her troop? This is her first time and she’s very excited!!!

That's right! You can order your favorite Girl Scout Cookies from me online, all while helping my troop and I do great things in our community and beyond! Check it out.

17/11/2023

Journey said Thank you all so much for all the birthday wishes❤️❤️😊

16/11/2023

I can’t believe it but you are 7 YEARS OLD. You have defied so many odds and moved so many mountains and here you are. The most smart, amazing, fiery, fierce, sweet resilient little girl I’ve ever met. You Inspire me every single day and I hope you have the most amazing day and many more amazing years ❤️❤️❤️ We love you Journey wishing you the HAPPIEST 7TH BIRTHDAY!🎉🎂🥳🎈🎂🎉

08/09/2023

Soooooo Journey did what Journey does and gave us all a good scare yesterday. BUT we are actually back home because as soon as we got to Pittsburg she was doing good. They felt she didn’t need to stay inpatient there. In the meantime we are waiting for blood culture results and Urine culture results. It looks like she may have a UTI. Which would explain why she’d have back pain and a fever. But the Dr who was on today in Pittsburgh felt that either of those things could be treated here in buffalo. Here whole care team here in buffalo is on high alert and we are watching her very closely but thankfully she turned the corner and it seems to have been just a scare!

06/09/2023

Journeys white blood cell count was pretty high and her breathing isn’t great so her cardiologist wants to send her back to Pittsburgh so in the event she needs to be intubated that she can be with the correct care team. 🙏🏽

06/09/2023

Journey spiked a high fever today he nurse came and saw her and we talked to Pittsburgh. We are heading to buffalo children’s now and if she needs to be admitted they will transfer her back to Pittsburgh. Praying it’s not something serious!!