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 ❤️
