All the Small Things

Soooooo today Riverlyn is off sternal precautions 🙌🏼 It’s a huge deal because it means she is six weeks post op. Overall she’s been doing amazing. Two weeks ago when we stepped down on one of her meds things got a little wonky but they balanced out.

Next week we see Rivy’s pediatrician and cardiologist for official check ups! In the meantime she’s been doing well in her Early Intervention therapies. 💪🏼 She “can” take a few steps at a time but is still cautious to really venture into walking. 🤌🏼 OT is going well and she’s making sensory progress while continuing to develop fine motor skills and utensil use. 🤞🏼Feeding remains an area of emphasis as she’s still almost completely g-tube dependent. Although, she is really starting to explore and show more openness.

Nathan is adjusting to being 3, having a toddling little sister, and the ins and outs of all the moving pieces and persons in the household. He’s got a big personality - imagine that 😉

Matthew is back in the swing of work and just returned from Dallas. He feels he’s beginning to gain some momentum on assignments.

I’m in a tricky spot physically as my body got triggered and I’ve been dealing with an inability to detox which has resulted in a progressive head to toe rash for just over a week. After being seen 2x already, I have a few appointments lined up early this week to help find resolution… I remember a conversation in this last admission at LCH where one of the individuals supporting me was reminiscing about the early days of high alert, breastfeeding, etc. Our relationship is such that she felt comfortable telling me that at the time she thought I was going to crash any moment. While, by grace, that did not happen, much of the past year and a half is landing for me physically and emotionally. Thus, I will pursue what I need to to continue to take care. Prayers appreciated as my physicality is complex in its own right.

Now, back to our warrior! She’s incredibly smart and loves music and books. She signs, knows her animals and their sounds, colors, shapes, textures, and has a wild vocabulary.

As we continue to see stability we will be able to start doing more normal things - like going to the park or a restaurant. It’s the little things…