Elsie is doing great 💕 Her gross motor skills have thankfully returned to where they were pre surgery and she is walking more steadily and standing up from a squat independently. She also started to climb up onto the couch by herself, which she is very excited about. She is also having a language explosion and says new words and phrases every day. It’s so fun to talk to her and learn more about what’s going on in her head… she is OBSESSED with helping Lars do yard work and takes her job of watering the plants very seriously and accompanies him on trips to Home Depot. She continues to sleep really well and eats everything in sight. Her new foods this week included lettuce wraps and pulled pork… it’s hard to believe it’s only been a year since we started weaning her from tube feeds!
Elsie had an MRI and appointment with neuro surgery last Wednesday. Her shunt and ventricles look stable, which is good news. Since that appointment, though, a spot on Elsie’s incision has started to look a little concerning. Our big goal right now is to keep it from getting infected which is even more important for her since she still has the distractors in and also has a shunt. We also don’t want her incision to open back up since the skin is already so thin. She is getting put back on an oral antibiotic and has an appointment first thing Monday morning with neurology so that they can see the spot in person and come up with a wound care plan moving forward. We also found out that the surgery to stitch down the tissue on her right eye and to remove the distractors and other hardware is scheduled for July 19th. We will hopefully only spend one night in the hospital after surgery.
Elsie had an appointment with ophthalmology who determined that her vision and eyes appear stable. There has been talk about a second strabismus surgery, but her surgeon doesn’t think we need to schedule that yet and feels comfortable monitoring her eye muscles and vision for the foreseeable future. Finally, we have an appointment scheduled in two with one of Elsie’s long term PTs so they can check in on her progress since she was temporarily discharged about 6 months ago.
We are eagerly anticipating the arrival of her little sister early Tuesday morning! Elsie is so excited and talks about the baby multiple times a day. One of her favorite books is a board book called “Baby is Coming” and she talks us through each page on her own by explaining how the mama and dada get in the car to go get the baby out and makes grunting noises on the page about labor. She says “yay mama!” on the page when the baby is born and likes to “cheers” the baby with her water bottle on the page about breastfeeding 😂 We can’t wait for her to be a big sister.
Elsie’s Aunt Baba set up a Meal Train for our family as we prepare to welcome a new baby, which I’ve linked below. As always, thank you so much for continuing to support Elsie and our family. We are so grateful to have all of you on our team ❤️
