1 year + 68

1 year +68

We were in St. Lucia for a week! We flew off the island this past Tuesday and landed back in Colorado on Wednesday. Both girls did so well. We had our arsenal of meds to keep Keira’s GI system in check. The night before we were to fly home, she was vomiting and sick. We had meds along just for this occasion that she was unable to throw up and they along with all the things held her steady. Thank you Jesus! Tate was sick on the way to the airport but other than that, things looked much like the normal baseline. We learned how to navigate bumpy roads and sand with the wheelchair. My SIL, Jen sourced 3 liters/day of IV fluids and we were loved on and supported by family, Tates Tribe Family and new friends. Despite the logistical challenges that come with medical complexity, it was amazing and wonderful and just makes me so thankful for the sweet sweet memories. Thank you to all that helped us!!
Yesterday it was back to ivig and today too, but we didn’t get far. Tates BP was scary high this morning so ivig never got started. Much to Tates dismay, we were sent to the ER by her Dr’s and are awaiting labs, meds and a plan. They feel this is kidney related and are discussing transferring her to main for an acute nephrology workup. Grandma Sandy is at our house until next week and tagged along this morning. She brought a nice diversion for a couple hours. Please pray that blood cultures don’t pop positive and that we’re able to deal with this outpatient.