Tomorrow, Princess, Little Man and myself along with MeMe and Pops (my parents) leave for Stanford. We'll be leaving tomorrow evening after MeMe gets off work. They'll be picking us up from our house as we are on the way. Princess has GI clinic in the morning and cardiac clinic in the afternoon at Lucile Packard Children's Hospital at Stanford. She earned her way there via Dr. K, the cardiologist. He was consulting with Dr. R about her cardiomyopathy back at the end of June when we were admitted to the hospital for testing. Dr. R is the leading pediatric cardiologist specializing in cardiomyopathy. He literally wrote the book on the causes of cardiomyopathy in children. Since we had the appointment there, and Princess developed the reflux and has had the milk protein allergy for the past three months, we were able to get into the GI clinic there as well, since the GI clinic here in our area didn't have an appointment until September. (We've had the referral with the local GI clinic since we were discharged mid-June.)
So what am I doing today? Laundry, so we all have clothes for the weekend. I also have to pull out the Pack 'n' Play and make sure I remember how to put it together. (It's been about 3 years since I last used it!) It probably also needs a good cleaning with some sanitizing wipes. I also had to go and get gas cards from our local agency designed to help families with special needs children. The agency does gas cards for families because our county is small and rural. The neighboring county has a vast majority of specialists and the children's hospitals with NICU and PICU services. We were offered gas cards back when Princess was in the NICU. I opted not to use all 8 of them during her 11 week stay because I figured we would be seeing specialists out of the area. So this morning, I met with our contact there at the agency and we got two gas cards, a bag of snacks (more for mom than the kids), diapers for Princess, and a binder. The binder is for keeping track of everything. I already have one and will be posting about at a future date. The other thing I am doing today is updating Princess's binder. This happens about every week or so, sometimes every other. It just depends on when we are seeing a specialist.
We'll be spending Thursday night in a hotel about 15 minutes from the hospital. Apparently, it's the weekend before all the medical students start so every place nearby is booked.Thankfully, the hotel has a refrigerator and a microwave in the room so I can keep Princess's formula taken care of. I never realized how good I have it at my mom's house. My packing list is about the same as it is to go spend the weekend there, except we have to include the Pack 'n' Play with sheets for it, something to warm the bottles in, and a stroller all for Princess. For Little Man, we have to include snacks and a bag to keep him entertained in the car and possibly while we are at clinic appointments. We'll be leaving Friday after our last clinic appointment and then we'll be spending the remainder of the weekend at my mom's house.
Ok, off to go change the laundry, give Princess her medication, and wash bottles!