Summer 2023 has been flying by. Adventures, appointments, and shenanigans going strong.
We started the summer off with renting a dumpster. We were long overdue for a big cleanout of the house and storage room. It was A LOT of work, but also really satisfying! We were able to arrange all of LU’s medical supplies in the storage room so they are organized (ish) and accessible. Yay!
After cleaning and organizing, we hopped a plane and flew to the family reunion on SoCal. We spent the first day at the beach and had an absolute blast! The kids love boogie boarding and playing the sand. We even went looking for sea shells and found a few! We got to see relatives we haven’t seen in years, and meet new ones. Unfortunately, we all got pretty sun burned, so that part was less than fun.
We met up with family the next day as well and had a great time visiting more! After that, we took time to go visit Disneyland, which was amazing. We visited Galaxy’s Edge and built droids and light sabers. We visited the Avengers Campus as well. It was so much fun!
Of course, over the summer we still have appointments.
LU had an appointment with the rehabilitation clinic. It did not go well at all. I felt ignored and dismissed, and left the appointment feeling like this doctor came into the room with an opinion and no amount of facts or evidence would change that. The two positives to come from it were:
1. The doc put it an order for a medical stroller for LU, which is spectacular. It will give her the opportunity to participate in things and have somewhere to sit and hang out and rest when needed.
2. We finally got an appointment to be seen by the developmental pediatrician. This appointment will be 4 hours long, and will hopefully give us answers on the what and why of our Lil Unicorn. We’ve waited for over a year on the waiting list, and after the failed appointment with the rehab clinic, our pediatrician got us into the developmental pediatrician.
My dad came to visit us for a week as well! Thankfully, unlike last time, no ER visits were had 🤣
We had a fantastic visit! It was wonderful having the time to spend with him, and including him in our daily shenanigans.
LN and LU had appointments with Ophthalmology. The doc noticed that LN has more pressure in his eyes than normal, but not so much that anything needs to be done about it. So we watch and monitor for changes.
LU has what appears to be very limited peripheral vision. We’ve noticed many things that may be related to vision or may be neurological in nature. The ophthalmologist ordered an MRI to look at her cerebral cortex and visual cortex. We are looking for anything that may give us answers. It will be sedated, and some blood may be drawn while she is under as well.
Summer is coming to an end. Soon, school will begin again. Appointment times will change. More appointments will be added. Hopefully, we will start to see some answers (or at least not get any more curveballs thrown at us!)