This will not be my most detailed post as I am exhausted!
Friday we saw GI. I was very happy with the appointment. For the most part we kept things the same, but we tweaked a few things to make my life easier! One we have stopped measuring Alex's urine output which means he can pee in the potty! We are only replacing fluids based on GI output. We are also going to space labs to every other week. The last decision was to increase one of his motility meds again. The only "bad" news was that both Alex's liver numbers and pancreas numbers increased significantly when he was sick last week. However, we expect those to go back down.
Saturday was a fun day! We headed to the Kemah boardwalk and enjoyed a morning of rides, sunshine and laughter. After a lunch at a themed restaurant we headed back to the hotel for some R and R. Sunday we headed to Missy's house to throw in a load of laundry and let the kids have some playtime.
Last night we had Alex's sleep study. While for most a sleep study is pretty easy for Alex it was nothing short of traumatic. Alex has pretty severe sensory issues. Especially around his face. Gluing 20 leads to his face and head and sticking two probes up his nose equals disaster. He was crying to the point of shaking, kicking, hitting, just completely panicked! Luckily we got everything on and the sleep study finished. They forgot to bring me any pillows or blankets so I never slept all night. (Thus my exhaustion today) We should have results in about a week.
Today was a marathon day. It started with an ultrasound of Buggy's kidneys. They look great! Then it was off to preop with Mimi for her muscle biopsy. Buggy was a great helper holding Mimi's hand and comforting her. After a quick trip to visit our friends upstairs on the 9th floor we headed off to the opthamologist. Buggy did great. His vision was fine and we quickly headed back to check on MImi. After learning she had just been taken back, we headed back up to the ninth floor to kill some time. We finally got Mimi and headed back to the hotel at 7 tonight!!! Mimi is doing great and after begging to sleep all day, Buggy was out within minutes.
Tomorrow is another big day and one we could use lots of prayers for. We start with a test bright and early that will be somewhere between uncomfortable and downright painful for Buggy. He is having a test to check the syrinx (fluid) in his spinal cord. They will shock his limbs and see how his brain responds. Then we have a hearing test. After a quick clinic vist with Dr. K, we check in for surgery at 12. Buggy is scheduled to have his tube changed tomorrow afternoon. We will be admitted afterwards for observation.
I will update tomorrow night. Thanks for checking on us!