Friday, January 13, 2012

Clinic appt and trip to Monterey

It's been another long day today. Reagan decided to wake up sometime between 3-4am and then talk our ears off. We tried to sleep in the bed beside her, but she was wide awake and babbling away! Finally around 6:30am we got up and started getting ready. We had an early 8:30am echo/EKG scheduled over at the hospital before our clinic appt with Dr. Enns. We also still needed to give them a urine specimen, so I put a bag on Reagan and figured we'd catch a big one since her diaper was still dry. When we laid her down for the echo, I checked her diaper. We had pee. Just a little though. I went ahead and transferred it to the cup we had. Then they performed the echo and EKG. Reagan was a squirmy worm and we had to hold her down the entire time to keep her semi-still! Before we left I checked and she had a huge wet diaper!!! (I should have left the bag on) I went ahead and put another bag on her thinking we might get a better sample by the time her appt was over. As we headed over to the appt, Reagan was beginning to get tired (yeah probably because she'd been up since before 4am)! Our appt with Dr. Enns didn't provide the information we had hoped for. They still didn't have the results of the second brain scan, but promised they would contact us as soon as they heard something. Dr. Enns did notice that Reagan had a slightly elevated CK level. This is something that is typically elevated when there is damage to muscle. Dr. Enns says he sees it sometimes in kids with mito and also sees in kids without mito. Apparently her levels of this were fine the last time we were here, so he just wants to keep an eye on it and check it again once we're back home. Also, he noticed that her white blood cell count was low. Specifically, she was neutropenic. Apparently the last time we were here her levels were even lower than they were this time, but this time they were still below normal. What's interesting about this is that my sister was diagnosed as a child having a blood disorder called chronic benign idiopathic neutropenia. They never found a genetic link to her having it and she managed to do just fine with it, although she had to take neupogen (G-CSF) injections for years. No clue if this is just coincidence or not, I remember noticing years ago in Reagan's blood work a lower than normal neutrophil level, but when I brought it up to doctors they just blew it off. We also discussed keeping Reagan on the EPI-743. Since we "think" we've seen some slight improvement and we haven't necessarily seen any cons, we're going to keep her on it. Before we left the appt, I checked her bag to see if she had gone again. No pee, but there was a little blood! I was shocked! Never seen that before. As it turns out, that stupid bag I had put on her must have made a tiny little cut in that sensitive area...poor girl!! I felt terrible, but other than a slight little frowny face during the appt, she seemed fine. We finished up there around noon and decided to drive down to Monterey. Mike and I went there during our honeymoon, so it was neat to go back again with Reagan. We walked along Cannery Row and had lunch at a restaurant right off the water. We had a great view and watched seals and waves come in as we ate. Reagan was a princess the whole time. Then we headed to 17 mile drive. We drove along Pebble Beach and then got out and walked a trail along Spanish Bay watching the huge waves and crazy surfers venturing out into it! There were seals everywhere. As the waves welled up, you could see the seals riding along in the waves! It was pretty neat. Around the time we finished up there, I checked my email and had already gotten an email from the study coordinator. They had good news about the results of the brain scan. They found a 30-50% increase in her cerebellum (activity) compared to her initial scan. So that's good news! I wasn't necessarily expecting to hear of any improvement, since I've heard that the anesthesia can sometimes mask improvement in these scans, but I'll take it!!! Then we had a long drive and were happy to finally get back to the hotel to stretch out and relax. My feet are totally swollen...I think I might have done a little too much today! Our flight leaves at 12:30 Sat afternoon, so I think I might wait to pack til tomorrow morning! Pray for sleep tonight and a safe trip back with a happy Reagan!

1 comment:

The Martin Family said...

I'm so so so happy for the improvement for you guys! Awesome pictures.