Tuesday, January 24, 2012
I went to bed after midnight and then woke up this morning at 5am. I looked at the monitor and Reagan was still sleeping. I got up because I could see a light on down the hall...my mom was leaving to head back to Dallas. I said goodbye to her and locked the front door and by the time I laid back down in bed, little Miss Reagan was wide awake and "talking". I laid down for a few seconds and it was clear that not only was she not going back to sleep, she was going to be way too noisy for me to fall back to sleep! So I got up with her and the two of us have been up ever since! I was both surprised and relieved to see that she woke up happy. She's been a ball of energy all day today. Very squirmy and still vocalizing nonstop. We were nurseless today so Mike had to take the morning off to watch Reagan so that I could go to my doctor's appt. It was a quick appt and I was back by 11am. I found out that I'm now measuring 37 weeks (but I'm really only supposed to be 33 weeks)...so I have an ultrasound scheduled for next week (to check his size and amount of amniotic fluid). Hopefully he's just a little big and was in a weird position that made it seem like I was measuring that far ahead. I don't need a giant child and too much amniotic fluid is not a good thing either. Anyway, when I got back Reagan was still being her crazy self. She had OT and her therapist was really impressed with how well she was doing. We then had to skip "school" and load up in the car to head in to the medical center to pick up her EPI-743 from her mito doctor's office. Talk about a pain (especially having to drag Reagan up there with me). She was good though and we got in and out quickly. I actually met a woman on the elevator who was in from Tennessee to see our doctor. Her son was just diagnosed with mito (Leigh's) so she had lots of questions. I gave her my blog address but in retrospect, I probably should have given her my phone number too! I certainly don't mind answering questions and keeping our family up to date on Reagan's health and helping other parents out is exactly why I started the blog in the first place. So then we headed back home and made it back just in time for PT. This was when I started getting sleepy (and have been exhausted ever since). Reagan was good until right around 4pm when she started getting fussy. Lots of grunting, whining, and just all around restless. She was super high maintenance, but I was able to keep her from crying...that is until 6pm. That's when it hit her. The tears started flowing so I picked her up and immediately she had a dirty diaper. I changed her and for a bit it seemed like she might be feeling better, but then it hit her again and she was all tears for a while. She's been a little better for Daddy, but she's still on edge and sounds like she could have a meltdown at any moment. I'm going to try to get to bed early, in case I've got an all nighter ahead of me. Please keep her in your prayers and lets hope this is just a few rough moments instead of a full blown bad streak!!!