Still haven't tried the melatonin. I don't think Reagan wants to...she fell asleep early again last night before I could give it to her. Sleep was better though, with her only waking up once but staying awake for a longer amount of time, maybe that's because Daddy got up with her. She loves her Daddy, she especially loves to sleep on his chest (see picture below). We're still dealing with some tummy issues here. Bowel movements are still causing Reagan a lot of pain. I'm curious to see how this whole switch to soy pans out...when she's actually been milk-free for a reasonable amount of time (without me messing up and giving her something that has milk in it). We're also trying a new probiotic. It's called Florastor Kids. The GI doctor gave us some samples so we're going to give it a try. It's a little different than most probiotics in that it's yeast instead of bacteria. I don't know if that's a good thing or what, but since we haven't seen too much help from the other we'll see. My allergies have been killer today. I have been sneezing almost nonstop all day! I sure hope that's gone by tomorrow. I'm still not completely packed, but hopefully I'll have everything together by morning. Please keep us in your prayers tomorrow as we head out on our journey across the country for answers. I sure hope we get some. I wanted to give everyone a full itinerary for our trip (so you know how to direct your prayers), so here it goes...
Monday June 15th- we leave Houston on Continental at 10:20am (our first flight ever with Reagan) and get to Detroit by 2:23pm. We got 2 out of 3 tickets free through Continental Careforce. They help children get the medical treatment they need by providing free flights for the child and one parent (once a year). It was a huge help in making this trip happen. I decided to go ahead and get a rental car because the taxi cab fares are so steep we'd only have to spend a little more to get our own car for 3 days. We're staying at the International Guest House next door to the hospital. It's similar to the Ronald McDonald House in that it offers reduced rates for families of kids receiving treatment, but it's a little nicer and you're able to make reservations in advance.
Tuesday June 16th- we check in for Reagan's 24hr video EEG at 9:30am. That is an overnight test. They hook her up to all the leads and then monitor seizure activity for a full 24hrs. We have to press a button each time she has a seizure...that's going to get old quick. She's probably going to get irritated of having to lay in the hospital bed 24hrs with junk stuck to her head and our patience may get tested a little. I'm just hoping that maybe we'll see some sort of improvement in her EEG...she hasn't had one since October. It sure would be nice to see less or even better NO hypsarrhythmia!!!!
Wednesday June 17th- after she finishes with the EEG, they will leave the leads on her head and we'll go straight over to have her PET scan done at 1:30pm. She's never had a PET scan before...this is the real specialty of the doctor we're seeing in Detroit. They will sedate her and put some sort of radioactive dye into her and then monitor how her brain metabolizes it. This may give them some sort of insight as to what is at the root of all of her problems (we're hoping). It may also see more clearly if there is in fact a seizure focus in her brain that could potentially be removed by surgery.
Thursday June 18th- 10am we meet with Dr. Chugani for the results. This is going to be the most nerve wracking part of the trip. We're hoping and praying that he'll have some good news for us. Then we leave Detroit on Continental at 3:08pm and get back in Houston at 5:07pm.
I also plan on updating the blog while we are there, so that will be a good way to find out how things are going and the most urgent prayer requests. Thank you all for your support!