Monday, September 17, 2018

Day 3- First Day at Disneyland

I woke up around 6:30am and got both Mike and Ryan up early to take advantage of the extra magic hour (Disneyland resort guests get to enter the park an hour early before it opens to the general public). This morning it was California Adventure that was open an hour early so Ryan and Mike headed out at 8am to take advantage of it. My mom, Reagan, and I all took our time getting Reagan up and ready. Thankfully she seemed better. Not happy per se, but content and calm. We were out and in the park by 9:30am or so. Our hotel had a direct entrance to California Adventure so it was super convenient. We located Mike and Ryan who had already ridden on few rides quickly, including the Incredicoaster, a looping rollercoaster, which scared/scarred Ryan from trying some of the easy rides. In that magic hour, they were able to ride the Radiator Springs Racers (a very popular usually very crowded ride), Maters Junkyard Jamboree, the Incredicoaster, and they attempted and failed (Ryan was too chicken) to ride the Toy story midway mania (which wasn't a scary ride). We met up with them at Pixar Pier and rode a few more rides before heading over to Disneyland. We rode the Little Mermaid ride which was wheelchair accessible and perfect for Reagan with the bright lights. Ryan would not ride it. After the whole Incredicoaster incident, he was afraid to get on rides that went into a dark tunnel. Poor guy. We were, however, able to get him on the Golden ZephyrJumpin' Jellyfish, and then the Guardian's of the Galaxy (formerly the Tower of Terror)! After the first drop in that ride, I was ready to get off! I'm not sure how Ryan did it. After that we attempted Monsters Inc with Ryan, one of his favorite movies, but that was a no go...another easy ride he wouldn't get on. Mike, Reagan, and I rode that one as it was also wheelchair accessible. Then we headed to our room for a short rest  and saw a bunch of characters hanging out in the lobby of our hotel! Then it was over to Disneyland to meet up with our friends Heather and Zoey. Heather had quite the traumatic morning getting locked in the bathroom of their hotel room and then having to deal with the hotel to get a new room! We were happy to finally meet up with them near the carousel...Zoey's favorite ride. We all rode on the King Arthur's Carousel twice (they let us stay on for a second trip) and then headed over to Dumbo the Flying Elephant. A ride Ryan had been waiting and waiting for. Before our trip, I had Ryan watch some classic Disney movies he had never seen before and for some reason Dumbo was one of his favorites! So he was super excited about getting to ride the Dumbo ride. While Ryan was in the super long line to get to Dumbo, Heather and I took the girls to go get disability passes. We walked all the way to City Hall at the front of the park, only to be told it would be much quicker for us to just go to one of the DAS kiosks within the park. We finally found one and signed up the kiddos for the disability passes. This didn't allow us to "cut in line" but it did let us get a come back time so instead of waiting in an actual line, we could wait walking around and then come back and get on the ride. I plan on doing a whole separate post on the specifics on accessibility in Disneyland, so stay tuned for that. After Dumbo, we headed toward the Alice and Wonderland rides. Ryan and I did the Mad Tea Party aka tea cups (no wait), then we headed to Tomorrowland. Ryan, Mike, and Grandma all went on the Autopia ride while we waited/rested. Then Mike and Ryan went on the Nemo submarine ride, while Heather, Zoey, Grandma, Reagan and I all went on It's a Small World. This was another accessible ride and were were able to get an accessible boat that accommodates a wheelchair. We didn't even put her head phones on, but Reagan was very tolerant of all of the singing (and it's A LOT of singing). Afterward it was back to Tomorrowland where Ryan/Dad rode the Astro Orbiter. From there we headed to main street where we staked out a front row spot for the Pixar Parade that was happening an hour later. Heather/Zoey and Grandma/Reagan held our spots while Ryan, Mike and I all went and rode the Star Tours ride (a simulator). Then we came back to a very packed street. Ryan was thrilled to get a mickey balloon and we all enjoyed the slightly wet parade (the floats would spit out water). It was starting to get dark so we headed back to the room to get Reagan out of her chair for a while and the sweet girl fell asleep on the bed. My mom, Ryan, and I joined back up with Heather and Zoey in Downtown Disney for dinner, then headed back to the room to crash. It was a looooong but super fun day spent with family and wonderful friends that we were so blessed to finally meet! (13 rides for Ryan and 4 for Reagan the first the Pixar Parade for both!)

Poor scared Ryan...all you can see beside Mike is one tiny little hand holding the bar

Lots to look at in the Guardian's of the Galaxy que...good distraction!

Monster's Inc ride

In our hotel!

Sunday, September 16, 2018

Road trip day 2- Tucson to Anaheim (7hrs)

None of us had the best night's sleep last night. Reagan flailed around whacking Mike in the head continuously and Ryan squirmed around a lot like he normally does. Thankfully our drive today was not nearly as long as yesterday. On a bad note, Reagan was on the verge of tears as we left the hotel and needed pain medication the entire trip. On a good note, she was able to sleep comfortably most of the drive. It was a long drive through mostly desert, but some mountains and we all just took in scenery. We got to Anaheim and checked into the Disney's Grand Californian Hotel around 4:30pm. My mom had already flown in and was waiting for us when we arrived. Also our friends from CA who were meeting us at Disneyland were there in the lobby waiting for us as well. Heather and I have been friends for over 10yrs, meeting each other through our blogs so many years ago when both of our girls were diagnosed with infantile spasms. We've spoken on the phone, texted, emailed, etc...for all of these years but never met in person. Until today. She and Zoey, her precious daughter, were both there and it was so amazing to finally meet them after all of these years! Reagan rested in the room with Grandma while Mike, Ryan, and I joined them for dinner and a stroll through downtown Disney. Ryan LOVED the Lego store! We were all exhausted but it was so nice to get to hang out with them for a bit before our day at the park the next day. Grandma and Reagan were both dozing by the time we got back...Ryan and Mike were out shortly thereafter. As I was finishing off medicines and making Reagan's formula, I could hear the fireworks going off outside. I looked but couldn't see them from our window (I didn't worry about seeing them tonight because we figured we could see them tomorrow or the next day, which we later found out wasn't going to happen, apparently the fireworks are only on the weekends now...very disappointing). Again, I was in bed by 10pm. This seriously never happens! We all went to bed just hoping and praying that Monday would be a better day for our sweet girl. We really want her to be able to enjoy Disneyland!

Windmills everywhere

Are we there yet?

That's a lego hulk! (sorry poor lighting)

Saturday, September 15, 2018

Road trip Day 1- Austin to Tucson (14hrs)

Our original idea was to leave early Saturday morning, that way both kids could sleep away half of the trip making our first (and longest) driving day of 13-14hrs half as long. We probably should have stuck with that plan and tried to get a few hours of sleep ourselves before leaving. Instead we decided rather than put the kids to bed and then have to later move them to the car, possibly waking them up, we should just leave earlier and put them into the car for bed. That of course, left us with not getting ANY sleep, which would later prove a not so smart decision. We were SO exhausted…thank God we drove our minivan which has all kinds of navigational warning systems to keep us on the road. Mike was a trooper, driving almost all of the way (I drove 2hrs but that was the most I could do). Ryan was great and super excited to be on the road and headed to Disneyland. Reagan was restless but dozing off an on. Overall she looked very stressed/sweaty, like she might be headed in the wrong direction. She was. When we got to our hotel in Tuscon, we were two hours early…I hadn’t factored in the time difference (which was two hours because apparently Arizona doesn’t do daylight savings time). Thankfully they were sympathetic to our situation and they allowed us to check in super early and we were able to get Reagan in and onto a bed so she could relax. I immediately noticed a large red welt on her bottom. A pressure sore? Ugh. After only the first day. Not good. I'm sure it had to do with the fact that we drove for so long without even stopping. So much for the "drive while they are sleeping" idea. Reagan and I hung out in the room while Ryan and Mike went to get food. We were staying in a hotel/casino so Ryan was mesmerized and kept wanting to go "play games". We were all exhausted though and we napped off and on all afternoon and then we were all asleep super early (even I was in bed by 10, which is unheard of for me). Glad to be done with our longest day of driving. Another busy day tomorrow!

Monday, September 3, 2018

Prayers for my girl

So our last good streak wasn't a month, but it was exactly two weeks and that's still pretty good. Unfortunately, it was a particularly rough one lasting two whole days and with little to no response to pain medications. It left us a little uneasy about our upcoming trip to California/Disneyland. We've been wanting to visit California for years and when Mike told me to plan a vacation...I immediately thought of CA. I have a close friend that I met in the blog world 10yrs ago who lives just outside of LA. We've never met in person but have been calling, texting, and emailing for all of these years. Her daughter, Zoey (who I'm sure you remember me mentioning before) and Reagan are both the same age and had the same seizure disorder infantile spasms and that's how we met all of those years ago. So now we are all planning on meeting up in Disneyland for a few days and I really need everyone's prayers that my girl can have an extra special wonderful time. That means we need some good days. Lots of them (but really the most important are the days at Disney). The other catch...we're driving! That's two days there and three days back. We've never attempted such a trip before and we're (I'm) a little nervous about it. So LOTS of prayers are appreciated! We're also planning to meet up with one of our previous nurses turned actress in LA, as well as taking advantage of the many beach wheelchairs available along the coast! Hoping our girl can have lots of good days and enjoy this trip to the fullest. When she's not happy...we're not happy (and that will especially be the case with this trip). Both kiddos will be missing a week from school and therapies, but it's been a long time since we went on a trip and we're hoping by waiting til the school year began, that we will miss some of the summer vacation traffic! Please keep us in your prayers...I'm off to stress (I mean pack)!!!

Thursday, August 23, 2018

So many good days and the beginning of school

It's been almost a month since I've blogged. So sorry, time has gotten away from me and I've been meaning to post for quite some time. Reagan has been good. Pretty great actually. She went almost an entire month without any bad days. And even though she did eventually have a bad day, it was short and she recovered quickly. She started getting tense the Friday afternoon after her second iron infusion and then tense turned into tears. She had a pretty miserable night and I was up with her for a good part of it, but by morning she had turned a corner and was better. This going a whole month with no bad days has only happened a few times and it was years ago. I have to admit I was a little nervous about even mentioning it. Kind of like with seizures. When you don't see any, you don't want to even mention the S word. And actually we saw improvement there too. She probably went a month or so without any seizures. But then she had two (one big one) a few days after her bad day. :( Ugh. I hate seizures. We were changing her clothes Monday afternoon and next thing I knew I saw the head turn to her right and fixed eyes. She started coming out of it after about a minute or so but her right eye was still fixed. It was strange. I've never seen that before. She was moving around a little and her other eye was looking around, but that right eye was stuck. It took a good 4 more minutes before she fully recovered and it returned to normal. She had another one that was less obvious later that night. I walked in the room and she was laying beside the nurse. I saw her head turned sharply to the left. Then I looked up close and her eyes were fixed. This one only lasted a minute or so, but it still sucks. I wish we could kick these to the curb again once and for all. Both kiddos started back to school this past week. Ryan is in first grade. He seems to be enjoying it. Reagan is now in 6th. That means all new teachers and school. It's sad because we miss her teachers from Elementary but hopefully she'll have a good team in middle school as well. Hoping for a great year for both kiddos! Please keep them both in your prayers!

Friday, July 27, 2018

Houston and her first iron infusion

Reagan had a follow up with her EPI-743 study doctor Wed in Houston. Mike took off and we drove there and back the same day (as we always do). It certainly makes for a long day. We left at 8am and didn't get back til 7:30pm! We were so lucky that Reagan was in a good mood and handled everything like a pro. We had a long wait for the dr and then two missed sticks for her blood draw (and left without the EKG), it was kind of a pointless appointment. The only thing that we really took away from this appointment was how extremely serious her hemoglobin incident was. Her doctor said the level she had gotten down to was barely compatible with life. So SO scary. He was also pretty adamant that they need to figure out what caused it. Hopefully they do, but for now everyone is still scratching their heads. Today Reagan had her iron infusion. We were hoping to get the missed labs from the other day drawn, but no surprise, they had a hard time finding a vein and once they did, they were afraid to draw from it and blow it. So no labs...again. They were able to do a quick CBC and her hemoglobin levels had gone up to 10.3 (and that was even without the supplemental iron). I asked if she still needed the infusion today, but they were insistent that she needs to build up her reserves and it was necessary. The iron infusion itself went smoothly. They watched her for a while afterward to make sure that she didn't have an allergic reaction, but she was fine. We'll go back in two weeks from now for a second infusion. Hopefully her numbers look good. Thank you for keeping her in your prayers.