Today was our first full day back. We are still exhausted! Reagan included! I got up early to run (why, because I'm crazy) and by the time I got home and took a shower, she was up! So much for going back to sleep! She woke up sweet and smiley though so who can be mad at her! She had an early make up session of PT this morning and did well for that. She tried to doze off just before, but only stayed asleep for 5min or so and was wide awake and ready to go when her therapist got here. She had speech therapy immediately following PT, but that she did not stay awake for! Toward the end, all she wanted to do was close her eyes! I thought maybe she was playing possum...sometimes she'll do this when she doesn't want to work! But no, she was really sleepy! She slept from 10:45am-4pm! She woke up at 4, smiling and happy and then was awake for a while but eventually dozed back off. She was awake/asleep off and on the rest of the night. I eventually transferred her to her bed where she started to get vocal and had to give her clonidine to get her to doze off once and for all! Hoping she can still sleep through the night with all of the sleep she's gotten today!
Wednesday, September 30, 2015
Tuesday, September 29, 2015
This flight went so much more smoothly than the flight to Hawaii! Ryan slept nearly the entire flight and even though Reagan didn't sleep, she was calm and quiet the rest of the flight. Getting off the plane didn't go quite as smoothly, once again it took forever for her chair to show up! Apparently they didn't realize there was someone waiting for a personal wheelchair, so they had to go and search for it for us! Mike was carrying around Reagan for the longest time, just waiting for them to show up with the chair (the terminal was under construction and he couldn't find any chairs to sit down with her)! After we got her wheelchair, we picked up all of our luggage and then took a shuttle over to the rental car place. The guy on the bus was talking to us the whole way there and when we arrived, he came over and asked if he could pray for Reagan! He held our hands and touched Reagan and prayed for her healing! Claiming it! It was really neat and one of our favorite parts of the trip! The faith this man must have to step out of his comfort zone and pray for a complete stranger! Amazing! We were very touched. As we headed away from the rental car place and away from the airport, I just happened to look down and realize our camera was missing! Our digital SLR camera that had at least half of the pictures we took on the trip on it! I panicked. We immediately turned around and headed back to the airport. I ran in to the ticket counter and frantically asked them to see if anyone had found it! A super nice lady called around for me as I stood there crying. There was a lot of waiting and calling and waiting. Finally she picked up the phone and said they had not found it. I was devastated! The second she hung the phone up, it rang again and it was the cleaning crew saying that they had found it and put it in their lost and found! Whew! I was beyond relieved. I seriously wanted to hug that lady! I waited what seemed like an eternity and finally someone brought it out to me! I wanted to hug him too! So relieved! I ran out to the car and we finally started our trek back to Austin! This drive seemed to take much longer than our drive there. We were all exhausted and just wanted to sleep! I didn't sleep because I knew Mike was tired too and I needed to try to keep him awake! When we got home our nurse that came with us was able to go home and we had another one of Reagan's nurses come to work the rest of the day. That was super helpful, as we were all just so exhausted (well, everyone except Reagan). I'm hoping she can get some sleep tonight. She's been pretty restless today and didn't sleep at all on our flight, so she really needs it. We all need it!
Monday, September 28, 2015
Reagan woke up this morning seemingly feeling much better. I spent all morning finishing packing everything back up and we were checked out by 10:30am. We drove to the other side of the island to Paia to go have lunch at Mama's Fish House near the airport. This is THE place to eat in Maui (everyone talks highly of it). I had heard about it 10yrs ago and we had wanted to eat there, but just never got around to it. So this time we made reservations and lucked out with the best table in the house! This place is right on the water. Gorgeous view. Our table was in it's own little nook, so not only did we have privacy (good for an antsy toddler and a child in a wheelchair), but we had an ocean front view as well! The food was really good (and really expensive) and once again we left completely stuffed. Since the restaurant is right off the Hana Hwy, we wanted to go and try to see one of the waterfalls we missed when we had gone with our tour guide. It's called Twin Falls and it's right at the beginning of the road to Hana. For some reason, this time it seemed to take forever to get there. Mike stayed in the car with Reagan (who was sleeping) while the nurse and I took Ryan with us (bad idea). They had the upper falls closed due to high water, but we figured at least we could see the lower falls. Again, bad idea. It was super muddy and Ryan started throwing a fit almost immediately, so the whole attempt was an epic fail. We never saw the falls (we heard them) and then we just trekked back through the mud to the car! We then decided to just drive back to the airport (about 3hrs before our flight). It was a good idea though because the whole process seemed to take forever! We had to call for the TSA Cares person once we arrived. We had our own personal TSA agent that walked along with us the whole way. Unfortunately, it didn't seem to speed up the screening process at all...they still opened each bag and scanned each bottle of medication...so maybe it even took a little longer. Reagan also completely lost it during the screening procedure, because they were taking so long and they had her parked directly under a big fan that was loud and blowing on her. It took her quite a while to calm down. The nurse and TSA cares agent took her away while Mike and I were still waiting on the other agents to screen all of our baggage. When we finally met back up with them, she was still crying but calming down a little. We thought she was better so the nurse, Ryan and I all ran to get some food. Unfortunately, she started crying again while we were gone. Mike was able to get her to settle down and we were all getting super nervous about our flight! Our flight was actually delayed a bit so everyone was just sitting around waiting. Once they started boarding, they did not let us on first (like our previous flight), there were quite a few older people in wheelchairs that we had to file in behind (and then regular boarding was following close on our tails). It was a little more stressful this time around, especially with Reagan's heightened stress, but we were glad that our seat configuration was better than before (we were in the three middle seats and Mike/Ryan were in the two beside us...with Ryan trapped in the window seat). Mike did almost get into it with the guy in front of him when he asked if Mike could keep Ryan from kicking his wife's chair! Mike said NO...he's 3! Ryan ended up falling asleep almost immediately though, so it wasn't an issue the rest of the flight. Reagan was still very tense during take off and until we reached a steady cruising speed. She was actually crying, but it was more breath holding than actual screaming crying, so the plane noise helped drown it out a bit. Thankfully she eventually settled down, but was still very tense and not sleeping. I'm just glad the crying stopped!
Sunday, September 27, 2015
Today was picture day! I was a little worried last night when I heard there might be less sun and a chance of rain today. The forecast this morning seemed fine though, although there was a high wind advisory. We headed over to "baby beach" for the photoshoot at 8:30am. The photographers beat us there, a husband and wife team BellaEva Photography, just the nicest people ever (and such talented photographers...if you're ever in Maui, look them up)!! It was so nice having two of them because Ryan was beyond challenging and not at all wanting to cooperate with any family photos, so they were able to divide and conquer! One would stay with Reagan and me, while the other would go with Mike and Ryan (who just wanted to go back in the ocean)! Hopefully we got at least a few pics of the whole family! (click here to see the pics!) Afterward we went and had lunch at a pancake place called Slappycakes (kinda like an upscale IHOP). They have a grill on the table where you can make your own pancakes. We decided against making our own, we figured it was too much of a hazard to have that kind of heat so close to Ryan, but the made to order pancakes were pretty tasty too! We also got pupus (appetizers) of candied bacon and chicken fried bacon! Ryan devoured the candied bacon! It was a yummy breakfast...but expensive (everything in Maui is SO expensive...especially eating)! Afterward we were all stuffed. We went back to the hotel and relaxed for a bit and then Mike and Ryan went back out to the beach. We tried to take Reagan back to the pool, but it was a bit overcast outside and a little too cool to put her in the water (her nurse Megan tested it out for her and was freezing). As the afternoon unfolded Reagan definitely got more sensitive/tense and there were a few times that something set her off and she started crying! Ugh. Hopefully we're not going into full fledge bad days...we've got our flight back tomorrow! We decided to just hang low and eat room service for dinner tonight. Hoping my girl can sleep off this stress and wake up feeling better tomorrow!
Saturday, September 26, 2015
Today was our easy going day. No plans whatsoever. Well, other than reserving some covered beach chairs first thing in the morning so we could take Reagan down to the beach. It turned out to be a sunny but very windy day and probably not the best day for the beach, but what could we do! Our other days were so jam packed, this was our first free day! The wind would come in gusts that almost felt as if you were standing in the way of a sand blaster! Reagan was able to seek shelter in the covered beach chairs. Daddy did get her out and into the water for a bit, but the waves were also a little rough and she was NOT a fan of getting splashed in the face! She retreated back to the safety of the beach chair while her brother and Daddy rode the waves for a while! Ryan was in heaven! Afterward we did our best rinse everyone off and then spent a little time in the pool. It was a little chilly...the ocean water was definitely warmer. They did have the neatest floats in the pool though. Big puffy, pillow-like floats...basically a buoyant beanbag chair! We saw children and adults alike enjoying them and they were perfect for Reagan. We might have to look into getting one of those for home! The rest of the afternoon we just hung out and then around sunset we drove into Lahaina to walk along the boardwalk. They have a giant indian banyan tree there that was planted in 1873. It's trunk and root system covers 0.66 acres...nearly the entire block! There were so many birds sitting in it while we were there, it sounded like we were in a bird sanctuary! We walked down the boardwalk and watched the sunset and almost ate dinner there, but decided to head back and have dinner at a restaurant closer to our hotel. Ryan was happy about that because they had pizza! Reagan was a little tense and sensitive to the music, so we had to put her noise canceling headphones on, but she held it together. Hoping for a good day for my girl tomorrow...we've got our rescheduled beach photoshoot in the morning!
Friday, September 25, 2015
Today was our third and final Make A Wish excursion. We went on a private guided tour of the road to Hana. This is a long winding road on the rainforest side of the island with lots of places to stop and take pictures. We thought it might be nice to have a guide because when we did this trip 10yrs ago, it was quite scary and the road was full of pot holes and very narrow (similar to what we experienced in Kapalua). Since then, they have obviously repaved the road and added lots of guard rails, so it actually would have been doable (and probably preferable) to drive it ourselves. Our tour guide was very knowledgeable and gave us lots of interesting facts but he also had terrible body odor and didn't stop at all of the places we wanted to stop. It was an all day thing. He picked us up at the hotel at 8am and then we drove 1hr to get to the Hana Hwy and from there it took us 3hrs to go the 30miles to Hana!! We stopped an hour or two along the way and then another 3-4hrs home! We got back right around 6pm! It was a loooooong day in the car, but both kids were actually very good. They sometimes seem to be their best while riding in the car! We took lots of pictures and saw lots of beautiful scenery. Ate more fish tacos and huge concoctions of shaved ice with ice cream at the bottom! It was a good day! (I have lots more pics on our other camera that I'll have to add later...these are just the iPhone pics!)
Thursday, September 24, 2015
Today was a busy day for us! This morning we got up, ate breakfast, and drove to the other side of the island to go to our first Make A Wish excursion...the Maui Ocean Center. It was super windy and the door of our car nearly flew off when I opened the door! We walked around for a while on our own...Ryan wanted to just stay at the very first floor to ceiling aquarium he saw! There was a lot of neat stuff to see. A huge tank of jelly fish...always Reagan's favorite! Then we went to a giant tank full of huge stingrays and sharks. A diver swam in the tank and gave a warm welcome to Reagan and our family and then went through and told us all about the fish we saw. Afterward the diver even came over and talked with Reagan and gave her some shark teeth that he had found at the bottom of the tank! It was really neat! We really enjoyed our time there and even ate lunch at the aquarium right off the water (Reagan dozed off). Ryan didn't want to leave. Afterward we drove around to the south side of Maui, Wailea, and then drove even further south down through the lava fields! This was another drive we did our first trip in Hawaii 10 yrs ago, it was neat to go back and see it again. After all of our driving we headed back to the hotel to get ready for our Luau our second Make A Wish excursion. We were running a little late but we were pleasantly surprised when we saw that the Luau had reserved a handicap spot just for us at the front! We went in and were escorted to our table. Again, this is a Luau (the Old Lahaina Luau) that we attended 10 yrs earlier when we went to Maui for our 5yr wedding anniversary. It was a beautiful Luau, supposedly one of the best in Hawaii. Reagan dozed a little at the beginning while we were eating, but woke up just in time to watch all of the action. Our table was set back a little, I think it might have been better to have been one row closer, so I'm not sure how well she could see but she seemed to enjoy it. It was another long day and we all went back to the hotel exhausted and stuffed! Hoping for another good day for my girl tomorrow! It's going to be another busy one!