Friday, April 29, 2011

Another great day in Seattle...

I forgot to mention that we made a quick stop by the space needle yesterday (before dinner). It was extremely windy and cold (Seattle has had the coldest April in history this year). The views were awesome, but still a little cloudy and we had a hard time seeing some of the mountains.

Reagan didn't wake up quite as early today so we all got to sleep in a little. She woke again with smiles and had another wonderful day today! We started off our day at the Seattle Aquarium (along with what seemed like every coughing kid in Seattle).

Reagan seemed to enjoy the jellyfish again.

These puffer fish were so social. They kept coming up to Mike and looking right at him.

These birds were going crazy...

This dome was really neat.

This seal was HUGE!

These sea otters were so was hard to get a pic of them!

This was the most adorable seal EVER!!! He just kept looking around at everyone. I wanted to bring him home with me!

Trying to catch the river otters was even more difficult!

Reagan posing next to Chihuly's sea forms (he's a famous glass artist from Seattle that my mom LOVES).

When we left the Aquarium, we took the monorail over to the Experience the Music Project (super cool building). Mike could have spent all day in here!

It was a beautiful day clouds, blue skies...gorgeous!

This was a neat fountain near the space needle that would move music. When the music got loud, it would blast water 100ft or so in the air!

And that was our day. We made it back to the hotel and ordered room service. We're pooped...and tomorrow we have to leave at 7am to catch the Victoria Clipper ferry over to Victoria Canada! Stay tuned for more pics!

Thursday, April 28, 2011

Busy day in Seattle (picture marathon)

Here's Reagan yesterday...super cramped and leaning forward in her carseat on the airplane. Her knees were less than an inch from the seat in front of her (if the guy in front of her would have leaned back, she would have been in big trouble).

In our hotel room last night...kicking back & relaxing. She was in and out of sleep for a while until she finally crashed early (for her).

She slept all night and then woke bright and early at 5:30am!! At least I was able to get an early start on her medicines. She was in a great mood so we forced ourselves to get moving and then we headed out to Pikes Place Market a little after 8am.

Posing by the fish (hand in mouth, of course)...

Gorgeous flowers in the market...and super cheap!

We met up with Hudson and his family for lunch. I feel like I already "know" them...I've been reading Hudson's blog for quite sometime now. It's always nice to meet another family that knows what it's like to be in your shoes. Hudson has both Infantile Spasms and mito, just like Reagan. He also is very similar to Reagan developmentally. The big difference is that Hudson continues to have seizures. It completely and totally breaks my heart. I want everyone to please keep him in your prayers. He SO needs a break from this...the horrible world of seizures...they all do.

Hudson's brother Hunter and sister Hailey...they were too funny!

Headed down to the pier.

Riding an indoor carosel right off the water.

Back at the hotel, after spending an entire day walking around Pike's Place Market. Our feet are killing us!!! But Reagan is still a sweetie.

Later tonight we went to dinner with a friend of mine from graduate school. We ate at a seafood restaurant right on the water. Reagan was a doll and sat quietly in her stroller the entire time. We couldn't have asked for a better girl today!! Now...we just need to get some sleep!


We're here! We safely to Seattle. Reagan slept well last night and woke in a good mood this morning. No laughing today, but overall she was in good spirits. Less crazy, more calm and cuddly. We got to the airport and had an issue checking bags (the lady charged us even though she wasn't supposed to), then Reagan and I set off the scanner (I'm sure it was her feeding pump) and they had to pat us down, I stood next to a rude, inconsiderate man in the sandwich line, we had to take apart fold and bag her big stroller before boarding, carry on lots of heavy carry-on baggage AND a heavy carseat...and that was just what happened while we were still in Houston! Reagan was great on the plane (for the most part), even though we were so cramped I felt like a hot sweaty sardine. She fell asleep during take off and then woke min or so later, crying. She was fine after I picked her up. Then halfway through the flight, she had a big stinky diaper!! We didn't know what to do so we just held her tight the rest of the flight trying to keep the smell "in". She cried once more right after we landed. Tonight shes been a little jumpy and restless. Shell fall asleep and then startle awake 30sec later...over and over again. She's tired...we're tired! It's way past bedtime! I promise to post some pics tomorrow!!!

Tuesday, April 26, 2011

Too good

Reagan slept well last night. I had a hard time falling asleep (maybe just nervous about our trip), but Reagan slept through til 6:30am this morning. We heard her making noises and I went in to check on her and she was bright eyed and ready to wake up! She's been super good today. Almost too good...she needs to save it for our trip! She's been very smiley and laughing a lot. Very vocal and very responsive. She laughs (or huhs) at anything you do! It's like she's having a conversation with you. I have to admit, it's pretty cute. She's still a little floppy, but very happy to kick and roll around on the floor. She had both OT and PT today...gotta get that therapy while we can since she's missing the rest of the week. I spent the whole day running around trying to get everything ready for our trip. Attempting to get last minute refills on prescriptions and then having insurance deny it because it's too soon (they only pay for meds every 30days)! The letter her doctor wrote listing and explaining why she needs so many meds never now I have to see if we can get them to fax us a copy tomorrow. The cooler I ordered for her refrigerated meds never came, so I've got to go with plan B, freezer packs. Just a little unneeded stress. Our flight leaves at 2:40pm tomorrow, but we're going to head to the airport around 11:30am...just to make sure everything goes smoothly! Please keep us in your prayers! We need to shoot for another record 7 good days!!! Lots of prayers needed for that one! It's still looking like we're going to have very COLD and WET weather in Seattle and Victoria, BC. Pray for showers instead of downpours...since we'll be walking the streets in that!

Monday, April 25, 2011

Getting better

Reagan fell asleep fairly early last night. She wasn't sleeping soundly, she'd wake up and move around, but each time she went back to sleep on her own. She ended up sleeping through til 4:45am...much better than we were expecting. I had to take my mom to the airport at 5am, so I had to get up anyway. She was still awake (and fussy) when I got home from the airport, so we just sat up the rest of the morning. As the day went on, she seemed to get less fussy. She didn't really cry at all today...just some whining when you'd lay her down to change her diaper (and even a few sporadic laughs). Still chewing on the hand...but I don't think she's trying to bite to injure herself anymore. She's also still pretty tense but she's definitely more calm overall, with less crazy movements. I think she's just going to continue to get better and better each day. This should work out perfectly for our trip. We may even end up with a sleepy day on Wednesday! I spent much of the day running around doing last minute errands for our trip (and I have more tomorrow). I also ordered several things online. I ordered a cooler to keep Reagan's refrigerated medicines in but it hasn't gotten here yet. It's gel lined, so it's basically a freezer pack itself. I hope it gets here before we leave. I also had to order a stroller bag for Reagan's big jogging stroller we're taking (although huge, it's the most comfortable option to take for her). We'll have to check it at the gate, so I had to have something to protect that expensive stroller. I also got a mask for Reagan to wear on the plane. I have no clue if she'll actually wear it, but I do worry about her breathing in that airplane air for 5hrs straight! I also got her some ear plugs to wear during take off and landing, so her ears don't pop! I'm thinking about getting some headphones for her, so she can listen to her Disney sing along movies without everyone on the plane having to listen to them (assuming she's happy and up for that). More things to do tomorrow and then our flight leaves at 2:30pm on Wed. Our first real vacation as a family!!! Please continue to keep us in your prayers!

This sums up Reagan's Easter!

At least Bear got to pose with the Bunny on Easter!

Sunday, April 24, 2011

Happy Easter...I think not!

Reagan didn't sleep much at all last night. She fell asleep early but when it was time for us to go to bed, she decided it was time to wake up again. Lots of crying. She'd fall asleep and then wake up 30min-1hr later crying. She'd kick and scream and cry til she turned blue and then finally wear herself out enough to fall asleep again. She followed this pattern all night and pretty much all day today. It certainly hasn't been a happy Easter for my girl. When she does fall asleep, she's very restless. Very twitchy. Poor thing, I just feel so bad for her. I wish there were something we could give her that would help...but everyone knows what happened the last time we tried a new medication...not good. We're just hanging on. Trying to get through these bad days. And hoping that we see a turn around (or at least a sleepy day) by Wednesday when we have to leave for our trip! I'm not looking forward to a 5hr plane ride! A sleepy day for Reagan might be just what we need to keep our sanity. Please continue to keep her in your prayers! We need her to recover before we leave and stay happy til we get back next Tues!

Saturday, April 23, 2011

Bad day

Sleep wasn't so great last night for Miss Reagan. She woke up sometime around 2-3 and stayed awake. Surprisingly, she was content to just lay in her bed so Mommy and Daddy were able to get some sleep. Finally around 6:30am, I picked her up and put her in bed with us. When I got in there she was completely uncovered and laying sideways in her bed! All that time she was laying in her bed wide awake, but as soon as I moved her to our bed, she fell asleep right away in Daddy's arms. Finally around 8am I got up with her and she's been horrible ever since. Today was definitely a BAD day. Lots of screaming crying. Trying to bite her hand nonstop. Very tense. Not much (if any) awake time where she wasn't crying. She did sleep off and on though, so that helped. It gave us some time to recuperate. We tried some Lortab this afternoon and it worked...within 5 min she was out. But it only lasted 30min and she was back awake crying. That's definitely not doing the trick anymore. It's been a LONG day. I'm hoping she'll sleep tonight...we all need some rest. Please keep her in your prayers!

Good thing we got some pics with the Easter Bunny yesterday!

Friday, April 22, 2011

The Easter Bunny has arrived!

Last night was a heck of a night! We finally got Reagan to bed just before midnight (she was so high strung, she had a hard time settling down, even with clonidine). She woke at 1am and never went back to bed! I was up ALL night with her! She was either laughing hysterically or screaming crying...the entire night. Talk about exhausting! When she'd cry, it seemed like she was hurting, but I couldn't for the life of me figure out what it was that was bothering her! She did have another dirty diaper this maybe it was just really bad tummy pains. Who knows. She was still very manic this morning but she took a long nap this afternoon and woke up a little more mellow. Less laughing and smiles...a little more calm...but very sensitive and easily startled. Definitely "off". So much for more good days! This really was a short stretch. I was hoping we'd have good days through Sunday...but who knows, maybe this will work out for the best and she'll have only good days when we go on our trip. We definitely still need lots of prayers in that area. Grandma flew in this morning...and she brought her Easter Bunny costume! We decided to try to get some pics this afternoon (just in case she continues to get more fussy). She definitely wasn't her smiliest but we did get one really cute one! Please keep it in your prayers that we all can get some sleep tonight...I'm running on empty!

Thursday, April 21, 2011

Funny girl

Reagan has had a weird sort of day today. She slept well and woke up happy. And she's been happy all day for the most part...maybe a little too happy. This morning we got a few giggles but as the day has gone on, the laughing and squeals have gotten out of control. Tonight it's almost nonstop. And a couple times tonight, it has led to tears. Short-lived tears, but tears nonetheless. I'm hoping maybe it's just some sporadic tummy pains...she has had some really stinky gas tonight and two horribly stinky diapers today. The laughter led to some really entertaining therapies this afternoon. She only had two of her four regularly scheduled Thursday therapies today and boy did those therapists miss out! She was a riot! She was equally funny this morning for her ophthalmology appt. She was kicking those legs around like crazy...I could barely hold onto her. They checked her eye pressures and they came back high at first (which could indicate glaucoma), so then the doctor checked them again and they were fine (she said they just weren't doing it properly). She wrote out a new prescription for Reagan and wants us to give the glasses a try again. We have to buy completely new glasses though because she's already completely outgrown last years glasses. We decided to go with big girl glasses this go round. I didn't get a great picture of her in them because she was so squirmy...but they're brown and pink and pretty cute on her. She's been busy with that hand all day again. It's funny because she really has the hang of how to get the blanket or glove off of her hand...just bite with teeth and pull. She'll do it over and over again. It's probably one of the most purposeful things I've ever seen her do! Please keep her in your prayers...I'm not sure if we've had enough good days to make it through another bad cycle right now! Actually...I'm good with whatever long as we have a good trip next week!

Wednesday, April 20, 2011


Reagan slept well again last night and woke with smiles once again. She's happy (hand in the mouth at all times or on top of her head), but still very flopsy mopsy and groggy. She was pooped after vision therapy/OT this morning and slept through her school time. I don't even remember the last time we saw her teacher...lately it seems she's either having bad days or sleeping when her teacher comes. She did wake just in time for speech all was not lost. After therapy Reagan got a special delivery. Grandma has been shopping online again and got Reagan an American Girl Doll, Molly. She has long braids and glasses. She's very cute. We'll have to see how Reagan takes to her. So far, so good...

Here are the pictures of Reagan and Abe (our house guest last week who came to Houston to see the mito doctor). It was not an easy task getting pictures of these two. First off, Reagan was in a miserable mood the majority of their visit. But another huge obstacle is Abe's seizures...which are set off by flashing lights (including the flash on the camera). And then to top it all off, our pics didn't turn out at all (these were the ones Abe's mom took) because our camera wasn't focusing! So here are a few pics from last Sat morning right before they left for their 15hr drive back to Kansas!

Tuesday, April 19, 2011

Renal scan

Today was another good day for my girl! She had a great night's sleep last night and woke just as sweet and smilely as can be!!! She only had one therapy today, PT. She kept crunching forward in her stander, we just couldn't get her to keep that head up. She's still a little floppy...and a little groggy...but that worked in our favor this afternoon. Just after lunch, we headed in to Texas Children's for a renal scan (that her GI doc ordered because she keeps holding her urine). Reagan fell asleep in the car on the way there. She stayed asleep as we put her in her stroller and made our way on to radiology. She stayed asleep as they put in her IV...they missed in the first foot and then had to dug around in the second but finally got it...and she never woke up. She stayed asleep as we put her onto the table and they taped her to the platform. And she slept for the entire 41 minute scan. But she never peed. They needed to image her after she voided her bladder, so they had to cath her at the end. She finally woke up just as they were inserting the catheter and then she started peeing all over the place. They pulled out the cath and pee shot out like a fountain! That girl, she sure knows how to hold her urine (that's why we were there in the first place)! So even though she woke up to someone trying to stick a tube up you-know-where, she was still such a good girl. Still very groggy, but sweet nonetheless. Tonight she's still pretty sleepy. I guess she's still in the catch-up/recovery phase. Hopefully soon we'll have some good, alert days with our girl! Grandma's coming in on Friday (with a full size Easter Bunny costume) so she's counting on those good days!!!