Saturday, March 28, 2015

Not so festive kite festival

Reagan was a little restless last night but I think she slept some. She's had a pretty good day today. Been a little sensitive at times, but over all OK. This morning my nephews who are in from Miami were jumping on my stepsister's trampoline so Ryan went over and joined them for a bit. Then we all went over to a nearby park for a "kite festival", which literally consisted of two kites! It was put on by our realtor's group...they were giving away some kites, but they were so cheaply made, none of them got any higher than 5ft off the ground! It was a neat park though and Ryan enjoyed running around and playing with the kites but Reagan was not too keen on the windy weather! Afterward we went on a little drive through the beautiful hill country that begins only miles from our house! We drove through the Balcones Canyonlands Wildlife Refuge and then down around the lake. I'm still in awe of how beautiful the landscape is here, driving around we feel like we're sightseeing in California or something (it's SO much different than living in ugly Houston)! Then we came home and Ryan went to our neighbor's house to drop off a bday present and bounced in their bouncy house for the next hour or so! It was another crazy exhausting day! Ryan will definitely sleep well tonight. Reagan is a little on the kooky side tonight, so not sure how much sleeping she's going to do!

Friday, March 27, 2015

Ryan's filling and Natural Bridge Wildlife Ranch outing!

Reagan and Ryan both slept well last night. Ryan (thankfully) didn't wake up til I went in to get him at 6:40am to head to the dentists office. Let me just take a moment to tell you how ridiculously perfect this pediatric dentist's office is! It is SO nice...beautiful building, waiting room, treatment rooms. Everything is set up to cater to children. There are two rooms off of the waiting is full of video game consoles, little play kitchenettes, toys, and scooters for the kids to ride around on and the other room is set up like a media room with a big screen tv playing a movie. Since it's almost Easter, they have easter decorations everywhere and Ryan couldn't get enough of the eggs! A nice distraction. They also play your choice of kids movies/cartoons from the tv screen above the kids while they are getting their teeth done (not to mention the treatment room is filled with toys and the doctor used a sugar free lollipop to get Ryan to open his mouth)!! Anyway, when we got there Ryan was ready for his morning milk (or juice in this case) so we figured we'd put the sedative (Versed) in it. Well, that didn't work. He immediately tasted it and we had to take another route. Down the throat! He almost puked it back up, but thanks to some fresh juice (without medicine in it), he managed to keep it down. About 10 min or so later, he started to get a little woozy. We took him to the treatment room where they put him on the papoose board...he didn't really seem to mind it much (he was already a little out of it)...but as soon as they opened his mouth up that all changed! He hated them messing with his mouth. They did xrays and then worked on his filling (which was deeper than she originally thought...he's got deep crevasses in his molars which will make them more prone to decay) and then she did a quick cleaning. It seemed to take FOREVER, but we were done and out of there a little after 8am. He was more groggy afterwards. Very goofy, slurring his words and unable to stand up without falling down, almost like he was drunk! Pretty funny. We decided, since he was out of school for the rest of the day and Reagan had no therapies, we would take a road trip to the Natural Bridge Wildlife Ranch just outside of San Antonio (about a 1.5hr drive from our house). It turned out to be the perfect day! We lucked out and didn't see a single school bus or field trip while there and everything ran very smoothly. Ryan was slightly interested in the animals, although once I let him out of his car seat (most kids rode around on their parents lap throughout the park), he was more excited about crawling around the car! We did have a fun incident with an ostrich that was pecking at our lock (and then realized that Reagan had a big poo diaper so we had to rush out of the park so that we could get out of our car and change her...thankfully we were already at the very end)! Everything was very accessible and we saw several other wheelchairs (adults) while we were there! The drive home was excruciatingly long, I was exhausted from our early morning and traffic was awful, so it took us 2hrs to get home, but it was still worth it. We had a great time and it was fun to get out of our normal routine! We're definitely going to try to get out and do more, especially before the weather gets too crazy hot! So it was a very fun, very tiring day!! I need some rest!

Feeling "drunk" after his filling! Had to sit in sister's chair! 

Thursday, March 26, 2015

Sleepy but tense (Freedom Concepts Chill-out chair trial)

Reagan slept well last night and actually slept in a little this morning! We thought maybe she was going to have a sleepy day, but she did wake up eventually and she was VERY serious. No smiles, very tense...but stable. OT came for a morning session and she did OK. She was falling asleep a little toward the end of her session! We did get an exciting delivery during OT. The Freedom Concepts rep came by and dropped off a Chill-out chair for her to try. I love that we're going to get to use it for a week or so and really get an idea of how it works for her (since it is a ridiculously expensive most special needs equipment). We put her in it and she just couldn't seem to get quite comfortable enough to doze off in it. She would close her eyes and then pop back awake over and over again. Finally her nurse moved her to her to her bean bag chair and she fell fast asleep (and managed to miss PT). We're just going to have to see how she does in it over the next week. The one we have is the "basic" model, so it doesn't have the memory foam, which will make it even more comfortable. But I think this should give us a good alternate place to put her on her bad days when she needs more support but maybe a little more comfort than her tomato chair provides. We'll see. The only thing I don't like is that it does not come with an option for a harness. I honestly don't think she could get out of it, because it has higher sides than her tomato chair, but I'd like that additional security! Tonight she's been a little more laid back and not as tense. Hoping for a good day tomorrow...thinking we may go do something fun since brother will be off from school because of his dental work in the morning!
It took a lot of extra cushions to get her just right (and she was still too restless to fall/stay asleep)!

Wednesday, March 25, 2015

No photoshoot, birthday dinner instead!

Reagan woke up a little early today...right around 4:30am! I covered her up but I don't think she ever went back to sleep! I moved her to her chair where she was content to just chill. She has been good today but not particularly happy/smiley. Pretty easy going, we thought about trying to do the photoshoot today, but in the end she just wasn't smiley enough and those hands still want to go in the mouth! She did have a busy morning of therapy though, speech at 10, which she was just not that into. Then PT, which she did fine with but helped us finalize our decision that she just wasn't exactly where we would want her to be for a photoshoot. She had a pretty laid back afternoon. Today was my niece's birthday so we all went to dinner at her favorite mexican restaurant. Reagan got a little overexcited/overstimulated when we first got there, but she was fine after we put on her noise canceling headphones. We had a good dinner (missed our meeting with Make a Wish...totally forgot they were coming tonight) and then came home and just took it easy. My girl fell asleep in my arms so I'm hoping she'll sleep well tonight!

Ryan was a mess!! 

Tuesday, March 24, 2015

Darling girl

Reagan was pretty good today. Still into her hands a lot in the morning, but settled down with that as the day went on! She had OT and school today and did really well with both! (She was still slightly sensitive at times, especially this morning, she didn't like us talking amongst ourselves, but did fine when we were talking directly to her!) During OT she got up into her stander and during school (her teacher was also accompanied by her vision teacher and speech therapist) she worked on her eyegaze device! Tonight she's just been SO precious, wide eyed and smiley...we're thinking of trying to reschedule our photoshoot for tomorrow if she keeps this up! Such a darling girl!

Monday, March 23, 2015


Reagan had another pretty good day. Very similar to yesterday. Still a little sensitive at times, VERY into her hands (wore at least one arm restraint most of the day), and maybe a little more spitty. She had several therapies today. During speech this morning, she was still pretty sensitive/on edge. As the day went on though, she mellowed out a bit. She seemed to do fine with PT and OT this afternoon. Definitely still having cold hands and feet, but otherwise seems good. I'm still hoping she'll mellow out and have some laid back days this week, where she's happy but her body is calm. 

Sunday, March 22, 2015

Batty batty bats

Reagan had a pretty good day today. She's still a little sensitive and very crunchy (her hands are either in her mouth or her hair at all times). Not really an optimal day for pictures. I decided to go ahead and cancel our family photoshoot we've had scheduled, because we would have been fighting Reagan nonstop with those crazy hands! The photographer was very accommodating and we're going to try to do it on one of Reagan's calm relaxed and smiley days. Since we had no other plans, we decided to finally take a trip into Austin to see the Bats at the Congress Ave bridge! We got there right around 6:30 and parked at the Austin American Statesman right beside the viewing area. We sat in the car for a bit (because it was a little stinky) and finally got Reagan out of the car around 7:10pm. The bats started flying out maybe 5min later and then continued to do so off and on til about 7:45pm. It was pretty neat to watch and I'm glad we didn't get pooed on! Definitely worth doing and everyone was surprisingly well behaved (except for Ryan wanting to run and jump in the water)!