Tuesday, April 18, 2017

Go to school

Reagan slept well last night and woke up with smiles again this morning. Yeah! Operation "Go to School" in place! Her teacher was great, scrambling to get everything set up quickly. We got to the school just before 11 and went up to her homebound teacher's room. She already had three little girls from Reagan's class and several teachers waiting in there to meet her! Everyone was quite excited to finally meet Reagan...her homebound teacher must talk about her a lot. Everybody loves Reagan (like Raymond)! Two of the three girls actually still have Reagan's pic that was on the Valentine we handed out to her class. So sweet! They talked with her, asked questions about her favorite things, and then read her a story along with their teacher. It was really sweet. We'll definitely do this again! We had wanted to drop in and say hi to the whole class, but by the time we finished, they had already left art. So maybe next time! It was a perfect day for it. Reagan did well with all of the talking and even the reading. She had her hand in her mouth a lot, but was very smiley! We came home just in time for a few minutes rest and then PT. She did well with PT at noon and then OT at 1:30. She's just a joy to work with when she's like this! Her OT didn't want to leave! She said it's hard to stop when she's this ON! I can see that. She had a little break and then had school/speech/vision therapy at 3:30. She did well for it all. Afterward she did look a little sleepy, but never dozed off. She eventually got a second wind and was raring to go. She's been a spunky precious girl the rest of the night. Super darling. She did squirm around so much at one point, she popped her tube out. She didn't pull it out, she moved just so so that it was in the unlock position and it just popped right out (leaking formula everywhere). This girl! Hoping we can get her to settle down and get some sleep tonight!
(Sorry for no pictures. I wasn't sure if I could take them at the school. I can't believe I have no picture documentation of these past two days. She's been BEYOND precious. You'll just have to take my word for it. Adorable!)

Monday, April 17, 2017

Such a good day (such a good girl)

Reagan slept well but was up and at em early this morning. She's in a great mood, we definitely turned a corner last night. Thank God. We attempted to get her to poo this morning as it's been 4 days since the last time she went. Only got a couple little hard pellets. Not good. We then did an early bath to try to wash all of the bad off from this weekend. It must've worked, because WOW she's been precious today! She had speech this morning and did really well with that. Lots of intentional nodding in response to questions. She took it easy for a while after speech and then had school this afternoon. Again, it was a great day. Her motor skills were spot on, so the teacher focused on that a lot. Awesome girl. Beyond precious. I didn't even think about it until tonight, but today would've been a perfect day to take her to school. I texted her teacher and asked her if Reagan's still on tomorrow if we could finally come up and visit with some of the kids in her class. She said of course! So we'll see. Hoping for another super terrific day for my girl tomorrow!

Sunday, April 16, 2017

Not so happy Easter

Reagan slept in again this morning, not waking until 11am. She woke up wide eyed, but calm. That didn't last long. Thankfully the tears today were not as frequent. She cried but it was more off and on, instead of nonstop. Not exactly the happy Easter we were hoping for but I guess it could have definitely been worse. Ryan enjoyed his Easter basket, especially the "yucky shopkins" (grossery gang). He also had a blast hunting Easter eggs...especially when he realized there were flipazoos inside. Then we had a Facetime call with the Easter bunny (Grandma), which both kiddos enjoyed. No smiles from Reagan, but she stopped crying just to watch the bunny. As the afternoon went on, she seemed to improve. Still getting agitated when Mommy talks, but calm otherwise. We are even getting some laughs, slightly pathetic laughs, but laughs nonetheless.And a HUGE smile right before bed. Hoping we're done with the bad.

Saturday, April 15, 2017

Lots of tears

Reagan slept in a bit again this morning. When she woke up, she was a wide eyed and serious but calm. We moved her downstairs a little nervous of where she was headed. She was OK, whimpering a little but otherwise OK, that is until about 2pm or so. Then it all fell apart. Lots of tears. We're not sure what's bothering her. Is it a "bad day" and if so, what's causing her discomfort? A few times it seemed it might be related to tummy pains because she'd have gas and then start crying. But many times there were just tears. Poor sweet girl. Pain medicine did seem to help and she'd be able to doze off for a while, but as soon as it would start to wear off...the tears would start back up again. It was quite the miserable day for my girl. I had wanted her to participate in egg dying with her brother, but she was just not up to it today. Hoping for a good night's sleep and better day tomorrow for my girl.

Friday, April 14, 2017

A hunting we will go (for Easter eggs that is)

At some point last night Reagan must've fallen asleep. She was laughing when we dozed off but then I didn't hear another peep out of her. So either she was very quiet (which she was when she first woke up) or she actually slept. Who knows. She woke up happy and sweet so that's good. This morning we went to an Easter egg hunt at my stepsister's house. Her culdesac hides eggs and all of the kids go find them! Reagan enjoyed everything except the group photo. It was just too much. Too many kids making too much noise! The next thing we knew she was in tears! She calmed down very quickly and then even got to pet a bunny! I caught a super cute moment with her and her brother. Ryan went up to her and was showing her one of his Easter eggs. Totally unprompted, just interacting with his sister. Sweetest thing ever! We came home just in time for a make up session of PT. She did well with that although she was acting a little sleepy toward the end of it. We think she was just playing possum though because the second her therapist left, she perked up and was very vocal and alert. She's been super spitty today. Shoving her hand down her throat A LOT (and then choking). We've spent the better part of the day trying to keep her hand out of her mouth. It's a constant battle. She's been good otherwise. Hoping for another good day tomorrow!

Cousin pic

All of those noisy kids were just too much for my girl (but she quickly recovered)!

Probably Ryan's favorite thing!

Thursday, April 13, 2017

Darling girl

Reagan slept in today. She woke up around 9:30am with smiles once again. She's had a great day today. She's been awake and alert. Happy and laughy at times. Just all around super darling. She had PT this morning and school this afternoon and her nurse kept her busy in between. She had TWO poos today on her own (always worth celebrating)! All in all a great day for my girl. Hoping for more of this tomorrow as we've got am Easter egg hunt planned!

Wednesday, April 12, 2017

Sleep all day (well nearly all day)

Reagan slept a lot again today. She slept in this morning and then just kept sleeping nearly all day. She didn't wake up until 4:45pm. She woke up calm and content (and well rested)! We had just enough time to squeeze in a quick bath before the nurse left. Reagan was a sweet, mellow girl the rest of the night. Hoping for a good awake day tomorrow! 

Tuesday, April 11, 2017

Pretty good

Reagan had a pretty good day today. She slept in a bit until 9:20am or so and woke a little serious (grinding her teeth and very high tone), but she really mellowed out as the day went on. She had PT and OT and did well with both. She was really into her hands and gagging herself with them, so we did our best to keep them away from her this afternoon. She seemed a little sleepy this afternoon but never really dozed off. Tonight she was super snuggly and even gave me some little laughs. Sweetest girl. Hoping this means we're headed in the right direction!

Monday, April 10, 2017

Still a bit sleepy

Reagan and Ryan both slept in a little this morning until right around 8:30am. Reagan woke up sweet and smiley. She had speech this morning and she did really well with that. But not long after speech, she dozed off and was out cold. She slept hard. And was still fast asleep at 2:30pm when I started trying to wake her. She had already slept through one diaper change, but she needed to take care of some business before her teacher/speech teacher came at 3:30pm (as she has been having stinky gas since yesterday). I eventually had to help her go, but then she was wide awake and ready for the teacher when she got here. Her speech teacher did tell me that she very clearly answered yes (with a head nod) to correctly identify the color red! No surprise she'd know red...it's a color they've been using with her forever since it's one of the two preferred colors for kids with cortical visual impairment (the other is yellow). Anyway, it was another great session for my girl. Afterward we gave her a bath and she was good to go. She did doze off for a bit again tonight, but woke up just before bedtime! ;) She fell back asleep fairly easily so hopefully she stays that way. She's been sleeping a lot during the day the last couple of days, so we'll see!
I guess 3yrs ago was a sleepy day too! 

Sunday, April 9, 2017

Sleepy Sunday

Everyone slept well last night and woke up this morning right around 8am. Reagan was very crunchy but smiley. Still holding her pees but she eventually went with the warm water. She was pretty squirmy all morning, laying on her mat, moving all over the place. Her tube popped open leaking all over her, so I changed her and moved her to her tomato chair. Then all of a sudden she went from being super squirmy to completely still and relaxed. Hands to her side and in her lap. Very still. She eventually dozed off in her chair and slept...and slept. We were a little afraid to move her because she was so content, but we eventually transferred her to her mat on the floor where she continued sleeping the rest of the afternoon/night! Sweet girl! It was a busy weekend and I guess this girl needs some rest! She did start peeing on her own this afternoon/tonight so hopefully we're done with that. Hoping for a good week this week for my sleeping beauty!

Saturday, April 8, 2017

UMDF Houston walkathon

As predicted, sleep was awful last night. Ryan was super restless moving all over the bed nonstop all night (and falling off at one point, while still staying asleep). So Mike spent the rest of the night trying to keep Ryan from falling off the bed. Reagan slept for a couple of hours but then was awake most of the time after that, elbowing me in the head over and over and over again. Both of these kids need their own beds! Morning couldn't come soon enough. Thankfully Reagan was in a good mood and seemed to be feeling well (albeit a little sensitive). Ryan was being a turd, but what's new. We headed over to the walk a little after 10...probably the only time we've ever been to a walk early! Getting there a little early we had time to talk to everyone beforehand so that was nice. The walk in Houston isn't what it used to be. Attendance has really waned in recent years, which is sad because I think the UMDF is really where everyone's money and support should be going. They are a well run organization that's been around for over 20yrs. They have real scientific review boards that review proposals and see that the money will go to the most promising research/researchers. It really is a great organization that has worked to do so much for this disease. You can still donate by clicking this link. Anyway, we had a great time visiting with family and friends. We didn't take any team photos with our our cameras but the walk photographer did get one, so hopefully we'll get that soon. It was a beautiful day for a walk and I'm glad we made the trek to Houston for it. Reagan was great during the walk, while Ryan threw a fit and cried for half of it. We did end up separated from our group (because of Ryan's antics), but we had a decent turnout. It was also pretty entertaining to watch the anime convention people walking around the park! Reagan and Ryan took a pic with a couple of them in our hotel while waiting for the valet! After the walk we headed over to our old neighborhood to visit with our former neighbors. We've done this the last several years and it's so nice to get to spend some time with them. Such wonderful neighbors, more like family, we really do miss them! We got back on the road around 4:30pm and headed home. Both kids were pretty good in the car. Reagan has been holding her pees all day today, but going when I help her with warm water. That's actually perfect for being out and about but I do hope she's going on her own again tomorrow. We are all exhausted and praying for a good night's sleep tonight. Thankful to have everyone back in their own beds tonight!