Monday, February 8, 2016

Sleepy then laughy

Reagan slept well and woke up sweet this morning. She's still very still and relaxed in her body. She had a super busy day of therapy today. An early morning makeup session of PT. Followed immediately by speech. A 3hr break, which toward the end of it she was actually doing her darnedest to doze off but we fought to keep her awake (since OT was on the way). OT worked with her for a bit but at one point she did doze back off. Silly girl. All of this stillness makes her sleepy I guess! We trialled her for a bit with her glasses today and we really think she seemed to see the tv better with them. And she just looks so darn cute in them too!! Then this afternoon my girl got a case of the giggles and had them the rest of the night. Super sweet. Super darling, but full of laughs! It's a good thing she was so happy though because her brother threw the mother of all tantrums when Grandpa tried to leave! I mean clinging to his leg and pulling him back up the stairs! I've never quite seen anything like it. He was hysterical! This boy does love his Grandpa!

These pics of Grandpa/Ryan are from last week, but I forgot to post them!! Too cute! 

Sunday, February 7, 2016

A little serious/groggy but sweet

Reagan had another good day today. She's been very laid back and still. Not too smiley but Grandma has gotten some smiles and a few little laughs out of her! She was a little groggy today. Almost as if she had been given medicine (but she hadn't). Very mellow, she took a couple of naps but even when she was awake she seemed half awake/half asleep. Tonight Reagan stayed with Grandma while we went over to a nearby friend's house to watch the superbowl (a friend of Mike's from high school lives less than a mile away from us...what are the odds). I figured Reagan wouldn't be too into that and I'm glad we didn't bring her because it was LOUD. Instead she and Grandma hung out watching movies! I think Ryan enjoyed himself playing with lots of new toys and eating BBQ, but he wasn't super interested in the football either. I brought him home around 8 and he crashed. Reagan was up for a while longer but super sweet and cuddly. She did seem a little off neurologically. Kept dozing off and popping back awake. Hoping she sleeps well tonight and wakes up in a good mood tomorrow!

Saturday, February 6, 2016

Still sweet

Reagan was up early this morning. Not sure how well she slept last night, but she was still pretty sweet and calm. Maybe a little less smiley today and a little more tense (slightly crunchy) in her body, but still super cute. We had a nurse today so this morning we took Ryan to Jumpstreet to let him get some energy out and then went to the farmers market just outside. It was a cold, windy morning so we didn't last long...just long enough to buy some decadent desserts (although they were gluten free so that makes them healthy right)! We came home and just hung out. I finished decorating the tree in Reagan's therapy room for Valentines day. I think I like it decorated for Valentine's Day even better than Christmas! There was another large poo, it's usually all or nothing with this girl, so this afternoon she took a nice relaxing bath with Grandma! Tonight Ryan found his new love. Nemo! He's never watched the movie, because honestly, I thought it wouldn't hold his interest...but he's in LOVE! Watched it twice before bedtime. Gets very sad when it's over. I think this has solidified our decision to do another ocean themed bday party this year. Such a good gender neutral theme and both kiddos love it! Reagan was great all day, although tonight she did seem a bit off. Just a little groggy/neurologically off. She was also a little sensitive to music on tv...she vocalized a couple of times (ever so slightly), just letting us know she wasn't going to put up with it. I held her and she eventually fell asleep in my arms. What a sweet girl. Hoping she continues to have good days!

Friday, February 5, 2016

Sweet girl, big poo, and Seinfeld oh my!

Reagan slept well and woke up this morning super sweet and calm. Calm turned out to be very good, especially considering our nurse didn't come in until noon today (so she could stay late) and I was on my own until then. I ran downstairs for maybe 10-15min to get Ryan dressed and out the door for school and by the time I got back upstairs...I could smell it. And see it. It's never good when you can actually see the poo while she's still sitting in her chair! It was a MESS. Thank God for chux (the disposable changing pads) because I had those things spread out everywhere! I had to grab her arm restraints too because you can guess the first place her hand went! Yuck! I had her stripped and completely wiped down when her speech therapist knocked on the door (of course I locked it so I had to go down and let her in)! It was much easier finishing the job with her help! Reagan was so laid back and happy though, it could've been much worse had she been stressed or tense! She had a good session of speech and then shortly thereafter both her nurse and Grandma showed up! Boy could I have used them two hours earlier!! Reagan was great and happy to see them both. Grandma had Ryan duty and the nurse had Reagan under control, so Mike came home early from work and we left for San Antonio. My sister gave us tickets for Christmas to go see Jerry Seinfeld. You could kinda say we're big Seinfeld fans. We have most of the episodes memorized and still watch it on a daily basis. So yeah, we were excited. We went early enough to give us time to have dinner beforehand (of course we still got stuck in some serious traffic leaving Austin). Reagan had school while we were gone and even though she fell asleep before, she woke up in time and had a great session. We ate dinner right off the river walk, but didn't sit outside though, it was pretty cold. Then we walked (stuffed) back to the theater and grabbed a coffee in hopes of staying awake! It was a beautiful theater! The Majestic Theatre. I took a bunch of pictures because it was just so pretty! It was filled with tons of much older, much better dressed (and probably much more wealthy) people than us! We had great tickets (thanks to my sister) and were in the front section of the orchestra on the aisle. There was a guy who came out to open for Jerry who was pretty funny and then Jerry came out around 7:22 (I looked at the clock). He was great! Still so funny. We really enjoyed it and thanks to our seats, we were right beside the side exit and didn't have to fight through people to get out (Gotta go)! Even getting out of the parking garage went very smoothly! Our drive home was a lot faster than the drive there and we were home by 10:30! Reagan had taken a little nap earlier, but was awake when we got home. She was sweet though and I got to get in some snuggles before bedtime. It was a good night!

Thursday, February 4, 2016

Sleep, smiles, and biting?

Reagan finally slept last night!!! Woo Hoo!!!! So happy! And even better, she woke up this morning without any signs of nausea and feeling much improved! Even smiley!!! So happy! Unfortunately this happiness was short lived. She fell back asleep and slept for a while, but when her PT came we figured there would be no harm in stretching her. Right? She was so laid back and calm this morning, we thought we were out of the woods. Wrong. She woke up mid stretch and was NOT good. She was very crunchy and bitey and super stressed. Very reminiscent of a bad day. No crying (no tears), but very agitated and frantic in her movements. She was so bitey, in fact, that we had to put her arm restraints on. Her nurse gave her some oxycodone which immediately seemed to help (it's about time). She dozed off and we all tiptoed away, upset that we ever bothered her in the first place. She didn't sleep long though and woke about an hour later, still very tense/bitey. This time we gave her clonidine and again, she dozed right back to sleep. She was awake and asleep a few times...the next time we gave her ibuprofen but the times after that she seemed to have relaxed a little. It's been almost an entire week since her last poo, so we tried to help her go but nothing was coming (this girl is a clencher in fact she's even holding her pees today). Finally we had to go the route of an enema, but that finally did the trick. Not a ton, but enough to give her some relief (and we also got her to pee). She seemed markedly improved after this. Even giving us some long awaited smiles...very similar to this morning. Whew! I sure hope we're done with this. It's been a rough few days for my sweet girl!
All smiles this morning...

Hoping she'll stay asleep! ��

Wednesday, February 3, 2016

Night terrors and nausea

So last night was even worse than the night before! You might wonder how that's possible. Well, throw in a couple of episodes of what could only be described as night terrors, and that about sums it up! Reagan dozed off beside Mike last night and I thought maybe there was some hope for sleep. Maybe she'd even sleep in her bed. Nope! She went from fast asleep to awake and SCREAMING! Mouth open as wide as she could open it, screaming in the highest pitch I've ever heard. Awful. This went on for 30min or so. Afterward we moved her to her chair and she continued to vocalize, but it was more of a yell. It was horrible. She did finally doze off, only to awaken again to the horrific screaming. Just awful. Mike and I were up a lot last night...for longer stretches of time. On a good note, when it was finally time to be up for the day, she seemed a lot better. Well, except for the nausea. So she was better, but definitely gaggy. It was only here and there in the morning but progressed as the day went on. She did pretty well with speech this morning and even in the afternoon, when she was considerably more gaggy, she did awesome for school! Tonight, however, the gagging/retching got much worse. I switched her over to pedialyte and just prayed that she'd be able to sleep it off. I finished off all of her meds and then gave her clonidine and hoped for the best. She ended up having an adverse reaction to it, that made her kick and flail nonstop for about 15min, but she was closing her eyes all the while so I just did my best to hold her down and give her some pressure and eventually she dozed off in her chair. Big prayers that she'll sleep tonight (we're all struggling here) and that she'll wake up in the morning feeling much improved all around! Poor sweet girl. It's been a rough couple of days!

Tuesday, February 2, 2016


We were up ALL night with my girl! Seriously. She was miserable. Mike laid in bed with her from 12-2am hoping she'd fall and stay asleep. Finally at 2 we moved her back to her tomato chair and the rest of my night I spent up and down trying to soothe her. Medicines were not working. Nothing seemed to help. She wasn't a fan of me, not really a fan of anyone. I think she was just plain miserable. Today she's been a little better. This morning she almost seemed like she might be completely fine. But that wasn't the case. She was very moany/fussy all day. Preferred to be left alone, but did surprisingly well with both PT and OT! Crazy! This afternoon and tonight she definitely escalated. Didn't want to be held, didn't want us to sit next to her, just lots of moaning and whimpering. She also is feeling a bit hot (98 in one ear and 99 in the other). Again, medicines don't seem to be helping. Not sure what we're going to do, but it's looking like it's going to be another miserable one for everyone involved.

Ryan out of school again and trying to get my attention from outside! He laughed and laughed!!! Thankfully he's pretty unaware of his sister's suffering although tonight he did tell me (when he heard Reagan crying) that "she's so sad"!! :(