Saturday, December 31, 2016

Quiet New Years Eve

Reagan had a super sleepy day today. When I woke up to run this morning, I immediately heard her pump beeping. For whatever reason, I couldn't hear it while I was asleep but the second I woke up, I could hear it. I went in her room and found her pump stuck at 140mls...meaning it had only run for 2hrs before stopping. Even worse, I never even found a reason for it to have alarmed! No kink, no bubbles, no nothing. I just pressed run and it started running again. Stupid pump. So despite listening to a beeping pump for 4hrs, she was still fast asleep. When I got home 3hrs later, she was still sleeping. I changed her, she stayed out. I changed her again later...still out. It wasn't until this afternoon that she finally woke up. She was a little serious, big eyes, but calm. She mellowed out even more the longer she was awake. I picked her up and held her and she relaxed enough to have a little poo on her own!! Always excited to see that. Her body is definitely more relaxed right now. She did still want her hand in her mouth while awake though, so I did put her arm restraint back on and shortly thereafter, she was back asleep! Not a very exciting New Years eve for my girl (kinda like Christmas), but I love seeing her finally able to get some much needed rest!

Friday, December 30, 2016

Sweet dreams

Reagan finally SLEPT last night! Whew! It's been a while. When Mike first laid down with her last night, he was having to hold her hands and she was super twitchy. But he said once she was finally out...she was OUT. He was laying beside her and didn't even wake up til 1:45am to come to bed! This morning she slept in until 11am. No therapies today so I'm glad she could get that extra sleep. Nothing makes this mommy happier than to see this girl sleeping peacefully in bed with her arms relaxed and raised up above her head. Ahhhh. Sleep has always been such a struggle for her...I just love it when she's finally able to get that deep, restful sleep! She was only awake today from about 11am to 3pm. Her nurse got in some good stretching, helped her have a poo, and we gave her a bath in that time. After her bath, she dozed off and then continued sleeping the rest of the night! She needed help with her first pee, but has been peeing on her own the rest of the day so that's good. Overall, she's just more relaxed today. Hence the sleep and the pee. I transferred her to her bed tonight and she stayed out. Sweet dreams, sweet girl!

Thursday, December 29, 2016

Neurologically off and still so tense

Today was another tense day for my girl. She was up and moving around as early as 1:30am this morning. I went in and repositioned her and gave her some medicine in hopes that she might settle down and finally get some rest.  I don't think that ever happened. I repositioned her again at 5am when I got up to run, but she was still awake and moving when I got back so I just put her into her tomato chair and let her watch cartoons. She was still holding her pees today. Only three total and all of them were with help. Needless to say, her body is still super tense today. Lots of crunching in half. Even in her tomato chair (more to the right today though and usually she's crunched to her left). She had speech this morning but it was a challenge. With her so crunched, using her eyegaze is nearly impossible. She was looking down a lot though so her therapist just worked with her on the PODD book. After speech she was still in her chair (and I was downstairs), when I heard this weird series of laughs out of her. It didn't sound like any laugh I had ever heard out of her...almost a possessed sort of laugh. I knew something was wrong. I took off up the stairs and by the time I got in there she had stopped but had her head was turned all the way to the left and her eyes nearly closed but fixed to the left. That lasted another 15-20sec and then she was back to. It's definitely time to put in a call to the neurologist. Not that there's much he can do, I highly suspect puberty is the culprit, but he at least needs to be made aware of this dramatic increase in seizureish behavior lately. Not happy. My poor girl. These tense/crunchy days must be so tough on her body. Lots of hair pulling. Hands shoved down her throat. It's rough on us physically, so I know it must be really tough on her. This afternoon she had both PT and OT and tolerated both well. Mike's parents were in town this week so this afternoon we went to go see them at his sister's house, but since Reagan was still pretty crunchy/tense we felt it would be best to keep her at home with her nurse. Ryan enjoyed chasing ducks and harassing his cousin, and we all enjoyed the gumbo! When we got home Reagan was still pretty feisty. At one point I heard her vocalizing/escalating, so I went up and tried to soothe her. I picked her up and held her. She was SO twitchy in her hands. Definitely has some neurological issues going on today. She just continued getting more stressed, so her nurse eventually gave her oxycodone. It definitely seemed to take the edge off. She never fell asleep with it, but she did calm down a bit. REALLY hoping tonight will be the night for sleep! Poor girl. She's just been so tense the last few days and no sleep sure isn't helping. Please keep my girl in your prayers!

Wednesday, December 28, 2016

Tense and holding

Reagan was up a lot last night. I woke up around 2am to her vocalizing and found her up at the top of her bed completely uncovered. She had managed to pop her extension out from yanking on her tube, so her shirt was wet and had to be changed. I tucked her back into bed and gave her a dose of oxycodone and she seemed to settle down. I crashed and assumed that she went back to sleep but apparently she was back awake and making noise shortly thereafter. Mike eventually moved her to her chair. Her nurse found her spunky and vocal this morning. And no pee. Finally around 10am she got her to go. She then had speech where she was pretty crunchy and into her hands the whole time. Not the best session. She's been super crunchy and into her hands all day today. Lots of hair pulling. A little less vocal this afternoon, but still super spunky. She had another pee (with help) around 2pm and then went on a holding streak. We started trying to get her to go around 5pm, but she refused. 20 bottles of water and an hour later, we gave up. I tried again between 8-9pm. Nada. Finally at 11pm I tried again. I was literally on my last attempt (less than half a cup left) when she FINALLY went. Ugh. This girl. She also got an enema today and wouldn't poo either (despite lots of stinky gas). She is just so clenched up! Hoping she loosens up tomorrow. She's got a busy day of therapies so hopefully her body will cooperate! Now...if she could just fall asleep!

Tuesday, December 27, 2016

Bursts of crazy

Reagan woke up spunky and vocal this morning. Very crunchy and biting on her hands. An arm restraint on that left arm, helped keep her from doing too much damage. She tolerated working on sitting and stretching with her nurse, but she was still pretty vocal. She worked on tall kneeling while grabbing/reaching for items with her PT and tolerated that well. Afterward, once in her tomato chair, she was very active, kicking around nonstop. Crossing and uncrossing her legs over and over again. Grabbing at her harness a lot. Her nurse tried to distract her with the iPad, but this only seemed to make things worse and things just seemed to escalate...she became super vocal and was flailing around a lot. She did calm down a lot once the iPad was removed and sounds were minimalized. The rest of the day was better. She even did fine in her wheelchair listening to the radio and playing with her switch toys. Her nurse even helped her color a picture in her coloring book! Reagan was still vocal but smiling! I have to wonder if tummy pains might be to blame for the sudden bursts of fussiness today...or maybe it's just sensory related. Sure wish she could tell us. Sweet girl. Hoping she can sleep tonight with this increased energy!

Monday, December 26, 2016

Kooky at times but good

Reagan slept in a bit this morning waking up right around 9:30am. Just in time for speech at 10am! At one point during speech she did seem to get a little overstimulated/stressed, but she settled down once her computer was moved. Later her nurse worked on sitting with her and she did great! Very good head control today. She got in lots of good stretching as well. Then this afternoon she had a good poo (thanks to a docusol mini enema) and then started looking very sleepy. Her nurse dimmed the sounds and lights and she dozed off and took a nice hour long nap! She woke up abruptly due to some outside noises and immediately became very vocal and kooky, and fixated on biting her fingers. She settled down a bit but became very vocal again while playing with her switch toys. She was OK the rest of the night. A little vocal, but good.

Sunday, December 25, 2016

Sleepy Christmas

Christmas was pretty similar to Christmas eve for Reagan. She slept in, woke up for a bit, fell back asleep (sleeping most of the day away), and woke up again at night! She did get to open her presents today, so that was a little more exciting! This was Ryan's first Christmas that he was super into Santa and presents, so we were hoping to catch a magical moment as he came down the stairs...instead he just got super shy from us filming him! I have to say it was a little anti-climactic! He did really enjoy opening presents though. My girl dozed off not to long afterward and we eventually moved her back up to her bed. She did finally wake up tonight around 10pm and was up for a bit while we were all playing a board game. She didn't last long before dozing back off beside us! Sweet sleepy girl. Wish she would have had a more exciting (awake) Christmas, but I was just glad she was content!

Saturday, December 24, 2016

The night before Christmas

Reagan and Ryan both slept well last night. I had a long run this morning (20miles), so Mike watched the kids. Reagan was good, she slept in a little, but has been calm and content. When I got home I found her very serious and still. I picked her up and got the tiniest smile out of her. Shortly thereafter she dozed off and we moved her back to her bed. I did notice a huge sore on her finger. She's got a crack along the knuckle of her pinky finger (on her left hand the one she's always got in her mouth). I cleaned it, put neosporin on it, and a bandaid. Thankfully she's not putting them in her mouth today, so it will get a break. She slept in her bed until around 8pm or so when I went in to check on her and found her completely soaked through onto her bed. I started moving her around and she woke up. Big wide eyes, very serious...she didn't look sleepy anymore. We brought her downstairs. My sister and her husband got here right around the same time so that added some excitement. And now there are three (dogs). The puppy loves to jump up on Reagan to lick her and try to bite on her tube (uh oh). And of course Ryan is in heaven playing with all the dogs! Hoping my girl wakes up happy tomorrow for Christmas!!

Friday, December 23, 2016


Reagan woke me up again this morning just before 7am. She let out a little squeal (not quite as high pitched as the screams of yesterday)! She's been in a great mood all day today. Vocal but content. A little more laughy tonight. She only had one therapy today, a make up session of PT, but she did awesome. They were working on sit to standing and I could hardly believe it when I walked into the room and saw her standing up nearly as tall as her therapist! She was doing awesome! They also worked on a snowman craft!! Fun! Tonight she was super gassy but giggly. Very darling. Her body definitely feels more relaxed. A little loosey goosey tonight...but darling. We were trying to get her to pose with the santa mask on...and then the reindeer nose...she thought we were crazy! Brother has been very coughy with a runny nose today. It definitely seems hes getting sick. Hoping he can pull out of it and have a good Christmas (and not infect anyone else). Grandma was already feeling crummy when she came down, so now we've got two sickies in the house. Praying Reagan can stay healthy!

Thursday, December 22, 2016

Silly girl

Both kiddos were still sleeping after I got back from my run this morning. I was downstairs getting coffee when I heard an earpiercing scream! I ran up the stairs to find Reagan in her bed, eyes wide open, laying there contently. I'm guessing she was just trying to get my attention! That's her "Hey pay attention to me" scream! No smiles, but she was calm and content so I can't complain. We did notice another staring episode this morning at 8:05am. I just glanced at her and her head was turned to the right (as far as she can turn it) and her eyes were barely cracked. When I pulled her eye lids open I could see her eyes were looking up and to the right. From the time I started timing it, it was about 15sec. So maybe 30sec total. Not a fan of this. Really wish we could just get her hormones regulated so she wasn't having these break through episodes. Grandma drove in this morning and both kiddos were happy to see her! Reagan had speech therapy at 9:30am today and then we rushed off for a drs appt. Just a six month check up with the comprehensive care clinic. This afternoon she had OT and rocked it. She was sitting and doing such a great job! Her therapist was barely giving her any support and then she was even pushing through her arms to help right herself. She works hard! The rest of the afternoon/night we just took it easy. Reagan has been a little squealy all day today...especially when we walk away from her! It definitely seems to be attention seeking! Silly girl. Grandma is getting sick and I'm afraid Ryan might be headed that direction too. Ugh. No sickies!

Wednesday, December 21, 2016

Ready for Christmas!

Today was the day of my grant committee teleconference, so thank goodness we were able to find a nurse to cover the shift today. Reagan has been good. A little goofy at times, but good. She had speech therapy this morning and did well for that. Then nothing else. School is out for the next two weeks so not much going on. Ryan went to Grandpa's house so I could participate in my teleconference without distraction. It lasted 6.5hrs! Talk about long! Ryan had lots of fun with Grandpa and I'm sure didn't even want to come home! It was a long day but glad to be done with that. Now I can focus on's practically HERE! :)

Tuesday, December 20, 2016

Sleepy and still serious

Reagan slept well last night and kept on sleeping this morning. We had a new nurse orienting today to work tomorrow (our regular Wed nurse asked for the day off and we needed someone to fill it as I'm doing a teleconference grant review all day). Reagan was still asleep when her PT got here at 11am. She went up and stretched her in bed, but she eventually woke up. It was good though because it allowed the new nurse to get some actual experience with her. She's been serious again today. Big eyes. She's got a crack on the side of her mouth (left) that constantly has a hand in it. Poor girl. Not sure how it's going to heal up if she doesn't take that hand out sometime soon. And those waterlogged (spitlogged) fingers...they need a break too!

Monday, December 19, 2016

Serious and sleepy

My sweet girl slept in a little this morning and then woke up super serious. She was calm, but serious. A little jumpy/easily startled. I did manage to get a hint of a smile out of her but I had to work for it! She had speech this morning and did well for it but her therapist took it easy. Worked on PODD with her. She was a little zoned out and drooly at times, but she hung in there. Not too long after speech she dozed off and then proceeded to sleep the rest of the day. Still holding her pees (even while she slept), her nurse even used the warm water to get her to go and she dozed right back off. She did wake up around 8:30pm and was pretty alert (considering she'd slept most of the day). She was a little blinky at first. Very sensitive in her eyes. She finally settled down and was wide awake until almost midnight. She did do one funny thing...Mike was laying beside her kissing her (making a kissing noise as he was going in for the kiss) and she'd turn her head away right as he was about to kiss her! It was like a little game! She did it over and over again! Too funny! No smiles, but full of humor! Hoping she can get some sleep tonight and wake up a little less serious/tense tomorrow!

Sunday, December 18, 2016

SUPER smiley but still so tense

Reagan slept fairly well last night. She did wake up and start making some fussing sounds just as I went to lay down in bed. I went in and tried to soothe her and eventually gave her some oxycodone. That seemed to do the trick and she fell fast asleep. She woke up this morning super smiley, still very crunchy/tense in her body, but so sweet! She's still holding her pees...she went 4 times today and we had to help her go each time. When her body is so tight, it's hard for her relax everything! She had a good day today. Still into her hands, a little less this morning, but it's picked back up this afternoon/night. So so adorable though. A smile stretched across her face all day long! Slightly sensitive to talking, but overall pretty calm and content. Really hoping she can let go of this tension and get some relief in her body. She's so contracted, just changing her diaper is difficult and there's lots of popping. We really need to get her in for her annual hip/scoliosis x-rays but we've been waiting and hoping to get her in on a day when she's having less tone (just to try to get an accurate view of the state of her bones). This sweet tense girl. Hoping she can sleep tonight.

Saturday, December 17, 2016

Day trip to Houston

We all slept in today! Reagan finally woke me up at 9am and I found a little girl on top of her covers and soaked through! She was super smiley, although crunchy, and pretty vocal. Ryan slept in until 10am when I finally went in and forced him to wake up! Not sure what that's about. He never sleeps that late! He woke up fine though and everyone seemed to be in good spirits so we headed to Houston for Mike's sister's baby shower. Both kids were great in the car, Reagan with her hand in her mouth nonstop! The only mishap we had today was when we first got to his sister's house and they had music playing. She immediately started freaking out, no crying, we stopped it quick enough but it would have eventually escalated to tears. She was fine the rest of the day. Kids running around everywhere and dogs tearing through the house, she was a trooper! Ryan loved playing with his cousins and getting all muddy in the back yard (and stepping in dog poo...ugh). Both kids were great for the ride home as well. Ryan dozed off for a bit but it was shortlived. When we got back home we decided to drive down a road close to our house that goes all out for Christmas. It was packed even though the temp had just dropped 30degrees! Ryan loved it but wanted to get out so that was a struggle. Reagan has been holding her pees all day today, which is good for a car ride, but not good for her bladder. Her body is just so tense she can't go. She's also been having super stinky toots today but she just can't go she's so clenched up! Hopefully she loosens up tomorrow. Glad we can all sleep in again's been a long day!

See anything similar? Ugh that hand in the mouth!

Friday, December 16, 2016

Spunky girl and GI follow up

Reagan slept well last night. I woke up this morning, not to Reagan but to my phone ringing. The nursing agency...never good news. No nurse today. Which normally on a Friday wouldn't be too much of an inconvenience, but today Reagan had her 6 month GI follow up that we had to go to! I was able to get a friend to take Ryan to school and Reagan and I headed out to the drs appt...just the two of us. Traffic was awful, the parking garage was packed, we waited 30min in the waiting room with a singing santa that was making Reagan go nuts! Ugh. I was beyond annoyed by the time they finally took us back. They weighed her 55lbs (apparently that puts her in the 8th percentile) and measured her 4ft 1in. Her doctor is happy with how she's doing. He still wants me to increase the rate on her formula to get her a few more calories, but only by 3mls. So we will very slowly (over the next month or two) increase her rate from 70mls/hr to 73mls/hr. After the appt we headed back and picked her brother up from school. Reagan has been great all day. Way too much of her hands in her mouth though. Her poor fingers are all water logged and shrively. I had to finally put her arm restraint on just to give her mouth/fingers a break! But she's a fighter though and constantly working her way out of them! She's spunky. She's still been pretty vocal today and crunchy/tense in her body. Hoping she can mellow out a little. Not sure what's going on with this increased tension lately. It seems she's all or nothing. Either asleep and loosey goosey or crunched up into a ball! There is no middle ground with this girl. I really want a good weekend for her!

Thursday, December 15, 2016

She's awake!

Reagan finally woke up today!! And she's been happy/spunky/vocal all day! She had PT this morning and did well with that and then OT this afternoon. She's been super sweet and smiley today. Very talky/vocal. Definitely tense in her body, but in good spirits. This afternoon and tonight she's been super vocal. A little kooky, but good for the most part. She did have one little hiccup during OT and she seemed like she might lose it, but we think tummy pains were to blame. After her OT left, her nurse gave her an enema and she definitely settled down for a while after that. Tonight she was still raring to go at 11:30pm so I finally gave her some clonidine and she dozed off. Hoping for another good day tomorrow for my girl!

Wednesday, December 14, 2016

Sleep all day (and night)

Reagan slept well last night and then just kept sleeping today. And sleeping. And SLEEPING! She drenched her bed, but her nurse was able to change her and put a pad under her and she just kept sleeping. Finally after the second flood, she decided to get her out of bed (so she could not only get her out of her wet clothes but change all of the sheets) and Reagan woke up! She was awake and alert...for about 15min. And then she was back OUT. That was the longest she was awake all day. Tonight she had another maybe 5min of open eyes, but that was short lived and she was back out. I was happy that at least while awake, she seemed happy/content. I was worried how she might wake up and was relieved to see her in good spirits. She's back asleep now and tucked into her bed. Hoping for another good night's sleep but hopefully an awake/happy girl tomorrow!

Tuesday, December 13, 2016

Awake then OUT

Reagan slept in a little today but was up and awake for PT at 11am. She did fairly well with PT, at first she was VERY tight and fighting it a lot, but halfway through she got super relaxed all of a sudden and at least her therapist was able to get in some really good stretching. Shortly after PT Reagan crashed. She continued to sleep the rest of the day and night! She was OUT. Crazy! Hopefully she still sleeps tonight and even more importantly wakes up tomorrow in a good mood! Fingers crossed!

Monday, December 12, 2016

Flat morning and laughy night

I'm not sure how well Reagan slept last night. She was asleep in bed but when I was about to crawl into bed at 12:45am I heard her vocalize. I went in and found a very still girl with her eyes open. She'd open her eyes wide and look around, then close them, then open and close. So precious. She finally dozed back off but she was so quiet when awake, I'm not sure we'd even know if she was awake or not. I woke up at 7:30am to a call from Grandma and then realized that both kiddos were already up! Reagan was very calm and still but a bit flat this morning. Not really serious, because she seemed super content, just hard to get a response out of her. Even Grandma facetiming couldn't get a laugh or smile from her! She definitely loosened up as the day went on and actually had a really great day! This morning she had speech and she did really well with that. Had some very clear yes's and no's with her head nodding. This afternoon she had OT and did really well with that too. Her therapist said she also had some very clear head nodding answers. Then she had speech/school a little later today and her speech therapist said she even got an actual NO out of her!! She said NO! And I swear tonight I heard mama too! Her teacher did a lot of motor work with her because her hands have been so still and not jammed down her throat like usual. She's been a little on the laughy side tonight. Still having lots of stinky gas. Super darling, super sweet. Loving this mood. She's had cold hands and feet all day today so not sure where she's headed. Hoping she can keep these good, calm days going!

Sunday, December 11, 2016

Good Sunday

Reagan was up and at em bright and early this morning. She was alert and vocal and raring to go! She had lots of tone, but did well working on sitting with her nurse. She also worked bearing weight through her arms while on her tummy and had great head control. Then she started looking a little sleepy so her nurse let her lay down for a while but she would only doze off for short periods and then wake back up and vocalize softly. Eventually she seemed a little more awake and alert again so her nurse put her in her wheelchair and worked with the eyegaze computer for a while. Afterward we gave her a bath and got her all pajamaed up and ready for bed. She took it easy and was a good girl the rest of the night.

Saturday, December 10, 2016

Laid back Saturday

Reagan and Ryan both woke up around 8am this morning. Both were in good moods and pretty darling. Reagan has had a good day today. She's had some crazy stinky gas (and indication that there's poo in there), so I helped her go and I think she's been feeling even better. She's been pretty laid back, a little vocal, but more relaxed. It's been a pretty laid back Saturday. Mike just got back from a business trip to Poland, so we've all just been hanging out today. Tonight we went to Mike's boss's Christmas party and Reagan had her night nurse with her and my stepsister came over to watch Ryan. Both kiddos were great. When we got home, Ryan was asleep and Reagan was dozing off on the floor. We were able to move her to bed and she seems to be down for the night. Gotta get to sleep myself...I'm running 18 miles in the morning!

Friday, December 9, 2016

OK Friday

Reagan slept well last night and woke up this morning well rested. She was a little serious at first, giving the stink eye a bit and vocalizing, but she definitely mellowed out as the day went on! Maybe it was because her nurse gave her an enema first thing this morning (as she was way overdue for a poo)! She took it easy today, no therapies, which was probably good because she still seemed a little groggy. Tonight she's been good. More easygoing. Hoping for a good weekend for my girl.

Thursday, December 8, 2016

Much needed rest

Reagan slept in this morning til 11am. She was still dry when she woke up, so her nurse had to help her go. She was a bit serious, but calm and quiet. She didn't seem to like us talking, but was OK one on one. She had a make up session of speech at 12:30, so her nurse put her in a new outfit (she looked adorable) and put her in her wheelchair. She only made it through about half of speech before falling asleep in her chair! She stayed out even after moving her to the floor and changing her diaper. She continued to sleep the rest of the night. I finally helped her pee again around 10pm because she still hadn't gone on her own. She went, never waking up, and I moved her to bed! Finally my girl is getting some much needed rest. Hoping she'll wake up feeling better tomorrow!

Wednesday, December 7, 2016

Tense body but happy girl

Reagan had a good day today. She slept a little better last night. I know I heard her a few times, but I do think she slept more than previous nights. She was wide awake and raring to go at 7, but still dry.  She held her pee all day yesterday (not going once without help) and she was the exact same today. Ugh. What’s going on? Her body is SO tense! This isn’t good for anything. Not for her back, not for her hips, not for her feet, and not for her bodily functions! Today she even got an enema but didn’t go! Nada. Ugh. Only one therapy today, speech this morning, but she did well with it. She’s been sweet and smiley today, a lot quieter than previous days. She is a little neurologically off today. Flinchy. Eye sensitivity. She got a neat switch toy in the mail today from Santa’s Little Hackers. It was a switch activated Olaf. She really seemed to like it and it didn’t seem to annoy her at all (even though he sings). Tonight she had an “episode” around 9:20pm. She was quietly laying beside me and then all of a sudden vocalized (she’s been quiet all day), I turned to look at her and her eyes were cracked and her head turned to the right. When I pried her eyes open, they were looking up and to the right. It lasted maybe 20-30seconds and then she was back to herself. That was the only episode I saw, but I wouldn’t be surprised if she didn’t do it subtlety sometime today without her nurse even realizing. Damn hormones. She was a sweet girl the rest of the night. Didn’t doze off though until I gave her clonidine and moved her to bed. She was out when I went in to hook her up and woke her up! She vocalized and seemed pretty tense, but went back to sleep fairly easily. Hoping she stays that way. 

Tuesday, December 6, 2016

No pee and so crunchy

Last night was a similar night sleep-wise. My girl dozed off well with the help of clonidine, but by 2am was awake and vocal. I went in there around 4am and found her completely uncovered and wiggled up sideways in her bed! I moved her back down and tucked her back in, but I'm not sure how much sleep she got. When I went back in around 7am she had wiggled herself back into the same position! Silly girl. I decided then to just move her to her chair. Still no pee. Definitely holding right now, although considering how crunchy she is right now, it's not all that surprising. Thankfully she's still super smiley and sweet. Vocal but not as much as previous days. Still lots of hands in the mouth and spitting up a storm (making her a little chokey at times). She had PT this morning and did well with that. Made her therapist and nurse both work to get her up into tall kneeling! It was good for her though...forced her out of that flexion she's been stuck in for days! This afternoon she had school and speech. She did really well with her "I want to say something button" and gave them several yes's and even one clear no! After school she spent some more time in her wheelchair as it was the most relaxed she had been all day. She was very purposefully playing with the peekaboo farm app. Hitting the screen to get to a new animal each time. We saved the bath for tonight when the night nurse was here. Kinda hoping the bath helps her relax a little and actually get some sleep tonight!

Brother reading to Reagan! So sweet (in their matching pjs)! 

Monday, December 5, 2016

Kooky trouble maker

Reagan decided to wake back up as soon as I dozed off around 12:45am. She was quietly vocalizing, so I let her be, hoping she'd go back to sleep. Finally around 2:30am  it was clear that was not happening and she was getting louder, so I tried some oxycodone. Not sure if she ever went back to sleep. Finally around 7am, I got up and moved her to her chair. I could tell it was going to be another kooky sort of day. She had speech this morning and school/vision this afternoon. She did well with both. She's been very bitey today and grabbing and pulling at her tube a lot. Sometimes it seems she does it just to get a rise out of us! Mischievous little girl. Tonight we worked on decorating the tree. Ryan was LOVING it! Reagan enjoyed watching all of the action as well. She's still pretty vocal tonight but not quite as much as last night. Hoping she can wind down and go to sleep soon!

Sunday, December 4, 2016


Reagan woke up this morning vocal and kooky but happy! We decided to go ahead with our plans to go see Santa! Grandma drove in this morning and was able to come along. It was a cold, rainy day so that was fun unloading and loading at the mall. It was much more crowded than usual for Caring Santa...turns out they were letting random mall goers jump right into the line! Not cool. We had actually registered for this weeks ago and when we got there we were given numbers, but apparently they weren't really using that method (the whole idea is that this way the kids won't have to wait in line). Eventually we just decided to go get in line and after jumping on them, it moved pretty quickly. Both kids were really good (if only we could get Reagan to stop shoving her hands in her mouth). Afterward we stood in another (longer) line to buy the pictures, which cost a fortune, only to find out the ones Grandma took on her cell phone were actually better! Oh well. You never know. Anywho, I'm glad we got some cute ones. Reagan has been very spunky today. Lots of vocalizations. LOTS. Tonight the vocalizing was so persistent, we were all getting headaches! She was still raring to go tonight but thankfully clonidine worked and now she's in bed. It's midnight and I'm still not in bed yet. Ugh. Good night.