Today was a better day. Reagan's still tense, but she did finally sleep last night and she's been more stable overall today. No nursing yet on Mondays, but at least my mom was here to help today. Reagan had a busy day of therapy (especially for just coming out of bad days). She had private speech this morning, then OT this afternoon, and then school/speech! She did OK. Not an exceptional day for therapy but she tolerated it just fine. Her hands have been very still today (not constantly shoved in her mouth like they usually are). She's been overall more calm and serious/flat. No smiles, but calm. Well, calm until tonight. So tonight right around 9:30pm or so, she went from completely still and calm to CRAZY. It was as if she had been given clonidine and was then having an adverse reaction to it (but I hadn't given her anything)! She started kicking and flailing and vocalizing. She was super tense. I didn't want to give her clonidine for fear of exacerbating the situation, so I gave her oxycodone. It wasn't appearing to do much. Laying her in bed was a no go. She eventually fell asleep laying beside Daddy but was back awake and flailing in a matter of minutes after he got up. I moved her to her chair where she did eventually calm down a little and doze off. She's super restless though and keeps popping back awake, so the chance of her getting much sleep tonight are not good. I'm just hoping and praying she's normal in the morning otherwise we'll have to cancel or trip to Houston once again!
Monday, February 29, 2016
Sunday, February 28, 2016
Last night was yet another miserable night of no sleep. Reagan was still pretty stressed this morning, but she got better as the day went on. She's still putting her hand in her mouth but most of the time she's just swiping at her face with it. Her lips are a nice red tint from continuously rubbing at them. She's definitely a little less stressed today, still not back to normal, but hopefully getting there. She's making more eye contact today. Not in a constant fog anymore, it's like she can finally see us again. She's also finally peeing again. A lot actually. She's also been pretty spitty today. It's good because her mouth has been so dry for days, but she's also choking on it a lot. Poor girl. I'm so ready to be done with these bad days. Hopefully tomorrow she'll be back to herself! We've got our trip to Houston on Tuesday, so I definitely hope she's 100% by then! Please continue to keep my girl in your prayers!
Saturday, February 27, 2016
So today was not the good day we were hoping for. Last night was rough again (another night in the tomato chair) and sleep was elusive...for all of us. Reagan continues to be miserable. She's sleeping a little more today, and then waking up, but keeping her eyes still closed and thrashing and fussing nonstop. We're still pretty much giving her pain meds around the clock. She's still a little nauseous so today she's been on just half formula/half pediatlyte. She insists on having her hand today. Any time we try to put her arm restraint on, she freaks out even more. Her mouth is so dry...from all of the crying and then sleeping with her mouth open. Poor thing. And she still has that weird acidic/blood smell in her mouth. Actually her whole body smells of bad day (I'm sure partially because she puts her hands in her mouth and then wipes the spit all over herself). Grandma came today so we did get her in the bathtub this afternoon. We were really hoping that the bath would settle her down and help her relax a little (and she did seem to enjoy the bath itself), but as soon as she got out, she was just as stressed as before. She's holding her pees again today. She's SO extremely rigid/tense I can see why. Tonight we were really hoping and praying for some sleep but it's not looking good. She was asleep in her chair so we tried to move her over into her bed. Didn't work. She got very upset, and we had to move her back to her chair. I'm afraid it's gonna be another loooooong night. Ugh. When are we going to finally get some sleep?!?!
Friday, February 26, 2016
It's been an AWFUL one for my girl. Next to no sleep last night. She kept waking up, very restless and upset, pain medications weren't helping more than 20-30min if at all. Same thing during the day. She was MISERABLE. Crying nonstop when awake and not sleeping for much longer than 20min at a time. It was awful. We all felt helpless. And not only was she miserable...she was nauseous too! Gaggy, chokey, coughy, bitey! She bit the inside of her mouth again (and her tongue on the same side) and of course then just kept biting it over and over again. Her spit was tinged with blood and she has this horrible bad day/blood smell about her. Her temp regulation is still way off and she's also holding her pees. Ugh. My poor sweet girl. Please keep her in your prayers!
Thursday, February 25, 2016
I don't think Reagan slept much last night. I moved her to her chair around 3:45am but she was pretty tense and restless. She's been a lot more serious today. Everything about her is way off! She's super sweaty and clammy, her hands and feet are bright red, she's doing a lot of gaggy mouth movements and grinding her teeth, and picking her up is like trying to move an ice sculpture! She's so extremely rigid. She's also been more sensitive to music/talking/her brother. And neurologically off as well. Very startley..throwing her right arm up a lot (her left arm was in a restraint and under a blanket). She's just plain OFF. She did manage to push through two therapies today...OT and school. In OT they mainly just worked on stretching because lets face it, there's nothing she needed more today! Her teacher said that even though her head control wasn't great and she was preferring to keep her head down, she was surprisingly good with her hands today and they played with a ball and worked with her switch and she did really well with both. I'm glad we were able to squeeze in school today, because honestly, I don't have a lot of confidence in what tomorrow will bring. I'm really hoping she can sleep tonight, but that's not looking good either. I've given her oxycodone and it didn't touch her...she's still just as tense and stressed as ever. I also tried some ibuprofen, but so far, no improvement. I was hoping to save clonidine for bedtime but an hour or so later she was losing it (starting to cry) so I did cave and give her clonidine. It definitely didn't help at first...the crying continued...but eventually she did calm down and was quiet. No idea how we're going to get her to sleep tonight. It doesn't look good. Please keep her in your prayers. She is obviously not herself right now.
Wednesday, February 24, 2016
Reagan had a hard time going to sleep last night. Mike laid down with her and she'd fall asleep but would pop back awake as Mike would try to get up. She was pretty restless and would get vocal off and on. I was afraid to give her clonidine (after the adverse reaction she had the other night and because she was already getting a little kooky), so I tried oxycodone. Then I laid down with her for another 30min or so and she eventually dozed off. That put me going to bed at 1am and waking up at 5am to run. When I woke up, she appeared to be asleep but by the time I was headed downstairs, I could hear her talking. I changed her diaper and left her in bed while I went for my run. She was still awake when I got back so I changed her again and moved her to her tomato chair. No going back to sleep for either of us. Well, she did eventually fall back asleep, but she waited until her speech therapist was here! She dozed off in the middle of her session! She slept for an hour or so but kept popping back awake here and there. She's definitely having some temperature regulation issues today. Her hands and feet are very clammy and bright red. She's been a lot more tense in her body today. Very crunchy and even shaky at times. A little kooky/bitey (today and yesterday)...but OK. She's still super smiley and wide eyed. She did have one weird episode this morning. She was on the floor getting her diaper changed when her nurse noticed her with her head fixed to one side. She picked her up, but she just kept doing it. By the time I got in there, she had moved her to her chair and she was sitting with her head turned to the right (which is the opposite of the way she normally turns) and her eyes fixed looking upward to the right. I was able to get her to blink and move, but she just kept her head stuck in that position for a while (maybe 5min). And then she snapped out of it...or back into it! Not sure what that was about but it was definitely seizure-ish behavior. Today we were actually set to start a transition over to Onfi (she's been on APO-Clobazam for 6+ years but we get it from Canada and it's backordered until April so we're going to run out). Theoretically Onfi (Clobazam) is the same thing as APO-Clobazam...it's just made by a different manufacturer. But if you know anything about seizures, you know that changing manufacturers can sometimes cause problems. So for all of these years, I've preferred to just pay out of pocket and continue getting it from Canada just to not risk any issues. Unfortunately, we no longer have that choice (as we will certainly run out long before April). So the plan is to slowly wean her off and onto the new medication. We'll just replace small doses of it with the new stuff until she's on all new. Really praying we don't see any issues with this transition. Since we already saw some suspicious behavior today, I decided to just wait on the transition.
|Someone's tired after getting up so early this morning!|
|Fell asleep on her own tonight but keeps popping back awake.|
Tuesday, February 23, 2016
Reagan was up and at em early this morning around 6:20am. I moved her to her chair where she proceeded to cough every second I wasn't by her side. Don't get me wrong, she's coughy no matter what, but she was clearly doing it for attention this morning!! Silly girl. We were all prepped and ready for our trip to Houston this morning, when I got an email from the research nurse canceling our appt! Apparently there was a pipe that burst in the building and they weren't allowing anyone in! Ugh. Talk about bad timing. Reagan was great, perfect for a long road trip, so that was definitely upsetting. However, it had been raining all night and it was ridiculously windy and gloomy today, so I'm not too terribly sad about not being on the road 6+hrs today. They rescheduled for next Tuesday so we will give it another go then. Praying my girl is up for that. Today I got some sad news. Ainsley Rossiter of Ainsley's Angels passed away. Ainsley's Angels is an organization that helps promote inclusion and awareness of special needs individuals in all aspects of life (including endurance races). Ainsley was 12 and had a rare progressive genetic nerve condition Infantile Neuroaxonal Dystrophy (INAD) but had participated in 100 races!! Below is a pic with her and Rick and Dick Hoyt probably the most famous/inspirational duo ever! The virtual 5k Reagan and I did back in June was an Ainsley's Angels race and just a week or so ago I signed up to do a 10k Ainsley's Angel virtual race with Reagan! It's heartbreaking to hear of yet another special needs child passing away way too early. It makes me think about my girl and how lucky we are to still have her here with us! And tonight she just couldn't be more sweet and precious. Please keep the Rossiter family in your prayers as they try to navigate life without their smiley girl!
Monday, February 22, 2016
After having such issues getting both kids to bed last night, they both actually slept really well! No nurse again today (as of now we're officially nurseless on Monday's). Thankfully I have a friend whose son is in Ryan's class that is willing to pick up and bring Ryan back home when needed. Reagan had a really good day today. She was very laid back...a little laughy...but overall very calm. Still coughy and runny nosed, but good. She had speech this morning, then OT, and then school/vision. She did really well with everything. I'm really hoping she can keep this up as we are supposed to drive to Houston tomorrow for a Drs appt. They are switching all of the kids in Texas in the Stanford EPI-743 study over to Dr Scaglia at TX Children's. It's going to be a long day. I'm driving (Mike has to work), so it will just be me, Reagan, and her nurse! Grandpa is on Ryan duty. The weather isn't supposed to be great (lots of rain/wind in the forecast), but if Reagan's up to it, we're going! Tonight she dozed off on her own so we avoided another clonidine meltdown. Hoping for some good sleep again tonight!
Sunday, February 21, 2016
Reagan had another good day today. She's been pretty laughy again today, at times it sounded a little on edge because it was a bit excessive, but she held it together and had a really good day. She's still very coughy...we all are. This respiratory junk is really giving us a run for our money. Tonight Ryan woke up twice crying and coughing after we put him to bed! That's very rare for him...so he must not be feeling well. It's impossible to get him to take medicine too (he has a very sensitive gag reflex and will just throw up anything you give him), so eventually I had to just give him a tylenol suppository and I think that helped because he stayed asleep after that. Then we also had a traumatic experience getting Reagan to sleep. Reagan was still laughing nonstop and going strong (as we were trying to get and keep her brother down), so we gave her clonidine to help her fall asleep. Well it back fired. She went from laughing nonstop, to very quiet and serious, kicking her legs nonstop and swiping at her face over and over. Not good. I was hoping she'd eventually just settle down and get past it, but she didn't. So I gave her oxycodone and literally 5min later it stopped and she was able to doze off. Whew! Crazy night. Really praying both kiddos stay down and we all get some sleep!
Saturday, February 20, 2016
Reagan was a little restless last night, which was surprising considering how out she was when I put her in bed. Multiple times I heard her kicking at her bed or even a little fuss, but each time I got up and went in to check on her her eyes were closed and she was still asleep. She woke up sometime after the nurse got here. Ryan and I both slept in today...not getting out of bed until 9:30am! I don't remember the last time (if ever) that happened for either of us! Reagan was good today. Very laid back and calm. Still very coughy,even more so in the morning, I think from laying flat all night. This afternoon we took a walk with her and her brother. The weather was perfect it was nice and cool, overcast with a little wind (no direct sun is perfect for Reagan and the wind didn't seem to bother her at all today). Even Ryan was nice and relaxed the entire time! Tonight Ryan was ready for bed early and Reagan was looking sleepy too. Her tummy was making all kinds of crazy noises and it was pretty distended, so I decided to help her go. There was a lot of gas in there, so between the gas and the poo, her tummy was way flatter afterward. This really helped her to relax and she promptly dozed off in Daddy's arms. Such a sweet girl. Hoping she gets some rest tonight. She's so congested and coughy, I know it's got to be hard to sleep!
Friday, February 19, 2016
Reagan was a little more serious today. The laughs are gone. She's been good, just flat. Couldn't get a laugh out of her today. She's still very coughy. Everyone is still coughy! Speaking of coughy...Mike was so sick he stayed home today and didn't get out of bed until after noon! We're definitely ready to be done with the sickies over here. Sick of the sickies. We went ahead and canceled speech again today (her speech therapists sees babies just out of the NICU so we didn't want to risk exposing her to anything). We were going to try school, but she was looking really laid back/sleepy when the time rolled around so we figured we shouldn't push our luck. It's weird because she had a few bursts of craziness today where she'd become very aggressive and want to bite at her hands...it basically took two of us to hold her down. But then this afternoon, she was actually really relaxed and not at all sensitive. We had the house cleaned today and we were worried she might be sensitive to the vacuuming but she didn't seem to care at all (even being cooped up in the room with her crazy brother didn't bother her)! Boy is it nice to have a clean house! Even if it only lasts for a day! ;) Tonight my girl was so sweet and calm. She dozed off and was OUT. I put her in her bed and she didn't move a muscle. I even changed her diaper and she didn't flinch. Hoping my sweet coughy girl can get some good sleep tonight!
Thursday, February 18, 2016
Today was a better day from my girl. Reagan slept in her bed last night until about 5am or so. I heard her moving around so I went in to check on her. I was met with laughs and I immediately knew we were going to have a better day. We moved her to her chair at that point, and then went and laid back down. She was good, but I don't think she fell back to sleep. Reagan's nurse was feeling much improved today, so she was able to come in (another huge blessing). Reagan was very laughy and silly all day today. She also had a couple of poos on her own, which is always a good thing. Only one therapy today, OT, but it was good to get her moving and stretching after the rotten day she had yesterday. Ryan went to school, but I was told when I picked him up that he had been very needy/fussy all day (and asking for me nonstop). He wasn't home long when he laid down on the floor to watch an episode of Mutt & Stuff and dozed off. He must still be feeling a little off, because it's not like him to nap at all. He actually took a pretty long nap there on the floor and was still there when Mike got home from work. Mike came home feeling especially lousy again and running a high fever. I didn't even realize we had a nurse coming tonight, but it worked out great as we were able to keep Reagan upstairs and not expose her to any of her Daddy's sickies (who ended up going to bed around 8pm anyway). Reagan dozed off for a bit but woke up just as the nurse was leaving
Wednesday, February 17, 2016
Sooooo...it's been a rough one today. Reagan woke up around 1 crying so we moved her to her tomato chair at that point. Then it was every hour or so that she'd wake up crying, I'd go in and console her, and she'd fall back to sleep. Every hour for the rest of the night. At some point I got a text from both our nurse and the nursing agency to say that our nurse was sick and couldn't come in today. I wasn't surprised. I knew it would eventually get her. She was running a very high temp and just overall miserable. The only good thing going on today was that Ryan was finally well enough to go to school. So even though Reagan was miserable, at least I had only her to worry about for a while. She was pretty darn miserable all day. She was very spitty, and it was thick and gunky sort of spit, making her lungs sound even worse than they were. Grinding her teeth nonstop. Several times I'd turn away only to look back and see blood dripping from her mouth (well blood tinged spit anyway). She must've bitten her cheek or something with all of that clenching and grinding of her teeth. Poor girl. She was SO miserable. Pain medicine didn't really seem to be helping to terribly much, but she was able to doze off a couple of times, even if only for a short while. It was a looooooong day. And even longer once Ryan got home. He was super high need and couldn't understand that he wasn't aloud to go upstairs and swing while his sister was sleeping! That made for a lot of screaming that eventually woke up his sister. Thankfully Grandpa saved the day and showed up to take Ryan outside for a bit. They walked all the way to the school/playground down the road and Ryan was able to get out some pent up energy. We all felt better after that. Tonight I see a glimmer of hope with my girl. She has given me laughs a few times. I really hope this means we're in for a better day tomorrow. She dozed off with the help of clonidine tonight and we're about to move her to her bed. Really hoping she stays asleep! Thank you for keeping my girl (and our whole sick family) in your prayers!
Tuesday, February 16, 2016
Reagan's nurse came in today, God bless her. We obviously have infected her with what we have and she's been coughing as well. On a good note, we already all have it, so no worries about her spreading it to us! I just wish we could've kept from giving it to her!! Ryan was still running a pretty high fever last night, so I kept him home from school again today. He's definitely getting bored, so hopefully that fever will stay gone and he can go to school tomorrow. Reagan was good today, and her physical therapist donned a mask and gloves and braved the sick house to come and work with her. She did fairly well, all things considered, but she did almost freak out at the beginning. Her body is SUPER tense right now, so while it was good for her to stretch a little, I think it wasn't particularly comfortable for her to do and she let us know. Today we've also noticed some temperature dysregulation and her back is getting quite sweaty when sitting in her tomato chair. I tried laying her down on the floor tonight to give her some time out of her chair, but a combination of coughing and gagginess prevented her from laying down for too long. She was gaggy off and on tonight. I'm not sure if that's legitimate gagginess or if it's just the thick drainage going down the back of her throat. Either way, it doesn't sound pleasant. I have no idea where she's headed right now, but I sure hope she starts to feel better soon. Her fever has been gone all day today, but her cough is quite thick.
Jealous, needy brother! Couldn't stand that I was holding Reagan!! Silly boy.
Monday, February 15, 2016
I was home with both sick kiddos today by myself. It appears we are now officially without a Monday nurse again. Ugh. Don't even get me started. Reagan was good today although you can tell she's getting just a tad tense. Being stuck around a whiney/needy brother could do that to you. I thought we were in the clear feverwise so I went ahead and cancelled the drs appt I had made for both of them this afternoon (for fear of exposing them to something else at the drs office). Well, of course as the afternoon went on, both of their fevers came back and both were looking especially sick again. Ugh. Reagan was a lot more sensitive to talking and music on tv tonight. She's definitely getting a little more tense. We also heard from her nurse today that she might be starting to come down with this junk. Please pray that's not the case...but apparently this is but is extremely contagious. So far Mike is the only one without symptoms, but I did notice him coughing tonight as well. So sick of being sick.
Sunday, February 14, 2016
So annoyed with our nursing agency! We're going to be nurseless for the next two days (today and Monday) and both Reagan and Ryan are now sick (and me of course)!! What the heck?!?!? Mike is the only one still healthy. Reagan slept well last night, Ryan not so much (he was up talking to himself at 3). Reagan woke up with smiles and has been smiley and wonderful all day. Just the sweetest sick girl you've ever seen! She's slept off and on throughout the day...but not to the extent of yesterday. More just little cat naps. I could tell when Ryan woke up today that he wasn't feeling great either. They both just have this glassed over sort of look in their eyes. Ryan is also running a fever and coughing now too. Ugh. He even crawled up on Mike's lap and took a nap today. That NEVER happens. My poor sick kiddos. Prayers that they somehow get over this quickly. Reagan is easy to get medicine into...Ryan not so much. Actually he's impossible. So, hopefully he can fight his way through this! Nemo is still keeping him amused...so that's good. Tonight Reagan was a little hiccuppy and we saw what appeared to be a gaggy face a couple of times...hopefully that passes. We definitely don't need any of that. Tonight she was super sweet and fell asleep in my arms, but the transition to bed didn't go so well. She got super vocal with Daddy when he tried to lay down with her and didn't settle back down until he got up! Crazy girl. Hoping everyone sleeps tonight and somehow we make it through the day tomorrow. Keep us in your prayers!
Saturday, February 13, 2016
So Reagan is definitely sick. Boy, good thing this is just allergies and not contagious, right?!?! Ugh. My poor girl. She's been running a fever all day between 99-101 and in addition to congestion, she's got a cough. She's been really good though...basically sleeping the whole day away. But when awake, she's smiley and sweet. You can tell she feels awful, so I'm so glad she's been able to sleep through it. Sweet girl. Why can't we just get healthy around here already?!?!? So frustrating. Please keep us in your prayers.
Friday, February 12, 2016
Reagan has been good again today. We were a little worried. She woke up fussing this morning and looked pretty serious for a while, but she really mellowed out and had a great day. She had speech this morning and did really well with that. No more therapies the rest of the day, but she was in a good mood. I'm sick. The same respiratory gunk I had before it seems. The same stuff Reagan picked up from me the last time. Of course the dr says it's "allergies" but then why is it contagious? I really hope no one else gets it, but tonight I did notice that Reagan sounded congested and she was running a low grade fever. Ugh. Not again. Big prayers that I get over this quick and Reagan does not get it (or at least not as badly as the last time). Ryan had a birthday party tonight for a little boy in his class, so we had a nurse filling in so we could take him to that. She slept off and on while we were gone, but she perked back up right around 10pm! She was a sweetie though. I picked her up and held her and she dozed off in my arms. Sweet girl. Hopefully she sleeps tonight because I'm exhausted!
Thursday, February 11, 2016
Reagan had another good day today. She was up early this morning and a little more tense in her body, but still very smiley and even a little laughy. She had OT and school today and did really well with both. She was very good with her motor control today so during school they worked on a lot of hands on things. She even made a valentine! After school we did make some time for a bath. We are definitely noticing some temperature regulation issues (clammy/red hands and feet) and along with those we see an increase in pit smell! Definitely time for a bath! Tonight let her roll around on the floor. It helps to keep her from getting too sweaty and it also really helps her to get that gas out! Poor girlie, she's clenching and we're way overdue of a poo! Her tummy is starting to look a little distended now, so hopefully she'll go soon.
Wednesday, February 10, 2016
Today was another great day for my girl. She was a little less laughy today, but the laughs are still there. She's been a little more into her hands today. Lots of fingers getting shoved down her throat! This morning she had speech, which she did well for, but wasn't super interested in. After speech we headed over to the orthotic place to pick up her new AFOs. We waited almost an hour before finally getting seen, but thankfully Reagan was patient and wonderful and the AFOs fit really well and only needed minor adjustments (and they are zebra print so they're super cute). That put us back home just in time to pick up Ryan from school. No more therapies today, it was good to have a slight break after having two super busy days. She was great the rest of the day. A little gassy but good. The laughs did pick back up tonight and she was being quite the silly girl. Her hands were in her mouth a lot and she was rubbing at her chin with them, so she ended up with a pink chin just before bed. It took clonidine (for the second night in a row) to get this silly girl to sleep! She was too funny. Love this girl.
Tuesday, February 9, 2016
Today was a super happy, super laughy day. This girl had a serious case of the laughs. Not at all on edge, just super happy laughs. She has been a doll today. She had PT this morning, then OT, and then school/vision therapy this afternoon! It's been quite the busy day again! She was a pro with it all and laughed her way through the day! Her vision teacher did some vision testing (with her wearing her glasses) and she definitely thinks she sees better with them on, they seem to help her to focus on things more quickly. It was a great day for vision because she's had the big eyes all day today. No sign of sleepiness today! But still very calm and relaxed in her body. Love seeing still hands on this girl. It's been a great day and I'm really hoping the good days continue! Going to pick up her new AFOs tomorrow! :) Mike and I went and looked at cars today (specifically the Acadia). We're hoping to get a new car this year that will more comfortably seat everyone. Looking for a 7 passenger seating SUV. We will probably will have to get a new one, so that we have the option of adding any modifications we might need in the next year or two (car has to be less than 2yrs old to modify). Still not sure what we want but we have to have enough space in the back (with the 3rd row seats up) to fit Reagan's folding wheelchair...so that rules out several options right there. Anyone have any suggestions? Definitely not looking forward to making a car payment again.
Monday, February 8, 2016
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
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
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
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!