Sunday, July 31, 2016

Bad but sleeping through it

Reagan finally slept last night! Unfortunately when she woke up, she woke up crying! We were afraid this might happen. She has been pretty miserable today. Not nonstop, screaming crying. More of continuous whining/moaning with the occasional crying out in pain. She didn't respond at all to oxycodone this morning, but when we finally gave her clonidine, she dozed off and was able to sleep through the bad. It wore off after about 3.5hrs and we waited a while to see if she could go without it, but eventually we had to give her more and she dozed back off. She woke up again and was uncomfortable but we were able to keep her semi calm for a while (with only the occasional tears), then eventually we gave her a dose of Lortab and she was out for the night. I was able to transfer her to her bed, she woke up but went right back to sleep, so I'm hoping she sleeps and wakes up feeling better tomorrow!

On a happier note 4yrs ago...💗

Saturday, July 30, 2016

Water park fun

Reagan was up again last night. Similar to the night before, she definitely slept some, but she was still awake a lot. This lack of sleep is really wearing on us all. Hoping she breaks out of this soon because I'm not sure how much more we can take! This morning we went on a little outing to the nearby Volente Water Park. They opened early from 9-11am exclusively for the Austin Special Needs group and even allowed parents to hold kids on their laps while going down the slides (which is the only way Ryan would have gone down them)! Reagan and I just hung out and did a lot of people watching (she was a little sensitive to stimuli) and Mike took Ryan down the giant slide. He loved it! We had to bribe him with cotton candy to get him to leave. We had a good time, but it was starting to get hot! We came back home and Ryan crashed! He slept all afternoon in the spare bedroom. Reagan was very much on edge and sensitive to talking (me in particular). We're a little nervous about what this means for tomorrow. We were really hoping to get her in the pool this afternoon, but with Ryan falling asleep and her being so on edge, we never really had a chance. Hoping she finally gets some sleep tonight and wakes up feeling much improved.

Friday, July 29, 2016

Spunky and kooky and still not sleeping

Reagan didn't sleep much last night. She seems to sleep when Daddy lays down with her but then wakes back up sometime after he gets up. We know she slept some last night (because she sleeps when Daddy is in there), but only for short periods and then she's back awake and vocal. Ugh. When will this no sleep streak end? She's still spunky and full of energy though...she's our little energizer bunny! This morning she had a make up session of PT and did well with other therapies. She did have one weird episode today. Her nurse heard her laughing and went over to her and she then turned her head to the right. She was fixed in that position, laughing for maybe a minute or so and then she stopped. Definitely seizure-ish. Her nurse looked back at her notes and the last time she documented an episode like this was exactly one month ago. Which makes us wonder if this is all hormone related. I'd definitely prefer that explanation. I do think she's been a bit neurologically "off" this week. Just a little more kooky than usual. Hopefully, we see less kooky and more sleepy over the weekend!

Another Timehop flashback from 4yrs ago! Look how tiny my babies are! And SO CUTE! My dad and step mother had come for a visit and took them swimming...

Thursday, July 28, 2016

Sleep needed

Sleep is still not happening. Not sure what's going on with this girl. She's been pretty energetic during the day, lots of movement, chewing on her hands, still pretty vocal...and it just seems to be carrying over into the night as well. She can't turn it off! Mike was up a lot last night with her. I didn't even hear her on the monitor, I was so exhausted. She's had a good day today. Super smiley and happy. She had PT and OT today and did well with both. No sleepiness at all during the day. Who needs sleep? (ME!)

Wednesday, July 27, 2016

Kooky and not sleeping

Still no sleep. Tonight at least Reagan started in her bed, but by 2am she was vocalizing letting me know she wasn't happy to just lay in bed anymore. I moved her to her tomato chair in her therapy room, but I don't think she ever went back to sleep. She's been pretty kooky/vocal today but content. She had speech this morning and her teacher came to observe, but Reagan was so easily excitable/kooky, they just ended up working on the computer without her! She kept up the kookiness, but she did get in some stretching this afternoon when OT came and did a make up session with her. Tonight she's been good. A little less sensitive, but still pretty energetic. Sleep is not looking good...

OMG...look at these Timehop pics from 7 yrs ago!!! So adorable 😍!! 
(I think this was her endoscopy?)

Tuesday, July 26, 2016

Vocal and tense

Well, it's back to no sleeping again. Reagan didn't make it in her bed at all last night. I moved her to her chair and then she was super vocal and kept us up pretty much the entire night! She's been very tense and neurologically off. Super crunchy. Of course she dozed off and missed PT but woke back up just before we had to leave for her doctors appt. She had a follow up with GI/urology today. We've been using these mini enemas every other day to help her go and they seem to be working. She's going more often and we haven't noticed any more issues with UTIs so that's good. She did OK with the appointment but she was a little tense/vocal especially with all of the talking. Not impressed with how she was sitting in the demo carseat today. It was not doing a good job of keeping her upright (no clue why there's not a center clip) and the straps were cutting into her shoulders. Definitely need to see that other demo. Ryan had a crazy busy day that ended with a visit with his cousins to see Uncle Nathan's fire truck! He was in HEAVEN! He did not want to leave!

Monday, July 25, 2016

Precious, busy girl

Reagan slept well last night! Finally! She woke up this morning very wet, but happy! She's been super sweet and precious all day today. She had a busy day of therapies. She had speech this morning and did well with that. She also had a make up session of PT and then spent some time in her stander. We were just remarking today how great her head control has been lately. This new stander really doesn't have a head rest that gives her any sort of support to help keep her head up (unlike the i2i headrest on her wheelchair), but she doesn't appear to even need it. It's amazing how far she's come strength wise! She looks so grown up in this stander. We had her in it for a while, moved her back down to sitting to adjust her AFO that was no longer on correctly (it probably needs to be adjusted again), and then put her back up for school! She did great. She performed well for school too! It was a busy day but she really handled it all beautifully! Now hoping for more sleep tonight...

Sunday, July 24, 2016

Super sweet but still not sleeping

Reagan did not sleep much last night, but she was thankfully in much better spirits. I got up and covered her back up around 2am and then moved her to her chair around 3. She never really fell asleep until 5am when I gave her some clonidine. Then she slept for a bit but was awake by the time I got back from my run. She's really turned it around today. She's been super calm and easy going. Very sweet. Super cuddly. And a little congested. Ryan's had a runny nose/cough for days and I've had a sore throat all day today...something is definitely lurking. I don't know if it's just allergies or a cold, but we've all got a little something going around. Mike and I got away for a rare golf outing (the last time I played was years ago) with our neighbors! Lots of fun, but SO hot!!! (Lots of Pokemon on the course to keep it entertaining!) 

Saturday, July 23, 2016

Bad night and day

So it was definitely a rough one last night. Reagan spent the whole night in her chair and there was a lot of fussing and moaning and crying that kept me up most of the night. I kept a fairly regular schedule with her pain meds, but it just didn't seem to be helping at all. This morning I tried ibuprofen and that might have provided a little relief. Today it's been a lot of the same. Periods of crying interspersed with periods of moany/whiney/whimpery discomfort. Pain meds still don't seem to be helping. She's pretty miserable. She's had a couple of huge wet diapers that soaked both her and me, so I was a little concerned about maybe a UTI, but I checked it with our strips and everything looks good. So that shouldn't be the issue. I'm assuming just a regular bad day. Despite having a bath yesterday, I can smell that bad day smell in her hair today. Something is off. Whatever it is. Neither we nor her doctors have been able to figure that out (for years). Finally, this afternoon/tonight she started feeling a little better. She and her brother watched Frozen (his first time to watch the whole movie) and she tolerated it all. Nothing seemed to bother her in the least. Unfortunately for us, she's still not looking sleepy so I have no clue if she'll sleep tonight or not. We're hoping for the best! We're all pretty exhausted! Praying for a better day tomorrow.

Friday, July 22, 2016

Bad afternoon/night

Reagan slept well again last night and woke up still calm (maybe a little more serious) this morning. She had an uneventful morning (no therapies today), but did have one seemingly random burst of tears! It just seemed to come out of no where. Her nurse was in the other room so we thought maybe it was for attention? She calmed down as soon as Megan picked her up. Unfortunately that was not the last of the tears. Sometime between 3-4 they started back up again and this time they were not going away. We gave her some oxycodone, but she kept crying. An hour or so later, we tried clonidine. Maybe that helped. A little anyway. She did stop crying but was still very whimpery. Definitely something was bothering her. Maybe in the tummy department? She did have some gas off and on, but it's hard to tell if that's exactly it is that's bothering her. Tonight I stayed upstairs with her, to try to minimize aggravation. She had periods where she seemed fine and periods where she would cry nonstop. She had been calm for a nice long period right before bedtime so I thought maybe, just maybe, she'd be OK to lay in her bed. Nope. That didn't happen. We moved her back to her chair and she went back into another long stretch of crying. Ugh. I'm afraid it's gonna be a long night (it's already been a long night)...

Sitting in a similar orientation you can really see the difference! 
Wow! So grown up!

OMG! He's about 16mo here! So little!

Thursday, July 21, 2016

Super sweet and calm

Reagan slept well last night and woke up super sweet and calm again today. She had PT and got up in her stander for the first time today since her Botox last week, and although she looked good, there was still a lot of redness and her therapist is unsure if there's any improvement as a result of the Botox. Ugh. That's discouraging because we felt the last time there were definitely some changes...some better, some worse, but at least we thought it was working on her. Now we're not so sure. This afternoon she had OT and she did well for that too. Such a sweet girl. Tonight I was able to get away for bunco and Mike watched the kids. It was a good night for it as both kiddos were in good moods. That's not always the case. Hoping for more good days for my girl!

Soooo grown up!!

All of that tone back then enabled her to stand up easily but also it kept those little hands fisted all of the time! 

Wednesday, July 20, 2016

Still but sweet

Reagan slept well again last night and woke up at a more normal time this morning. She woke up very calm, not super smiley but sweet. She had speech this morning and worked on her eyegaze computer and ate some food. She's been a little loosey goosey with super still arms, which is good but not for using the switch. Then this afternoon she had school. I figured it wouldn't be the best fine motor day, but her teacher said that she actually did really well with grasping, it was just harder for her to move her entire arm. She was very attentive though, so it was a good day for school. Overall it's been a good day for my sweet, calm girl. Tonight I even got some good snuggles and laughs. Love this girl.

Tuesday, July 19, 2016


My sleeping beauty finally awoke! She slept the entire night and then even kept sleeping this morning until around 11am! That was 36hrs of uninterrupted sleep! She must have really needed it! And she got some more today as well. She was awake and good for a few hours and then dozed back off this afternoon. She slept for a few more hours and then was awake until bedtime (an early bedtime). She's been very calm and laid back today. Very serene. Hopefully all of that rest has been good for her and she has a great rest of the week!

Monday, July 18, 2016

Sleeping beauty!

Reagan slept well last night and then just kept sleeping this morning. And sleeping. AND SLEEPING!!! This is the first time in a long time that she slept the ENTIRE day. Such a restful, peaceful sleep! Her body must have really needed that! Her nurse changed her, only twice, but she never woke up. Every now and then she'd open her eyes when we were in there messing with her, but only for a few seconds, and then she'd doze right back off to sleep. What an angel. Tonight she had flooded her bed with pee and we were even able to completely change out her waterproof pad, sheets, and clothes (both top and bottom) without her ever waking up! This girl was TIRED! Hoping that she continues to sleep tonight and then wakes up feeling happy and well rested tomorrow! One thing's for sure, she's gonna have a serious case of morning breath (she likes to sleep with her mouth open like her mom)!

Sunday, July 17, 2016

Ainsley's Angel's Virtual Sunset 5k

Reagan slept well last night but woke up with a little fuss this morning. She was very tense in her body, still crunching up in half like a little turtle on her back, and just not looking too happy and maybe a little neurologically off. She was OK though and has managed to push through and have a pretty good day. She's not the super smiley girl we've had most of last week, but she's been content and even given us some smiles and laughs at times. Grandma drove in today and she was pretty happy to see her. Grandma is always good for getting a laugh out of this girl! Reagan was a good girl for her nurse today and even tolerated her crazy brother hanging around. Not a huge fan of overly loud tv, but otherwise pretty laid back (just a little more tense and jittery than usual). Last night was the official Ainsley's Angel's Sunset 5k, so we decided to try to run our virtual sunset 5k at 8pm tonight and we were even joined by Cassey the Central Texas Ambassador for Ainsley's Angels! It was HOT for us (still 90 degrees at 8pm), since we usually run before the sun rises and before the temperatures get up there, but we powered through it! This is Reagan's second year in a row to do the virtual Ainsleys Angels Sunset 5k! She rocked it! What a trooper! 

Grandma followed us the the unOFFICIAL pace car! ;)

Saturday, July 16, 2016

Reagan's first movie theater experience

Reagan woke up this morning a little serious, but still good. We decided to go ahead and give the movie a try. We've been wanting to see Finding Dory and there is a theater in Georgetown that is having a sensory screening today. In a sensory screening the lights are kept at the pre-show level, the sound is turned down a little, there aren't supposed to be any previews, and the no noise policy is not enforced. We decided to go ahead and give it a try! Today was Reagan's first movie in a movie theater. On the way there we used the demo carseat with Reagan. I love the fact that it feels so much easier to just put her directly into the carseat, rather than have to put a harness on her first. Unfortunately, it's just not as supportive. The harness has clamps up above her shoulders that really works to keep her completely upright. In the carseat, she's able to crunch forward more than I like and without a center clasp on the shoulder straps, they have a tendency to slide off her shoulders giving her no support whatsoever. I think if we end up getting this carseat, there are some definite modifications that will need to take place. Anyway, we all made it to the movie theater in once piece and unloaded everyone. We found a group of handicap seats in the front row and sat down. Immediately Reagan was overstimulated by the loudness. I really don't think they turned the volume down at all. I put on her noise canceling headphones and she held it together. They also didn't skip the previews...there seemed to be a ton for this movie (and a short film). From the get go, I could tell Reagan wasn't going to enjoy this experience. I think it was a combination of her being just a little more sensitive today and the fact that it was all just too much stimulation for her. She spent most of the movie crunched up in her chair, not even really looking at the screen. Not sure we'll try another movie. There were no tears, but she didn't seem to enjoy it in the least. Maybe if the seats hadn't been right on top of the screen, it might have been better? Who knows. Ryan seemed to enjoy it. Afterward we came home and just tried to stay cool! It's SO hot outside right now. We've been over 100 for days now! Not much more to report today. Reagan did a lot of rolling again. Lots of rolling over onto her tummy and getting stuck. Maybe she does just want to lay on her tummy?!?! Such a sweet girl. Hoping the good days continue...Grandma comes tomorrow!