Tuesday, February 28, 2017

Laughy morning, crying night

It's been a weird day for my girl. She woke up laughy/kooky this morning, but in a good mood. We had a nurse orienting and she tolerated all of the talking just fine. She was vocal/laughy, but fine. She had PT at noon and despite getting a little worked up at one point (too much talking), she actually had a good session. Shortly thereafter she had OT and that didn't go as smoothly. She just seemed to be on edge (so we cancelled school/vision for this afternoon). The laughing eventually transitioned into tears and eventually her nurse gave her some oxycodone. It seemed to do the trick and she relaxed and dozed off for several hours. She woke up just before 6 when her nurse was changing her diaper. She was laughy again, but seemed OK. That didn't last long. She just got more a more stressed out as the night went on. We tried both clonidine and oxycodone and neither really seemed to help. She ended up in tears for a lot of the night. Definitely the most miserable we've seen her in a very long time. Sweet girl. When I'd pick her up and hold her, she kept having gas as she'd vocalize so I can't help but think that had something to do with it. Poor thing. Daddy is laying down with her as I type this and I'm just hoping and praying she'll doze off and actually sleep off whatever this is that's bothering her. Ugh. My darling girl. Today is rare disease awareness day and I'm really feeling for my rare girl tonight. Please keep her in your prayers!

Monday, February 27, 2017

A little bit spunky

Reagan woke up this morning a little more spunky. She's been vocal and kooky at times today but still good. More talky vocal and squealing vocal. Body is still very relaxed, but hands have been in her mouth more often today. Excessively tonight. No nurse again today so it was just me and my girl today. She had speech this morning and did well with that and then school this afternoon. She's been a bit spunky but good. Hoping she'll sleep tonight. Spunky isn't always conducive for sleep!

Sunday, February 26, 2017

Lazy Sunday

It was another good day for my girl today. She's had another nice, relaxing day today. She's been gassy, but good. Definitely a lazy Sunday today. No nurse today and Daddy played golf, so the kids and I just watched a lot of cartoons! Very relaxed in her body. Hands in the mouth, but not too bad. Glad to have a calm girl again today.

Saturday, February 25, 2017


Reagan slept well last night and woke up this morning in a good mood. She's been very relaxed today. She's finally peeing on her own. And pooing. Definitely relaxed. We had a nurse working today so we could take Ryan to a bowling birthday party. He could hardly wait to start bowling. Wasn't a huge fan of waiting on 4 other kids to bowl first, but he seemed to enjoy it when it was finally his turn again! Reagan was nice and relaxed tonight so I'm hoping we all get a good night's sleep! Sweet girl. Love seeing her relaxed and in a good mood.

Friday, February 24, 2017

Urology appt and sleep

Reagan slept well last night and then just continued sleeping this morning. Like a rock. This girl was OUT. Someone canceled at her urologist's office so we were able to get in for an appt today! Her nurse got her up and dressed, but she stayed fast asleep. And no pee. So I carried her downstairs like a sack of potatoes (this girl was out) and put her into the car. Still asleep. Her nurse had to hold her head because it kept wanting to flop forward while I was driving. We got to the appointment and took her back for an ultrasound, put her on the table, still out. The technician applied the warm gel and the wand to her belly and release! She peed all over. Thankfully her nurse had put down a pad under her or she would've flooded the table! Either laying in wet clothes or having her belly pushed on is what finally woke her up from her deep slumber. She tolerated the rest of the ultrasound and we changed her and went back to the waiting room to wait. And wait. Annnnnnd wait! We waited another 1.5hrs in the waiting room until we were called back for our actual appt. I was not a happy camper. And neither was Reagan. She had been so tolerant of the noisy waiting room while she was sleeping, but awake, she was fed up with those noisy kids! Her nurse had to take her outside to keep her from flipping out. Speaking of flip out, she did have a little meltdown in the room when we were talking to the doctor. Not sure if it was all of the talking, the fact that we were talking about cathing, or the gas she was having causing discomfort, but there were tears! I picked her up and she settled down and dozed back off on my lap. Sweet girl. I'm very adamant about not wanting to cath her on a regular basis. I just don't want that for her. What kind of quality of life is that? And such an invasion of privacy. Not to mention the risk of infection or pain. Not a fan. We also spoke about surgeries that could help, but I'd like to avoid surgery as well if possible. So for now we are going to talk to her therapists about massage or taping techniques to try to get her pooing more regularly (because constipation can contribute to her holding her pees as well), continue using the warm water method, and cath only when absolutely necessary (and measure cathed output to make sure her bladder is not stretching too much). My sweet girl stayed asleep the whole way home and then just kept sleeping. And sleeping. Darling girl. I'm so happy to see her sleeping so peacefully. Especially after such a tense day yesterday. Hoping she'll start peeing and feel better tomorrow.

Thursday, February 23, 2017

Beyond tense and holding

Reagan was very restless last night. She dozed off with the help of medicine but then popped back awake almost immediately. I really didn't think she was going to sleep. I even prepared a little pallet for her in my bed thinking at least I could lay down beside her if all else failed. But when I laid her in bed, she dozed off and actually stayed asleep. When I woke up at 7:30am she was already awake, just laying in bed quietly. That was about as relaxed as she would be all day. Today has been a tense one for my girl. She's taken holding her pees to new levels today. Her nurse tried all morning with the warm water method and was still unable to get her to go. She was getting increasingly agitated and fussy so eventually she had to give her oxycodone to settle her down. She dozed off for a bit right before her PT came and her therapist was amazed at the level of tone she had even in her sleep. She was tense all the way down to the tips of her toes. She would lay very still on her side, seemingly relaxed and calm, but all you had to do is touch or talk to her to realize she was anything but calm. Definitely neurologically off. Her nurse finally cathed her at 1:45pm and thankfully hit the jackpot and was able to drain her super full bladder. That definitely seemed to give her some relief but the tone was still there. This afternoon and tonight her nurse continued to try to get a pee out of her, but she eventually had to cath her again at 9:45pm. We've never had to cath her twice in a day! Ever. I also don't know if I've ever seen a day like today where she's this ridiculously tense in her body (that wasn't a "bad" day with her screaming/crying). She would lay on her back with her knees up to her chest and her head crunched up to midline, like a turtle stuck on it's shell. Serious abs of steel. It was just NOT a good day for my girl. She was still wide awake tonight but did go to bed surprisingly easy with the help of clonidine, so I'm really hoping maybe she'll get a good night's sleep and wake up with less tone tomorrow!

Wednesday, February 22, 2017

A bit tense and sensitive

Reagan fought going to sleep again but eventually I got her down. Of course by the time I got to bed, she was already squirming around and vocalizing. She eventually settled down and I feel asleep. Then right at 6am (moments after the coffee pot beeped) she was up and super vocal. I moved her to her therapy room, turned on cartoons, and she settled down a bit...and I went back to bed for a few minutes. Ugh. We need some real sleep. My girl has been pretty kooky today. She had speech this morning and even though she's still super crunchy, she was more attentive than she was Monday for speech. She's been a little sensitive today. Easily excitable. Bursts of energy where she vocalizes and becomes super tense in her body. I noticed it tonight while we were giving her a bath, but I'm pretty sure she's been doing it all day. She's also been holding her pees again today. Hoping tonight will finally be the night for sleep and she'll wake up less tense tomorrow.

Tuesday, February 21, 2017

Vocal/kooky but good

Reagan was up a lot last night. Well I'm not really sure how much she was up, but she was very vocal. We eventually moved her to her chair, where she seemed a little more content. When I got up, I went in her room thinking she was wide awake because she was making so much noise, but when I cleared the hair from her face, I realized she was asleep (of course I woke her doing that). She's been in a pretty good mood today. A little vocal/kooky but good. She only had one therapy today PT, but she did well with that. She was holding her pees a little this afternoon, but she had one on her own before bedtime so that was good. She was still raring to go at 11pm so I gave her clonidine. She fought going to sleep but eventually she did doze off. Now I'm just hoping she'll stay that way.

Kicking brother...he loves it!

Monday, February 20, 2017

Crunchy girl

Reagan has had a great day today. She slept well last night and woke up super sweet and spunky this morning. Super smiley but also super crunchy. She had speech this morning and I know it was a challenge with her being so crunchy. She's been in a great mood though. Very tolerant of us talking. We had a new nurse come orient today and Reagan was good the whole time. This afternoon she had school/speech and she did well with that too (waving bye to both the speech therapist and the teacher)! Then a bath...the first 100% happy bath in a long time. I am super sore today. Lifting my girl hasn't been easy...lifting my own legs hasn't been easy. Hoping to feel a little better tomorrow (but knowing I could be worse). Reagan was a little more vocal tonight. Very into her hands and spitting all over. Hoping for a less crunchy day tomorrow.

Sunday, February 19, 2017

Marathon day

Reagan slept well last night. Thank goodness, because I had to get up early for my marathon this morning. Reagan was sleepy off and on all day but perked up a bit this afternoon. I on the other hand was spent! The Austin marathon is SO hilly and I didn't feel nearly as prepared for this one as I did the Houston (and I felt LIED to because there were so many hills at the end)! The weather was hot and humid and it was just another awful day for a marathon. I was (and still am) super sore, especially my joints. It's hard to walk. My poor running partner ended up with severe hyponatremia (low sodium) and had to go to the hospital. It was a crazy day. We got home and found a super precious girl. She was making such great eye contact. Such a darling!

Saturday, February 18, 2017

A little sleepy and sensitive

Reagan had a good day but was a little sensitive. She was sleepy in the morning but did finally wake up this afternoon. We gave her a bath with Grandma and she did well with that but did get a little agitated toward the end. She was fine the rest of the night. Spent some time hanging out with Grandma and watching tv. Asleep and in bed early. Now it's my turn. Marathon #2 tomorrow morning. Very nervous. This one is hilly!

Friday, February 17, 2017

Candy, candy, candy!

Reagan woke up around 7:30am. I went in to get her and she got a little laughy. The next thing I know, she was laughing and then her head was turned hard to the right and her eyes were fixed. I tried to get her to snap out of it but she wouldn't. She came out of it on her own and was fine. She was a little whiney/stressed but ok. She had a make up session of speech and took advantage of some of the valentines candy she got earlier in the week! She loved the cherry airhead! And the cherry fun dip! She had red lips and tongue! Not a fan of us talking though. She got a little fussy again but calmed down and immediately fell asleep after her enema/poo.

Ryan at the marathon expo!

Thursday, February 16, 2017

Pretty good

Reagan slept better last night. She woke up around 7am, very vocal, letting me know she was awake and I needed to come and get her! She's been in a pretty good mood today. Still a little vocal and not liking us talking, but she's been fine with all of the attention directed at her. Fingers were still shoved in her mouth most of the day, but she didn't fight you at all when you took them away from her. She's a hand holder. She had PT and OT and did well with both. Tonight she was super precious and sweet.

Wednesday, February 15, 2017

A bit kooky

I'm not sure how much Reagan slept last night. She was up making noise (as was her brother) throughout the night. She's been vocal and a bit kooky today. She had speech this morning and then school this afternoon and she was tense and on edge for both. Just seemed stressed. Easily excitable. Seemed like she could lose it at any moment. Not sure if her tummy was hurting her or what. She's definitely been gassy, so maybe. She's also been yawny and spitty/burpy a lot today. Putting her hands in her mouth a lot and wiping spit all over the place. She did seem to wind down tonight so I'm hoping she might get a better night's sleep.

Tuesday, February 14, 2017

Happy Valentine's Day

Reagan slept well last night, waking up this morning calm and quiet. She did give me a bit of the stink eye when I first approached her, but she warmed up as the day went on. She actually had a busy day of therapy with PT, OT, and school/vision/speech all coming. During PT they worked on a valentine, during OT they played with jello and whipped cream, and in school they read a valentine's story! Fun day! She tried to doze off a few times, and almost got out of school, but she popped back up and tolerated everything really well. Everything except a bath. Not sure what is going on with bath time lately but she is NOT a fan. All in all not a bad Valentine's Day for my girl!

Monday, February 13, 2017

So sleepy

Reagan slept well last night and then just kept sleeping this morning! Her nurse moved her out of her bed and helped her pee...and she still didn't wake up. She changed her clothes and moved her to the car...and she still didn't wake up. We drove to her PM&R appt, got her BP, talked with the doctor, put her back in the car and drove home...she still never woke up! It wasn't until I carried her back upstairs that she finally woke up for the first time. And she was not happy. My girl who was completely limp and well rested all morning was now suddenly tense and agitated. Her nurse gave her some oxycodone and she relaxed and dozed back off. And continued sleeping all night. Hoping she wakes up and has a good Valentine's Day tomorrow!

Sunday, February 12, 2017

Still holding

Reagan was up and at em early this morning...but still no pee. She's been holding all day again today. She's still very tight in her body so I guess that's not too surprising. Thankfully she went with the warm water method without too much trouble. She had periods of looking sleepy (she dozed off once but only for 20min or so) and then vocal/alert today. This morning I took her brother to go see the new batman lego movie. Then this afternoon we went to an Ainsley's Angel's fundraiser at Mooyah burger. Reagan was great. We sat outside and it was a bit windy and noisy at times, but she tolerated it all very well. Hoping for a good week for my girl!

Saturday, February 11, 2017

Sweet but still tense

Reagan seemed to have slept a little better last night. I didn't hear a peep out of her until after my run and shower. She was super happy and sweet though. What a darling girl. Still holding her pees today. And still very crunchy. We had a nurse today, which is good because Mike went fishing and was gone pretty much the entire day. Reagan has been good. Still a little vocal/kooky, but good. Hoping for a more relaxed day tomorrow for my girl.

Friday, February 10, 2017

Smiley and sweet

Reagan was up making noise a lot last night. Mike heard her and said he wasn't sure how much (if any) sleep she got! I moved her to her chair around 6:30am. She was super vocal and super smiley! She's been a sweet girl all day today. A little kookypotimus, but super cute! Only one therapy today, a make up session of PT, but she did well with it. Afterward, her therapist moved her to the stander and she stood for almost an hour in there. We may have overdone it a little though, because tonight I saw she has big bruises on her knees! :( We are ordering new gel padded knee pads for her stander...sure wish they would hurry up and get here! You wouldn't have known it was bothering her though, she was a perfect angel. This afternoon we decided to have another little Valentines Day photoshoot. When we tried it the other day, there wasn't a smile to be found. Today was the exact opposite! Super smiley! But also very crunchy and putting her hands in her mouth nonstop...so that was a challenge! We got some cute ones though. She did start holding her pees again today. Ugh. I know. Not again! Only three all day today and she needed help for 2 of those. Tonight she seemed a little neurologically off. Very tense body. Hard to hold because she'd stiffen her whole body out. Not sure if I actually saw anything seizure-ish per se, possibly. Really hoping she can wind down a little and get some sleep tonight!

Thursday, February 9, 2017

Good but a bit kooky

Reagan had a good day today. Awake and vocal by 6:30am. Very sweet and smiley all day. Very crunchy and kooky! She had a busy day of therapy with PT, OT, and school! She was a little easily excitable, not a fan of people talking around her (only to her). She was also having some gas, which I think could be causing some pain/vocalizations. During OT they did a fun jello activity and Reagan was loving putting her hands in the RED jello (and then trying to cram her hands into her mouth)!! Silly girl! They're going to do this again on Valentine's Day so I'm sure Reagan will be thrilled about that!

Wednesday, February 8, 2017

From serious to super smiley!

Reagan slept well and woke up calm and content this morning. Not smiley, but content. Very still, she looked like she wanted to doze back off. She had speech this morning and did ok. She wasn't a huge fan of her therapist talking to her nurse...definitely wanted all attention to herself. She was very crunchy, hands in her mouth/hair a lot. She had school this afternoon and did well, but the crunchiness did provide some challenges. She seemed less sensitive tonight and she just got more and more smiley as the night went on. I think the smiles were at an all time high! HUGE smiles. So sweet and so precious. Making little sounds like the coo of a dove. Oh how I love this girl...

Tuesday, February 7, 2017


Reagan slept well last night and slept in until 9:30am this morning. She woke up serious but calm. And no pee, but thankfully 20min or so later she went on her own. She was pretty groggy and even dozed back off to sleep for a bit but was awake in time for PT. Awake, but just barely. Very lethargic. At least her therapist was able to get in some really good stretching! She did raise her arm up to wave to her therapist when she left. Sweet girl. Her OT came shortly thereafter and was able to persuade her to do a little work. She's just been super still and super quiet today. Very unlike her. After PT and OT we went to see her reproductive endocrinologist to talk about the fluctuating hormones and seizures we've been seeing at least once a month. She did a quick exam but most of our time was spent talking about things we can do after Reagan actually "officially" starts puberty (even though her hormone levels are already clearly there). So unfortunately there's not much we can do right now except wait and see (and possibly increase her seizure medication). Ugh. Not exactly what I was hoping for. Then we got to sit through 5 o'clock traffic on our way home! Oh fun. Reagan was great though. Just so laid back and calm today. So still. Zero hint of a smile. Not sure what to expect tomorrow. Praying this is not the calm before a storm...

Monday, February 6, 2017

On edge

Reagan was up early this morning. I moved her to her chair and let her watch some cartoons. When I woke back up Ryan was waking up and Reagan was still wide awake. She's been a little on edge and sensitive this morning. She had speech and she was easily upset but redirected fairly easily. She hasn't been a fan of talking pretty much all day. This afternoon you could tell she was escalating. I was talking to her nurse and she was almost in tears. We decided to finally try oxycodone. It helped her to doze off and she slept the rest of the afternoon. She didn't actually wake up until just before 9pm. She woke up serious but was getting increasingly aggravated. I gave her another dose of oxycodone. She was pretty zoned out for a bit and looking like she was going to doze back off when I decided to wipe her mouth (it was a little crusty). That seemed to trigger a seizure-like event. Her eyes were fixed and her arms stiffened to her side. Her head was already turned so that was hard to assess. It only lasted 30sec or so, but ugh. Hate these hormones. Hoping she feels better tomorrow.
Ryan wanted a crab balloon...so youtube to the rescue again!

Sunday, February 5, 2017

Good but no smiles

Today was a good day for my girl, but not necessarily smiley. We wanted to try to get some Valentine's Day photos of her and lets just say she was less that thrilled. She was cooperative, but we never even got one hint of a smile! Oh well. We will try try again. Still got some semi cute ones. Not much going on today. Mike cleaned the garage (something he is very relieved to finally have accomplished) and we all watched the super bowl tonight. What a game! Very exciting. My girl was starting to doze off on the floor (from all of the excitement) and I picked her up and snuggled with her and she quickly fell asleep. Sweet girl. Hoping for a good week this week.