Tuesday, January 31, 2017

Soooooo tense

It's been a bit of a weird day for my girl. She again didn't sleep well last night. She was up making noises and finally around 6:30am I went in and found her completely wrapped up in her tubing! This girl! I untangled her and moved her to her therapy room. I was unable to get her to pee before bed, so I immediately helped her to go this morning, and thankfully she didn't put up much of a fight. She was a little vocal/kooky and super crunchy/tense in her body, but otherwise calm. She had a busy day of therapy and did amazingly well with it all. First she had PT, which finished with her up in the stander and she waved goodbye to her therapist! She stayed up in her stander for 40min or so until her OT got here. She did well with OT and then again waved goodbye again (pulling her hand out of her hair to intentionally wave to her therapist)!! Then 30min or so after that she had speech/school and then vision/school! And again waving goodbye! She was on a role today! After all of that we got ready to give her a bath and attempted to help her poo. Well that was a no go. I'm not sure if that's what set her off or what, but she was crazy tense for her bath (fighting us nonstop and trembling she was so tensed up)! She calmed down a bit after getting her out (and her nurse giving her some oxycodone). Unfortunately she tensed right back up when we brought her back downstairs. She was better with less interaction. I tried picking her up and holding her for a bit but that just set her back off again. She's also been holding her pees all day today and tonight was no exception. I was again unable to get her to go. She's just so tense, there's no way she's going to be able to pee when she's crunched up in a ball! Ugh. Praying maybe she can finally get some much needed sleep tonight. She's asleep right now with the help of clonidine. Hoping she stays that way...

Monday, January 30, 2017

Hormones strike again

Reagan woke up kooky but in a good mood. Very vocal and smiley, but just a little "off". At about 9:45am she made a loud vocalization and then turned her head to the left with her eyes fixed. It only lasted about 20sec, but it's still too long in my book. It's been exactly a month since we last saw one of these seizure-like episodes. Just another example as to why we think this is all hormone related. Ugh. Stupid hormones. She recovered quickly though and was great for speech only moments later working on using the eyegaze and PODD. The rest of the afternoon she was pretty tense in her body so her nurse worked on stretching her a lot. This afternoon her teacher came to work with her and she tolerated that well. She also started holding her pees again (guess that goes with the increased tone). Ugh. I know, not again! She only went three times all day today. Not good. This girl.

Sunday, January 29, 2017

Rough night but good day

Reagan has had another good day today...after a bit of a rough night. She woke back up around 2am and was escalating for Daddy. I eventually got up and gave her some oxycodone (after Mike came and physically woke me up...I was OUT)! She fell back asleep til 6am. At 6, she was awake and raring to go. Super vocal. I moved her to her chair and turned cartoons on for her and I went back to bed for a few more minutes! She's been a little less vocal today, but still super crunchy/gassy (and grinding her teeth). This afternoon I noticed her tummy was extremely hard and distended. Despite being given an enema, she was yet to go. Finally I helped her and hit the poo/gas jackpot! Poor thing! No wonder she's been so vocal! Hopefully she feels a little better now that she's got that out! We decided to go for a walk to air the place out! Ryan riding his bike, Reagan being pushed by her nurse, Grandma walking her dog, we were quite the scene moving down the sidewalks! It was a beautiful day and nice to get out for a bit and enjoy it! Mike went fishing today and caught lots of fish (dinner)! Tonight Reagan got in a lot of Grandma time! Such a sweet snuggly girl!








Saturday, January 28, 2017

Crunchy and vocal

Reagan had a good day today...she's been a little kooky but good. Ryan had a birthday party this morning, his first time at Chuck-e-cheese. Needless to say, he LOVED it! Reagan hung out with her nurse this morning and then mommy and Ryan all afternoon! She's been super crunchy (hands in her mouth or hair at all times). She's also been very vocal and having tons of gas! She had one little freak out with her nurse this morning but calmed down quickly after getting picked up. She just really wants to be the center of attention today! Sweet girl! We spent the afternoon decorating the Valentine's Day tree and watching "The Secret Life of Pets". Lots of fun. Tonight she was not falling asleep so I had to give her clonidine and then she finally dozed off in my arms. She woke up the second Daddy carried her upstairs...it's late so I'm really hoping she'll go back to sleep without too much of a fight!










Friday, January 27, 2017

Serious but still sweet

Reagan slept well last night and woke up around 8:20am this morning. She was serious but calm. She dozed back off around 11:20 and slept until her PT woke her up! Her PT came at 11am and we thought it might be a good time to get in some good relaxed stretching while she was asleep, but she woke up within 5min! She tolerated the stretching well and was back asleep by noon. Her nurse was a bit concerned because she was a bit pale and flush in her cheeks (and she has those crusty peely lips), but I think maybe she's just fighting off a bad day. She didn't pee on her own all day so finally around 2:30pm when she woke back up, her nurse helped her to go. She was also due for a poo so with the help of an enema and mommy, she took care of business. Then we squeezed in a much needed bath! After her bath she relaxed and even dozed off for a bit. She woke back up in a good mood and even gave me some smiles tonight! Hoping for a good weekend!!

Thursday, January 26, 2017

Sleeping beauty

Reagan has slept pretty much the entire day today! She spent all morning in bed snoozing away and her nurse finally moved her this afternoon to change out her bedding. She only woke for a few minutes or so and then dozed right back off to sleep. This afternoon/tonight she's woken up a few times and been so quiet and so still that she eventually just dozed right back off to sleep. Oh my girl. She must really have needed that sleep. It's funny because she hasn't been up or not sleeping well in the days leading up to today, as is the case many times when she has a sleepy day. Her nurse was just commenting yesterday how we haven't seen a sleepy day in a while! And then here it is! Sleep well my little sleeping beauty!

Wednesday, January 25, 2017

Laughy girl

Reagan had a laughy sort of day today. Both her and her brother were up and raring to go this morning. She's been super spunky today but still very low tone. Hands in mouth but very relaxed hands and body. She only had one therapy today, speech this morning and while she was compliant, the kooky laughs did provide a bit of a challenge! Silly girl. We went for a walk today after speech. It was a beautiful day for a walk and Reagan was too cool for school (see pics below)! It was a little cool/windy but still really nice!  Reagan's actually been super laid back all day today although she the one thing she didn't seem to like was us talking around her. She wanted to be the center of attention...as she should be! Tonight she continued to be goofy but once again, for the third night in a row, she snuggled up and dozed off in my arms shortly after I picked her up! Oh how I love snuggling with my girl! Hoping she sleeps well and wakes up in a good mood again tomorrow!



Tuesday, January 24, 2017

Low tone, but still a sweet girl

Reagan has had a good day again today. She's been calm and sweet all day. Low tone, which is good but also has a tendency to make her spitty/chokey and even a little burpy. Not at all crunchy but still putting her hands in her mouth (contributing to more choking)! She was talky, with some occasional kooky vocalizations with painful gas, but otherwise pretty easy going. She had PT at noon today and worked on some sit to stand before moving to her stander, where the DME lady made some adjustments to get everything back in the correct alignment. She looked great. She stood in her stander for 40min or so and then it was time for OT. Her therapist worked with her for a while seated in her stander and then they later got down onto the ground to do some floor work. Such a busy afternoon. She was a rock star. She was calm and content all day...until we gave her a bath. She never lost it, but she was getting very agitated. Not sure what exactly it was, but she was fine after we took her out. Tonight she's been sweet and calm...but still pretty spitty. I held her and she dozed off in my lap again tonight. Such a sweetie!




Monday, January 23, 2017

Sweet girl

Reagan slept well last night, waking up very calm and content again this morning. She had a great session with speech this morning. Really paying attention and answering questions with a head knod. Still working on PODD. We finally got it added to her eyegaze computer, so that's going to take a lot of practice figuring all of that out. She seems to be a little more into her hands today, but still pretty laid back. Lots of vocalizations but calm vocalizations like she's talking about something. Super sweet. She had school this afternoon and did well with that too. Her teacher said she was a little sensitive in her eyes (kept squinting), so she tried to work on things that wouldn't bother her eyes. She did well regardless. She's been sweet and cuddly tonight falling asleep in my arms! Sweet girl.

Puppy kisses! 




Sunday, January 22, 2017

Sweet, calm girl

Reagan had a pretty good day today. This morning I ran a half marathon (yes, that's two weekends in a row of a marathon/half marathon) so her nurse was here with her while I was gone. She slept in til about 9am and woke up a little serious but calm. When I got home she was awake but quiet. Didn't seem super impressed by my spinny medal (I thought it was pretty cool). It was a laid back sort of Sunday for my girl. She was super precious and calm. Body very relaxed with only the occasional hand in the mouth. The only time she seemed to get a little riled up was during bath time. Not sure what that was about but she quickly settled down once I finished washing her hair and got her out of the tub. Tonight was a low key night. She was laying on the floor very still, looking super precious, and I was waiting for the moment I could scoop her up and hold her (after getting her brother to bed)...and then she fell asleep. I let her be, seeing as how peaceful she was, but I really wanted to cuddle that cuteness! Hoping for another good day for my girl tomorrow.



Saturday, January 21, 2017

Sleepy day

Reagan had a sleepy day today. She slept in not waking up until around 2-3pm today. She woke up pretty serious, but calm. Very crunchy, especially when on the floor. She did start getting agitated at one point but would calm the second I picked her up. After some very stinky gas, I decided it was time to help her poo. She FINALLY pooed...today was Day 7! Whew! That had to be hurting her tummy! She did seem better afterward although she was still plagued by some tummy pains here and there. She really settled down after I picked her up and dozed off in my arms. Mike eventually moved her back up to bed where she's been sleeping ever since. Hoping for an easy going day tomorrow while I'm running my half marathon! 

Friday, January 20, 2017

SO tense

Reagan slept well last night and woke up this morning sweet and crunchy. And no pee. I tried helping her go but had no luck. Her nurse had more luck a little later. Thank goodness. She was more serious today. Still SO tense in her body. So tense she was trembling. She's also on Day 6 of no poo. Not good. It makes sense that if she's holding pee, she's gonna hold poo, but a week is a long time to go. We tried an enema today and still nothing. I tried to help her and nothing. Ugh. She's dozed off an on today and just been a little zoned out and off. Very still tonight. I was able to get some sweet smiles out of her and that made me very happy. She did fall asleep after I helped her pee. Really hoping she can relax soon. This girl needs a break!

First time EVER Ryan sat in the chair by himself for a haircut! And was good! 

Usually I have to hold onto him as he kicks and screams! This was awesome! 

Thursday, January 19, 2017

Need to pee

Reagan has been even more tense in her body today. Still smiley, but lots of kicking around and oh so crunchy. Still holding her pees but now taking it to the extreme! Her last pee of the night last night was around 11pm and then this morning I tried and tried and TRIED but I wasn't able to get her to go til right around noon. At this point I had already put a call in to her doctor to see what his thoughts were (and I was still waiting on a call back). So when she finally went, I had a sterile cup handy and collected a sample just in case they wanted to check it. When they called back they didn't seem super concerned but since I had collected the sample, they wanted me to go ahead and bring it in for culture. So we'll see. I was able to get her to pee again at 5:30pm and then that was it. Two pees all day long. I tried multiple times tonight and got nothing. She had a good day nonetheless. She did well for PT this morning, working on sit to stand (the extension was working in her favor for standing) and then she even tolerated the stander well afterward (even though one of the knee supports seems to have been knocked out of place). OT didn't go as smoothly. The tense body was not working in her favor and her poor therapist had quite the workout trying to manipulate her. At least she's been in good spirits all day. Super sweet and smiley. Really hoping her body gives her a break soon.


Wednesday, January 18, 2017

Darling girl

Reagan slept well last night and woke up sweet and smiley this morning. She's still very tense in her body, very crunchy and holding her pees all day, but she's been a lot more laid back and calm today. She had speech this morning and while cooperative, it was hard to work with her being so crunchy. She did tell her therapist hi when she walked in the door! She's been pretty precious today. I wasn't sure how she'd do with school, being so crunchy, but apparently she had a great session. She did get a little excited/vocal when her teacher first got here, but she calmed down and was very attentive. Tonight she's been an absolute doll. Very quiet and smiley...even holding her hands in her lap. Adorable girl.

Tuesday, January 17, 2017

A wee bit kooky

Reagan had a bit of a kooky day today. She woke me up around 5:45am this morning making noises, so I went to check on her, she was still dry so I tucked her back into bed and she obviously went back to sleep. She woke back up at a normal time and was in a very vocal but good mood. She's been super vocal all day, at times she sounds like she might actually lose it but she's held it together for the most part. She did OK for OT and then did freak out a little for her PT but we think that was just the ipad. This afternoon she had both vision therapy and school and did well with that. She was increasingly vocal tonight but it did seem to be associated with gas. Hoping she can get some sleep tonight and wake up tomorrow a little more calm!

Monday, January 16, 2017

Sleepy, sweet, but tense

Reagan was sleepy/tense today, but still sweet. She slept in this morning til around 11am and woke up having a huge flood of a diaper! So much for the new bedding Grandma just put on her bed last night! Well actually we just washed it all and put it right back on! Reagan has been pretty vocal and crunchy when awake. Very high tone. Hands shoved down her throat, knees up to her chest. She eventually dozed back off around 1:30pm or so and then slept until 5:30pm! She woke back up vocal and kooky and we immediately seized the opportunity to give her a much needed bath. She hopped in the tub with Grandma and looked more relaxed than she has all day! She was wide awake after her bath and spent the rest of the night downstairs. She got a little riled up in her chair so I moved her to the floor where she seemed a little more comfortable. She did have some little outbursts here and there, usually when there was music on tv, but sometimes just for attention I think. She did have some gas here and there, so that could've been bothering her as well. Not sure what direction she's headed right now. Really hoping for good days but not super confident in what to expect.


Grandma bought Ryan a giant gummy snake today at the candy store while I got my after marathon massage! 

Sunday, January 15, 2017

Marathon Day

Today was the day of my first marathon! It was a looooong 26.2 miles (well actually 26.96), but I did it and I dragged my best friend across the finish line with me! I ran the Chevron Houston Marathon and finished it in 5hrs 54min. That's a LONG time to run! My friend wanted to quit many times, but I kept going back for her and eventually just insisted that we hold hands for the last 5 miles to insure she wouldn't give up! I had some knee pain that hit me right around 6miles in but thankfully it faded away and I was able to continue relatively unscathed. After I finished I cleaned up and we had a quick late lunch and drove back to Austin. Both kids were well behaved today. Reagan was pretty sleepy/groggy all day. Crunched over and looking down a lot. Grinding her teeth. Just seemed very out of it. She did give mommy a few smiles when I got home though, so I was super happy about that. Ryan was happy to see us as well and we got lots of kisses and hugs before he headed off to bed. Everybody was quite exhausted and we all crawled into bed early tonight. Hoping I don't wake up too sore and miss Reagan wakes up happy!





Saturday, January 14, 2017

Grandma in charge

Reagan and Ryan were both up and at em early this morning. So much for sleeping in! Grandma drove in this morning to take over kid duty so Mike and I could head to Houston for my marathon tomorrow. Reagan has both a day nurse and a night nurse (until 11pm anyway) working today to help out. Reagan has been in a great mood today, very responsive and alert, wide eyed and content. Grandma was thrilled to see her doing so well. Vocalizing and laughing in response to interaction. Sweet girl. She's got her hand in her mouth a lot again today, which is causing quite the red nose. Tonight went very smoothly as well. She got increasingly quiet and still as the night went on, but was not dozing off on her own. The nurse gave her clonidine around 10:15pm and transferred her to bed and she was asleep by 10:45pm. Hoping she stays asleep tonight for Grandma and everyone can get some sleep tonight!
The nurse texted me this! Made me miss my girl even more! 

Friday, January 13, 2017

Alert and vocal

Reagan slept well but was awake and ready to go by the time her nurse got here this morning. She's been very vocal and alert all day today. Only one therapy today, a make up session of PT, but she did well for it. Afterward her PT helped get her into her stander, and she did get a little upset when raised up to the highest position, but calmed quickly after being lowered a little. Not much else going on today. Took it easy, played with her ipad, watched some tv. Tonight I've been trying to pack for our trip to Houston this weekend. My first marathon is Sunday and I'm starting to get a little nervous. The weather is predicted to be much hotter than would be expected for this time of year and possible rain/super humid. Grandma is coming in to stay with the kiddos and we've got nursing for Reagan Sat/Sun. Praying everyone cooperates!

Thursday, January 12, 2017

Two poo day

Reagan was awake, dressed, and alert by the time her nurse got here today! She's been in a good mood for the most part, vocalizing and smiling when you interact with her. She did well with PT and tolerated being in her stander...until we decided to take her out of it! We heard some gas and suspected a poo and she had already been in there 30min or so, but as we started lowering it, she started getting really upset. I think it was more the changing of positions that caused her some discomfort...the next thing we knew she was in tears! She was easily consoled once out and in mommy's lap. We changed her diaper, she did have a stinky diaper (thank you gravity), and then left her on the floor for a bit. Her OT came 30min later and she tolerated that well and also had another poo on her own! Two poos in one day...and on her own without any help! That is unusual. She was good the rest of the day. Very gassy. Grinding her teeth a little tonight, but still calm. Dozed off on the floor listening to Daddy's snoring (I nearly fell asleep myself)! Good night!

Wednesday, January 11, 2017

Calm and content

Reagan slept in til 9:30am today and woke up with a very wet diaper!! Woohoo! Finally peeing on her own. Whew! She had speech this morning and tolerated it well. She's been very still and not as crunchy. Very calm and content. We decided that today might be a good day for xrays! We loaded up and picked Ryan up from school and headed over to the imaging center. Ryan had OT/PT next door so we dropped him off, while we took Reagan for her imaging. She was very patient, which is good because they left us sitting in the completely deserted waiting room for over 45min! She continued to be super patient with us as they were having multiple issues getting the x-ray machine to work. We had her sitting up so tall in a chair nearly all by herself, but she grew pretty tired after all of the waiting. Hoping we got decent images. It took what felt like forever! I was planning on running Reagan and her nurse home and then coming back for Ryan but we were short on time. Instead we took her nurse to pick up some lunch and then we came back for Ryan. He was good albeit a little tired. We came back home and Reagan's teacher met us at the house for a late session of school. Reagan did well. All in all she's had a great, laid back day. She's been a bit burpy...I'm not sure what that's about. Hoping for another good day for my sweet girl tomorrow!




Dad went fishing today and limited out (but also tipped his kayak and lost all of his rods/reels)!
Someone is eating fish for dinner...