Friday, September 30, 2016

Up all night but OK day

Sleep last night was brutal. Reagan didn't sleep AT ALL. The medicine didn't help at all. She was either moaning, crying, or fussing all night. I got up over and over again with her, but nothing I did seemed to help soothe her. I have no clue if this is just a "bad day" or tummy pains or something in between. She was still awake and moany when I went to run at 6 but by the time I got back she was asleep. And then she slept (of course, now that I was up). And slept. We had another new nurse orienting this morning and she slept the entire time she was here. She did eventually wake up a little after 11am and she was a bit serious...no smiles but no fussing either. Definitely better than I expected. She actually had a pretty good day the rest of the day. No therapies, but she seemed pretty stable. Wasn't a huge fan of me talking to the nurse, but she seemed to do fine with the nurse talking to her. We did get in a bath and she did fine with that. Tonight she was a bit tense but OK. Her temp regulation seems a bit off. Her feet are red and ice cold. She was holding her pees again and I had to eventually help her go before bed. Mike and I were so tired tonight that we were both dozing off and Reagan was still wide awake but content. Finally Mike took her up to bed after midnight but she immediately started getting agitated and vocal. I gave her clonidine and she dozed right off but woke up fussing the second Mike tried to get up! She loves snuggling with her Daddy. He had to lay back down with her to get her to fall back to sleep. I'm going to bed now and it's after 1am...sooooo tired.

Thursday, September 29, 2016

Good day but tummy pains tonight

Reagan slept well and woke up right around 7:30am. She was in a good mood today. Laughing when you talk to her. She had one little scare with her tube today and we thought maybe it was broken again (because the extension was just spinning and then popped out on it's own), but as it turns out, it was just the extension that was broken. She had PT, OT, and school today. Her teacher said her motor skills were spot on today. She was good all day long...until tonight! She started showing some sensitivities and we thought maybe she was just annoyed with the tv or her brother. But she was also having lots of gas (the stinky kind that means a poo is in there). Eventually I helped her go, thinking maybe that would give her some relief, but she was still pretty tense/moany. Eventually she ended up in full blown tears and you could just tell she was miserable. She'd calm down for a bit, and then freak out again. I tried giving her pain meds, but nothing seemed to help. Getting her to bed tonight was a no go as well. She was miserable and laying down she seemed worse. I gave her clonidine and tried to get her comfortable in her chair, but I'm thinking the likelyhood of us sleeping tonight is next to none. Praying my girl can get some relief from whatever is bothering her.
Reagan and her nurse playing with snap chat today! 😂

Wednesday, September 28, 2016

Awake and good

Reagan had a good day today. She woke up at a normal time and had a nice big wet diaper on her own (without leaking...double bonus)! She has been vocal and sweet today. Not at all sensitive. We were orienting a new nurse today and we definitely would've know if she was sensitive to talking (it didn't seem to bother her at all). She had a busy day of therapy with speech, then PT, and then OT in the afternoon. She did well with everything. Tons of wet diapers today! I guess she's trying to make up for yesterday!

Tuesday, September 27, 2016

Sooo sleepy!

Reagan slept well last night, although we found her laying completely on top of her covers this morning. We also found her laying in formula as her extension popped out and was feeding the bed. Ugh. Everything was soaked. She was still out cold so we moved her to the floor and changed her and got her all cleaned up. She never woke. We transferred her to her therapy room so we could completely strip her bed and she slept in there the rest of the day. Never woke up. Well she opened her eyes right around midnight when I was changing her diaper but that was only for a few minutes and then she was back asleep. She held her pee all day today and only went three times. Two times her nurse had to use the hot water trick and the last time I was about to use the hot water when I realized she had just gone! It was quite the sleepy day for my girl today. Hoping for a happy/awake girl tomorrow!

Monday, September 26, 2016

A little sensitive and prayers for Abigail

Reagan woke up this morning still sweet and maybe a little sensitive. We saw it a little more with us talking or music on tv. She had speech this morning and did well with that. Then this afternoon she had OT and got a lot of stretching done, which was great because she has been a little crunchy. This afternoon she had school/speech and did a great job with that as well until the last 10min or so when she had a little crying meltdown. We removed her AFOs and I picked her up and she calmed down pretty quickly. We're thinking maybe gas pains?? Maybe the teacher and speech therapist were talking and she didn't like it? Not really sure. After school we helped her poo and gave her a much needed bath and then she seemed more relaxed. She's been good the rest of the night. I did notice tonight she was holding her pee so I had to help her go just before bed. Thankfully she went no problem. I would like to ask you to pray for Reagan's little friend Abigail. Abigail lives in Washington and has mitochondrial disease and lots of similarities to Reagan. Right now she's in the hospital with a bacterial infection that has caused her movement disorder (chorea like Reagan has) to go out of control! Please pray for this sweet girl and that she's able to beat this infection and finally get some much needed rest. I know how heartbreaking it is to watch your child suffer like that! :(

Sunday, September 25, 2016

Picture no go

Reagan slept well last night and woke up a little serious this morning, but really warmed up as the day went on. She was very still (no hands in the mouth or hair) and smiley and we were thinking it would be the perfect day for pictures (she even was having a great hair day), but the weather had other plans. Grandma got here in the morning and Reagan really perked up for her. Grandma bought her this wonderful light up jelly fish tank that is so realistic and soothing to watch! We all love it! Ryan was mesmerized by it and so was Reagan! We were really holding out hope all day that the photoshoot might actually happen, but around 4-4:30 it started looking really dark outside. By 5pm it was pouring (we were supposed to do the shoot at 6)! So we've rescheduled for two weeks from now and we'll just hope that everything works out this time. Reagan was a little sensitive today in her eyes. It was hard to tell if it was just a sensitivity or something more neurologic. She kept having long blinks. Her hands were a little twitchy too, so I do think it was a little neurologic in nature. Not a fan. Hoping she can just sleep it off. Praying for some good solid sleep for my sweet girl.




Saturday, September 24, 2016

So precious

Reagan had a good day today. We all just had an easy going lazy day at home. Mike went to play golf with Grandpa this morning and Reagan, Ryan, and I all just hung out watching cartoons! Lots of football in the afternoon once Mike got home! Reagan has been super smiley and precious today. We're hoping to do a photoshoot tomorrow afternoon but there is some nasty weather in the forecast right now, so who knows what will happen. Oh to have such a sweet smiley girl tomorrow too! Precious girl.

Friday, September 23, 2016

Therapy woes

My girl slept well last night. She did wake around 4am and I went in and covered her back up and she fell back to sleep. She's been super smiley and vocal again today. She only had one therapy, PT, but she did well with it. We're currently trying to come up with an at home therapy plan for Reagan. We're going to have all new people working with her (since her nurse of 3yrs is leaving to have her baby) and we really want to come up with a daily regimen that integrates therapy into each day. Another concern is that Medicaid has been cutting everyone's hours and right now we are in a battle to get her back up to 2x a week (they reduced her hours to 1x a week even though she VERY clearly fits the criteria for 2x a week). They also just reduced her speech from 3x a week to 2x a week! She used to get ALL therapy 3x a week! It's despicable what the state of Texas is doing right now to people with disabilities. Don't even get me started. It's a constant battle and I've been on the phone with people from TMHP, Medicaid, and my senator's office every day for the last couple weeks. SO frustrating. Thank God for this precious, smiley girl...I'll never stop fighting for her! Today after school I took Ryan to get a much needed haircut. He's still not tolerating them. He was miserable and trying to squirm out of my arms the entire time. Thankfully he was less vocal than usual (he still was upset but not screaming/crying the entire time) and we were the only people there. It's done. Ugh. So traumatic. At least he can see out of his eyes again!!

Thursday, September 22, 2016

Still super vocal/kooky

Today was another kooky vocal day. Reagan woke me up around 5am this morning, vocalizing and completely uncovered in her bed. I changed her and covered her back up and she fell back asleep. She's been sweet and vocal again today. Lots of high pitched scream/squeals but still happy. She had PT, OT, and school and did well with everything. She's been super crunchy with lots of increased tone, but she was manageable. It was a jam packed day, so I'm thankful she tolerated everything so well. She really has been resilient. Hoping these good days continue as Grandma is coming this weekend and really hoping to see a smiley girl!




So spunky! Her brother picked out a little mermaid sticker to give to her! (How did he know?) 

Wednesday, September 21, 2016

Kooky/vocal

Reagan was a little tough to get to sleep last night but she eventually fell asleep and slept well. She woke up pretty kooky/vocal this morning and has been that way all day today. She had speech this morning and then a make up session of OT this afternoon and she did really well with both. She's been super vocal today but also super cute! Tonight she fell asleep on my lap but woke back up when Mike carried her up to bed. He tried laying down with her but that just made her super crazy vocal. She was so loud, we think she woke her brother up, because then he started crying! Poor thing, he was all sweaty and coughing. The funny thing is the second Mike got up to go check on Ryan, Reagan immediately fell fast asleep! They are all in bed at the moment, so fingers crossed they stay that way!

Ryan and I went to the park after school today to cheer on his cousin at her track meet! She placed third out of a ton of kids! Awesome job!

Tuesday, September 20, 2016

A sleepy sort of day

Reagan woke up this morning a little tense. We weren't really sure what to think and when she dozed back off, we were hesitant to wake her. We ended up canceling PT and not 30min later she was awake and smiling!!! Silly girl! She was then awake for a while and dozed back off before OT got here! We rescheduled for tomorrow and let her sleep. This girl!! She ended up sleeping most of the afternoon, waking up just before the nurse left. Tonight she's been vocal but sweet. Hopefully she still sleeps tonight after all of the sleep she's gotten today!





Monday, September 19, 2016

Sweet girl

Reagan had a good day today. She was a little vocal but sweet. Super kicky. She had speech this morning and school/vision this afternoon. She was very attentive and after speech she even stayed in her chair for a while longer and played with her switch disco ball! Between speech and school she worked on sitting with her nurse. During school/vision she really wanted her hands in her mouth so they used her arm restraint so she could focus a little better. She worked on tracking, using her switch, and yes/no buttons. It was a busy day and she did really well with everything. Sweet girl.

Sunday, September 18, 2016

Minis & Friends

Reagan slept in a little this morning and woke up a little serious, but OK. She was wide-eyed and a little sensitive at first, but she seemed like she might still be up for our visit with the mini-horses. A couple of months ago I stumbled across the Facebook page of Minis & Friends and inquired with them to see if they might be able to participate in our Energy for Life Walkathon coming up in November. Unfortunately they don't have any horse owners in North Austin at the moment, but they were more than willing to have us come out the the ranch in South Austin so Reagan and Ryan could have their own personal session with the horses! It was really sweet of them to offer, so we of course took them up on it! It was a warm day but we went early and were there by 10:30am. The horses were adorable! There were three of them. These horses live the good life! They are just the prettiest little things and so gentle and so calm. They all came up to Reagan and just stood there by her side not wanting to leave. A couple were a little nibbly with her fingers (made me nervous), but they were so gentle. Ryan led them around and fed them hay. He was loving it. And before we left both kids got to hold a tiny silken windhound puppy that the stable owner is the one who developed the breed. A super calm puppy. Perfect for the kiddos to check out. All in all it was a wonderful trip! We are already planning to visit them again in the fall when the temperature is a little more hospitable. They told us during the winter, the palominos actually turn completely white and get super fluffy coats! Can't wait to see that! The rest of the day we all just took it easy. Reagan was still pretty serious but she loosened up a little tonight and seemed a little less stressed. Hoping for a good nights sleep for everyone tonight.









Saturday, September 17, 2016

PODD

Ahhhh, finally my girl slept well last night. She dozed off on her own last night and then had a solid night's sleep. She was vocalizing this morning around 7am, but I think she was just trying to let me know that she was laying in wetness! I changed her and moved her to her chair and we were up. Ryan slept in a bit not waking up until around 8:45am. So last night we realized one of our A/Cs is not working. Thankfully the larger unit was sufficiently cooling both floors but today it was beginning to get a little warm. Mike was able to go online and find the parts he thought needed replacing and was able to buy them from a repairman and replace them himself (saving us hundreds). It is SO nice having a handy husband. So now we are cool and everything is running well again. This morning we did have Reagan's evaluation with the AAC lady. She watched Reagan working on her eye gaze and then gave us suggestions as to which direction she thinks we should go with her. She's very pro PODD and thinks Reagan will do very well with it. It's funny because she has been following a family we know well (The Owen's-Gavin's parents) and their journey on their We speak PODD facebook page! It's going to be a lot of work and a whole new way of doing things, but it's definitely worth a try to give Reagan a voice! Reagan did well with everything this morning and she's very encouraged that she will succeed with PODD. We would start off doing PODD with a book (low tech) and eventually move it into her eyegaze device (high tech). It should be an interesting journey! The rest of the day we all just took it easy. Lots of football. Reagan rolling around on the floor. Ryan playing angry birds on the ipad. Ryan and I did make a run to Home Depot for A/C filters. Ryan was terrified of the Halloween talking characters, but he kept wanting to go back. Definitely a love hate relationship! That's about it for our Saturday!



Friday, September 16, 2016

Not much sleep

Reagan was up a lot last night. Very vocal. Making it very hard for us to sleep. Eventually I moved her to her chair around 4am, but I don't think she ever went back to sleep. I did though and didn't wake up til 9:15! Poor Ryan, just stays in bed until I come to get him (Reagan's nurse had been here since before 8)! Of course then we were really scrambling to get ready and get him to school by 9:45! I also had a meet and greet with a new potential nurse at 10, so there was a lot of yawning during that interview. This morning I really felt crummy. My head feels like it might possibly explode. Definitely think I'm fighting a sinus infection. I decided to finally go in to the doctor myself this afternoon and got a prescription for antibiotics (still not sure if I want to take them). Grandpa picked up Ryan from school and they went swimming but were back out before I even got home. Reagan had a laid back day today. No therapies, so she just hung out and took it easy. She didn't get much sleep last night so it was probably good that she didn't have a busy day today. We've got a busy weekend though. Tomorrow we're meeting with that AAC lady and Sunday we're supposed to go see some mini therapy horses! Hoping for a great weekend for my girl!

Thursday, September 15, 2016

Kooky and coughy

Reagan was a little restless last night. Definitely fighting sleep and went a little crazy from the clonidine but did eventually fall asleep. She woke up this morning still very vocal but good. She's had a busy day today. First PT, then OT, and then school! She did great with everything. Her teacher said she was really doing awesome with her motor control today. She's still coughing a lot and a bit kooky/on edge, but she's been good. Ryan had his check up after school and his ears look great! Thank goodness. He's a trooper though. Just keeps going into that doctors office no problem, despite the trauma! Hoping everyone continues to improve. No more sickies!

Wednesday, September 14, 2016

Coughy

Reagan had a good day today but she's been pretty coughy. She slept in a little this morning so her speech therapist and I spent time completing an assessment for an AAC (Augmentative and Alternative Communication) evaluation she's going to have this weekend. The rep from Tobii recommended a lady that works for the school system who is very experienced in AAC and specifically has a lot of experience using the Tobii eyegaze devices. We (of course) have to pay out of pocket for her to come, but it's worth it to get some real advice on how to get the most out of this device/Reagan! Not much else going on today. No more therapies. Reagan has been very coughy...this short little back of the throat sort of cough that she does over and over and over again (almost sounds like a smoker)! We definitely think she's still got some drainage going on (probably giving her a sore throat and making her feel like she needs to cough), although not nearly as much drainage as we saw yesterday! She's been good today but a little vocal, at times sounding a little stressed, but OK. Ryan was supposed to have his follow up with the pediatrician today, but he had school and then two therapies after school, so we are going to go in tomorrow to get him checked out! Praying for no more shots! He actually sounds much improved so I'm hopeful he's all cleared up! Now, if we could just get this girl to stop coughing!

No school today so Ryan and I went to a local science museum and planetarium! We're not in Houston anymore...

Tuesday, September 13, 2016

Genetics trip to Houston

Everyone slept well again last night and both kids even slept in a bit this morning. We had to wake them both up, Ryan to get ready to go to speech with Grandma and Reagan to get on the road to Houston. Reagan was in a great mood and was a doll the whole drive to Houston. We ended up getting there a few minutes late, and before we knew it we were 30min late because the parking garages were all full. By the time we got to the office, everyone was waiting on us and the Dr. rushed in immediately and started talking (he was in a hurry to go teach a class). We had a bit of a rushed appt with the study doctor, but then the geneticist who is studying Reagan's NACC1 mutation came in and we spoke with him for a while. We gave our consent to join another study that will be looking to see what genes are turned off/on in Reagan that are not turned off/on in us which may help them to find the link between this mutation and Reagan's mitochondrial issues. In his words, it's a fishing expedition, but hopefully they'll actually find something! Mike and I both gave two tubes of our blood for that study and Reagan added two more tubes to her already large assortment of tubes to draw. We did have one little hiccup that took some time on the phone to finally straighten out, but we will also finally get her chromosomal microarray run again (the only one she's ever had done was when she was 6 months old). My girl had SO much blood that needed to be drawn so thank goodness I suggested we use a warming pack on her arm first! That really worked and her blood was flowing faster than ever and we easily got all of the tubes filled. Whew! At this point it was almost 2:30pm! We left and stopped at nearby Goode Company BBQ for lunch and then got stuck in a rainstorm and were unable to leave. Finally around 3:30pm we were back on the road but just in time for the rain and Houston traffic! It was a nightmare! We didn't get out of Houston until 5pm! What a nightmare! Thankfully my girl was a perfect angel and dozed part of the way. We got home right around 7:30pm. Grandpa was definitely ready to be relieved from Ryan duty! We eventually got everyone to bed and then close to midnight we crashed as well.



Monday, September 12, 2016

Super busy day

It was a busy day today, so thankfully both kiddos slept well and woke up in good moods. Reagan still had quite a bit of tone in her legs but was in a good mood, so we decided to go ahead and move forward with her AFO casting appt this morning. She was a rock star and we got her all casted up no problem so we should have some new, hopefully better tolerated AFOs in a couple of weeks! Ryan went to school and then had lunch with Grandma since she was finally back in town again and it was Grandparents day. Reagan got home and then had PT, OT, AND school! She did well with everything, although she did fall asleep about half way through school. Poor thing, she had a busy day! Ryan had to go back to the doctor after school for a second round of antibiotic shots. This time was even worse and he fought like a maniac and then afterward was so defeated and sad he just laid there on the table and wouldn't move. SO sad! At his request we then took him to the Halloween store where he limped into the store and then picked out a Batman costume for himself (and we found a super cute bat girl costume for his sister)! Then we headed straight over to OT, and then finally back home. Whew! Busy day! Tomorrow is going to be even busier as we are driving to Houston for Reagan's EPI-743 study follow up and genetics appt. Praying for a good trip!



Sunday, September 11, 2016

Sleepy but good

Last night was SO much better! Thank God (seriously)! Ryan woke up at 5am (when I got up to use the bathroom) and coughed from 5-6am and then fell back to sleep. I snuck out at 6 to run and when I got back I still found two sleeping kids. When Ryan woke up, I could immediately tell he was drastically improved. Still coughing but nothing like yesterday. Reagan slept all night and then just kept sleeping (no fever today either)! She slept the whole day through (even through diaper changes)! Around 7pm or so her pump started beeping and I went in to check on it and realized that the entire room smelled of formula. Her extension had popped out and her pump was "feeding the bed"! Ugh. No clue how long this had been going on but a major clean up was in order. In the process of removing her wet clothes and wiping her down and putting on new clothes...she woke up! Thankfully she was in a good mood. She was awake for the rest of the night until bed time, eventually falling back to sleep on her own. We've got a busy day planned for tomorrow, so we're hoping for a happy, awake girl!

Saturday, September 10, 2016

Sickies

Last night was a nightmare. Reagan was awake all night, super tense and kicking nonstop. And Ryan woke back up around midnight coughing nonstop! It was awful! He was coughing so much he eventually made himself throw up! I was afraid we might have to take him in he was so bad. Finally around 2:30am Mike was able to lay down with him and he fell back to sleep. He was back up coughing by 5am but then fell back asleep and slept a bit longer. It was a rough night. ROUGH! Of course we have no nurse on Saturdays, so that made it extra tough. And to top it all off...my girl had a fever this morning! Another fever! Wth?!?! I was on the phone with the pediatrician at 8am and scheduled an appt for both kiddos at 11. Thankfully our pediatrician was the dr on call this weekend. Mike and I took two separate cars (Ryan was still coughing so much we didn't want Reagan sitting directly beside him) and headed to the appt. Ryan has an ear infection (in the ear that no longer has a tube), tonsils covered in pus (but not super red), lots of sinus drainage, and this horrendous cough (which could be a resp virus or allergies/sinus drainage). He needed an antibiotic so instead of trying to force him to take something by mouth for two weeks (which he wouldn't take), we opted for the shot. He fought like a tiger, but at least it's done (for now, he still has to go back in on Monday for another). Reagan sounded clear in her lungs, just a little gunky in her throat (all of a sudden she has a big cough today), definitely congested, but ears and throat look good...but she still has a fever. I even collected a urine sample just to rule out a UTI. We're not entirely sure what is causing her recurring fevers, but her doctor wants her on an antibiotic as well just in case this is some sort of secondary bacterial infection she's fighting. Thankfully she has no problem taking an antibiotic (thank you tube), so no shots for my girl. Reagan was really great riding in the car (she had been so tense this morning) and we were able to keep her downstairs the rest of the day. She dozed off and on but was still pretty tense. She ended up spiking a high fever again late this afternoon but then finally calmed down and seemed to relax once I gave her a dose of ibuprofen. I'm really hoping this fever is gone for good. PRAYING for some sleep tonight. We are SO exhausted and my poor girl still hasn't slept in days!


Friday, September 9, 2016

Prayers for rest and healing

Reagan woke up last night yelling out around 4am. I got up and moved her to her chair. She was very tense/stressed. I gave her something but it didn't touch her. She was still awake and kicking when I went and came back from my run. Ryan was up in the middle of the night too coughing. He's had a cough since the first week of school, but it's definitely gotten worse this week. Hoping and praying he doesn't share any of his germs with his sister. She's got enough problems right now. I really didn't think she was going to have a good day today. This morning it seemed as if she was on a downward spiral that might end in tears. She ended up having a surprisingly good session of both speech and PT. She did get a little grindy with her teeth during speech, but she was able to give her some tools to help satisfy her urge to grind. Today she was into movement, so PT just went with it and they worked on rolling. She did such a good job, this afternoon she nearly rolled all the way over by herself! She's got a ton of movement and extensor tone today. Her eyes look oh so tired, but her body just never stops! Poor thing. Tonight I tried to give her something to help her relax and it had the exact opposite effect! Within minutes she was in full blown tears that lasted over an hour! Ugh. Between her crying and Ryan sneezing and coughing nonstop tonight, I thought I was going to go crazy! Eventually she settled down but the movement kept going. She's still kicking around and swiping at her face nonstop right now. She keeps stiffening out and arching her back...she's definitely neurologically off. Just really hoping this subsides and she's able to get some sleep tonight. Please keep both kiddos in your prayers tonight as they are both really struggling.

Thursday, September 8, 2016

No rest for the weary

Sleep last night was about the same as the night before. Reagan continues to be very vocal and restless, not sleeping hardly at all. Her temperament has been good, just a little kooky. She seemed tired multiple times today but she never dozed. She had PT & OT and did well with both, considering. She's having tons of chorea. Her little legs are just going nonstop right now. She went all day without any signs of nausea but then tonight she started getting gaggy again. Not quite as bad as last night, but still very noticeable. She did calm down a lot tonight, her movements and her vocalizations decreased. Even though she woke back up when moved to her bed, she did eventually fall back to sleep...in her bed! So we're already doing better than last night! We're hoping maybe tomorrow is a sleepy day and she can finally rest from all of this movement. Please keep it in your prayers that my girl can get some solid rest and wake up feeling much improved!

Wednesday, September 7, 2016

A little off and still not sleeping

Last night was similar to the night before. Reagan was up a lot and very vocal, making it really hard for us to sleep. Thankfully, Ryan seemed to sleep better and had a better day at school today. Reagan had speech this morning, OT, and then school/speech this afternoon and did well with everything. She's still pretty vocal/kooky, but sweet, so we just made it work. She's still putting her hands in her mouth a lot and wiping at her nose. Her poor little nose is SO red and peely. Her nurse was watching a low grade fever all day today. It was hovering between 99-100 all day. Then this afternoon we noticed she was getting pretty sweaty when in her chair. Definitely having some temperature regulation issues. Tonight I put her on the floor to roll around for a bit, to try to let her back air out, and she got a little chokey. I moved her to her chair and I noticed she was making a lot of gaggy faces. I don't remember the last time I saw her gaggy. She even had spit pouring out of her mouth all of a sudden. I have no idea what that was about. I kept her in her chair for the rest of the night (she didn't tolerate me even holding her in an upright position) until Mike took her to bed. Unfortunately, she went from asleep to wide awake and vocalizing the second he laid down with her. So he eventually moved her to her chair and we're just praying she'll get some sleep. It's not looking good...

Tuesday, September 6, 2016

Sweet, sleepless, and vocal!

So sleep wasn't so great for my girl last night. She decided to get a case of the crazies just before bedtime and it made getting her to sleep very difficult. Unfortunately, I think it really interfered with everyone's sleep and we're all running on empty this morning (even Ryan woke up super early and crying this am). Reagan is the only one that seems to be OK with no sleep! She's been super smiley and sweet! Very vocal and crunchy, but sooooo sweet. She had OT today as well as school/vision. She wasn't super into vision, but was doing OK with the teacher before the vision therapist showed up! She did get pretty kooky/vocal a few times today, but she held it together. Ryan had a bit of a rough day at school, so I'm really hoping we can all get a better night's sleep tonight. Come on Miss Reagan! Go to sleep!

Monday, September 5, 2016

Labor day fun

Reagan slept well for the most part. She was up bright and early this morning but still in a great mood. She's been a little more crunchy today and we're seeing a lot more hands in the mouth (and the red nose that follows). We decided to take a long walk to the park this morning (before it got too hot) to log some extra miles for Reagan's marathon and catch Pokemon. It was a nice loooooong walk (3.44 miles) but it did get a little hot toward the end. We were checking out the community garden before heading back when we saw Mike walk up! He had walked the whole way over thinking surely he'd see us along the way headed back! Nope! So then we all headed back home together. That afternoon we relaxed a little (Reagan did a lot of rolling on the floor) and then we took Reagan back out to ride her bike! It's been a while since we've used it. I can hardly wait til it gets a little cooler outside. Our walks, bike rides, runs...everything will be so much nicer! Reagan did have one seizure-like episode tonight (6:40pm) where she burst out laughing all of a sudden and I then noticed her head was turned and fixed to the left. I tried to break her out of it, but it wasn't til about 30sec later that she finally started looking around again. Not sure what that was about. Other than that, she's been great again today. Super sweet and super precious. Love this girl.








Omg...could she be any cuter?!?! Smiling in her sleep! 💗

Sunday, September 4, 2016

Still smiling

Mike went fishing this morning and woke me up around 4am. I looked at Reagan's monitor and saw her moving a little, but she was very quiet and content so I was hopeful she'd fall back asleep. I got up around 7am and both Reagan and Ryan were wide awake. Reagan was still all smiles! SO happy to see that. I had to do my long run this morning, so since Mike was gone fishing, Grandpa came over and watched Ryan til I was done. Boy do I hate running in the daylight. We're only on our first week of marathon training (6 mile long run) and I'm exhausted. We still did a walk today, not super long, but just to keep moving. Reagan was great but my legs sure could use a break! Hoping for another great day tomorrow for my girl!

Saturday, September 3, 2016

Poos and smiles

Reagan slept well last night and woke up this morning with a big wet diaper. She woke up pretty calm and content, but a little sensitive to talking. I took Ryan to Jumpstreet and the farmer's market and Reagan stayed home with Daddy. I gave her all of her meds before leaving except one (her seizure meds). While we were gone she had one little outburst of tears and then had a huge poo that Daddy had the pleasure of cleaning up! In all of the chaos, Daddy forgot to give her the last meds. When I got home I realized they hadn't been given and I gave them (or so I thought). Around 6pm I went to use the pill crusher to give her another med, when I realized her seizure meds were still in it! I really feel like I gave them to her, but maybe I only gave her part of them. Or not at all? I'm still not sure. What was left in the pill crusher didn't look like a full dose, but who knows (where are our nurses when we need them)? It was too late at this point to give it to her, so I just threw that out and gave her her regularly scheduled pm dose tonight. Thankfully she seems no worse for wear. She actually ended up having a really wonderful day today! The two sudden outbursts of tears were definitely a result of tummy pain and both were followed with big poos! Her tummy does seem pretty distended today and probably full of gas, but she has been pretty wonderful, especially this afternoon/tonight. Another realization today. Ryan now knows how to open the childproof lock on the pool fence! We put his swimsuit on him this afternoon because his Aunt Kim was coming to swim with him. Well he ran outside and was playing (or so we thought). Then I peeked outside to check on him and found him IN THE POOL! Thank God he knows how to swim, but I'm still not at all comfortable with him being in the pool alone. I have no idea when he figured out how to open the gate, but it's definitely time to start locking it. At this point he still thinks he has to have a swim suit on to go swimming, so I don't think he'll attempt anything unless he's already suited up, but we're not taking any chances. Tonight Reagan has been all smiles. The kind of smiles just make you just want to squeeze her! What an angel! Despite the poos, it definitely seems she's taken a turn for the best! Hoping for a great day tomorrow for my princess. These smiles just won't quit!

Friday, September 2, 2016

Sensitive with a side of gas pains

Last night we all slept well (thank goodness) and when I woke up at 5am to go running, Reagan was still asleep. Not 5min later, she was agitated and vocalizing. I went in and changed her diaper and gave her some medicine and she fell back to sleep. She was still asleep when I got back from my run and she continued sleeping until about 8:30am. She was serious but calm. Definitely not a fan of us talking. Thankfully she's peeing on her own today so that's one less thing to worry about. After Ryan went to school, we took another nice long walk through the neighborhood. It was a little overcast today and much better for my girl's sensitive eyes (and not quite as hot). We made it 2.1 miles (that's 9.06 total so far toward our marathon). Reagan was great...except when we were talking too much. She doesn't mind letting us know! When we got back home, she preferred to be held by the nurse rather than lay down (we were calling it the "Tina chair"). She definitely seems to get increasingly agitated and close to crying every time she has gas. Her tummy must really be giving her some trouble! She did the same thing tonight, getting increasingly agitated until I picked her up and held her, where she eventually dozed off in my arms. Sweet girl. I hope she feels better tomorrow.