Sunday, January 31, 2016

A good day for a walk

Today was another great day for my girl. She woke up still calm and collected and since we were nurseless today, we decided to go on a family outing. We drove downtown and went to the hike and bike trail around Lady Bird Lake. It was such a beautiful day, half of Austin was there as well enjoying the weather. It's such a nice path around the lake. Perfect for a running three year old and perfect for my big girl in her chair (of course Ryan kept veering to the middle into oncoming traffic)! We walked for a while and then turned around and walked back. We were hoping to eat somewhere nearby, but everything was PACKED! We ended up taking a nice drive and finding something to eat along the way. We stopped at a Mexican restaurant near lake Travis. We noticed some singers when we walked in, but they were pretty quiet...that is until they started walking around and then stopping to sing at the table beside us! Well, my (up until this point) completely calm and collected girl, decided she was not a fan of the singing and started to get vocal. Mike had to run out to the car to get her noise canceling headphones and that helped her settle down (that and the fact that they stopped singing shortly thereafter). The views driving through Austin are breathtaking. Seriously, we still feel like we're on vacation getting to look at this every day. We even decided to take the long way home around the other side of the lake, just to take in a little more scenery. Ryan dozed a bit but Reagan was awake the entire time. Still very calm and relaxed. Our night was similarly laid back. We just hung out and enjoyed this sweet girl.

Saturday, January 30, 2016

Still chill

Reagan had a good day today. I think she slept but woke up fairly early and then just laid in bed quietly. Today she's still very relaxed and calm, but also laughy and smiley. Her hands have been well behaved and usually down by her side. Still very chill! Which is good when you have a brother bouncing around you nonstop! Tonight I got in some good snuggles with my girl. She just melted right into me. Giving me little giggles here and there...boy was she precious! Sleepy eyes, but not falling asleep. She was actually really fighting it. Even Daddy was having a hard time getting her to fall asleep. Finally I gave her a half a clonidine and eventually she dozed off.

Friday, January 29, 2016


Reagan slept well last night and woke up this morning super sweet and super calm. She had speech therapy an hour early this morning so we could leave in time to head downtown to her drs appt with the pediatric reproductive endocrinologist. I dropped Ryan at school and then came back and we loaded Reagan into the car. She was still pretty flat this morning. Not serious, but solemn. Hard to get any response out of her. This is a new doctor we're seeing as we weren't totally happy with her previous endocrinologist and this drs specialty is the exact reason we're seeing endocrinology, so it seemed like a perfect fit. Plus she came highly recommended by Reagan's neurologist...apparently he sends a lot of his seizure kiddos to her. We really liked her. As Reagan's nurse said, "she's someone you'd like to have a beer with". She gets it. Yes, we do still have to wait and see...when the dreaded P word will show its face and how her body is going to respond to those fluctuations in hormone...but once it starts, she's fully on board with whatever we want to do to handle it. She said it's about 50/50 as to whether or not it will affect her seizure control. She also said she thinks we've still got a year or so before it that's a relief (hopefully she's right). So at this point we just wait. No need to check hormones again. We already know they're high. We'll just touch base with her when we need her (hopefully it'll be a while). She also referred to Reagan as very "chill" but looking oh so cute in her leopard print! The rest of the day we just took it easy. A little too easy maybe! She fell asleep just before her teacher/vision therapist were about to come and then slept just long enough to miss her window of opportunity for school! Silly girl. She does that a lot. She was really great the rest of the day/night. Super laid back and sweet. Fell asleep on her own tonight no problem. Hoping for another good night's sleep tonight for my girl.

Thursday, January 28, 2016

So mellow

Reagan had a surprisingly good day today...we were a little worried after the freakout she had last night before bed. She actually slept well last night and woke up this morning still a little startled/tense but really mellowed out as the day went on! She's had a very laid back/calm sort of day. Very still. Very solemn. Her nurse and therapists have tried all day to get a laugh or smile out of her and she's just been a tough crowd. Not cranky in the least...just not impressed with anything we do! This morning she had PT, they got her up in the stander for a bit, but no smiles! Then this afternoon she had OT. She was looking a little groggy at the start and then halfway through just passed out cold mid stretch!! Sweet girl! So much for school! She took a good little nap and woke up just late enough to miss her window of opportunity for school! She stayed awake (and super calm) the rest of the night...even while her brother had a major meltdown when he woke up from his nap (he never naps anymore but when he does, he is NOT a good waker upper). Grandpa came over to lend me a hand with the boy since we were left nurseless tonight and Mike was out late with customers! Ryan's mood immediately improved once Grandpa got here and I was able to give Reagan some attention. She eventually dozed off in her chair around 10:15pm and Daddy moved her to her bed when he got home (and laid down with her for some snuggles). Something tells me she's going to sleep well tonight! Sweet dreams my princess!

Wednesday, January 27, 2016

A little on edge

We left Reagan in her tomato chair last night to sleep (because of the nausea)...not sure how much real sleep she got. Mike got up with her in the middle of the night and he said she wasn't sleeping but she was SO precious. Sweet girl. This morning the nausea seems to be gone (thank God). She's been a little tense/on edge, but good. She had speech this morning and she did well with that, but again, a little easily stimulated. Tonight she did lose it once when Mike had just gotten home and we were talking. The talking was not appreciated and the tears began to flow. She eventually calmed down and was OK the rest of the night, well, OK until I gave her clonidine to try to help her go to sleep! She had the worse adverse reaction to the clonidine that I've ever seen. Kicking, flailing, biting, thrashing (which is all common of these episodes), but also screaming and crying (more screaming than crying). Very strange. This went on for 30min or so until I finally gave her oxycodone. Within 5min, she was asleep! I don't know how this bodes for tomorrow but I sure hope she wakes up feeling better! As of now she's sleeping peacefully in her bed! Lets hope she stays there!

Tuesday, January 26, 2016

Still gaggy

Sleep last night was not good for my girl. She spent the entire night sitting upright in her tomato chair (I was too scared to leave her laying flat), but I'm not sure if she slept at all. I think maybe a little here and there, but not much. Mike got up with her at one point during the night and said she was just as sweet and cute as can be! She was asleep when I got up to run this morning but was already back awake when I got home. The nausea definitely seems to come in waves. She'll be fine for a while and then all of a sudden she gets super gaggy for a while. She's had a busy day of therapies and she did pretty well with all of them considering. She had PT this morning, followed by OT this afternoon, and then school/speech...a busy day for a gaggy girl. This afternoon the nausea really picked back up again (right before the nurse left). She tried to give her some clonidine, knowing that she hadn't slept all day and hoping maybe she could sleep through the nausea, but it was very short lived. What I noticed tonight is that she seems very low tone, her arms are very still, which could also mean she's having a much harder time controlling her secretions! Poor thing. She's just been so sweet and so beautiful again today. Really hoping she can sleep this off tonight and wake up feeling better tomorrow and the rest of this week!

Monday, January 25, 2016

A little sensitive and gaggy but sweet

Reagan woke up this morning around 6am kicking around in her bed. She had a small poo diaper so I changed her and then tucked her back into bed, hoping she might go back to sleep. No such luck. I laid back down but I don't think she ever went back to sleep (although she was a little less vocal now that she was clean). I got up around 7am and moved her into her therapy room and got her talking brother out of bed as well. I'm definitely sore today. Definitely feeling those 13.1miles in my back, hips, & knees! Reagan was a little sensitive this morning to talking but seemed to loosen up a little as the day went on. She was also gaggy/spitty throughout the day but it seemed to come and go. Her speech therapist came this morning and took it a little easy on her but they actually had a really great session! She was very interactive and not too easily stimulated, even giving her therapist lots of cute smiles, but they kept things pretty low key and worked on the ipad instead of the eyegaze. This afternoon her OT came for a make up session and they did some stretching on the floor as well as some work on the ipad. She was a little gaggy at first, but that went away and she was fine the rest of the session. Not sure what's going on with the gagginess. She's a little spitty/swallowy and making lots of gaggy/open mouth faces and it's gotten worse tonight (which seems to be her pattern). Absolutely nothing is draining out of her g-tube, but she's very spitty and constantly making herself choke/gag. Ugh. Sleep tonight is not looking good. But she's just so sweet!!! Big huge eyes and smiling away! My poor sweet girl!

Sunday, January 24, 2016

Race day...sweet but a little sensitive

Today was the big first half marathon the Austin 3M Half Marathon with the slogan "Downhill to Downtown"! I did not sleep well last night, but it wasn't Reagan's fault. Nerves and my sleepless husband kept waking me up! I left at 6am (Daddy, Ryan, and Grandma were still here) and Reagan's nurse came in an hour early at 7am. The race started at 7am. Grandma headed out and met us around midway with her crazy Christopher Walken sign (which is funny because we run/ 5min/walk 1min and we just happened to be walking when she saw us)!! It wasn't all downhill as promised and the hill at mile 9 just about did us in, but we kept pushing through and made it to the finish line no problems (the furthest I had ever run in training was 13.1 was my all time furthest distance)! Grandma and Mike/Ryan were at the finish (although Mike missed me and didn't see me cross the finish line)! Grandma made cute signs for everyone to hold! Including my girl! We took a pic with her sign as soon as we got home. I wouldve loved for her to have been able to come, but it was way too cold and loud for her liking (there were 6500 participants). But she had a pretty good day anyway. She was a little crunchy, hands in the mouth and hair a lot, but still super smiley and sweet. Still pretty vocal too. Tonight she was a little more sensitive and was moved to tears once with all of her brother's noise and commotion. She regrouped quickly though and did better once out of the room with him. Sometimes brother's just be crazy!! We've definitely noticed huge improvements in her cough/runny nose ever since starting the nasal spray and that's a huge praise. One less thing to worry about. Hoping for a good week this week for my girl!

Saturday, January 23, 2016

Vocal but good

Reagan had a good day today. She was up early again this morning...maybe she was just excited to see Grandma! She was pretty vocal today. Very animated, big eyes, super sweet. Thankfully we had a nurse today because Daddy worked most of the day and I had to go to the convention center to do my packet pickup for my half marathon tomorrow! Definitely getting a little nervous. I've been training for this for months, and I'm prepared, but it's a little nerve wracking that it's finally here! It was pretty cold/windy today, and we had wanted to get out to take a walk or something with Reagan, but just never did. It was probably a good thing though, because she did seem to have some sensitivity to air blowing on her today. Otherwise, she was great and other than constantly trying to shove her hands down her mouth, it was a good day for my vocal girl!

Friday, January 22, 2016

Sleepy poopy day

Reagan slept OK last night but she was up and at em pretty early today (along with her brother). She was still pretty tense in her body but calm and a little groggy . She ended up dozing back off and sleeping for quite a while. Her speech therapist came and worked on some choice boards on her eyegaze computer so all was not lost. She woke up this afternoon but was still looking sleepy and then proceeded to have a huge blowout (followed by yet another one). We thought we were done with these Augmentin poos! :( Poor girl! And poor nurse, she was here alone and had to fend for herself (not an easy task)! We did do a bath shortly thereafter, so at least she's clean now! Hoping for a good weekend for my girl! Grandma comes in tomorrow and my half marathon that I've been training 6 months for is Sunday!

Quick trip to the aquarium after a good day at school!!

Thursday, January 21, 2016

Sleep all day and new stander

Reagan slept well last night and woke up smiley but super crunchy this morning. Hello tone, welcome back (not). She promptly dozed back off and then just continued snoozing! Her physical therapist was on her way as well as someone from the DME company with a demo of a new stander. We had to wake her up. She was very slow to wake up, but she finally did (in the process of carrying her downstairs and putting her AFOs on). She was SO crunchy and tense we really had to pry her body apart to get her into the stander! We tried her first in the Easy Stand Sit to Stand Bantam (medium). It's a big black ominous looking thing (why can't they make it in pretty colors?). We really like the idea of being able to put her in it in a sitting position and then slowly move her up to standing (in the same way that you would go from sitting to standing...rather than laying out flat on her back and being flipped into an upright position). We also really like the option of having her in a standing position and then being able to lower her back into sitting for breaks off and on during an activity (like during school, speech, or OT). It could essentially replace her wheelchair that we currently use upstairs for those activities and we could then have the freedom to bring that downstairs and use it as an alternative sitting position to her tomato chair. It will give us so many more options...we were sold! We actually didn't even bother trying the other (traditional style) stander he brought! So now the wait for insurance approval begins. Other than that, not a lot going on today. Reagan dozed right back off as soon as we were done and then she essentially slept the rest of the day! She only woke up once, this afternoon when her nurse was trying to get her to pee (she only had one wet diaper all day), and she woke up with a vengeance! Lots of coughing. She basically went into a 30min coughing fit and had a bit of a panic attack because she was having a hard time breathing. Her nurse eventually got her back to sleep and she slept the rest of the night! We transferred her to bed around 10:30pm and she never moved a muscle (thankfully she did have one more wet diaper). Hopefully she sleeps tonight after sleeping all day!

Wednesday, January 20, 2016

Super smiley, coughy, snotty, gaggy!

Reagan didn't sleep as well last night. She was pretty restless and both she and her brother were both wide awake by 6:30am. She was super sweet though and super smiley. We had to cancel speech on account of a 10:30am appt to get casted for new orthotics. It was a perfect day for it. With her still so still and relaxed, it made it easy for everyone involved. She was still a little gaggy/chokey this morning, but so sweet and so laid back. The crazy thing, while we were there I looked back at the blog to see when exactly she got casted for her last pair of AFOs, it was about two years ago and she was almost exactly the same that day (very still/relaxed, smiley, and had even thrown up)! Crazy. Everything went really smoothly and we were in and out of there fairly quickly. The only thing that seemed to excite her a little was how windy/cold it was outside (similar to yesterday). She was a little more coughy today and definitely having problems managing her secretions (oral and nasal)! Poor girl! This respiratory junk is really wreaking havoc on her. This low tone is a double edged sword, while it's great to have her so relaxed and still, it also makes it much harder for her to handle her spit and the snot! Tonight she was really having a hard time and the nausea picked back up again so between the nausea, coughing, and nonstop spit/snot, she was really suffering...but smiling away and making great eye contact all the while...poor sweet girl! Finally we got her to just doze off with the help of clonidine and she's asleep in her chair (we're afraid to lay her down), so now we're just praying she can sleep though the night and wake up feeling better!

Tuesday, January 19, 2016

Still calm, still still

Reagan had a good day today. She was still sweet and calm so we decided to take advantage of that and we made a quick run over to the optometrist's office down the road to get her glasses fitted. It was a perfect day for it, her hands are still so relaxed, we didn't have to worry about her grabbing at them at all. She wore them all the way home no problem! The only thing she was a little sensitive to...the wind! It was particularly windy as we were unloading and loading her back up into the car (she was also getting a little over excited by the UPS truck next to us), but other than that, she was perfect! I did have a bit of a panicking moment as we left because I thought I had locked us out of the house, but my keys had just fallen onto the back floorboard so all was good. We got back just in time for PT and did some stretching downstairs before going upstairs to do a little more work kneeling. After PT she had OT and did well with it but she's still just so low tone, it definitely limits what she can work on. Then this afternoon she had school/OT. Again, she tolerated everything really well, but she did seem a little sleepy and not super into it. She's been a darling girl again today. So calm and so still. Tonight she did have one seemingly random throw up. I really feel like it might have been triggered by all of her sinus drainage but who knows. She seemed to get a little more gaggy the later it go, so I did go ahead and switch her over to pedialyte. Hoping she can sleep tonight and wake up in the morning nausea free! 

Reagan's hands were as red as a lobster (and super hot)! Definite dysautonomia!

Ryan's getting in on the glasses action! (Wearing Grandpa's glasses!)

Monday, January 18, 2016

Calm and still

Reagan slept well last night and woke up this morning very calm and still (and yes soaked through again but no blowout). She had a little more coughing first thing this morning, but in general her coughing has been better today. Nose has been less runny too! Hopefully that means she's on the mend? Still having watery poos, but not as bad as yesterday and no major blowouts today so that's good! Only one therapy today, speech this morning. Reagan was a little drowsy but participated with minimal prompting! She's been a real sweetie today. A little serious but she'd laugh if I tried hard enough. Super calm and still. Love seeing those hands relaxed and not shoved down her throat or in her hair! Hoping she continues to improve and has a great week this week!!

Brother thinks he's an acrobat!

So cute touching her bear! (Note the one red ear! Always that right ear.,She gets this from time to time...dysautonomia.)


Sunday, January 17, 2016

Poo poo palooza

Reagan slept well and woke up much more calm. She woke with a wet diaper (thank God since she only had two yesterday) but also a bit of poo. As it turns out, that was just the beginning. After changing her and getting her in her chair, she dozed back off for a while. When she woke back up, she was wet so we went to change her. Boy did we get a surprise! Poo everywhere! Literally everywhere! Her clothes were soaked, her chair was soaked, and it was even dripping down onto the carpet! Super watery. Such a mess! The doctor had warned us the antibiotic she was on (Augmentin) might do this. We decided to just go ahead and put her straight into the tub! We got her all cleaned up and then proceeded cleaning up everything else. What a mess. Her nurse picked her up and held her for a bit and then realized she had gone again! Through her pants! We decided next go round to just avoid pants and put her in her chair on a pile of pads. The next several wet/poos she had were not as big and didn't leak! Thank goodness because that first round was enough to keep us cleaning for hours! She's been very laid back and calm today, which was another blessing, making it much easier to change her. Other than the poo, she's been pretty darn precious, still coughing a lot and dealing with a constant runny nose, but she's a trooper! Love this girl. Hoping she has another calm day tomorrow but less poo please!

The quiet before the storm! 

There's a Dada in there somewhere!

So relaxed...look at those hands! 

And those hands! 

Saturday, January 16, 2016

Super tense...not happy being sick

Reagan slept well last night and woke up this morning still calm. However, as the morning went on, it was clear she was very agitated. Very bitey, lots of swiping at her face/nose. We're having to keep her arms in restraints to try to keep her from rubbing her poor little nose raw (it's already very red). Poor baby. She's miserable. Her nose is runny (even a little bloody) and her cough is constant and she's just not happy about it! We've had to give her meds off and on today to try and help her sleep. That's the only time she's calm/relaxed. She's so tense, in fact, that she's only had 2 pees all day! One was the one she woke up with and the other we had to use the warm water method to finally get her to go! Tonight I tried to hold her and she was just thrashing and flailing all over the place! I was just trying to hold her to give her a different position (since she's pretty much been in her chair all day today), but it was impossible. Daddy had much more success. He came and picked her up and took her downstairs. He was able to hold her in a more secure way and she finally relaxed a little for the first time all day! She's asleep in her bed right now...hoping she can stay that way. Whew! What a day!

Friday, January 15, 2016

Crazy high temp but better

Reagan slept well last night and even woke up calm this morning. The only problem was...she woke up BURNING up! I immediately went and grabbed the thermometer and check her temp...104. She was radiating heat, so I knew she was probably even hotter than that. I gave her a dose of tylenol and then grabbed the rectal thermometer and got a reading of 105.8!!! That is the highest temp she's ever had! I immediately stripped her clothes off (which, by the way, were way too heavy) and started running her a lukewarm bath. Her temp was already starting to go down a little when we put her in the tub. Thankfully by the time we got her out and dressed her temp had come all the way back down. Whew! That was scary for a bit. On a good note, she did get a much needed bath first thing this morning. She also seems much more calm and relaxed today (even giving us some laughs through all the coughing). Hopefully that means we're in the clear as far as bad days go. Yesterday was pretty brutal. Today (other than the scary temp issues this morning) was pretty relaxed. Speech and school even came today. Speech actually went pretty well, her therapist said she was the most attentive she's been all week. School was OK. I think she was pretty tired by the end of the day so she just wasn't super into it but she was good. Her temp did start creeping back up tonight (100.3) so I gave her some tylenol and it immediately came back down. The coughing is definitely worse today. I'm nervous as to what that means for sleep tonight. I just really hope she can fall and stay asleep tonight! Please continue to keep our girl in your prayers.

Thursday, January 14, 2016

Miserable girl (sinus infection and gunky cough)

It was a horrendous night last night. Just awful. Actually I had asked our nurse to come in today from noon-10 so we could go to a dinner for our Bible study group, but I had to text her first thing this morning and just ask her to come in ASAP. Reagan was up all night crying off and on (mostly on) which meant none of us slept. We did keep her in her bed for most of that, but I'm afraid it just allowed her sinus drainage to pool up in her throat and this morning her cough is WAY worse. She did finally sleep for a little better stretch this morning after a dose of clonidine and being moved to her tomato chair. So I immediately called the doctor and made an appt to take her in as soon as we dropped Ryan off at school. She did have a slight 99.1 temp. Her doctor concluded that her lungs still sound good, but her nose is a mess. Definitely a sinus infection. To make matters worse (poor girl), they swabbed her for RSV and the flu (which feels like they are swabbing your brain from your nose), but thankfully both came back negative. So they put her on Augmentin and we're just supposed to watch her. Not really sure why there's nothing they can do for her breathing-wise. I know how bad I still feel with a cough and tightness in my chest, I can't even begin to imagine how awful/frightening of a feeling that must be for her to feel like she can't breathe! Ugh. I feel so helpless. I just want her to feel better. She was pretty miserable, but slept most of the way there and back. Once home, it was back to business as usual. Crying nonstop while awake. Pain meds are helping, but only for 2hrs or so and then she wakes back up crying again. I think we've actually hit the lotto (no not the powerball lottery we all wished we had won) but the super rare occurrence of a superimposed "bad day"/sick day. Not good. Not good. Really hoping she can get past the bad days so we can just focus on getting her well. My poor baby. Please keep her in your prayers.

Wednesday, January 13, 2016

Not better, but much worse

Reagan slept well last night and woke up this morning fever free. She seemed a lot more calm and relaxed this morning. Less crunchy and into her hands than I've seen in days. I really thought maybe she was turning a corner. She had speech at 10 and that definitely went better than Monday's session. She spent a good amount of time in her AFOs and tolerated that no problem. However as the day went on, she started getting more agitated. She's sounding a little congested/gunky in her throat and she's coughing a lot more today. I do still think she's having tummy pains. Her tummy was making all kinds of crazy noises yesterday and today it's a little distended and she's still having a lot of gas. I tried to help her "go", but her motility just isn't moving things along. Then this afternoon, I could definitely tell she was super sensitive to us talking. Every time the nurse would try to talk to me about something, Reagan would start to get more vocal and teary eyed. Eventually she burst into tears and that was it. We tried Lortab first. She eventually fell asleep but it was a very restless sleep and she kept moaning and thrashing about (all the while keeping her eyes closed). My poor baby. She just does not feel well. Her little mouth and lips are all dry. She's pale and crying this sad cry. She's miserable. The rest of the afternoon/night was the same. Very restless. Super miserable. Tonight we're going to attempt to get her to sleep in her bed...she's been in her tomato chair all day so I just can't stand the thought of her in that same position much longer. Not sure how it's going to go but we all sure could use some sleep! Please keep her in your prayers! 

The calm before the storm (this one was from this morning)...